Busily Seeking . . . Continual Change

ACGT, or genomes & language & coding & clues

2012-01-26T14:35:00.001-05:00

When I was a child, my dad worked for IBM in Essex Junction, Vermont. Of the several routes to the plant, which covered (and still does) acres and acres of land, my favorite ran alongside the bending path of the Winooski River until a left-hand turn by the large black sign brought us in, past a playground that might have been for IBM families (or not) and into the seemingly identical series of smaller streets among the beige brick and steel buildings. IBM was a gated city within a small Vermont town that had a single major intersection to its name.

The playground feels important because that was the fun part of IBM Family Day. Once a year, the company allowed us past security into the linoleum-tiled hallways to see the computer through a bank of windows designed for that purpose. THE computer, as there was only one and it occupied the perimeter of an enormous room that no one could enter unless they wore certain shoes and maybe hairnets. Most of what I saw at home was residue from the computer as Dad brought back some of the vanilla-colored punch cards that either drove its operation or were the output of its operation and we kept them by the phone to take messages upon. The cards had patterns made of small rectangular holes, clustered in various areas like a non-infectious disease.

The computer looked much as one might expect having watched many episodes of Star Trek: flashing lights and dials and pieces that looked like the wheels of giant tape recorders or film projectors spinning black shiny material clockwise and counter-clockwise. People who looked either vaguely scientific or somewhat business-like monitored what the computer did, which was buzz and spin and light up and spit out punch cards. Also reams of special paper connected continuously at the seams with perforated lines and perforated edges that attached marginal strips with evenly spaced holes to guide the wheels that turned the paper through the computer and its associated machines.

None of us really cared that much about seeing the computer, mainly because they wouldn't let us into the room and push the buttons ourselves, but we made an effort to be impressed because my dad found it so exciting to show it to us.

The laptop I'm typing these words upon probably has more functionality than that room full of metal and tape and paper and blinking lights. And the smart phone I hold in my hand has a significant fraction of the power of this laptop. The future comes toward us in ever smaller packages, the workings of the machines hidden from us by layers of software and shiny protective cases.

In mid-January, we made the drive to Baltimore to see Dr. Hamosh, the Hopkins geneticist who will guide us through the process of genome sequencing for Robert. So we made the familiar vehicular descent into the city on I-95 via that series of Jetsons-style elevated ramps above the marshlands of Baltimore Harbor, swooping past the clustered skyscrapers and into the heart of the medical campus, finding the right turns to the proper garage. The pediatric genetics clinic was accessed through the garage, through a series of doors equipped with big silver buttons for the handicapped, doors that felt like a series of airlocks into a space shuttle, when, actually, we found ourselves in a spacious waiting room the chief aspect of which was lack of windows.

We were in a basement, which seemed quite apt as, at this point, we don't know where the hell we are with diagnosis to begin with. Return to start, do not pass Go, do not collect $200.

Dr Hamosh is a brilliant researcher, scientist, doctor, whom I genuinely wished my daughter could meet, but Edith insisted that she had a mid-term exam and looked at me cross-wise when I tried to explain to her that I had infinite powers with the school to excuse her from such clap-trap so she could have a tutorial in genetics research and applications. In short, Edith did not believe me, although I believe my powers to be actual, probable superpowers of parental insistence and persuasion.

While I have long resided in the land of disability and neuro-genetics, a land governed by the simple tenet that little is really known and cause and effect are, ultimately, suspect, I admit to having certain simplistic understandings of what a genome is and what sequencing a genome involves.

Genes march two-by-two in chromosomal pairs like a biochemical Noah's Ark, right? Mendelian genetic theory, the monk and his pea flowers, in which floral characteristics obey some assuredly Darwinian logic in which dominant genes overpower the effects of recessive genes. Yes, sure, but also, not quite entirely.

All of the above, Mendel's tiny Xs (and in males, one lone Y) and their possible whole duplications and deletions are what can be seen under a high-powered microscope. We can now also perform DNA analysis with microarray, which allows us to see regions on each chromosome that might be variants, defects, duplications and deletions. Robert has had both of these analyses and he has no wholesale replication or absence of his various Xs, and no obvious defective regions (or add-ons) in the microarray analysis. One of my cousin's children was successfully diagnosed using basic DNA analysis, and another cousin's child was diagnosed using microarray.

Which, for Robert, leaves genome sequencing, an analysis of the four biochemical building blocks of each gene along each chromosome: adenine, cytosine, guanine, thymine, or ACGT. The patterns in which these letters are found can be interpreted to detect defects, deletions, additions, reversals, substitutions, repetitions, any of which scenarios may cause a shift, small or large, in the signals that initiate, maintain, or regulate biochemical processes. And, in turn, these biochemical processes as they build one upon the other, allow me to move my muscles, think, and type on this computer, among other tasks.

Genetic defects can be inherited, as in the Mendelian theory we all learned in high school biology, in which chromosomal replication creates gross (or subtle) problems during the earliest stages of reproduction and cell division. A fetus receives two, say, chromosomes 19, one from each parent, but each contains a recessive gene for a certain disorder not present in either parent as each parent's health is protected by a "good" X chromosome that corrects and takes over the directions issued by the faulty member of the pair. Chromosomes have co-dependent relationships, covering for each partner's failings.

Genetic defects can also occur spontaneously during the course of gamete replication in either the male or the female, or they can occur spontaneously during initial recombination as the gametes merge and reproduce. Some researchers even think that defects can occur over time in certain genes and the function of certain organelles as the messenger RNA makes errors transcribing from nDNA or mtDNA code. Remember, the mitochondria, which produce all of an organism's energy, have their own strand of DNA.

Time for an analogy. The best one I have is with computers. Gross chromosomal defects are like missing an essential program for your computer--or having duplicates running at once interfering with each other's signals and commands. All of a sudden, when you want to convert that Word document to PDF, Adobe Acrobat fails to comply. An error message results. No more PDFs for you.

Defects that can be determined through microarray analysis are like examining the command prompts that compose a computer's underlying operating system--DOS (disk operating system) ran (or still runs) PCs, and iOS runs Macs. On a PC, you can usually locate the program that reveals the DOS window and glance at the command prompts, issued in a string down the screen, that are causing the machine to function or malfunction. One of these coding languages was called ASCII, but I believe other languages are in use now.

Underneath the operating system is the actual computer code. All computer code is ultimately composed of the numerals 0 and 1, arranged in infinitely complex patterns, all of which make perfect sense to the computer, unless, somewhere, an incorrect string of them is embedded, or a programmer skipped a 1 somewhere or accidentally inserted an extra 0--for example. I'm sure I have some details wrong, but bear with me, analogies may contain imperfections, or they wouldn't be analogies, they would be some sort of higher level truth.

The future is handed to us in smaller and smaller packages. Some people say that good things come in small packages.

I say all of the above, all of it, to prepare you for what comes next.

Robert's blood was drawn without complaint from him by a phlebotomist, her office swelling with the strains of gospel music emanating from a small radio, racks of glass vials with color-coded rubber stoppers on shelves. Robert's caps were purple, as we those of mine and Roger. Our blood is being sent to Baylor University this week, where Dr. Hyland's lab (the neurotransmitter expert whose tests blew up the little shack constructed of diagnostic hypothesis we'd inhabited for many years) will perform whole exome sequencing on Robert's genome.

Each chromosome is composed of exons and introns, exons being the known coding area of the gene, and introns still tenuously referred to as non-coding regions of the gene. There are also transitional areas between exons and introns, as well as regulatory zones on each end of the chromosome.

Here is where I remembered Mrs. Lewis, as we settled into our seats for AP Chemistry in high school, telling us that everything we'd learned about electrons and molecules in regular Chemistry was taught to us deliberately wrong. We told you half-truths so you might understand.

Or, we might say, each set of scientific theories is like tract homes rising from a plain of newly cleared land, only to meet the fate of rapidly constructed living space--leaky roofs, badly sealed windows. Sometimes the contractors go back and try to repair their mistakes, sometimes they move on to the next project.

You see, introns are now suspected of containing genetic directives, as is the transitional area. Once, geneticists called introns "junk" DNA. I have a chromosomal variant on one of my chromosomes 20--a little "arm" that projects from a non-coding region, discovered when amniocentesis revealed that Edith had it. I was told that no one thinks this odd little piece of material does anything, or at least causes any disease, maybe, probably. I am the canary in the coal mine who continues to function much as a typical human being does. But who really knows what that mysterious arm does?

Regardless, we will not sequence Robert's introns. Why? Exome analysis will yield thousands of variants in the ACGT sequences in anyone. A computer will rapidly compile the hundreds of thousands of protein "letters" in Robert's exons and then do a sort of some kind by variety of error/defect. Then actual people need to sit down and pore over this data, not simply read it, but interpret it. Like the 0 and 1 sequencing of computer code, ACGT is a language, and all languages may appear at first to tell us absolute and blunt things, but any writer knows what substituting a verb can do to the meaning of a sentence, and any copy editor lingering over the best arrangement of clauses and phrases, the placement of commas (which are like punctuational variants), any copy editor knows just how imprecise and how variable language can be.

Yes, it all seems simple. Newspapers tell us that researchers have sequenced the human genome. At last! A template to which to compare Robert. But first, his little coding blips need to be compared to the letters in the same place on my genome and Roger's genome--if we have these blips, how do we interpret whether or not this variant causes or will cause disease?

And, I hate to tell you, but human beings are works in progress. Just because we think we know what the human genome is now means nothing. In 200 years, as DNA and RNA and gametes and the human sex drive do their day-to-day jobs, the genome will evolve to look somewhat different than it does now. That's right: any variation my family line encodes may simply be the next itty-bitty step in natural selection. And natural selection steps both forward and back--nature a vast experimenter, much like a three-year-old deciding it would be fun to dump nail polish into dish soap and see what happens. (If, in fact, as the genetic counselor cautiously probed my limits and biases, you do believe in evolution--cue the gospel music?)

Let me return you to Robert's neurotransmitter metabolites testing. In 2004, the first data we ever had on Robert's condition showed abnormalities!! At last, if not a diagnosis, a framework in which to place his movement disorder. In 2011, this test was returned to us saying that, in fact, everything looked normal. At our appointments with Drs. Gropman and Hamosh, we learned that, in fact, the two tests came back with exactly the SAME data, but now, seven years later, Dr Hyland knows that these results are common in children with neurological problems. No big deal.

And this is, really and finally, why we will not sequence Robert's introns. Researchers do not thoroughly understand intron coding, nor by what mechanisms intron genes are called into action, nor what those embedded ACGT sequences really mean. I could ask them to do it--it would cost more--but it might be a wasted effort. Whatever data we collected, whatever catalogue of defects we thought we had compiled might, in the end, be skewed as researchers, like developers in the heyday of the real estate and mortgage markets speculated only to be proven wrong in the end. And we'd have to do it over again.

I thought about all of this complexity this morning as I confronted my fears about what I was beginning to assume was a major plumbing problem behind the (gulp) drywall of our family room. I heard a dripping, a loud dripping, so loud it sounded like popping, just after the shower began running, just after water ran in the sink, just after the tub drained. It didn't happen just when the water ran, it didn't happen at all when no one was drawing water--water had to be draining, which eliminated water intake valves and pipes, and pointed to the PVC drain pipes, the main drain stack. But, maddeningly, I could find no evidence of water leaking anywhere: no damp spots, no swelling between the boards of the hardwood floors.

I envisioned Tom, our plumber, cutting open the drywall and imagined the expense not just of the plumbing repair, but the plastering, the painting, the reconstruction.

I called Tom, who is, frankly, a plumbing genius. He said, it could just be expansion and contraction of the pipes as hot water runs through and drains. Fill the sink with cold water, he said, and the tub. Then let it drain. Call me back if you still hear that dripping.

I didn't have to call him back.

Shit--how one thing can seem like another, how we'll talk ourselves into anything. How confusing clinical diagnosis is without data and knowledge applied. How I was sure Robert had mitochondrial disease because the description matched so closely what my observations had been all these years. How convinced many experts were as well. How I tried to talk myself into having early signs of multiple sclerosis while Dr Gropman enumerated them for me as adult onset MS happens often with parents of children with Leigh's syndrome. How the medical data is edging away from that mitochondrial diagnosis, bit by bit. How a couple of weeks ago, as Dr Gropman told us about tyrosine hydroxylase deficiency, a defect just available in the last six months as a genetic test. How I looked it up on the web and, open-mouthed, thought, that's exactly it!

My comfort here is knowing that six or seven or thirteen years ago, when doctors described a new theory, even I could see the pieces that didn't fit. As my observations and the clinical diagnostic parameters of new syndromes are fitting more and more closely, I know we are getting somewhere.

In about 90 days, we'll get our first report on Robert's sequencing: a list of anything that is known or highly suspected of causing disease. About four weeks after that, we'll receive a catalogue of all other defects that appear to actually disrupt function within a gene. That we can save with Robert's medical records to keep tabs on new research. Someone, someday, will decide to investigate many of those. And we can be connected with them. Maybe we'll get the real McCoy--a hard and fast diagnosis. Maybe we'll get more clues. We'll rule out TH deficiency, or will settle on it. And all of it will point more and more to possible affected areas of the genome and our understanding of what IT is will come closer and closer to knowledge and clarity.

And we'll continue to be prepared as the future comes to us bearing gifts wrapped in smaller and smaller packages--maybe tied with ribbon this time.

I feel comfortable in Baltimore now because I can find my way out through its nexus of one-way streets. After the appointment in genetics, we drove to Fells Point to have a very late lunch. Fells Point and its cobblestones--"how everything is waiting to be found," I though idly and nonsensically while I stared out the restaurant window at the 18th and 19th century buildings still standing in the shadows of 21st century construction a mile or two away. How the structure of a city still waits in place for us at the bottom of a hill, near the harbor, which smells like the not-so-distant sea.

Shine on 'til tomorrow

2012-01-04T23:29:00.000-05:00

The number one song the week I was born was the Beatles' "She Loves You." Over the course of 1964, the Beatles held the number one spot for a total of 18 weeks, a little more than one-third of the year. Wikipedia points out that on April 4, 1964, the Beatles had the top five songs in the U.S.

The band's music was first aired in the U.S. at the end of 1963 when many stores didn't stock their music--when purchasing a record meant a trip to a store that sold them. A record, not a CD. The black vinyl that, in the years to come, you could try to spin backwards to hear the secret messages in "I am the Walrus."

The more I think about it, 1964 seems distant rather than yesterday. Even during my high school teaching stint in the late 1990s, my students didn't understand the phrase, "like a broken record."

I find it tempting to say 1964 was the year that "everything" changed, but I suppose one could make an equal case for 1963 or 1966 or 1968 or even any year outside the 1960s. On the Billboard charts, the Beatles share that year with the Supremes and the Animals, but also with Bobby Vinton and Dean Martin. Bobby and Dean were the music my parents listened to--they also owned many Herb Albert & the Tijuana Brass albums, including the one with the woman dressed only in whipped cream. My Uncle Glen--more than a decade younger than my father, listened to the Beatles. The age difference between Glen and myself isn't much more than a decade either. Even today, Glen gets a rhapsodic look in his eye if you mention the Beatles.

A video of "She Loves You," shows the Beatles playing a large venue somewhere in England in 1963: the stage comically bare--mics and a curtain divided into various beige and green tones. Ringo and his drums sit atop a stack of what appear to be amplifier cases, but maybe it's an elevated platform.

Frankly, on that bare stage in 1963, singing "yeah yeah yeah" (if you can sing that, you can sing the chorus to any early Beatles song)--on that bare stage, they look a little dopey. But young and dopey. And still kind of cool in a very minimalist kind of way. No fireworks, no big lights, no back-up singers and no significant dance moves of any kind. Girls scream and cry. The song still lights up some primitive center of my brain, its emotional core, reminding me what "young" feels like, even though Paul turns 70 this year. Even though I'm 7 years older than John when he died.

What catches my eye in the video are the looks on their faces, as if all this being on stage and girls screaming has been sudden in a way they can't yet fathom--when it's all fun, before the tedious parts of fame. Mostly, they're four happy guys on a stage projecting a confidence they could definitely get laid tonight.

Girls are screaming because "seeing" the Beatles live differs from "seeing" a live performance today. The internet would not have been explicable to persons living in 1964--even color televisions were rare (color broadcasting was not yet universal), and television itself close, but not yet ubiquitous. And the reception--remember rotating the rabbit ears while the black and white picture fuzzed crackled and blurred? Wait, wait, don't move your hand--I can see them!

My own family didn't possess a color television until maybe 1970, and my kids are entertained when I tell them about watching the test pattern on Saturday mornings, waiting for the broadcast day and cartoons to start.

1964: the year of the Civil Rights Act and the Higher Education Act. The beginning of troop escalation in Vietnam. For good or for ill, 1964 marks some bright line in U.S. history, one of those years people felt on the brink of something, something big.

Of course, I don't actually remember any of this. I'm an infant, right? While the Beatles had broken up by 1970, many of my friends and I were still fans of their music during high school in the late 70s and early 80s. I owned the White Album, and their red and blue greatest hits albums. Admittedly, some of us postured as bohemian throw-backs, "Let It Be," vying as an object of our teen melancholic angst with James Taylor and Simon & Garfunkle. Pink Floyd, the Police, and Dire Straits may have been IT for some of my classmates, but not for us.

Which is the singular point of Woody Allen's recent "Midnight in Paris": we're all nostalgic for a time not our own. And we remember things like the Beatles and not monks setting themselves on fire in the streets of Saigon.

The number one song in 1997, when Robert was born, was Hanson's "MMMBop," a song I don't even remember. One of the Hanson brothers was 12 when the song hit the charts, which puts a different spin on "young."

Roger and I didn't feel on the brink of something in 1997. Video and photos of us show tired new parents, Roger with outrageously big glasses, looking even then as though he'd just stepped out of 1968.

I've been writing about the early days of Robert's sudden onset illness (1998), remembering details such as our landline phone on an outrageously long cord, typically a tangled mess, but one that allowed us, theoretically, to drag it almost anywhere in our 1100 square foot bungalow. I think I had an email account with AOL, but hardly anyone to email with. Computerized medical billing was relatively new and every department had its own stovepipe system, complications of which would be driving me mad by 1999. Electronic medical records were a gleam in someone's eye, and the xeroxes of Robert's medical chart from that time show two black circles where the paper was punched to fit over the twin metal prongs of the physical card stock chart.

And, as I've noted before, mitochondrial disease was thought to be a collection of illnesses related to a handful of genes--and Robert tested negative for all of them, even though his presentation fit those illnesses to a T. Now there are 27 known defects for Leigh's syndrome alone and Robert still tests negative for all of those, even though, 13 years later, a description of his ataxic breakdown matched countless other descriptions of Leigh's onset, as a top mito specialist told us in 2010.

My memories of June and July 1997 largely consist of sitting on a futon couch in the back bedroom of our house, its windows facing north and east. The light in the room where Robert first slept was very white and clear and clean and the room was painted white with a blue ceiling border with black and white cows and a green and white rug on the floor.

Roger and I entertained ourselves for most of a morning by lightly moving a sleeping Robert's lower lip to mimic movie lines--"it was Barzini all along" was our favorite, the 'L's drawn out long for comic effect, Robert conked out from nursing and the two of us knocked silly from sleep deprivation.

And she loves you, and you know you should be glad--

I don't remember what music I listened to during those years. It wasn't the Beatles. Suffice to say, my 1997 was like 1964. We were on the edge of something.

Maybe it's been said before, but the Beatles loom larger in a collective musical imagination than do the Rolling Stones because the Stones came to us fallen--from 1964 to 1970, many Americans lived the trip from "I Saw Her Standing There" to "Revolution 9" along with "the lads from Liverpool." From the early, tight, repetitive lyrics with their chromatic chord progressions to the diffuse, coarser sound with the strange lyrics and the harsh tangle of guitars.

From days when everything seemed to be moving forward ("I have one word for you. Plastics.") to the one image I remember from the evening news, people clinging to landing gear of the last helicopters leaving the embassy roof in Saigon. For part of that time, my family lived in Germany, where my father was stationed, and my parents remember living in increasingly empty military family housing while the U.S. papers arrived, days late, with headlines denying any troop draw-downs from U.S. bases to Vietnam--while new families arrived from the States only to be told their belongings were already on the next transport back and dad was on his way to the war zone.

Get back to where you once belonged--

Living in chaos has become familiar. We had no idea what was coming toward us, no more than watching a movie about a disabled kid on TV is anything like seeing him live.

Of course, it goes far beyond Robert and whatever his physical limitations have imposed on him and on us. The last few years as Congress and the political system have imploded into a snarling, incoherent mess, the economy has tanked, and healthcare is hardly accessible or stable--these last few years I've found it difficult to keep my footing. Not only did I never envision life with a disabled kid, I never imagined having to protect him through all of this social and economic chaos. You could say I'm waiting for deployment, but to where, I don't know. In time, my paperwork will come, handed to me, undoubtedly, by some stern figure wearing a uniform of some kind.

The front this week will be neurology: two appointments, one at Children's and one at Hopkins, both of them focused on diagnosis, or, rather, lack thereof. There will be an answer--right? As John's voice says on the album, now we're going to play Hark the Angels. Indeed, we will.

When I look over our medical bills, the EOBs, the various paper detritus of receipts and forms and discharge summaries of the last 13 years, which take up several large boxes in the attic and run close to four or five thousand pages (ok, that's just a wild guess, but probably not too far off), I do wonder--I do--if someone's out there saying why can't she just let it be?

A bad pun, I know, but an honest one. Most of this week I've been re-visiting the Beatles' music, not so much from nostalgia as from a broadening sense that the music is all about transition, a transition I know well, from playful exuberance to weary confusion and complication.

Will I ever be nostalgic for this time, right now, when I'm 64? Yes. Absolutely. I'll remember the times when my gaze connected with Robert's, and the way his earnest smile transformed his face. The Christmas break we spent watching movies all night, Robert's legs across my lap, head pressed against my shoulder and my arm around Edith on my other side. Trying to wrap the outdoor lights around a tree that had grown too tall for us to reach its upper branches.

And yes, I'll also remember our versions of the crowds in the streets, the panic at the gates, the tanks, all of that.

The last album the Beatles released, Let It Be, was actually the second-to-last recorded. Abbey Road was the last album they recorded. Abbey Road officially concludes with a song called, "The End." One of my cousins, or so I remember, took her favorite quotation from that song:

And in the end--
The love you take--
Is equal to the love you make.

Robert's genome sequencing: backstory

2011-12-29T19:30:00.000-05:00

Some number of weeks ago, I walked from my office the few blocks through the parks that buffer the Senate office buildings from Union Station. The bank, the Senate Credit Union, was my destination. To reach it, I walk past guard booths and gates that mark what are now, post-9/11, blocked-off streets--major streets, like 1st & C Streets NE, as well as parts of Constitution and Maryland Aves. When I was younger and worked in the Dirksen Senate office building, which is joined with the Hart Senate office building, which is where the bank branch is located, all of these streets were bustling with traffic: buses and cabs and private and security vehicles. I still find the relative desertion of these streets jarring, especially as the traffic lights have still not, a decade later, been taken down, still blinking one signal or another.

One public entrance to the Hart building is at the rear, on C Street, reached by a series of broad sweeping steps in a soft-colored marble. Senator Debbie Stabenow's office with the Michigan State seal is still to the left of the entrance, although I suppose the security guards would stop you should you try to veer left before leaving your bags on the screening belt and stepping through the body scan.

The security check point wasn't there in the spring of 1987 when I ran into this guy I kept thinking would ask me out, the two of us walking in different directions on the pinkish marble tiles in the ultra-modern building. When we stopped to chat (and, again, he didn't ask me out), just beyond the hallway was the nine-storey atrium, which, had we simply walked past one another, would have revealed with each subsequent step closer more and more of the enormous steel sculpture that seems almost jammed into the atrium the way one would force an unwieldy object into a closet.

The sculpture has been in the Hart atrium as long as I can remember: I have no memories of the space without it, yet it forms merely a backdrop to whatever it is I've experienced there, whether the event of those first awkward run-ins with the man I would eventually marry, whether the sighting of Senator Barack Obama (post-presidential campaign announcement and pre-Secret Service protection) walking round and round in circles in front of this massive steel triangular-ish 3D multi-sided black riveted head-craning objet d'art, ignoring it as well as he talked on his cell phone, but catching my surprised face with its mouth open wide in surprise was not too busy to flash me one of his enormous beautiful grins. I have also seen Senator Shelby of Alabama walking near this sculpture, also ignoring it, but Senator Shelby doesn't smile much and, when he does, it's unconvincing.

Usually I blow through the corridor, the full scope of the atrium to my left, the black heavy legs and base of the sculpture at the edge of my field of vision, and push open the glass door of the Senate Credit Union just at the opposite edge of the atrium.

This time, exiting the credit union, I decided I would walk round it--maybe I did that, once, long ago, but the thing about the Senate, the thing about Congress, is that everyone (or most people) feel the need to affect that perpetual busyness, that inner compass of absolute direction, that does not permit letting aimlessness surface, an aimlessness sort of ambulation necessary to absorb the impact of art. Which is to say, everyone walks with purpose by and around this sculpture and no one ever looks up.

Vaguely worried the Capitol police might ask me what the hell I was doing wandering the full perimeter of the sculpture, I did just that. Calder, I thought, walking up to it, it must be Calder. Of course it was: Alexander Calder, Mountains and Clouds. Designed in 1975, Calder delivered the maquette to the Architect of the Capitol in 1976, returned to New York and died the next day. The sculpture was finally completed in 1986.

Looking at the image of this sculpture on the web, you might be tempted to believe you can "see" it. You can't. As I said, it fills the atrium, and my first thought was that the whole thing is misplaced and needs a far bigger display space. Even backing up toward the wall and the elevators next to it, the viewer cannot take the whole thing in. The neck is bent upwards, the eyes shift back and forth, but, from the ground, one only sees the work in pieces. From the ground, the 4,300 pound aluminum clouds are visible by tilting the head back so precariously as to invite vertigo.

Perhaps that's the point. Not the vertigo, but the closeness and the fragmentary nature of viewing the piece. The mountains are always there, some sort of geological joke about eternity, and, clouds, ubiquitous, so often above our heads. But how often do we look? And what do we really see? Especially of things that are so much a part of a backdrop, an experience, a life, as to be, therefore, in their omnipresence, invisible?

And what does this have to do with Robert?

When I walked to the bank that day, I was, by late afternoon, to become extremely frustrated with our latest queries into Robert's diagnosis and treatments. But I didn't know that quite yet, the way one cannot see something very looming and large and beyond the scope of whatever the eyes will frame in increments.

At about 4 pm that day, I received an email from the genetic counselor for Dr. Gropman, Robert's neurologist at Children's Hospital. In October, we'd decided to repeat a neurotransmitter test we'd first done in 2003. This test, performed at a single lab at Baylor University in Texas, analyzes the byproducts of the metabolism of neurotransmitters found in cerebral spinal fluid. The analysis can tell you which neurotransmitters appear to be deficient, but it can't explain why: whether these neurotransmitters (which assist with chemical signals within between and among cells and organs, involved primarily with movement, but also aspects of cognition) are deficient between metabolism is faulty or failing, or whether the body cannot produce enough of them to begin with. Seeing the parts and pieces and bits, but not the whole structure.

In 2003, when we discovered that Robert was deficient in the byproducts of the metabolism of dopamine and serotonin and a couple of other lesser-known biochemicals, we were ecstatic. In 6 years of searching for any sort of data that would provide clues to Robert's profound illness and related disabilities, this test finally gave us something, something we could point to and use to frame, nay, lay a foundation for understanding Robert's problems. My son can't move well because dopamine helps to conduct the signals that enable fine and gross motor movements. My son responds to Sinemet because the drug gives the body the precursors to the manufacture of dopamine. My son can't repeat motor tasks indefinitely because insufficient dopamine re-uptake causes a faltering inability to make the same motion more than a few times (imagine the teacher who claims your child doesn't know an answer because he can't endlessly raise one hand for yes and one for no for the full hour it takes to administer a test). My son cries at sad music uncontrollably because serotonin regulates the brain's emotive centers.

In 2011, Dr. Hyland of Baylor University told us that all of these tests were normal. And, in fact, that these tests of the byproducts of the metabolism of certain neurotransmitters seemed to indicate that Robert did not even have a metabolic disorder--which every single esteemed neurologist he has seen over the course of 13 years has recognized as a distinct possibility based on the clinical presentation and the limited medical data. Not the least of which was his most recent MRIs, which showed the classic brain damage of a person with Leigh's syndrome, a mitochondrial disorder (a category of metabolic disease). No matter that we can't find the gene defect for this; at least we had a concept.

It was like this: for 8 years, a city grid was laid out for us and our doctors and teachers and friends. Vehicles traveled through this grid--we didn't know where each and everyone of them was going and most were occupied by strangers, but they traveled on city streets we could name and intersections that appeared to be governed by functioning stoplights with the occasional red light runner and the tourist who pauses at the green light wondering whether right or left is the proper direction. Then. Then someone barricades off those streets so that traffic can no longer travel on them. Suddenly everything is empty, yet the traffic lights of our understanding and expectations continue to flash in a coordinated manner, the way the mind moves for a while after a shock as though life might still be quite normal.

Fortunately, life moves on multiple parallel tracks. This summer, we'd been connected to Jimmy Lin, who has started a nonprofit to enable families with undiagnosed children to access genome sequencing. Rare Genomics Institute, the nonprofit, had established its website in the fall, interviewed 3 or 4 families to pilot its work, and begun to connect those families with the specialists who could help them. The funding mechanism is crowd sourcing, a form of fundraising through social networks.

Robert's fundraising page had been set up. In fact, I'd agreed to be interviewed by the Baltimore Sun as part of an article about Rare Genomics, an article that appeared about 10 days before the Baylor tests came back negative, unexpectedly. Wire services had picked up the article, and it ran in papers in Indiana, Arizona, South Caroline, Illinois, California, and Oregon. By early December, we'd raised $1,400, almost all of it from total strangers who had read those articles. I cannot describe my reaction without using the simple cliche: I was blown away by American generosity.

Our own press forward with fundraising had been held back a bit--we wanted to get past that round of testing we'd been waiting on, we wanted to think carefully through how best to approach friends and relatives, we wanted to be careful and do it right. And we were side-tracked with the enormous number of holiday and end-of-year tasks that constitute the medical and social services bureaucracy of Robert's care and treatment.

[And, my dear regular readers, if you're still out there after my spotty posting this fall, on November 4, I was notified that I'd been awarded a MacDowell fellowship in non-fiction, which gives me a month of support at their artist colony in New Hampshire to work on the book I'm writing about Robert. And I thank each and every one of you for reading as I've worked on this material, because the project started with this blog. So--the award was also its own kind of special distraction.]

But, on December 11, after 3 weeks of living with the shock and awe of those test results, I couldn't stand it anymore. Years ago, as tests came back negative and normal, as what-was-wrong loomed obvious and frightening and damaging, the lack of diagnosis relieved me. No one could prove to me that Robert would die or be profoundly limited or impaired. I was free to treat him normally, to believe in him because no one could definitively tell me otherwise.

But now, after all of this, after my city in ruins, so to speak, I want to know. And genome sequencing offers the best chance at knowing. No, it cannot promise miracles, it cannot absolutely promise it will find the defect in the winding haystack of the same four proteins that in different patterns constitute our height, our hair, our skeletal structure, our propensity for disease--but it's my best chance. Like Mountains and Clouds, the answer is there somewhere, and, even if at ground level we can only see it in bits and pieces, maybe there's another platform from which we can see much more.

So I posted the Baltimore Sun article on Facebook on December 11, just threw it out there, as well as the link to Robert's page. And I asked people to re-post. And they did. And the money just started coming. In 48 hours, we were about 75% there, and by last week, when Robert was hospitalized with pneumonia, we went over the top of the $7,500 we needed to raise.

And this experience was like having walked by Mountains and Clouds every day, never looking up. Every day, I see only a portion of my friends, my acquaintances, and the faces of strangers I've made eye contact with while taking Robert out and about. Sometimes, the vast sculpture of the people whom we know--who are, in themselves, a work of art, people from all the parts of my life, connected and constellated and omnipresent the way we all are in a socially networked universe--becomes visible, all at once.

And I thank you all for that--those of you whom I know, those of you whom I didn't. Those of you who passed the message on, even if you couldn't give, those of you who gave even if it was a sacrifice to donate only a few dollars, those of you who gave more than I had any right to expect--all of you who cared to in one way or another contribute your support, monetary, emotional, both, all.

I praise you. And my New Year's resolution is to pick up the slack reins of this blog and let you know how it all proceeds for us as we move through the next rounds of medical intake eval, treatments, and tests. In early January we start meeting with doctors about sequencing. This story may not have a definitive end, but I will post as many of the chapters as I can. And I'll continue to write, as I have in the past, about the other challenges Robert faces.

And the guy who seemed as though he would never ask me out thanks you, too. Because eventually, a question is asked and the answer is yes, and then yes, and then yes, again.

Better or Different, or, Different and Better. Or not.

2011-11-10T16:46:00.000-05:00

The longer I live in the DC area, the less conscious I think I am of the skin tones of the people around me or the appearance of disability, and the more conscious I seem to be of my own whiteness and my own ableness--of where I start and stop. The self as an enormous pale balloon knocking softly against the boundaries of objects and people. Is there a difference, I wonder, between an awareness of noticing and an awareness of being? If I am not one thing or person, must I be another? Can I even claim to be less conscious of another and more conscious of my otherness?

Listen, boundaries are all around us. The one I sense most keenly these days is Rock Creek Park. Those who live in Northwest DC and the northwestern suburbs have little reason to cross the park. Once a week, though, I cross it at Military Road. I make a left hand turn from Connecticut Avenue onto the narrow confines of Military and I head east past comfortably large homes with manicured lawns. At the intersection by St Johns College High School, Military becomes a four-lane road that resembles a highway as it rolls and loops through the park. Not that you can really see the park. Just the trees on either side. The time of day I cross, the police have set up speed traps--it's too easy to go 50 in a 35 mph zone--and at the same bend in the road, all the traffic slows down in unison.

Abruptly, the park ends as the road slips under 16th St and becomes Missouri Avenue. While this is still northwest DC, in fact, it is no longer Northwest DC. Just as the street is no longer Military Road and the road was once but is no more again like a highway.

And you would think the place would be different than the streets and the houses on the other side of the park. But not so much. On the left side, kids leaving school. On the right side some apartment buildings and then across Georgia Avenue, tidy brick homes. Maybe a little smaller, maybe not so many tall trees overhanging the street.

And on I go through neighborhoods that are supposed to be different, in which I'm supposed to be different, in which Robert is probably the same--someone different from different. And Edith is in the car, too, reading her book and paying no attention to much of anything outside the car. Probably because it doesn't seem much different to her.

And what my grandmother used to say when she didn't really like something but wanted to be polite was that it was "different." But that's not what I mean. I just hear it as a constellation of vowel and consonant sounds and understand its meaning to be something not this, when not this is just another place next to this one. But then someone sets a park between those spaces and asks us to consider the road we're on as either a bridge or a barrier.

Robert's aide, James, meets us at HSC Pediatric Center, which I get to eventually after I cross into northeast, or Northeast (it depends on how much you want it to differ), via Missouri (which becomes Riggs Road) and South Dakota and Michigan Ave. James goes a different way to meet us, even though he is also coming from Bethesda because his eyes lit up when I said, can you meet us at this place on Bunker Hill Road? And he said that that was in his old stomping grounds, not far from where he grew up. His high school was near there, but he'd never been, he thought, on this other end of Bunker Hill Road. So he likes to take roads over that go by things he knows or used to know.

Regardless, he meets us at HSC weekly so he can also learn how to stretch Robert. We are at PT.

While this is a long way to go for PT from Bethesda, it's the place I chose. Robert's physiatrist communicates most easily with therapists at either Children's or at HSC, which coordinates some care with Children's. Both are a ways from Bethesda, but choosing anything close to my house would be choosing to have Robert do PT as a form of silent meditation on a little island of my own insecurity. Doubtless someone I know might or might not tell me that there are better physical therapists on my side of the park and that may or may not be true or it may be that "better" would be the word my grandmother might choose were she alive today instead of different. Because death is really very different. Not being, that is, as opposed to being.

HSC is farther than Children's, but I chose it because I brought Robert there for an equipment eval and it was homier than Children's, and, furthermore, everyone there seemed not to react at all to how different Robert is. Which is the difference between HSC and Children's, where the therapists, I think, deal with many more of your garden variety disabilities and surgical rehabilitations. HSC is where kids go when doctors at Children's are thinking long-term rehab.

And I am so comfortable in the waiting room even though I am so very white (I really am exceptionally pale) because Robert is not especially different from any of the other kids who wait for their appointments. And we are all, who wait, free to smile at the antics of kids who are, in context there, just kids cutting up and misbehaving. Robert tries to do his extra-loud snoring just to keep up appearances.

This last visit I caught myself learning how to understand where I stopped and Robert began. Our PT, Jen, had called me at work to describe the braces she wants Robert to wear when he's resting to maintain a hamstring stretch. Robert looked rather skeptically at the brace, which was really not so simple, but a structure with straps and a metal hinge with dials at the knees, dials that adjust the tension of the brace. The sample model was black, but we told Robert he could have whatever color he wanted. Or even two different colors, one at the calf and one at the thigh.

I had talked to Robert's therapist (because she's not really our or my therapist) about the fact that Robert really doesn't like to wear this stuff. Can you just up and ask a kid if he'd be psyched to wear a brace like that? The answer would undoubtedly be no.

We went over it, me and two PTs. Edith read her book. And we didn't go over it with me, we went over it with Robert. Picking the color or colors you'd like to wear is just for appearances. What really matters is what the brace does. The brace helps you to straighten your leg, we said, a little bit like what the baseball players do when they're injured. Same, but a little different. Dustin Pedroia, we noted, wore a brace when he broke his ankle and did his rehab. And if you can straighten your leg, you'll walk much better in your walker when it comes, we said. Did he want to be able to use the walker? Oh yes, he showed us with his 'yes' hand, he did. James assured him, as James follows several sports while I follow only the one, baseball, that rehab is rehab, no matter who you are or how many yards you've rushed or RBIs you have or how many miles that wheelchair has traveled.

What was most important to me and to Robert was that it was his decision to get the brace. Which he'll be fitted for at another appointment.

Before we went back, we stopped at the BP station on South Dakota because the vending machine at HSC didn't work and Edith wanted some Zingers. Walking into the BP station, I wondered, briefly, if they would have Zingers and whether or not they would be fresh. Because sometimes, at gas stations, the snacks are not at all fresh. The only thing that caught me by surprise was the attendant behind a very thick sheet of plexiglass with that drawer underneath where you can insert your money, but not your hand, for example, or anything larger than your hand. The plexiglass reminded me that I was on this mythical other side of the park, the one that hardly seemed to exist when I drove by all those neatly kept houses on one end of South Dakota and on Michigan Avenue. But the attendant flashed me a big smile when I bought the Zingers. Maybe because I bought a Hostess vanilla cupcake with orange frosting for myself--the most exotic thing I'd seen lately in terms of snack food--to go with the chocolate cakes for Edith. Of course, I smiled back.

And we returned through the dark across Rock Creek Park on the road that could be a bridge or could be a barrier. To where things are supposed to be better and nothing is really different.

This side of anesthesia

2011-10-23T22:20:00.000-05:00

I recognized that everything was black. An interior sensation--that was the first thing. The second was someone calling my name, once, then twice.

I opened my eyes and I was back in it. Just exactly as I was told. The last thing I remembered was asking the anesthesiologist whether it was normal for my arm to feel numb. Then nothing. Then the other side.

I'd walked into the operating room with the nurse by my side pushing the IV pole. My primary focus was to avoid bending my elbow as the hep lock was in its crook. I'd been through too many episodes with Robert in which the IV was dislodged, and re-inserting the needle hurts.

Most of Robert's recent surgeries and procedures have taken place in fairly small outpatient rooms. It's been a while since he's had anything in a surgical theater, and, even then, I accompanied his white-sheeted gurney only to an antechamber.

This surgical theater was larger than I expected, with equipment pushed to the perimeter. It was pink. The ceiling was high and the lights were bright and the operating table was in the center with two long trays for arms set out akimbo like snow angels. I admit I felt an involuntary surge of concern. Maybe it was habit. But I'd never actually been under anesthesia--epidurals and local plus Valium are not the same. Even this was not general--just a heavy sedative.

I've never even fainted, let alone lost consciousness to anything but sleep. Anything that would, as long as it ran through my veins, prevent waking.

Of course it was fine. I knew it would be. That's the logical thing to think. And this was just a minor operation on my foot: I'd developed a hematoma (or so I found out afterward) that refused to break up and dissipate, instead inconveniencing me by growing larger just below the ball of my foot. Walking without pain is a good thing.

In the meantime, as I was moving day by day toward this scheduled procedure, Robert had started breathing strangely. Not that he was gasping for breath, not that he couldn't breathe or was breathing raggedly. No none of that.

Robert can make a breathing noise that no one can imitate. Sometimes we call it his scary breathing noises. Sometimes we call it his Darth Vader breathing. It involves a sharp intake of breath that medical professional refer to as 'strider' breathing, so sharp that the effort of it sucks in the inverted triangle at the dip in the collar bone. The entire effect of it is on the intake, and the noise is a rattling roar with just a touch of a mild honking at the outset. Letting out the breath is a mirror image, but softer.

I felt I understood something about this as I was plowing through John D'Agata's About a Mountain, and one of his digressive riffs mentioned, in passing, that the human larynx contains many more folds than we actually use, the residue of evolution. In a handful of cultures, worldwide, humans are able to use these folds for some vocal effect. I thought, aha, Robert, in his spare time, has figured out how to make those parts that no one wants or needs dance to his tune.

Most often, these noises he makes are communicative. He's bored. He wants to draw our attention to something. He wants a change. He wants to annoy us.

For several days leading up to my surgery, Robert made these noises non-stop. We joked about them with him--we asked him if he was in his rebellious teen mode and whether he was trying to annoy us. Sometimes he would smile. We made many efforts to try to figure out what he might need.

The noises continued unabated, until last weekend, he made them for hours at a time. One afternoon, he made them non-stop from the time I picked him up at school, through the drive to HSC, through physical therapy, on the drive on the way home. In the house. I tried to tell myself: the kid is disabled, I have to try to talk with him, I've got to figure this out. And I wondered if it were normal for sensibilities to go numb because of this. But over 3 hours of a noise loud enough to drown out the radio or the TV? Let's face it. I snapped. You have to stop it, I said loudly, no one can stand this, no one can.

Of course I felt an instant remorse. As instant as a flush of pink powdered breakfast drink stirred into milk. Because then it occurred to me that maybe he couldn't stop this. Maybe there was a problem. His mouth often hung slack while he honked and rattled and wheezed and, eventually, coughed.

Robert had had botox for spasticity on October 7. Unlike other parents who google absolutely everything, do their homework, come up with questions, I find myself simply deciding to trust Robert's doctors. I figure that's their job. That is, if what they tell me makes sense. And this did. Maybe the botox will release some of the spasticity in his legs making him uncomfortable. Maybe it will increase the range of motion in one arm. What do I know? I have advanced degrees in literature. I don't know how Google is going to arm me with the same information gleaned through 4 years of medical school and years of residency and practice.

At that point, I do what I'm told. I take my kid to the hospital at 4:30 in the morning. I don't give him any food after midnight and give only clear liquids up until the cut-off time.

What do I know? So I googled "botox" and, of course, came up with a pile of information difficult to evaluate. After sorting the idiot scare pages from those that offered some sort of rational information, I concluded that botox could, possibly migrate and affect breathing and musculature other than what the injection aimed at. On the other hand, Robert was not struggling for air or in any sort of respiratory distress.

So I called the doctor who administered the botox and left a message. In an even voice, rational, stating what appeared to be the objective facts. I am long beyond panic. Panic does no one any good.

Having made the phone call, I tried not to feel anything and just wait for the other side. That's what leaving a message about your child is like: a going numb, the last few said things, then nothing. Then the other side.

The nurse called back, asked a lot of questions. She called the doctor. She called me back. We should take him in.

Because of the anesthesia, I was still a little groggy, not even sure I was making sense. As I'd been told, I would forget things on and off most of the day--codeine made it worse, my brain in a gray zone in between thinking and nothing. So Roger took Robert in.

Robert came back wearing a neck brace, as though he'd been in a wheelchair accident with his friend Greg, and their DME insurers were arguing over the details of the incident and the blame. The white foam collar provided support to his neck and minimized the awful, deadly breathing noises. Most likely, the botox had migrated.

He looked a bit bereft. Maybe embarrassed at the brace. But I remembered calling his name once and then twice, his jaw slack, his eyes staring ahead and ignoring me. The breathing at bay, he started meeting our eyes again.

And we were back in it. Exactly. Re-inserting the needle hurts.

Magnetic Poetry: wall street occupation survival fittest Ke$ha

2011-10-10T14:11:00.000-05:00

For some time, I've been silent--a factor of travel, of Robert's healthcare, of simply needing a break to more fully immerse myself in life outside cyberspace. Mostly, though, I was stunned into silence by my extended meditation on my last post about "katekilla"and her ugly genocidal thoughts coated in sugary "mom-speak."

How can I justify my son's existence? Do I need to? Why do I feel the need to? As I've noted in multiple posts over the last year, people with disabilities exist in a precarious place in the ever-more rapaciously capitalist systems that drive America, whether forward or into a ditch, no one can say right now.

Robert had a wish granted through the Make-A-Wish Foundation at the very end of August, in Vermont. A day out of time, we all felt "worth" something, Robert's situation elevated to the level of the special, a team of people guaranteeing him a perfect day, just because, outside of any economic measures of worth. He met Big Time Rush, a boy band with a Nickelodeon TV show--four guys, Kendall, Logan, Carlos, and James, who needed no prompting from me to interact with Robert and who exuded kindness and generosity. Buy their albums, watch their show. These are good human beings.

We left Vermont two days after Hurricane Irene passed through, eradicating roads and bridges throughout the state, particularly in southern and central Vermont. I made the executive decision to take the ferry at Charlotte to Essex NY, hoping that that would offer a more secure path to the Northway (I-87).

It didn't.

Essex had no electricity and the ferry had to dock manually, which seemed to involve workers reaching, missing, and reaching again for thick cables with large hooks attached to them--balanced on the edge of the ferry as it bobbed gently between the giant wood palings that serve as pocket at the dock.

Once off the boat, I followed the blue signs for the interstate, the roads clear and dry, the sun shining. One by one, we were stopped in our tracks by orange signs on blockades that read "bridge out, road closed." Three of them, total. We were about to turn back, take the ferry across the lake back to Vermont, and try to pick our way south some other way, when someone local happened to drive by on roads that were largely deserted. We flagged him down, explained our plight--and, rather than tell us, you can't get there from here, he said: take a left on that dirt road, go to the end and take another left, and there's the entrance to the interstate. And we did.

And that's what I wish I could find. Someone to tell me how to bypass this question of "worth" where Robert is concerned. Because all the dialogue is couched in that, katekilla be damned. And for the last several months, as I remained silent and I thought, my thoughts ran into one orange "bridge out" sign after another. You can't get there from here. What does Robert contribute? Is it worth is to educate him in a world of diminishing resources? Provide him with medical care? If he can't hold a job, what can he do?

These are all questions posed by the capitalist society in which we are enmeshed. And I'm not necessarily anti-capitalist; however, at a certain point, I dig in my heels when all of life--its joys and sorrows and human relationships and beauty--is couched in economics, supply & demand, relative value and the like. Is there no other framework in which to argue these points, other than the mushy mommy perspective, which no one really respects, but in which society will indulge me, all the while acknowledging my "emotional" state: the one where I just stand up and say, hey, my kid is worth something just because he's a human being.

So I kept reading Power, Sex, Suicide: Mitochondria and the Meaning of Life, hoping that I'd find some answers. And I did, sort of, when Nick Lane began to toss about the divergent opinions relative to neo-Darwinism, theories of cells, microbiology, and evolution. Is nature really red in tooth and claw? he asked, quoting Tennyson. Lane notes arguments about a book, The Selfish Gene, by the scientist Richard Dawkins, who argues something about natural selection taking place at the level of the gene, rather than at the level of the cell.

As it turns out, the microbiologist Lynn Margulis, who studies bacteria, disagrees with this, seeing a world in which the corollaries of competition and natural selection are complicated by natural systems among bacteria (and also, possibly among eukaryotic cells) that promote the formation of collaborative and cooperative communities. Odd how this disagreement seems to underline stereotypical differences between men and women.

Lane steps in and notes that "both see the individual as a fundamentally collaborative entity," and that Dawkins himself, in responding to Margulis, says he believes that "selfishness and cooperation are two sides of a Darwinian coin." Furthermore, Lane comments, "true individuals [are those] in whom all selfish interests are subordinated to a common purpose." [all on pages 196-8] And this all speaks to a much more sophisticated understanding of Darwin than I had ever absorbed, although I have read On the Origin of Species. Ahem, not "the origin of the species." Right.

Within popular culture, all of Darwin is reduced to the phrase, "survival of the fittest." And that's annoying because it cues in the popular imagination, even my own, an image of a weathered farmer in a feed store cap standing over a three-legged calf with swallowing difficulties and other functional defects, his thumbs in his overalls while his wife twists her hands in her apron and tries to hold back tears as the calf dies, saying, sonorously, "survival of the fittest, Marge."

And that's the sort of image that people like katekilla transfer to people with disabilities: survival of the fittest. And 288 other bobble-heads agree. Who can argue with that, they think?

And, out there in the wild, nature certainly is red in tooth and claw. Cue the clipped British tones of the voice-over in countless public television wildlife documentaries as the zebra races ahead of the lion, until the lion stumbles and gives up: "today, the race won and the zebra survives to face another day."

But human society rather confounds all of those Darwinian truisms. Consider Ke$ha.

This summer, driving about on errands in my typical slightly rebellious listen-to-catchy-bad-crap-on-the-radio kind of declasse style, I found my interest piqued by this song that found its faux-emotional climax in the line, "the party don't stop 'til I walk in," uttered with the odd tonality and halting style of an incredibly self-confident drunk. Tik tok. Yes, brushing my teeth with a bottle of Jack, leaving for the night and not coming back are not part of my world at the moment. And, therefore, mildly interesting.

Plot Ke$ha down in the middle of the Arctic and she'd freeze her junk solid (not quite like a brick house), or in the jungle where she'd be gobbled up by a panther or a very large snake quite quickly. Even on the mean streets of LA or NYC, brushing your teeth with a bottle of Jack and stumbling about in a drug and alcohol induced stupor because the party don't stop makes you more vulnerable to all sorts of human predators.

Ke$ha survives and thrives (outside the wild) because we live in a man-made environment in which her looks, her voice, and her performance value make her valuable to other people. Otherwise her ass-ets are rather limited in duration and scope. That is, human society is not driven by the laws of the jungle. And what will happen to Ke$ha in the long run as she ages and, hypothetically, becomes less valuable? Survival of the fittest--having spent all her money, she wanders the streets?

Dunno. So cue Herman Cain, I suppose:

"Don't blame Wall Street, don't blame the big banks, if you don't have a job and you're not rich, blame yourself! It is not a person's fault because they succeeded, it is a person's fault if they failed. And so this is why I don't understand these demonstrations and what is it that they're looking for."

Which the International Business Times refers to as Herman Cain's cult of self-sufficiency. Although I'm not sure I follow that logic about failure and success, I do believe Herman Cain has the selfish gene, and not the one Richard Dawkins wrote a book about.

Which brings me to Occupy Wall Street and cellular biology. "Not a person's fault because they succeeded"--meaning don't blame me if I'm a successful individual, rising above my fellow humans. I'm self-sufficient, you're not, I deserve to survive. The self-sufficient individual as king of the universe.

There's a reason all of these terms cluster together. In our current political environment, we are asked to see these as positives. But what if they're not? Is it really better for a few people to survive, thrive, succeed, while the majority of people do not? What does self-sufficiency mean, or is it another term for selfishness?

Dating back to early modern England, the body was used as a metaphor for politics--the body politic. The king, of course was the head, and the peasants had to assume the role of somewhat less appealing organs.

In cellular biology, the body, the individual, offers a similar metaphor: the individual is really composed not of a single entity, but of thousands of cells working in concert and "subordinated to a common purpose." Even the head. Even the brain. The rise of the individual, or, in this case, the determination of a single cell to assert its independence from the body, is not at all a good thing. It's called cancer. Cancer is when a single cell decides it doesn't have to do what the others want anymore--it can succeed on its own. And it does. And it metastasizes and grows and becomes "successful" at the cost of the entire body.

And that's part of what Occupy Wall Street protestors are saying: big business and corporations have become a cancer in the body politic. The demonstrations ask us to consider what our common purpose is, because the 1% is working against the common interests of 99% of this body. And tearing it apart.

I can't tell you what Robert's value is exactly. Just that he's a part of this body, just like other people with disabilities are. And our bodies have an appendix and unused larynx folds and tonsils and our genes are composed mostly of noncoding DNA. As a highly intelligent and knowledgeable research scientist told me yesterday: looking at our DNA is like looking at the world composed of cities, where most of the population is, and large stretches of rural areas, and even larger stretches of unoccupied lands and oceans. The pieces of our DNA that actually code for proteins are the cities.

I would add, but the rest of it is still there. We don't know why. But scientists are learning that even the useless pieces, the noncoding regions, are retained for reasons we can't yet understand. And that's my point about Robert--think outside stereotypes, pay attention to different metaphors and analogies.

And I could go on about Occupy Wall Street, about individualism and cooperation and collaboration. And dependence. Many people in Washington are shouting at us about "job creators" by which they mostly mean corporations. And individuals and self-sufficiency, by which they mostly mean people who can succeed somehow, magically, as individuals, dependent upon no one. (Really? not even their moms? Were they like Romulus and Remus, raised by a wolf? Even those guys all the taxpayers bailed out? Even the government who gave them tax breaks and incentives and loans for their businesses?)

But the question really is: do we want to be dependent on corporations? Or do we want to be dependent on government, which, by the way, is you and me, the body politic? Which is the same as being dependent on ourselves, which is, I suppose, something like independence, but not cancerous independence, the collaborative interdependence of the scientists I discussed above. The ability to work cooperatively within a body, each cell specialized to its task, but with the security of the body's integrity grounding all.

And wouldn't it be better and promote the healthy rise of the individual within this economy if our resources were pooled to ensure healthcare for all, independent of specific jobs, so that we could strike out on our own, specializing as cells do, something like Steve Jobs, who advised Stanford graduates (and all of us, I suppose):

Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

But that would be more than I could say coherently at this time. And is Jobs' message the same as Cain's or is it different?

Let me leave you with this image of my son: we are all Robert at this historical moment, mute within a society that threatens our survival as cooperative individuals, working to the common purpose of freedom and the pursuit of happiness. Robert communicates by raising one hand for yes and one for no--and that in response to what someone else has determined as his choices. Which is a metaphor for our voting booths: we must say yea or nay to someone else's choices, not our own, the choices those in power give us, while we remain unable to express the complexity of our own thoughts and reactions--which is why Occupy Wall Street seems such a primitive and amorphous mass to some.

Just like my son.

Evoluzilla meets katekilla

2011-07-12T18:58:00.000-05:00

In an effort to understand my son's condition, I've been reading a book subtitled, Mitochondria and the Meaning of Life. Let's just say biology is a city that faded into unrecognizable geometric shapes in my rearview mirror years ago. Nonetheless, I immerse myself in page after page of densely packed type, through which loop and spiral complex discussions of the various kingdoms of life, oxidative phosphorylation, eukaryotic cells and bacteria, proton pumps and chemiosmosis, proteins, enzymes, fermentation and energy production.

Mitochondria make multicellular life possible--why? I'll let you know when I fully understand it, when I've moved beyond page 98. But the merger of a bacterium with an archaeon formed a proto-eukaryotic cell, a cell that developed a nucleus and, eventually, histone-wrapped DNA. A cell with the capacity to generate (actually, transfer, as I've learned energy is never generated, it's always transferred from one thing to another) the significant energy required by beings composed of hundreds of thousands of cells all acting in concert. The eukaryotes gave rise to the likes of you and me.

When I think about my body, I mainly think of myself inhabiting it, myself being my intellectual capacity, which seems somehow separate from my physical reality. When I run, I think quite a lot about my physical reality, but I think about my heart and my lungs and my damaged coronary arteries--my organ systems, in other words.

I never think about myself at the cellular level. I never think of the minutia of specialized cells that compose these organs. Yet the biochemistry of human metabolism is the source of Robert's problems and the source of the problems experienced by many others. I started creating a phyla of disabled children: those whose cells suffered oxygen deprivation, those who have a specific genetic disorder that caused the body and its processes to be constructed differently, those with a metabolic disorder that caused the body and its processes to unravel, and so on. It's rudimentary, I know.

But my point is that that whatever goes right or wrong in our bodies happens at the level of the cell. And at the cellular level, another world exists in miniature, populated by mitochondria and DNA and RNA and transcription factors and various proteins and enzymes and protons and electrons and all of these characters are what they are. None of them are misshapen or "wrong" or disabled or deformed. They just get the wrong instructions or they go to the wrong addresses or there's a bad match with enzymes or proteins like a bad date, which gives new meaning to the word, "chemistry."

All of this culminates in a child like mine with his thin legs and variable muscle control and distorted expressions and features. But at the cellular level, his components look just like the rest of us--some of his cells just aren't doing what they're told or what they're supposed to do.

This results in difference and disability. And a lot of people don't know what to do with the disabled except articulate difference. And articulation leads to all kinds of speech acts, including the leveling of judgement and the free spattering of opinion.

A response to an article in the New York Times Magazine has been bothering me for about six weeks: "Could Conjoined Twins Share a Mind?" By the way, the article's subtitle is "the miraculous life of Tatiana and Krista Hogan and what it could reveal about the human brain."

One reader, "katekilla," says the following:

Oh, gosh. They are of course lovely and it's great that their family loves and accepts them so fully. And yes, their unusual brain structure can provide a unique opportunity for research and a rich context for philosophical inquiry.

But. Their lives will be so constricted and stunted by this condition, and all I can think is how much they will miss out on. I know it will sound unkind, but I really think the more loving choice given the information their mother had would have been to terminate the pregnancy. Life at any cost isn't always the best choice.

This comment was recommended by 288 readers. In fact, all of the comments that leveled the most judgement on the girls and the family were recommended by hundreds of readers.

Because of Robert's disabilities, I've long struggled with my own views about abortion: nothing seems as obvious and straightforward to me as it does to katekilla. And not much bothers me more than people on comment threads who express no ambivalence when they suggest children with disabilities are better off dead. "I know it will sound unkind" is a gruesome thing to say. The root meaning of "kind" is to express similarity or likeness as a means of bonding with others. And "unkind" here is a bit of an understatement. One doesn't ordinarily preface remarks about disposing of the lives or happiness of others by professing that it might be taken the wrong way. As in, "it may sound unkind, but the Turks were somewhat justified in their mass slaughter of the Armenians," or, "it may sound unkind, but slavery actually benefitted black children."

When katekilla mentions the word "unkind" she's drawing a clear distinction between people who are like her and those who are unlike her, and she's assuming the reader is "like" her, one of her kind. And there are 288 of her kind who agree.

"But I really think the more loving choice ... would have been to terminate the pregnancy." This must be a logical fallacy, but I can't think of the term. The problem with katekilla's statement is that, in her opinion, there is no real choice: the choice she presents is a fiction. The right thing to do would be to terminate the pregnancy. To "choose" to give birth to the conjoined twins is an act of villainy: unkind, unloving.

Might I add that there's also a moral difference between making the personal decision to have an abortion while the fetus is non-viable and stating after the fact that an existing human being should not be alive. Another reader comments in solidarity with katekilla, "I stand by the idea that this potential abortion is a sincere expression of compassion." Really? That's the type of language one uses when talking about animals, when putting the dog down or shooting the lamed race horse in the head.

As legislatures have acted to restrict abortion, there have been acts of real courage--as, for example, the female legislators in the Wyoming state legislature who stood up and testified to their own decisions to have abortions--and they made it clear that they considered their decisions private, among themselves, their partners, and their doctors. Someone like katekilla would consider it wrong and judgmental to accuse one of these women of murder, for example. She would consider an abortion, indeed, a private decision.

This veil of privacy, however, disappears when the "choice" or, rather, decision has been made to carry a child to term. Then the judgmental fury of, yes, mainly women, opens full throttle. Peruse the comments on the NYT thread and you'll see all kinds of allegations: I believe people accuse the parents of the villainy of everything from bringing an expensive person into this world to putting the kids to bed with a sippy cup of juice. Worst of all are the readers who make the blanket assumption that other people will reject the girls: "The story paints a charming picture of their CURRENT life, but they will find out exactly how lovable peers think they are when they get to school."

Well, if you can't be part of the solution, might as well be part of the problem.

Admittedly, I am part of the broader problem because this kind of dialogue makes me defensive: what are women saying behind my back? Wondering what I knew and carried to term anyway? Wondering what I did "wrong" during pregnancy? What I ate, whether I drank? Whether I stood in front of my microwave when it was on or went in the other room?

When it comes to pregnancy and childbirth, our society assumes there are "choices." The increasing sophistication of prenatal imaging and testing assures us that there are. But the assurance is limited in scope. While I don't have any hard and fast numbers for you, prenatal testing and the genome sequencing done in the majority of amniocentesis analyses is pretty rudimentary and tests for only a small number of possible birth defects. Why? Um, because genetic analysis is incredibly expensive. Talk to me, we did $16,000 worth last summer.

Which brings me to one of the significant anxieties that underlies the NYT article and the response to it: money. (Drum roll, please)--may I present "suki," from my (near) hometown of Burlington, Vermont:

But really, folks. All of this praise for the family who doesn't seem to know where the next meal is coming from? Not attending to their children's basic needs of vision and dental health? Having more children when they haven't figured out what it will take to care for the children they already have? The adults here are either ignorant, lacking in the self-discipline it takes to care for their children's present and future needs, or sticking their heads in the sand if they think cuteness and parental love is all that it takes to raise any child, let alone these two girls who most definitely do have special needs.

Put it this way: sure, if every pregnant woman paid for amnio and every amnio sample was sent to the most sophisticated genetics labs in the United States, yes, we could catch a lot of gene defects early in pregnancy, and, thereby offer many more families the ability to terminate fetuses with defects. But that would cost far more than providing medical care for the relative handful of disabled children who are born every year. Suki, my friend, this could have happened to you. Maybe not conjoined twins, but a devastating metabolic illness in one of your kids, a disease for which amnio does not test and sonic imaging does not expose.

Making our bodies go requires hundreds, maybe thousands, maybe hundreds of thousands of individual chemical steps that string together to form dozens of chemical reactions and processes, and any one of those steps can be a misstep. Test for that. Go on, I dare you.

And, frankly, gene defects are hardly a set of library books, sitting on a dusty shelf waiting to be read. Life is dynamic and ever-changing. Our nDNA, mtDNA, RNA, and the transcription factors that allow it to be read and replicated will continue to evade our grasp. There's yet no test that's revealed the small gene defect or combination of defects that are causing some kind of enzyme malfunction in my son. Sixteen thousand dollars later, I am no wiser.

However, I can assure you that our cells are percolating away inside our bodies, our DNA is filled with long "inactive" strands that presumably provided coding for some part of our prehistory as human beings, oxidative phosphorylation proceeds apace as proton pumps within our cell membranes rotate, turn by turn, assembling molecules of ATP. And somehow all of this cellular activity has become specialized, allowing us to form lungs and hearts and brains, enabling our cognition and our judgement and our cultural anxiety.

The conjoined twins are valuable, despite all else, as human beings and because they allow researchers to study non-perfect bodies. What was it that Tolstoy said? "Happy families are all alike; every unhappy family is unhappy in its own way." Healthy bodies are all alike; every atypical body explains to us something of the individuation that is disease and suffering.

The eukaryotes gave rise to the likes of you and me. And along the way, all of the genetic hits and misses that allowed, eventually, mammals and humans to assemble themselves were not eliminated a la Darwin. Microbes and bacteria and plants and all that represent different evolutionary channels, all from the same sources. Yes, we share some genetic code with methanogens. And we have appendices and tonsils and folds in our larynx for which there is no known purpose. We live in towns and cities and in rural areas where our bodies and our lives form large macro-cellular colonies, and in these "colonies" there's specialization and apparent uselessness all at once. Life evolves with complexity, sending its feelers out for what may be a wrong turn or might yet be an evolutionary pathway.

Mitochondria make multicellular life possible. That mitochondria and archea formed a genetic bond and that that bonding survived is a contingency, something of an accident. You could call my son an accident, or you could see him as variation in the oscillation of evolution.

Force of Renovation

2011-06-26T17:26:00.000-05:00

On our way back from another reunion activity, walking through the clean, dark air of a Vermont evening, Lee and Ellen get into a friendly debate about the architecture of Atwater, the dorm we've been assigned as housing for the weekend. Lee raises funds for arts organizations; Ellen, among other things, is an artist and a photographer.

Lee likes the way Atwater is designed to reflect elements of older buildings on campus, and, thus, fits in--gray stone facades, squared modern details that echo the simple architectural lines of buildings like Starr and Painter. Ellen decries the repetitive tedium of Atwater's facade, the unresolved architecture of the space between Atwater and its cross-quad twin, which consists of utilitarian sidewalks that serve no aesthetic purpose. Also the blank narrow sides of the long dorms that resemble European public housing.

Lee remarks, and we all agree, that the interior spaces with their suite design are very pleasant, and, as we understand it, sought after dorms on campus.

The College as we knew it barely exists--or, rather, our alumni events take place in all the new, sumptuously designed spaces the College has created in the 25 years since we've left campus: Atwater dining hall with its golden wood and glass interior, the Mahaney Arts Center with its cathedral-like open spaces, the Axinn Starr Library with its marble and glass addition and a large entry much like a scaled down version of the main hall at the Kennedy Performing Arts Center in Washington DC. Some of these are extensive remodelings of things we knew: the pool, the original library. Like any urban area, like my own Bethesda neighborhood, the old gives way to the new, remodeling, re-imagining how life will be lived, in what spaces will lives be shaped. Redesign as an endless, ongoing process, akin to reincarnation.

This is the first time I've returned for reunion in 15 years. In the meantime, my entire life with Robert has existed, a parenthesis in the middle of a much longer existence of over four decades. Within this parenthetic bubble, I'd gradually lost my ability to see the strands of my life that pre-dated him and flowed around him. As Stevens says, all this / Had to be imagined as an inevitable knowledge, / Required, as a necessity requires.

I'd been nervous about this return, like an end of the imagination, inanimate in an inert savoir--an inability to imagine telling people I once knew about all of it, the possibility of conversations stumbling to a halt over this kind of semi-tragic revelation. Yet it turned out the absence of the imagination had itself to be imagined: my careful exposition of where life had taken me was met with all kinds of interesting stories and semi-confessions, in-laws coping with a disabled child, a ne'er do well brother scraping by on disability, a friend who dropped out of sight only to resurface with a disabled child and the unintended awkwardness of a run-in reacquaintance. And empathy, of course--all of us older now with divorces, job-changes, infertility, family crises of one kind and another. Our lives have been a constant, ongoing reorganization and renovation of interior space now subject to public view like the full-spread real estate ads in the NY Times magazine, the ones with the floor plans revealed to ungenerous comment on room size and arrangement by casual readers.

What I thought might be seen as the cratered building of my life seemed instead only vaguely postmodern in its design--some areas open to the weather, unintended courtyards, elements of accessibility and closed space arranged in a sculpture only I could have wrought myself from materials native and acquired. A sprawling building of many rooms, connected through hallways and conjoined by walls intentional and accidental--bearing walls and temporary walls.

Just so, the college as we knew it hardly existed, many of its building re-assigned, re-built. Yet, of course, we alums were and are a version of the college, a sprawling cross-continental living sculpture, a human architecture draping distance and time, waiting to be assembled and re-assembled.

And I was able to reach back full circle and find a cornerstone of former self on which to build again another private space, one of my own design, incorporating the person I was and am and will become, that shelters 15 years of accidental art I've made of a disabled boy whose life has made a collage of intentional and unintentional living spaces--of unresolved courtyards, of industrial and public facades, and, still, of interior spaces hidden beneath those outward architectural signs, spaces linked by hallways and conjoined by doors that link a found community and security and love.

Stevens writes, the great structure had become a minor house--that we return to a plain sense of things, in that return a humbling and diminishment. Yet the poem fails to take into account the significant imaginative force of renovation.

Dendrite

2011-06-21T11:12:00.000-05:00

Envelopes with blue print in the upper left hand corner invade our house all the time. My dining room table is currently covered in neat stacks of envelops--what's left over a period of a couple of months after the household bills have been culled, the emergencies dealt with, and what remains are events, instances, points of view in writing, voices from the far outside world that can be muffled indefinitely.

This envelope with blue print is from the Make-a-Wish Foundation. Approaching these large organizations, this and Disney, is something my husband does. I'm not always sure why--maybe it's part of the way we manufacture a life for Robert. We require superstructure. We make things for him: this house, outings, birthday parties, contact with friends. Robert lives inside this place we've made.

I'm tempted to believe that, for other families, life is organic: reaching out of the earth like a plant rising and rotating toward the sun. Maybe not.

While I think of the Make-a-Wish Foundation as granting requests for children who will die, the website simply states that it is for "children with life-threatening medical conditions." I breathed softly in and out my relief when I read this because I feel vaguely as though asking for a wish for Robert is some kind of untruth. I can't conceptualize his dying. I was going to type "death," but I couldn't type anything that smacked of finality. "Dying," the participle, is always suspended and ongoing.

Sometimes, when I'm looking at the medical bills, the thought that these may not be endlessly present wafts across my mind like vapor. Then vanishes. Or I wonder what we will do with all the equipment like statuary in corner alcoves.

When, one by one, my grandparents died, it seemed as though they went behind a curtain. They vanished, leaving a bright mark at the spot where they were and then were not. While I know they are gone, for me, they remain very much alive in memory and there are moments I visit them periodically in my off moments.

I mull over things until I reach a decision, and, with Robert's new diagnosis, I have chosen to ignore it. Mostly. The Make-a-Wish Foundation is a reminder in an envelope with blue in the corner. Just in the corner.

Robert may live until he is 25 or 30. Not me pushing back a sense of the inevitable, but the shifting truth of medicine itself in which some prognoses move with the slow, shape-twisting motion of amoeba and other invisible cellular and sub-cellular organisms. The type of thing that also populates the soil, both helping plants to grow and decomposing them when they're gone.

A few times this past year, I have deliberately tried to imagine what it would be like if Robert were not "here." As though he would be somewhere else. All of us do this--a matter of looking ahead at life and imaging. Mostly, people imagine good things. In my case, any forward-looking I might do now involves this idea that Robert may or may not be here at some indeterminate point.

At first when I thought of this, it was a vanishing, a vaporization. And static. Just things missing inside the house, things gone, an inability to imagine any of us in action: je fais, il fait, nous faisons.

A structure changed and rebuilt.

But now, I realize to have Robert gone would be an uprooting. An upward tug as the crinkled plant is lifted and the root apparatus with its dendrites, root stalk, the fine threads of its exploration into black soil, all this emerging from the ground with a certain force, what bound him to us snapping in a hundred different places, some of the plant tentacles broken off and left to fester. The topsoil of our lives churned, overturned, and scattered, a loose pile of loam flecked with white bits of fertilizer, strewn, strewn--the word itself difficult to say clearly with its single vowel.

Certain Proof: A Question of Worth

2011-05-23T19:31:00.000-05:00

I don't think anyone has ever asked me what the worst part of all of this has been. But if anyone ever does, my answer would be that it was the public schools. A link to the following trailer, a prize-winner at the Vail Film Festival, and, I guess, looking for a distributor, is something I've just seen, my head in the sand as it's been these last few weeks and months. The title of the film is "Certain Proof: A Question of Worth." I don't cry about much anymore, but I did when I watched this--all of those memories are still raw, my shock and anger still there, just below the surface:

From the moment Robert entered preschool, I had to prove, or he had to prove, that he was worth something. Just to sit at the table. For years and years, it was like this. And he entered the public school system in the fall of 2000, before the current era of why-do-I-have-to-pay-for-it politics. Only disabled children have to prove they're 'worth' something--and worth sometimes becomes a moving target--before they can enter and while they proceed through elementary school. Typically developing children do not, no matter how bright or dull they seem to be. I used to wish, rather bitterly, that every parent was forced, upon entry to kindergarten, to submit their child to a test that would determine the educational outcome of their child. As in, we can see by Debbie's vocabulary base at this point that she will only be capable of going to community college--so we'll prepare the transfer paperwork to send her to the appropriate school.

My son didn't have a diagnosis, and, even if he did, it seemed outrageous to me that anyone could predict who he would be at 18 when he was only five.

The problem with educating children with disabilities is that teachers and administrators assume that the fact that they have a disability is their educational commonality. And, therefore, it makes sense to segregate them in a single classroom. Or teach them in isolation, away from the stimulation of their typically developing peers. After living in this world now for close to 13 years, I can tell you, emphatically, that all disabled children are different, that their disabilities differ one from the other, that educating them is a matter of teaching to them as individuals, and that, for the majority of children with disabilities, even the most severely disabled, being taught in an inclusion classroom with individual supports will get them the farthest down the road.

I've had to listen, over the years, as a school physical therapist (who had probably never refreshed her credentials in over ten years) tried to insist that she had the observational powers of a neurologist. As his first grade teacher told me that there was no need to explore other communication devices because raising one hand for yes and one hand for no was all that Robert would ever need. As a special ed representative from the County, at a meeting where we were all lawyered up, told us that dry-erase boards were sufficient for Robert and repeated, like a mynah bird, low tech, low tech, until I thought it possible I might just leap onto the table and slap her. As an aide assigned to Robert told me that she didn't have to put Robert into his Halloween costume for the school parade after I had carefully packed it in his backpack. As the same aide told me all she was required to do was push Robert into the classroom and park his wheelchair. As his kindergarten and first grade teachers repeatedly ignored my suggestions for adapting his homework using PCS tiles (how his work had been adapted in his public special needs preschool), and ignored my suggestions meaning they simply did not respond to the notes I sent into school or to my emails.

I could go on, but I think we've probably all had a sizable dose of pathos for today.

Typically developing children do not have to prove to anyone at any time that they are 'worth' anything to remain in a public school classroom. They do not have to prove that they will not steal a car or go to jail. That they will not get pregnant at 16. That they will get into Harvard. Or even into Montgomery College, our area's flagship community college. They do not have to prove that they are capable of learning a trade or that they will be reading on grade level when they hit sophomore year in high school or that they will not develop a drug habit. And even if those things happen to them, they can be assured that, in most states, once their problems are identified, they have routes back into the system.

But because my son can't speak, he has had to prove that he is 'worth' something just to be part of what everyone else in this country takes for granted: the public schools. Speech is where people draw the line about who is or is not considered human.

For many parents of children with moderate to severe disabilities, school is the juncture at which we realize that society will only take us in under certain conditions. That whatever romantic fantasies we had about acceptance and community are 'unrealistic'.

A moment that I return to occasionally on this blog is the moment where I participated in a poetry workshop at a university in which a fresh-out-of-college student presented a poem about people with disabilities that blatantly objectified them--after a class discussion that preceded the analysis of student poems in which we all agreed that Wallace Stevens' objectification of certain categories of people was disturbing, if not wrong. I pointed out the objectification of disabilities. And I was virtually black-balled. When I tried to discuss the matter with this woman, to try to explain myself to her and even to try to accept some of the blame, she told me that her mother, a speech therapist in the Maryland public schools, had told her that I was just one of those parents who couldn't accept the fact that my child was different. That parents like me had unrealistic hopes for their children and that she shouldn't pay me any attention. I have never gotten over what I have come to understand as a profound act of verbal cruelty. And, yes, that was my wake-up call--from that point on, I realized that the therapists who worked with my son in the public schools most likely thought very little of him at all. This happened in 2002, when Robert was five.

By repeating this anecdote, I'm trying to impress upon all of you out there, whomever you may be, why some of us react so strongly to the word "retard," the theme of my last post. As I said before, it's disingenuous to believe that the word exists as a synonym for "stupid" outside of its connection to people, and especially children, with disabilities. The implied comparison to people with disabilities is what gives that word negative force and power. And, yet, the gross entitlement of people to use the word constantly shocks me, just as my encounter with the above poet shocked me--that people feel entitled to tell me who and what my son can be, just on the basis of his disabilities, without even meeting him.

These perceptions of children with disabilities are so wide-spread that they affect my interactions even with poetry and literature. And these perceptions have material consequences for these kids--education and medical care, to name the two biggest categories. If you have absorbed from your mother (who supposedly 'helps' students in the public schools) that children with disabilities are not 'worth' anything and that social integration is unrealistic, you are contributing to a social order that may someday come back to bite you when you are, perhaps under surprising circumstances, forced to demonstrate your own 'worth.'

I have no answers this evening. For worth, for value, for the expense of including my son in society. I can only hope to see this film at some point. And I can only help that empathy can create something better. I'd break out into a rendition of "I'd Like to Buy the World a Coke," if that weren't so ridiculous. Ah, the 1970s. Just shows my age. And my idealism.

Unrealistic is my banner and my shield.

Redux: Furies. Water. Words.

2011-05-21T17:29:00.000-05:00

At the end of March, I wrote a post about the use of the word "retard" in Lidia Yuknavitch's memoir, The Chronology of Water. Obviously, the memoir didn't make me feel all warm and fuzzy. Some readers encouraged me to ask her why she used the language during the online book club discussion with the author (yes, it was for a book club). I did.

At first, I wasn't going to blog about her response, primarily because I thought, mistakenly, that the book club conversation was private. I just realized that it is not a private conversation--in fact, The Rumpus (the literary website that runs the book club) publishes both an edited transcript and a link to the unedited discussion on its site.

Curiously, my initial question is in the edited transcript, but not my follow-up. Who knows why? I was actually surprised that even one of my questions made the edited transcript--my concerns were not shared by any others in the discussion.

Here's what I said, and Lidia's responses, just for your convenience:

Jeneva: I liked a lot about the book, but as a narrative that dealt in part with the reaction of the body & mind to abuse, I found the seemingly casual use of "retard/tard" and later "special ed/needs" very painful--and I wondered if there was a reason for that diction.

Lidia: i know what you mean. it was a hard choice to use that diction. but i wanted to reflect the zeitgeist and emotion of how it felt to be us at that time. and i'm not very convinced by the cultural correcting of language in general. i think language use tells us so much about ourselves. let it ride. even the icky parts.

Jeneva: Thank you for your honesty, but I see the use of those terms more as a power relationship. To be upfront, my son is severely disabled, and there are slurs that seem to be acceptable re: the disabled that are not acceptable when the reference is other racial/ethic groups. It's hard to let it ride when the issue is excluding him as a person.

Lidia: yes, i know what you mean. i am sorry for the hurt in it. but i have direct experience here too, so i'm speaking from an insider place, not an outsider one. but i KNOW what you mean and i respect what you are saying.

I felt respected for asking the questions, and in the midst of a very freewheeling online discussion in which not everyone's remarks were addressed, mine were addressed twice by the author. I should note that there's a long gap between my first and second question during which many others were talking.

Lidia says she made a hard choice to use the diction as a representation of who she was at various moments in time in the memoir. As a writer, I can see this. And I do not doubt after reading her memoir that she has empathy for other hurt and damaged people. What she means when she says she writes from "an insider place" is that she writes as a former victim of abuse, or at least that's the way I took it--that context is clear from the book.

The other thing I'll note is that, while she wants to use diction representative of a certain period in time, I don't remember the use of other diction bases, such as anti-gay rhetoric, that were also common (and still are common) during the time periods she's writing about. I can't check the book because I de-accessioned it.

I've defended, on this blog, the right of the author to use her own material, noting the difference between ethics and the use of judgment. So we could leave this with my saying that Lidia's text was not unethical, but lacked good judgment. And my response to it should simply be that: to respond.

But there are strands of my response that I cannot quite untangle. While I'm free to respond to these situations, to be angry, and so on, what bothers me most when I put Lidia's remarks in the context of other situations I've been in with respect to Robert's disabilities, is the sense that I get that my response should be silence. She wrote back to me that I should "let it ride."

She wrote that noting that she was "not very convinced about the cultural correcting of language in general." I hate to say this, but that's a pretty politically conservative argument. That language is some sort of monolith that exists in, perhaps, some sort of Platonic ideal state. Something like the idea that the U.S. Constitution represents an ideal that must always be interpreted through an 18th century lens. That we cannot interpret it with 21st century eyes.

As an aside, the Washington Post ran an op-ed about a year ago in which a conservative cultural critic argued that same thing--that he was not convinced about the cultural correcting of language. The author, Christopher Fairman, notes the following:

When [Rahm] Emanuel calls fellow Democrats "retarded" for jeopardizing a legislative plan, the term is a stand-in for "stupid" or "misguided" or "dumb" -- it obviously does not mean that they meet the IQ diagnostic standard for intellectual disability. It is quite another thing to look at a person with Down syndrome and call him or her a "retard." So, if there are readily identifiable alternate meanings, what is the reason for censorship?

This is disingenuous. If Emmanuel only meant to call someone "stupid" he could have used that term. He chose not to do so, because he wanted it to be more hurtful and more emphatic. He wanted to end discussion, so he dropped the R-bomb, the ultimate put-down. The reason he chose to do that was because he wanted to draw a parallel between the people with whom he disagreed and an ugly stereotype about people with disabilities. That's why the word "retard" has power--it suggests that the person to whom you direct the comment is so alien, so other, so very, very stupid, that that person is the equivalent of someone who is cognitively disabled. The ultimate other. The ultimate untouchable.

Robert Rummel-Hudson (another parent of a child with disabilities) makes a similar point on his blog, explaining his reaction to a Facebook comment thread:

I'm sorry, I like you, but you don't get to decide who is offended by a term like "retard". You don't get to decide if that awful word and the associations that accompany it are acceptable in a public discourse, about politics or anything else. You don't get to decide if the families who face that kind of crap EVERY FUCKING DAY need to get over ourselves. You don't get to decide that context makes it okay to use a word that gets thrown around in reference to kids who can't even defend themselves as an insult to anyone. You don't get to decide that my child and tens of thousands like her are acceptable as punchlines. If you don't understand why YOU don't get to make that decision, then I simply don't know what to say. It's not about politics or freedom of speech. It's about being a goddamn decent human being.

Which brings me back to the issue of judgment. This isn't about ethics or morals or freedom of speech. This is about using good judgment. This is about empathy. This is about learning how to be a human being. And learning to see that others are human beings. When you use the word "retard," you reduce another human being to non-human status. You'd better have a really, really good reason for doing that.

I should be able to point this out. People like Rummel-Hudson should be able to point this out. But the response that we face, repeatedly, is to "let it ride." In other words, those who use the insult duck behind the banner of free speech while telling us, the legitimately offended, to shut up. Our proper position in this debate is silence. Because we're word-Nazis, thin-skinned, unhip, uncool--we're caricatures of hysterical women, unable to sort our emotions from reason. Fairman, in his op-ed, makes a case for the retention of all words, permanently, and talks about word "reclamation" without acknowledging that words are also de-accessioned.

The writer in me, as Rummel-Hudson notes also in his post, is reluctant to tell other people what they can do with language. But the writer in me would also like to remind my writer friends that there's a long-standing literary argument that words, in fact, are engaged in the course of 'cultural correction,' or perhaps I might say that culture shapes language. Horace writes in Ars Poetica:

Each generation has been allowed, and will be allowed still to issue words that bear the mint-mark of the day. As the forest changes its leaves with each year that runs swiftly by--those that came first drop off--so with words, the elder race dies out; like a young generation, the new ones bloom and thrive. Death claims us and all that belongs to us. [. . .] all the work of man's hands must perish. Think not then that the words he says can keep place and power undecayed. Many a term which has fallen from use shall have a second birth, and those shall fall that are now in high honor, if so usage will it, in whose hands is the arbitrament, the right and rule of speech.

Language flows with the cultural tides. Indeed, it's acceptable for words to fall out of use--usage wills it so. And usage is determined by human interaction. So I argue that, yes, you should stop and listen to me when I say I'm legitimately offended. I'm not silencing you--I only ask that you use good judgment with your speech.

Your response should not be to tell me to be silent.

Let me illustrate that with a story about what it feels like to live, daily, with this kind of menacing insistence on silence.

Last fall I took my kids to a large shopping mall for the afternoon. Robert being with me, we parked in a handicapped spot--one of those spots that had a very wide access alley--so wide, in fact, that when we returned another car was parked in it. If I had had a van with a side ramp, I would not have been able to lower the ramp to get Robert into the vehicle. Which is one of the reasons I bought a van with a rear ramp.

OK. So I could get my son in the vehicle, but I did have to park his wheelchair directly behind this car, which was occupying the access alley, while I opened up my rear ramp. This is not the safest thing in the world, and I was pretty annoyed because when I went into the mall, I'd had the use of the alley and when I returned, it was taken from me.

While I was sorting this out, I noticed that there was a person sitting in the car. I could have just gotten Robert into the van and driven away. But whatever it is that happens inside me in these situations I know I should just stay out of happened once again and I walked down the white line between my van and this other car and the window was down on the driver's side and the woman's back was turned toward me. I never saw her face. But I told her back that she was parked illegally, that this space she was occupying was to allow disabled persons to get safely and easily in and out of their vehicles. That what she was doing was wrong.

She kept her back to me and turned on the ignition. She said nothing. I told her not to back over my child and I put Robert in the van. Still, she said nothing.

You might argue that the woman's silence came from a sense of shame. Perhaps. But I think it comes more from a place of defensiveness, a realization that people like me and my son are standing out there on our own, and no one is really listening to us. So why should she? Silence is one response to the disabled, the sick, the poor, the downtrodden. Silence is a way of isolating us and our concerns, letting us stand out there on our own, exposed and exposing our defenselessness.

What did I do? After I'd locked down Robert's wheelchair, secured his seatbelt, and folded up the ramp, I grabbed one of the orange traffic cones I use to mark, visually, the end of the ramp. To protect it, so to speak.

And, before I put the cone in the back of the van with its mate, I swung it, hard, holding onto the hole at the top, in order to let the base make what I thought would be a satisfying thud against the bumper of the other car. My own ill-tempered response to silence. Instead, the corner at the base of the orange cone hit the other car's tail light and popped a neat hole in it.

The occupants of the other car--by now two people, as one had returned from the mall's back exit (ye olde, I'm-just-going-to-be-here-for-a-minute excuse--didn't seem to notice. I was deeply embarrassed and, actually, horrified at my own behavior. But not enough to apologize to anyone or to accept responsibility for my own behavior.

Childishly, I got in my own car and left. Feeling a bit freaked out, but also feeling, grudgingly, even.

This is what it's like to live with the pressure of silence on a daily basis. Small acts of violence or vandalism should not be a response to it. And I don't know why talking back to people who use the word "retard" feels so much like popping a hole in a tail light. Why I feel apologetic about it after it happens.

An analysis of my behavior is, perhaps, best left to comments.

Phoebe Snow and the Blackbird

2011-05-03T14:19:00.000-05:00

Last week, I drove my daughter to the National Air and Space Museum's annex near Dulles Airport for Family Science Night. If you live in Maryland, crossing the Potomac into Northern Virginia sometimes feels like entering another country--it was rush hour and the traffic was thick, the cars moving quickly despite the glare of the setting sun.

My head swirled with iterations of "choice" and "freedom," words I hear all the time because I pay too much attention to the political news. Somehow, these words are linked, this I know, but I can never properly define what that link is, and I never quite understand what people mean when they articulate these concepts in that casual way that people do, especially many of my erstwhile neighbors on the other side of the Potomac, to whom these words seem to mean a great deal. In America, we are offered 'choices' about everything from drywall to colleges to careers. In America, we are assured that our freedoms are real and worth defending.

The Udvar-Hazy Center is all glass and metal pipe and sharp angles. We were late, so for the first time in I don't know how long, I failed to look for the handicapped ramp to the entrance as we shuffled quickly up several sets of stairs from the parking lot to the glass and steel entrance door, through which the guard performed the requisite check of my purse and told us to walk down the hall, down the set of stairs and we would find our group by the Blackbird. I expressed some uncertainty about this Blackbird, and he smiled and said, don't worry, you can't miss it--it doesn't look like any other plane you've ever seen.

As it turned out, this was not quite entirely the case, as I don't spend much time looking at planes and as we reached the end of the long hallway we could see that the hallway served as a bit of a ramp to look out over the expanse of the museum space, which was a very large airplane hangar. When very large objects are placed into an even larger space, this, naturally, distorts perspective. All I could see were planes and space craft of various sorts, real ones, both scattered over the vast floor and hanging by steel threads from the ceiling. It was the kind of display that makes one gape. At first, people themselves were not distinguishable as many of the children at the museum that evening were about the height of many of the aviation wheels, atop which perched huge planes like birds of prey.

The Blackbird was, in fact, black and of an unusual shape. Two docents were giving a presentation about pitch, roll, and yaw at the base of the plane. My daughter, curious about the plane itself, began to ask questions. At this point, I was, frankly, in awe of this giant black plane, the black up close composed of multiple plates with a greyish cast over them. Standing next to the plane was like being on top of a mountain and looking out across infinite space as other mountains undulated into the distance.

The Blackbird had no wings. But that was not immediately observable. The nose cone was drawn to a point and the point extended itself into space like a probe or a needle. The cockpit a glass triangle tucked into the upward curve from the nose cone and the plane's outline like the action of stroking a cat with two hands from the sides of the face and back along the neck, the hands gliding gently over the body, all of a piece. What passed for wings was an edge drawn out like a pucker along the side of the aircraft, as though someone had gently flattened pursed lips. Standing in front of the nose, the plane itself disappeared, save for the two huge engines at the back, which, nonetheless, protruded.

The Blackbird was designed to fly at three times the speed of sound and could travel from DC to LA in 64 minutes. A pilot planning a turn would have to begin preparation 200 to 300 miles in advance.

I have to tell you that, all of my trepidations about war and violence aside, I found this awesome, in every permutation of that word from the contemporary to the Biblical. All I could think was, what does it take to climb into that cockpit and turn this plane's nose down the runway? More confidence than I have, surely. My actual thoughts, I have to say, were quite raw and colloquial.

The Blackbird, however, is obsolete. A spy plane, it flies too fast to send a signal for digital photography, the standard of the modern era. It was designed to handle film and fly it back fast enough for it to be developed, before an enemy could change its route or activities.

That same week, many persons in my Facebook feed posted links to Phoebe Snow and her music. She died April 26 at the age of 60. I didn't think much of it until my husband pointed out that the reason Snow virtually disappeared from the music scene in the 1970s was because she gave birth to a child with brain damage. Her husband left her, and she 'chose' to care for her at home, rather than institutionalize her, an option more readily available in that decade. Snow outlived her daughter by only four years, a fact that I do not find coincidental. The Times obituary describes her gradual fade into caregiving and the concerns of earning money to support her responsibilities almost as though it were a gradual sinking into obsolescence.

Not long ago, I hyperlinked and hyper-hopped my way to the flagship journal of disability studies, Disability Studies Quarterly. I was looking for a way to articulate, in dispassionate terms, my discomfort with what is now establishment feminism. The quandary and predicament it puts me in, like Solomon decreeing that the child claimed by two mothers be cut in half to resolve the difference. I found what I was looking for in the carefully considered article by D.A. Caeton, "Choice of a Lifetime: Disability, Feminism, and Reproductive Rights," which parses the essential conflict between disability theorists and feminist theorists over abortion--in one version, the rights of the mother are violated, in the other, the rights of the disabled to be considered human are erased. You should read the entire article, really, but this quote is important to me:

There exists a contradiction, then, between arguing for the right of a woman to abort any fetus and arguing that a unique fetus must be preserved. Rather than undermining the position of disability rights advocates, though, I think that this points to the instability and illogic of choice. What constitutes a choice? On what basis is choice made and, given the hegemonic interpolation of dominant ableist culture, can a choice ever truly be considered freely made? By emphasizing a staunch pro-choice position, feminists appear to be supporting an unreflexive model of the subject that has the liberty to navigate the world free of cultural constraints. We certainly aren't irresistibly inculcated by ideology, but nor are we completely autonomous rational beings. Instead, choice occurs within cultural constraints that ultimately undermine its free operation and which contour the subject herself.

And on the drive back from the Udvar-Hazy Center, I thought about the illogic of "choice" and "freedom" and I wondered if my Northern Virginia neighbors thought, in the throes of unreflexiveness, about the irony that "choice" does not necessarily lead to "freedom" and that the two concepts might even be paradoxical. Because, in this country, we often speak about choice, especially with reference to mothers, as though it had a moral valence, when, in fact, the opposite is the more truthful. As Stephen Colbert might say, there is a truthiness to 'choice' and 'freedom' that quite escapes most of us. And I mean, all of us, as most Americans, even those opposed to abortion, toss about the words 'choice' and 'freedom' as casually as if they were flipping pancakes.

How can we define Phoebe Snow's devotion to her child as a 'choice'? As though she could just as freely have chosen to do the opposite. Doesn't that cheapen or devalue some of our most deeply rooted concepts of morality, ethics and responsibility? And I say that knowing full well that my statement is complex and treads dangerously close to arguments that would try to universalize particular creeds and religions in the name of universal morals and ethics. But we cannot, absolutely cannot substitute the concept of 'choice' for the concept of 'ethics.' 'Choice', at least in the way it is absorbed and conflated with 'freedom' (and self-determination), does not recognize the constraints that bind people. "Moral relativism" is the wrong term, a jaundiced and now meaningless term--but the doctrine of 'choice' presents options with a false glaze of equitability, a false sense that autonomy is as limitless as the horizon.

Phoebe Snow was compelled to climb into the cockpit of the Blackbird, not knowing if she had the guts to fly the plane or not as it took off, three times the speed of sound, taking her away from what she knew of herself, the notes of her songs lingering in the plane's wake.

Vortext

2011-04-14T16:23:00.000-05:00

When I think of myself these days, if I think of myself at all (because sometimes one doesn't, sometimes there is no reflection, just being in the world), I see a paper cup of coffee. With enough milk so that the coffee loses that depth of field that even the darkest clear liquids have, enough milk that the liquid becomes opaque, the milk blooming to the surface in soft globes. With a balsa wood stick, the milk is stirred, faster and faster, so that a vortex ensues, a cone like a three-dimensional 'v' seeming to draw everything down to the bottom of the cup.

That, of course, is not what happens. Rather, the vortex spirits the liquid particles down and in and then releases them to the sides, where they float up and back down into the vortex. (I keep typing 'vortext' which would seem to be some sort of contextual message). A self-contained system.

So this is me over the last decade or more. The vortex is Robert's health. Or it's my psyche. Or it's the nervous energy I used to bring to everything--but there was that ability to keep everything spinning at once, like the street acrobat who keeps the plates rotating on sticks. Of course, everything (medical bills, doctors appointments, writing, caregiving, homework-assisting, housebuilding, job-working) kept vanishing to the point at the bottom of the cup and then returning only to be drawn back in again.

What would it be like, I used to think, for things to be different? For an answer to emerge?

For many years, I was too busy to notice that these tasks repeated endlessly. That finishing them was only a prelude to return. As I said, medical bills, doctor's appointments, medication refills. The like. Completion seemed an art in and of itself, and completion was a good behavior pass that gave me time to write. And I couldn't write if things remained undone. But I wrote anyway, believing things were done, believing in the creation of mental space amid socio-temporal clutter.

In such a vortex (or vortext), there's little to hold on to. Things fly by, in and out of your grasp, and you just keep moving as though there were someplace to go. Because everything around you is moving. Frank Bidart has this poem about, how, at birth you are handed a ticket--something like that--but the poem operates on the principle of repetition, such that the poem becomes a vortex for its own words. And the words go round and disappear and resurface. The poem is in Star Dust; you should read it.

One imagines change as difference. Sometimes change is not different at all.

The anticipation of Robert's diagnosis, its nearness, as it crept toward us or we toward it over the course of the last year, was worse than its actuality. Because it seemed as though something would change once we were sure. Diagnosis would be a tipping point--like something out of television or the movies, diagnosis being the point of drama that sucks the gut in and starts the tears flowing and the patient suddenly realizes (or his wife or the daughter or the niece or the helpful neighbor) that a curtain has been lifted and now Things are Different. Bidart has another poem in Star Dust about a veil, which is like a curtain, and the way a veil is a brink between imagination and realness, by which I mean that things are tangible. Or that we may recognize things by their tangible qualities. Realness, not reality.

Diagnosis is not tangible. Maybe it's a point in time, or some words on a lab report. Diagnosis is a label that goes on a bottle that already contains something else. Sometimes, diagnosis is a kind of magic that allows you to transform the contents of the bottle, sometimes it is not. But the bottle and its contents have been there all along, and maybe you know that and maybe you don't.

Sometimes change is not different at all.

And this seems odd. But that is indeed the way it is here, at my house. That Robert has a probable mitochondrial disease is helpful, because it allows us to understand what it is in the bottle. But it doesn't change the contents of the bottle. And it hasn't changed much of anything else, either: bills and school and jobs and grocery shopping and making weekend plans and all of that.

And there are times when I wonder if I am in some state of shock and don't know it. Because if an apt image is that cup of coffee, stirred vigorously, that is me looking back on something that I was. What I feel like now is the moment after the stirring stops and the liquid molecules go round and round for a while, but the vortex lifts from the bottom of the cup and its circles go wide and slack and suddenly everything that was set in motion is now simply drifting aimlessly.

And I'm wondering if that's a bad thing and whether I should be worried. At any rate, it is a feeling to which I am unaccustomed, and I find myself without many thoughts or much direction, really.

Explaining to other people what this feels like, this news, seems as though it might be the act of grabbing strangers on the street by their lapels and shouting, Robert has a diagnosis, into their faces, which would be quite wild with fear as, to their eyes, not a thing is going on. People understand the dramatic moment in the doctor's office, the shift from not knowing to 'knowing' what is wrong; they don't understand what it means to be spun in circles for 13 years such that the moment of knowing is spun out like a long, tensile thread from a spindle and distaff that no one will cut, not even the Fates. To be the weft and not the warp.

When we imagined change and difference, we didn't imagine this: a simple snipped thread. We, my husband and I, had this idea that when things were different, we could make 'plans.' Find direction. The way opens, as the Quakers say. And it's tempting to don the cloak of easy sentimentality and say that the way was open all along--just the way Glinda tells Dorothy that she could have gone back to Kansas all along, which felt comforting as a child, but now makes me wonder if the Wizard of Oz is sadomasochism all dressed up in green felt and red shoes and holding a wand for good measure.

The reality (or the realness) is that the only direction, all this time, has been Robert and his diagnosis, his medical care, his insurance needs, and it's possible that we have been driven so far down this path that there are no other markers for other trailheads.

Or maybe I'm just not used to things being at a standstill, and I'm dizzy from all the spinning. 'Plans,' I find, are impossible to formulate, just as it is impossible to formulate poems or make associations right now. I guess that would be the result of dizziness: an inability to find direction. An inability to find a metaphor as my thoughts, really, have not stopped--they're just still moving at speed inside my head, such that they are barely recognizable.

When we imagined change and difference, we didn't imagine this. So maybe our lives are an allegory of the Obama administration. Obama, who said yesterday, "I will not tell families with children who have disabilities that they have to fend for themselves." Just the branch to grab hold of as the great world does keep spinning, regardless of the directions we plot upon its surface.

The Perils of Planned Parenthood

2011-04-09T17:49:00.001-05:00

I spent most of yesterday at my desk at work, worried about the impending government shutdown. Frustrated, but doing my job, and, in an open window on my computer, letting the Washington Post comment stream float by in live update mode as 2-3 new comments were posted every 5-10 seconds. That is not an exaggeration.

Once again, Planned Parenthood and abortion services were under attack--a familiar theme in our national discourse. Both sides had reached an impasse, not truly on budget cut numbers, but on whether to continue federal funding for Planned Parenthood. At stake, the weary battle over abortion in all its ugliness and misrepresentation. The Post comment stream reflected this: a profound ignorance of the fact that while federal funds do go to Planned Parenthood (1/3 of its revenues), those funds may not (and aren't) used for abortion services. And abortion services make up only 3% of its services (contraception, for example, represents 35%). Private donations (something that, honestly, should be sacrosanct in this country) fund abortions. Federal funds pay for women's health services, varieties of counseling, and, yes, contraception.

So the animus on the Republican side was, sorry for my readers who lean right, simply wrong. And, I would argue, mean-spirited. Planned Parenthood receives government funding to perform essential healthcare services for women, and it is an excellent model of a public/private non-profit organization that uses donations to supplement work that the federal and state governments are not always able to do. Planned Parenthood raises 37% of its operating budget from health center income and another 28% from private contributions. (All of these data are from their most recent annual report.)

All that said, I had the same struggle with my knot of emotions about Planned Parenthood and NARAL that I always do. I am keenly aware that many people in this country think that if my child could have been aborted, he should have been aborted (and this attitude crosses the political aisle). Parents of disabled children represent the full spectrum of American politics--that's what makes us, truly, representative of America in a way no other subpopulation or interest group is. Because disability strikes the rich and the poor, all races and all ethnicities with ruthlessly random efficiency. One of my cousins who parents a disabled child thinks that Sarah Palin rocks. The other would probably rather spit in Sarah Palin's eye. And, of course, Palin herself is the parent of a child with disabilities.

I have little interest in Sarah Palin, but it does get under my skin when people suggest she uses Trig for political gain or, even, that she shouldn't think about having a career while her son has special needs (among other nasty things that have said about her child and her caring for that child). Because when people judge her decisions and her attempt to exercise a right to self-determination, I know for sure there are people out there judging mine.

I am a progressive voter who will probably never vote Republican, and, yet, feel increasingly alienated from the Democratic Party. When the budget negotiations came down to the issue of Planned Parenthood (and the fake issue of abortion), I felt as conflicted as I had been when the passage of the healthcare legislation came down to Planned Parenthood, NARAL, and abortion funding--about a year ago.

I was already aware that millions of dollars in Medicaid cuts for children's healthcare had been proposed by the President himself. And the Democrats were going along with it. Republicans wanted to cut the budget for school lunches for poor children by refusing to fund fruits and vegetables. For all I know, that passed. Services for the disabled were taking cuts.

And yet, Planned Parenthood, an organization that arguably does a lot of good, was once again a sacred cow. And this is because that's the way lobbying works in the vast advocacy apparatus that encompasses DC politics. Planned Parenthood has a separate lobbying arm that has worked hard to elect Democratic politicians. Abortions and women's healthcare rights have been, solely, a Democratic issue. Thus, elected politicians are beholden to them, and to NARAL and to Emily's List. None of these organizations lobbies for the rights of children, the apparent detritus of our everlasting war about 'choice' and 'life.'

Don't get me wrong. When Harry Reid said that the healthcare rights of women were extremely important, I felt good about the fact that finally, finally, politicians were really willing to stand up for the rights of women. I felt good about the political power that women have been able to achieve. I feel proud that Debbie Wasserman-Schultz will be the new head of the DNC. I still like Nancy Pelosi.

But here's the thing. My husband, who scans the voluminous copy of news reports and political websites and political blogs, tells me that, in order to save $300 million in funding for Planned Parenthood, the Democrats gave up at least another $1 billion in cuts. And while I don't know exactly what those cuts are, I can imagine that, given the tenor of this national conversation, many, many of those cuts will negatively effect the medical needs of children, including disabled children, and the care of children--from how they are nourished to whether there's a roof over their heads.

To me, this is something of a Pyrrhic victory.

Yes, I know that Planned Parenthood is a non-profit organization and that, in order to maintain its non-profit status, it must define its mission in a clear and delimited way. And that mission does not include the health needs of children--perhaps not out of callousness, but of practical necessity. This is the first paragraph of Planned Parenthood's mission:

Planned Parenthood believes in the fundamental right of each individual, throughout the world, to manage his or her fertility, regardless of the individual's income, marital status, race, ethnicity, sexual orientation, age, national origin, or residence. We believe that respect and value for diversity in all aspects of our organization are essential to our well-being. We believe that reproductive self-determination must be voluntary and preserve the individual's right to privacy. We further believe that such self-determination will contribute to an enhancement of the quality of life and strong family relationships.

In posts over the years on this blog, I've struggled with my relationship to the word "choice" and the way its referent valence to reproductive rights has been absorbed into the American lexicon. I've argued that "choice" has been co-opted from the abortion debate, in which it represents the value of reproductive self-determination, to a colloquial referent that is used to judge women negatively who have children and are still convinced they have some right to self-determination. The term was once turned on me by a friend who was a Buddhist nun. When I articulated some of the hardships involved in raising Robert, she gently chided me by saying, but you chose to have Robert. And that was mild compared to the ranting that goes on in comment streams that involve women and children.

I've also argued that "choice" has become an intra-femina moral marker to categorically exclude women who've experienced negative outcomes with their offspring, whether those outcomes were situational or medical. This is most apparent to me when women who face few life constraints wax on about how carefully they planned their pregnancies and how well those pregnancies and children and their lives turned out as a result of those women's appropriate decision making processes. This is moral talk: I'm a good person because I chose well. You're perhaps not a bad person, but clearly you choose poorly in some way you neglected to anticipate, so you are, at least, an inferior person.

Ah, American Calvinism--The Protestant Ethic and the Spirit of Capitalism. The elect are made manifest by God's material blessings, while the rest of you bear the signs of God's just and rightful abandonment.

The word "choice" does not make much of an appearance on Planned Parenthood's website. But an insistence on "self-determination" is repeated. This statement is from the introduction to the annual report:

For more than 90 years, Planned Parenthood has been a change agent — fighting for a world where every child is wanted, loved, and treated fairly; a world where women’s health is a paramount concern and access to health care is not only a right but a reality; a world where women are in charge of their own destinies.

You can see the obvious irony in that last sentence for women like me, and my friend Elizabeth, and my friend Erika. We have, each of us, in public, come to variously angry, tearful and sarcastic terms with the big, broad, concrete wall fact of our inability to be "in charge of [our] own destinies." Because we gave birth to children with profound disabilities. Vicki, too, struggled with this while her son was alive--and her memoir, This Lovely Life, is a book that is refreshing because it, indeed, acknowledges that anger at societal constraints (not at our children) is a valid response to what happened. None of us are angry or resentful of our children. We're pissed off at the society that makes our lives a living hell at times because it assigns our kids zero value, both in economic and social terms.

Which brings me (I can only speak for myself) back to Planned Parenthood. Reproductive rights are important, and I would never interfere with any woman's decision to have an abortion, but this message about "self-determination" represents a false dichotomy. In the culture in which we currently live, reproductive rights only offer unfettered self-determination if a woman chooses not to have children. Therefore, this is an awfully gauzy premise that our feminist groups try to float toward us. That you have the power to plan the full details of your reproductive destiny is kind of a big, fat lie.

Just in terms of childbirth, any honest OB/GYN will stop you dead in your tracks when you start talking about how you've planned your baby's birth down to the last details. When I asked just whether I could wear a favorite night shirt, my OB said, sure, if you're OK with the possibility that we might have to cut it off you in an emergency. Genetic problems are not caught by every prenatal test, babies suffer oxygen deprivation when they're tangled in umbilical cords during birth, genetic and metabolic conditions present themselves years after birth, and, of course, there are accidents. These can happen to anyone, regardless of all your careful planning.

We deserve better than this gauzy false promise. Planned Parenthood's mission is limited, and its commitment to the rights of women stops when a child is born. After that, we're on our own, ladies. Having made our 'choice.' How is this different from the world my grandmother was born into? I mean, sure, if I don't have kids, my economic and career prospects are at near parity with those of men, but if I do--let alone if my kid is disabled--

Sorry for the undercurrent of resentment. Can't be helped.

Going back to the money and the budget issues: what bothers me most is that neither side, Republicans nor Democrats, is currently committed to the healthcare and nutritional needs of children, let alone the programs that fund support services for children with disabilities, which is what articulates a space for some self-determination for their mothers and families. Arizona, California, Texas, and Florida, among others, have all made draconian cuts to Medicaid for children and community support resources for children with disabilities. Medicaid reimbursements are becoming so low that some children cannot find a specialist who will take them as a patient to treat their health problems. I'm lucky to live in Maryland where I haven't yet faced those--but Robert's been on a Medicaid waiver waiting list for years to help us with the costs of his medical care. And if Representative Paul Ryan has his way, when Robert turns 18, Medicare is going to hand him a voucher and say, hey, kid, here's a few bucks to see if you can buy an insurance policy on the private market--too bad you're tube-fed, confined to a wheelchair, ataxic, and non-verbal--I guess it's going to be expensive for you.

To bring this, to try to bring this post to a close: if we're willing to throw $1 billion in domestic cuts overboard, many of which benefit children, the disabled, and the poor, so that we can preserve $300 million for Planned Parenthood, an organization that is 2/3 self-funded and that has an aggressive donor base, are we as Democrats or persons leaning left approaching moral equivalency with Republicans? That it's all well and good to support "life" or "choices" while they're in the womb, but we have no responsibility to the well-being of children once they're born? That, at any rate, has long been the accusation Democrats have leveled at pro-life Republicans.

I mean, jeez, an abortion costs $500 to $1,000 dollars. Birth control is $30 to $50 per month. The cost of treating a child with autism runs into the tens of thousands of dollars per year. Robert's orthotic braces, which he outgrows periodically, cost $1,800. The biotin that keeps him alive costs $3,000 per year, and the generic form of Prevacid that keeps him from aspiration pneumonia costs $4,000 per year. New epileptic drugs are being produced all the time, but they range from $300 to $700 per month. Wheelchairs for kids are $10,000. And the cost of respite care, if your child needs skilled nursing care, is $20 to $30 per hour.

At what point in time are we going to align ethical priorities with our politics? At what point in time are we going to realize that women's self-determination is about a lot more than the threshold decision to have or not to have a child? When is there going to be a powerful women's lobby that advocates for all women equally?

Boys: Submissions Guidelines

2011-04-07T13:28:00.000-05:00

A couple of days ago, as I was rinsing dishes at the kitchen sink, my daughter asked me if I knew that boys' egos were as fragile as girls' were. That you wouldn't necessarily think that. She'd read about that in a book on 'girl stuff' I'd given her last December.

For a moment, I felt myself morph into my father, who sensed male predation in every situation that involved male/female interaction. Then I said, instead, yes, it's true. Boys always have to be out there, putting their egos on the line. They're usually the ones to call the girls, they ask the girls out, they hear a lot of "no." It can be tough to be a boy, I said. This all seemed the fair thing to say, rather than warning her off boys altogether.

Our exchange made me think of two things: the ongoing conversation spearheaded by VIDA about women and publishing and reviewing and submitting work, and my own encounters with 'boys' over the span of my life, because it never really ends. I wrote about this (not boys) not long ago, but it's still on my mind--the quest for publication, the tug of war over submitting not enough. The bottom line is, you must submit and submit and submit to get anything in print.

To recap the VIDA discussion: books by women are reviewed less than those by men, there are fewer female reviewers than male reviewers, fewer women appear in journals than men, and, not surprisingly, there are fewer women in the slush pile than men, and editors solicit less work from women than from men. And, some editors argued, even when they solicit work from women, women are far less likely to send something than men are. A Tin House editor put it this way:

Of solicited writers, I see a distinct gender difference. When I solicit male authors, the only ones who do not submit are those contractually bound by other magazines. For female authors it is closer to 50% submit after being asked.

Male authors, in the face of rejection, are much more likely to submit more work, (and sooner) than their female peers. This is true even when the female author is explicitly requested to send more work.

Yes. "In the face of rejection, male authors are much more likely to submit more work." And this made me think of all the ways (straight) women are socialized when it comes to gender and the mating dance. (Apologies to my gay and lesbian friends and readers--I'm a limited person and can only write about these gender issues from my perspective as a straight woman. Eileen Myles has written a much loved essay that touches a little bit upon some of this from a, perhaps, much more universal perspective than I am capable of.)

Even the words "submit" and "submissions" take on an eerie double-entendre when considered in this odd half-light of work and socialization.

Men are always putting themselves out there. (Or being pressured to believe they have to put themselves out there.) And they take a lot of 'no' for an answer. Any woman who has sat with friends at a bar or at a party knows this to be true. Men expect to hear 'no.' And then they move on and approach someone else. Ok, maybe not all men are like this. But it seems I must generalize a bit or lose my point. Or maybe my experience is most often with bolder men because they tend to get my attention as I am and have been most frequently oblivious in these matters.

I have a certain amount of affection for these sorts of bold, brash men. And I'm not talking about the point-scoring frat boys of fact and legend.

But that is the crucial distinction: how do you tell the bold good boys from the bold bad boys? Women are taught to deflect male attention, especially that sort of random male attention that ranges from sidewalk catcalls to the seemingly nice guy who tries to pick you up at a party? There's real emotional and physical danger bound up in response to this. Maybe you can't tell. So women have been socialized to deflect and reject. Some guy tells you you're beautiful? You wave it away. An editor implies that you're talented and would like to see more of your work? Maybe you don't really believe it. Hell, maybe you didn't wash your hair today and don't look good enough to send anything in.

Submission(s) are a risk. And if you submit too much, people may call you names. Women may call you names behind your back and men to your face. Because that's putting yourself out there, that's, in an old-fashioned term from my childhood, being "forward." And men and women are both are socialized to respond negatively to forward women. Which will make you timid if you're putting together submission packets of your poems and stories and nonfiction.

How forward can I be and still have him respect me in the morning?

Can I respect myself?

And then there's the hurdle of realizing that you have to do the asking. We, maybe, don't know how to put our egos on the line. Listen, I don't know if women really take rejection harder than men. But we have been socialized to be inhibited about asking for what we want, offering ourselves (our work) as a worthy prize. Men tell us we're the worthy prize. So our ego barrier is double. Which may mean we do take rejection harder.

If people are going to put you down for being forward, even implicitly, how can you be out there enough to feel that sense of accomplishment, of having earned what you receive?

And, at the level of our deepest, psychosexual beings, women are socialized to reject and despise those guys on the make at parties, in bars. We're not supposed to fall for that. We're not supposed to be like them. We're not supposed to like it or want it. That's bad behavior.

But the thing is, as writers, we have to want it. What keeps us going is that drive. To be a writer (of course).

None of this solves the problem of women and literary submissions. Or women and representation in book review sections. Somewhere, in A Room of One's Own, Virginia Woolf says something like, but that does not solve the problem of women and fiction.

Woolf also said, in her diaries, "I find at age 40 that I can begin to say something in my own voice, and so can go on without praise."

After I turned 40, men, random men, started paying more attention to me--you know, on the street, in a bar, at a conference. I found this strange, as it had not been a factor in my life in my 20s when it might have mattered. A few years ago, a male friend told me, it's probably because you have more confidence now and you exude that.

Confidence, ladies. Confidence. Submit and don't stop.

Furies. Water. Words.

2011-03-27T14:33:00.000-05:00

I went to bed angry last night. Angry at language, at words, at writing. A few months ago, I joined an online book club, at the Rumpus. Each month, a book is mailed--until now, due to the reading load I've taken on for a project, I haven't had time to read the book.

This month, I did. A female writer, a memoir, blurbed by Chuck Palahniuk, David Shields, and Andrei Codrescu, powerful men. The work promised a different structure, and it delivered: a life interwoven, chapters like shorts, a bold, clear voice. The book is The Chronology of Water, by Lidia Yuknavitch. A woman with a wild ride of a life, an academic, a liberal, someone who shows throughout her book that she identifies with the powerless.

Um. Except the disabled.

The first time it happened, "He [her father] opened the letter more slowly than a retarded person" (p. 46), I shrugged it off. Poor choice of words, I thought. I liked the speaker, I really did. And I wanted to keep liking her.

The second time it happened (p. 136), I winced: "So while I tied the slowest, like retard slow, most careful giant looped bow on one of my sneakers ..."

The third time it happened (p. 140), I wasn't sure, initially, how to calibrate my reaction, how to express my shock. And I wanted to re-read The Sound and the Fury. Yuknavitch tells the reader that another writer once dismissed a story of hers as trite--a story written in response to Caddy and Benjy of Faulkner's The Sound and the Fury. This is her partial synopsis of her own story:

In my story, Caddy is in the present. She lives next door to a tard neighbor boyman. Because she is sexually insatiable, and because he both scares her with his too white skin and his too big for body head and his giant pants bulge and the sounds that come out of him instead of language and his pure physical brute force, she goes over to his house one day and takes her clothes off in front of him.

OK. So, in Faulkner's novel, Caddy's sexuality is the central issue, and, admittedly, the last time I read this novel was about 20 years ago, and Yuknavitch does not quite tell the reader exactly what she was trying to illustrate with this story--and granted it was a story she wrote early in her writing career--well. Here we have a person with disabilities described only in terms of his physical characteristics and 'abnormalities.' He is difference embodied. Sexualized difference. Hyper-sexualized difference. And frightening. We could substitute 'black man' in the passage quoted above, and change the diction slightly to reflect that, and then this would, instantly, be racist. But it's not prejudicial, apparently, if it's about people with disabilities.

And, frankly, what bothers me the most is the casual use of the term 'tard' to describe the character. Even if this story has serious things to say about Faulkner or feminism or power or hegemony, the choice of diction to describe the character who encompasses these meanings is awfully flippant. Which is a verbal signal that, perhaps, there is a lack of awareness about the subject and the subject matter that indicates that this story is, on every level, probably deeply flawed.

Never mind the fact that Faulkner's experimental style when writing the 'Benjy' section of The Sound and the Fury is an important contribution to postmodernism and experimental writing. That the reflection of a mind with differences is used, then, by Faulkner to illustrate similarities with the ebb and flow of the human condition--that, in Faulkner's novel, Benjy as a narrator has a place at the literary table. Never mind all of that--let's just turn that character into a stereotype.

The fourth time it happened (p. 149), I was getting angry. My empathy for the speaker had vanished: "I had my bright blue tard helmet on backwards but no one noticed." The speaker is going kayaking. She's high. She nearly kills herself. I was genuinely rooting for the rocks and the river. Hey! TBI! See what it's like to lead the life of one of those poor unfortunates you're crapping on.

Lidia Yuknavitch does not sustain a traumatic brain injury.

But the fifth time. The fifth time (p. 264). That brought out all my mother-fury:

When I first began writing this story my son Miles was seven. [... ] Miles absolutely loves swimming pools. The thing is, Miles can't exactly ... swim. When Miles gets in the pool, there is no other way to say this, he's a spaz. And he's wearing more weenie water gear than a special needs deep sea diver. Don your protective gear: goggles, life vest. Then he wades in and has the time of his life, prepared for any aqua danger, looking like a water nerd.

[...]

When I was seven I won 13 trophies with little faux gold girls leaning over for the dive on top. If my seven year old me saw his seven year old in the same pool? With all the gear? Well first of all my little posse of athletes wouldn't have gone anywhere near him. Gyawd they would have gone. What's wrong with that kid? Is he special ed? But the me inside the me would have adored him. I beg my current salary I would have been the one wishing I could swim over and try out his cool gear.

Actually, there are plenty of other ways to say all of this. She's a writer, she can think of them. My late-at-night, last angry thoughts before bed were simply a frothing fury: they involved expletives and threats. If anyone out there doesn't know it already, 'spaz' is short for 'spastic' which is a description of the muscle tone of children (and adults) with brain damage.

The entire passage uses the figure of the disabled child as the straight man for Yuknavitch's loving and 'humorous' anecdote about her child. So she's using my child's greatest vulnerabilities to create empathy for her own kid. Using my kid as a throw-away figure, a marker of difference, an emblem of lesser things, to sharpen the contrast between her kid and his cohort: see, she says, Miles isn't really like that, he's adorable. He just looks like he could be a 'tard'--he's not, look closer.

And given how Yuknavitch has thrown about these slurs in the last couple hundred pages, I don't buy her sentiment that she "would have been the one wishing I could swim over and try out his cool gear." No way. She'd have been snickering with the rest of her friends.

Never mind the fact that this book is framed by two particular pieces of Yuknavitch's life: her stillborn child and her living child. Which makes her casual bigotry for the disabled that much harder to tolerate, as she is, as a narrator, asking for our empathy in ways that cannot really be denied or withheld.

What makes me really livid, is that Yuknavitch is an academic, an academic who claims to have learned a lot from, even loves, postmodern theory: Foucault, Spivak, Derrida, and their compatriots. The thing is, postmodern theory is, all of it, at its heart or periphery, about power and hegemony. An ardent feminist, a champion of gay rights, Yuknavitch knows this. So why is she so blind to her own casual ridicule of the disabled? To her own use of the words 'retard' and 'tard' as hegemonic markers of difference? I may look like one of them, she is saying, but I'm not. I have the power to make fun of them. I have the power to use these words in my incidental speech without blow-back, without harm to myself. No matter how screwed up I am or my life is, I'm not one of those people.

And I am helpless to defend my own kid. Sure. I could log on to the book group discussion of this sometime this week. I could say my piece to all of these cool, experimental, avant garde types. I would be ridiculed. I would probably get ye olde 'it's just a word' lectures. I might be handed some diatribe about freedom of speech, or the rights of the artist. I would be accused of being simplistic. I would look like a prude, part of the bourgeoisie, a librarian. I don't think I want to subject myself to that. Do I lack courage, or am I just cognizant of my own powerlessness? Because some of the people who contribute to this book discussion are powerful in the literary world. And they wouldn't like it if I told them what I thought.

Hey. It's not easy being self-righteous. But I haven't yet figured another way to manage this problem.

As I finished reading the book--because at that point, I was collecting citations--my eye caught on the word 'idiotic' and I was reminded that 'idiot' and 'moron' were also once medical terms to describe people with disabilities. Now they've found a home in our language, cleansed of those associations. This is what supporters of the right to use the word 'retard' claim has happened to it as well.

But why does it still sting, then? Is it because it calls to mind an image, and not simply a reference to lack of intelligence? And why do my interactions with people who cling to this word and its subsidiaries feel so much like a power struggle? In the couple of instances where I've confronted someone and they've resisted, their impulse has been to belittle me. Power. Rights. This word is a totem, and it conveys rights unto the speaker: using it, like using the n-word a century ago, confers status on the speaker, establishes and confirms a pecking order, the 'natural' order of things.

It's not a coincidence that hostility toward attempts to dissuade people from using the word 'retard' is concurrent with the higher visibility of disabled people in society: in schools, around town, on the job.

But when 'retard' and 'tard' are printed in a book, it's more than just the author saying it. Someone edited this book, others blurbed this book, others have reviewed this book, and they have all tacitly condoned this use of speech. Maybe they didn't think about it. But, of all people, the book's editor should have had second thoughts, and she didn't. So a whole community of people, of literary people, have nothing and everything to say about this.

Toward the end of the book, Yuknavitch recalls a word, 'Salishan,' that had a totemic force for her--a positive force:

Then we all went down to the pool. The pool of my childhood hope. Miles kept saying the word Salishan. Words carry oceans on their small backs.

Joy.

A word. An act of imagination.

Yes, Lidia, words carry oceans on their small backs.

2011-03-08T17:35:00.000-05:00

Not so many days ago, I was on the George Washington Parkway, or the GW Parkway, for those who are local. I was headed south. In that direction, the parkway is a long, graceful freefall down the slopes of Virginia toward the river--mile upon mile of low stone walls, trees bare in the pre-spring, debris of last fall's leaves, everything a differentiated fawn color. The trees flicker by, real alternating with shadow in staccato as the car drops with each mile lower.

I like this time of year--nothing is 'pretty' on the parkway, just various shades of brown, but the palette is the color of attentiveness. Sure, brown is dull, but this range of color is the color of waiting, of expectation. An expectation of pale green, buds dotting the branches, the spears of plants about to rise. 'Barren' might be the word to reach for, but barren it is not. Fertility in disguise.

I'd crossed over from Maryland into Virginia via the Beltway and was on my way to a meeting in Northern Virginia. It was the weekend, and traffic was light.

Two lanes in each direction, the parkway has no shoulders and all the long downward glide, it curves gradually one way and then the other. To the left is the long drop to the Potomac, but the trees hide that, hide the rapids at Great Falls, until the river is visible as the slope begins to level out, the river now broad, placid and unhurried--university boathouses small on its opposite shore--until the road ducks under the giant arch of the Key Bridge and the traffic thickens and other roadways converge and merge and otherwise nest into a disorienting knot as the parkway winds through landmarks, the famous DC monuments visible across the river.

Then a shift to interstate as my route delves into another knot of highways. I'm a bit afraid of getting lost.

Driving into Northern Virginia, for people from the opposite shore, is a foray into the unknown known, where everything seems familiar, yet you must think quickly or be routed away from your destination and toward a city whose name you know, but with an unfamiliar street plan. Everything seems in reach, but a wrong turn could lead to 30 minutes of uncertain backtracking.

The day before, we'd taken Robert to Children's National Medical Center in DC for an appointment with Dr. Andrea Gropman, a mitochondrial specialist. Children's, also, is an unknown known, the treatment center we gradually left between 2006 and 2008.

The entry and hallways were still the same. Parking was still a nightmare. But the neurogenetics clinic was new and friendly, with fresh paint and bright colors and large wall stickers of kid-friendly characters.

Clinic is a crossroads of doctors and residents and medical students and genetic counselors, nurses and others. Some of this was familiar: the case history by the resident with the medical students looking on. Some of it was not: when we left Children's a few years ago, Robert had an "unknown neuromuscular disease." Few people know what to do with a child with an unknown disorder. For many, he was static as a stump--barren, without green shoots or leaves.

He returned as a child with a probable mitochondrial disorder, with a brain scan that says Leigh's syndrome. Unsure what to expect, I kept myself close, ready to put up my defenses. I had expected, as prognosis, a one-way freefall toward further deterioration. On the web, the same single paragraph about Leigh's persists through multiple iterations of search terms and web pages. The paragraph is grim.

But here, in the clinic with the freshly painted white walls and bright colors and Superman and Sponge Bob decorations, we learned that life, as always, is more complex than we imagine it to be. Yes, a tangle of highways that merge and converge--a route that may still be disorienting, that may take us to a destination we recognize or re-route us toward a city whose streets we've never known.

Every child with mitochondrial disease is different, said the genetic counselor, a cheery woman with an enviable liveliness. Even children with the same syndrome and the exact same genetic defect can have very different outcomes. We should think of Robert as living for years and years.

There's more to tell: a central place to monitor Robert's medications and supplements, more conversations with Keith Hyland about Robert's neurotransmitter deficits (which are not part of the syndrome, necessarily), what may be a re-routing of Robert's services back to Children's, the eventual development of a treatment plan. That kids with mito may have bad years and regress, followed by good years in which they recover and stabilize.

But none of this matters. The future is still uncertain, but the river to our left, out of sight, mostly, is broad and placid. For now. We know everything; we know nothing. Life flickers by, alternating what we know and what we don't, but the world is expectant again and green shoots may still rise among all this mottled brown shadow.

The soft or shrill voice within us

2011-03-04T10:12:00.001-05:00

As a result of The Count at VIDA, in which literary feminist superstars have demonstrated that women review fewer books than men, women's books are reviewed far fewer than the books of men, and women are published far less than men in many magazines and journals, I've been doing a lot of thinking for the last month or more.

Responses to this more than obvious phenomena have varied: women don't submit enough, women are published in proportion to their representation in the slush pile, it's the publishers' fault, women tend to write on subjects men don't want to read, male editors don't solicit women's work, and so on. (You can start link surfing here.)

The charge that seems to stick, though, is that women don't send out their work enough. Or it sticks for me because I don't send out my work enough. I send out stuff haphazardly--maybe 15 or so submissions per year or less. This has garnered me 17 poems in print or forthcoming, and 3 nonfiction pieces in print or forthcoming. Seems respectable to me, but I agonize over making progress with publication constantly. My output is not enough to even try to get to the next stage of the process with this (to even be in that group of writers jousting for that stuff), where I might be able to 'win' some freedom in the form of fellowships, grants, residencies, and so on. The monetary side of all of this. I can't seem to pull together the time to make some kind of book of all this poetry and what not. At least one I'm happy with.

There are material reasons and there are psychological reasons for my gross failure to paper (or cyber-paper) the lit planet's huge slush pile with my work. As my disability parent readers will surely recognize, all of us have life sh*t to do, but it's f*cking hard (profanity seems a good choice here) to do all the regular sh*t like groceries, bills, repairs, maintaining friendships, reading the book for book club, taking care of the typical kid, and holding some kind of part-time job, while simultaneously caring for a child with disabilities, even if you have a spouse to share the action with. (See previous blog posts on the time spent making appointments, dealing with doctors and therapists, managing prescriptions, reviewing and paying medical bills, purchasing durable medical equipment, managing personal care for said child, and driving around the f*cking county and state endlessly, let alone deciding to change medical facilities.)

So, you can call this whining and excuse-making all you want, but my life is just busier than yours. That's the material reason. Basically I have two part-time "jobs" and have to choose daily, weekly, monthly between writing and sending stuff out.

But there's more. My husband has gotten engaged with all this discourse about women and writing, and in our spare time as we watch all the biased news on TV and snipe at the anchors and politicians and the commercials in between (ads for Gain really use the word "gooder"? really?), we talk about me and my problems. Well--it's self-indulgent, but it's something to do when you're tired late at night and can't do much else. A lot of this dialogue consists of my husband marveling at how self-critical and disparaging and insecure I am about what I do in what I consider to be my 'real life.'

This morning, via links friends have posted on Facebook, I read this blog post. And something just clicked, although pieces of this have been floating through my consciousness for some time. Not just all the stuff about school-age girls, but that bit about the fictional Carrie Bradshaw being told in a review to just shut up--accompanied by a photo of her with her mouth taped shut. Yes, I know, mentioning Sex and the City is a good way for people to tell you to just shut up.

But, damn, this is the image. What do I fear most? Being told to just shut up. Because I don't know enough, because I talk too much, because what I say is simply stupid. This feeling comes from a lot of different places: from the general zeitgeist and from specific experience (let's just say I've faced a lot of put downs in social, educational, medical, and familial situations because I am or I have at points in the past been intelligent and expressed my opinion--and when the people who are closest to you do it, that's what sticks). For example, I loved my grandmother very much, but she had a boy fetish--everything ground to a halt when one of my male siblings or cousins came into the room (and she had 6 male grandchildren and 13 female grandchildren). What they said mattered. What I said didn't matter so much. What they accomplished mattered. What I accomplished didn't matter--what mattered was getting married.

Ridiculing women for trying to express their opinions is a time-honored way of 'restoring' social roles. Telling women to just shut up has a long, long history in western culture--the Renaissance versions of this are public diatribes about women who spoke publicly, and cultural conceits or images of the obnoxious chatty woman--the most accessible example of this for most people is Chaucer's iconic Wife of Bath. Everyone on that pilgrimage just wants her to shut up. That's what makes it 'funny.'

Several things stick in my mind. One, that repeated experience of trying to have a conversation/discussion when there are men involved. Ever so much more than a psychological intimidation (some men will just cite stuff endlessly rather than formulate their own opinions, and somehow that just counts), this becomes a type of physical oppression: the mature male voice is generally lower and deeper than the mature female voice and, therefore, louder and more resonant. I can remember in college trying to get into a discussion and having to leap over both the interruption hurdle (I was loathe to interrupt, but even if I did, the guy would just interrupt me and keep going), but trying to make myself HEARD. I couldn't do it. My voice is softer and higher than a man's. I couldn't get into a conversation without raising the pitch of my voice, which means that I, yes, shrieked and was 'shrill.' And we all know what 'shrill' means. To be shrill is to be instantly dismissed.

But it's more than college (this moment on the gender timeline, 1982-86, brought to you, in part, by the good people of Emma Willard House and Old Chapel)--it's dealing with Robert's medical care and his school. Running into situations in which I tell my husband, you have to call, because they're not going to listen to the mommy, but they'll listen to daddy. Sometimes, this is strategic on my part: an offensive strike to get what Robert needs or to blow by an obstacle. Sometimes it's because I've done it and called and argued and nobody is listening to me, but I know if daddy indicates that he's pissed off, that's suddenly going to matter. Because it doesn't so much f*cking matter if mommy is pissed off. What am I going to do? Try to kick them in the shins?

I have to get to work this morning, but for those of you still with this, those of you who deal with disabled kids, let me just leave you here. It's September 1998 and I'm discussing the history of Robert's of physical, dramatic breakdown that has now left him profoundly incapacitated with one of the early neurologists, a man. Let me point out to you that this man knows I have a doctorate (in the humanities, but a doctorate none the less), he knows I am intelligent, and he knows that I am the primary witness to all of the puzzling motor symptoms that have presented in my son since the end of July. I am not hysterical and I discuss all of this without crying or breaking down, although I certainly emit concern and worry. In his write-up of our consultation, which he sends to the other doctors who care for Robert, this is what he says under 'impression' after describing what he observes about Robert, he who sees Robert for 30 minutes at a time and only occasionally: "It seems that the description of his [Robert's] course of weakness [and, STET] changes over time, people are constantly asking the mother about this, trying to get clues for the diagnosis, this naturally, may distort her perception, as she is desperate to find such a clue herself." I may as well have shrieked.

Change what you see

2011-02-15T16:59:00.000-05:00

The eye is a lens. It frames what it sees, setting some images in the center and some at the periphery. Or some outside the frame's edges altogether.

Back in October, I took the kids to Target after daycare where we loaded up on Halloween candy. Roger had been working late most nights because of the impending election. On our way south on Rockville Pike, we stopped at McDonald's. Darkness had fallen, and I was happy to find a handicapped spot free--despite the fact that the ramp on our van descends from the rear of the vehicle, I like to situate Robert in his wheelchair in the access alley after unloading him while I close up the van, or before loading him. Simply put: it's safer than leaving his wheelchair behind a parked car within striking distance of a driver coming through the parking lot.

We maneuvered through the crowd of people at the counter to place our orders--only Edith and I eat food by mouth, a grammatical construction I don't use often with respect to the two of us, although it is true. At McDonald's, I always order the tweenie version of a Happy Meal, a Big Kids' Meal, I think, so that Robert may have the toy. It seems the least I can do. A contract of sorts: you will sit in a restaurant only to be disengaged from the activity in which all others are engaged, and I will make sure you have some sort of reward.

From the corner of my eye, as I wheel Robert to one of those perma-tables with attached seats, but one with a gap for a wheelchair, one hand on the wheelchair, one hand balancing the tray, my amygdala begins sending me some sort of signal, a flash alert, some neurons firing a warning. I'm with my kids, so my amygdala is usually on alert. At the corner of my eye, the next table over, someone, a male someone, is chewing with his mouth open. Something about the face and body are, well, "off." I won't look directly, so I'm not sure. A consideration of safety passes through my conscious mind, but the gentleman remains seated, and we all sit down. This series of neural events happens within a few seconds.

Settled, I look up and directly at the man-who-may-not-be-safe. He's not dangerous, he's disabled. He has a bleary, weepy eye with a malformed lid--perhaps my brain read this as the slitted eye of malevolence--and he is wearing a bib for all of the obvious reasons. Not to be outdone by my protective instincts, my maternal instincts then kick in: is it safe for him to be here alone? who is taking care of him? And then his caregiver appears, and within a minute or two, she is speaking to us because like people at a cocktail party discovering they went to the same college, we have things in common. His name is Peter, and they've been riding at a special program, and they always go to McDonald's afterwards.

All I can think about, behind the curtain of our chatter, is where Peter's mother is. Peter is an adult; while it's difficult to say, it would seem he was in his thirties. Logical for him to be with another caregiver. I wondered if she were dead, and I worried she didn't care about him anymore. All of these thoughts were absurd. All of these thoughts anticipating a time I would not be responsible for Robert, as though that were possible. Would other people think I didn't care?

We left all at once, with Edith holding the door for Peter in his walker and Robert in his wheelchair, in the dusty gray light of a roadside McDonald's. The ramp van greatly speeded our exit from the parking lot, and Peter's caregiver expressed her wistful envy, much as I might have a year ago, as she supported Peter's weight and slid him onto the front seat, which is not as easy as it is to write that sentence. The walker folded, but by that time, we were waving our good-byes and pulling out into the night before Halloween. The night before everyone gets to wear a disguise. Robert's would be Darth Vader, which amused him something fierce, as we've come to tell him that his 'scary breathing sounds' (which he affects for various communicative acts of need, defiance, annoyance, and so on) are much like DV.

All of this prelude to my IEP meeting report. The past is prologue, or something like that, although I think that really refers to the distant and not the recent past. The eye is a lens. It frames what it sees. And in Peter, I saw a vision of what my son's future might be--if he were to live, to outlive me. In a world where he might need to ride the bus, need to count change.

IEP meetings across the country share the same visual format: 12 to 15 people sitting, or, really, wedged around a conference table, one of those institutional ones with the plastic wood-grained top, in a school conference room decorated with framed images that, by necessity, imitate art. A hundred thousand parental amygdalas on high alert.

I distinguished myself at the very beginning of the conversation by bearing down on one of Robert's teachers, who was parsing her own observations of Robert's communication. An inability to answer questions, an inability to be consistent, no way to be sure how he was absorbing the material. So she tried to figure out how he would answer a factual question about his own environment (she was the science teacher, after all)--she asked him if the elevator were still broken after he had just come up in it, and he answered, yes. So I pointed out that you had to be careful with his answers because, lately, he'd exhibited a reflex that drew up the 'yes' hand before the 'no' hand rose. And he likes to joke about obvious things--he thinks it's funny to tell you the opposite of what you expect. I was not especially nice about this, my opening volley should things turn ugly.

But we had come to compromise. Roger and I agreed that school is becoming hard on Robert both emotionally and physically. He is shutting down in his classes--in part, I am sure because he cannot express much more than yes or no to questions formulated by others. Only so far you can go when your intellect is so contained.

We agreed to switch him from diploma-bound to certificate. We offered this ourselves. And the talk spiraled round the table as it became clear that, behind the fence of the County's accountability system, the teachers and therapists wanted to offer him something he could do, something he could take pride in, to be able to step back away from the commodifications of No Child Left Behind and its value exchange, its ranking systems.

We spoke of how the new diagnosis gives us a vocabulary to put Robert's behaviors and movement problems in context, to explain what we could not explain before. How the very definition of his disorder is a lack of consistency with movement, with thinking, with all of that. And here is a child whose definition is inconsistency who must be placed within the bureaucratic bounds of consistency.

There is no way for me to describe this; there is only saying it: empathy permeated the room. People were seated at the table who had been through the difficult meetings at Bethesda Elementary, people who knew.

I felt a sense of defeat in the service of good when I stood up at the end of the meeting. Lately, I'm acutely aware of my agency where Robert is concerned. I speak for the child who cannot speak for himself. Being the parent, this is my role, yet my responses "for" him are complicated by the fact of his disability, the fact that the choice I make for him may take into account benefit to me.

My life is a house of cards: part-time work to secure top-flight health insurance, writing, Robert's care, Edith's care, all of the ordinary things in addition. Robert's care involves not only school, but managing the complex and ever-shifting medical care he receives, including his medications, the insurance company, and the plethora of doctors and nurses, and his home care, including being responsive to the case manager who monitors our budget, and our home aide. And there's also the inclusive daycare center. Everyone has questions, needs, all of that directed to me. At the moment, Robert receives no private physical therapy because we simply can't fit it in. Our favorite physical therapist used to remind me that, with Robert's level of involvement, I needed to pick focal points. You can't do everything, she would say.

Education, at this time, cannot be a focal point, sad as I am to say that. We cannot keep up with the homework demands, as complex as they are becoming. Robert's new diagnosis requires my focus on his medical care, his equipment needs, his burning need for physical therapy. And his happiness. Without that, he's lost. And it's to that factor, happiness, that I feel most responsible.

Robert will remain at Westland. He may even go to the cluster's high school, B-CC. As JH said, a significantly impacted child is there right now, so it won't be anything new for them.

After the meeting, I spoke in private to JH, who started working with us three years ago, and told her how much we had been through--how we had believed in him, saw he was at grade level in second grade, how we now knew his disease, his organic condition, was progressing and, like a stick tapped on the surface of a pond, blurring, replicating, and fragmenting images in such a way that the original image could barely be distinguished. Or, rather, I say that last part now as a sort of shorthand for the conversation. She promised me an educational contract, that teachers would be held responsible for him learning somethings--and in the midst of all my explaining of our fear of giving up what we had just given up, her eyes teared up. And so, we were all human that day.

After that, one of Robert's augmentative tech specialists spoke to us. For the last several years, she's been on the other side of the table, as she put it, coping with her own child's IEP. Why are these meetings so negative? she said was her first response as a parent. In the mid-afternoon winter sun, which might as well be the late-afternoon sun, she told us we had been models for her own advocacy. That anything might be possible, if we could get a $10,000 device into the system in a week for our son's use. That everything available must be brought to bear. That we had, essentially, shown her the possible.

While she spoke, I thought about the epigraph to Louise Gluck's book, Vita Nova:

The master said You must write what you see.

But what I see does not move me.

The master answered Change what you see.

But I didn't mention that because I didn't know if it would make sense to her.

I wish I could explain to all of you why I let this go. Let Robert's education go. It wasn't acceptance. It was adaptation, an act of changing what I saw or could see.

As Gluck observes, sometimes we have agency to enact change. Most times, I think, we recognize it after the fact, after its work is done and our choices have been erased. But on occasion, change steps forward that it might be known. Offers a handshake, if not a choice.

Which is why I thought of my brother's coming-out on the drive back from the school. My brother who is also named Peter. We had been at church, Peter had become emotional singing and had left. I followed him out to the parking lot behind the church. A light snow was falling. No one was disturbing it but us. The kind of snow where large flakes spiral down, just catching on others with the faintest grasp that makes an odd and fragile geometry rising upward from the ground.

He told me he was gay. It was, I think 1987 or 1988, just as the tidal wave of AIDS was crashing down, before Tom Hanks' "Philadelphia," before Ellen, before gay marriage, before anyone I knew had much thought about any of this. I'd been living in big cities for two years, had seen my first drag queen, knew several people of varying degrees of acquaintance who were openly gay. At one level, I was non-plussed.

My only thought was that this moment marked how everything would not be the same. How the four of us siblings would not all grow up to have children of our own. How this would be different. How things would be different going forward. Maybe it was a failure of the imagination, maybe I was a product of that particular moment of time. At any rate, I turned to my brother and told him, in a way I can't quite recall, that I accepted who he was.

And that's how this was, leaving the school. A recognition that, now, everything would "suffer" change. Or maybe not. Maybe one more time I can change what I see and it will be alright.

SOTU IEP

2011-01-26T00:19:00.000-05:00

Like most people in the WDC area, tonight, I watched the State of the Union address (hey, it's a company town--and what else is there to do on a Tuesday night?). I've not much to say about the policies proposed--this was a middle-of-the-road, play to the center kind of drama this evening, and, as such, had little in the way of fireworks. Education had a prominent role, as a Facebook friend noted. Higher standards and all that. Race to the Top. Achieving higher graduation rates and using community colleges to get there.

That snagged my wavering attention like a shirt on a hanging bow as my mind wandered downstream. And at the end of the speech, the following hung me up by my collar:

We may have differences in policy, but we all believe in the rights enshrined in our Constitution. We may have different opinions, but we believe in the same promise that says this is a place where you can make it if you try. We may have different backgrounds, but we believe in the same dream that says this is a country where anything's possible. No matter who you are. No matter where you come from.

That dream is why I can stand here before you tonight. That dream is why a working class kid from Scranton can stand behind me. That dream is why someone who began by sweeping the floors of his father's Cincinnati bar can preside as Speaker of the House in the greatest nation on Earth.

Yes, this made me slump less to the right on the couch, and even prop up my head with my hand. Ordinarily, these sorts of John Phillip Souza lyrics make my heart beat a little faster. I'm a sucker for the Fourth of July flag-waving kinds of self-reliance talk, the rise of the individual and all that. Obviously, I am weak. I know this. Do not remind me. Most of my life I've believed in the virtue of hard work, and it's what keeps me going with writing (which is largely a young person's game), wedging it into this small slot here, that tiny tabletop there, wearing myself out some weeks making only baby steps toward various goals--poems, essays, a book. Because I just figure that baby steps will add up to something. If I just work hard enough. I might as well be John Boehner sweeping the floor of a Cincinnati bar.

Which is all to say, yeah, yeah, yeah, I get it. But the problem is I can see the promise of those words for just about everyone except the disabled. (No, I'll not be whining about writing this evening.) Are those words true for any of the disabled children I've known or met or seen occasionally in public with their families? "You can make it if you try." "This is a country where anything's possible. No matter who you are."

I've written this year responses to comment streams in the New York Times in which most of my fellow citizens felt it a waste of taxpayer dollars to even let disabled kids 'try,' let alone 'make it.' This is not a country where anything's possible if you are excluded from educational opportunity because no one can figure out how to tap into your intelligence or develop a method of communication that allows you egress from a body that traps you. And, by the way, where those same people blame you for not being able to work with the systems that are in place, no matter how inadequate.

Standards are certainly high here in Bethesda. Looking over my daughter's middle school course selection guide, a guide with a photo of the bland, brick facade of Westland Middle School on it, a guide I never glanced at when dealing with Robert's course 'choices', which would largely be dictated to me anyway, I was conflicted by the opportunities offered my daughter, which were simply unavailable to my son. I struggle with the way my children are forced into a capitalist framework, in which they have differential 'value.'

I struggle with my own complaints. We dealt with exceptional bias in elementary school, especially in the early years: the physical therapist who decided she was also qualified as a neurologist. The speech therapist who had trouble learning how to use an email system and who was put in charge of helping my son use a highly sophisticated computer that allowed him to access it with his eyes. The special ed official from the county who kept repeating 'low tech,' 'low tech,' like a myna bird during a series of contentious IEP meetings, and who insisted that a white board and some colored markers were good enough for my son. The first grade teacher who told me that Robert's ability to raise one hand for yes and one for no might be all the communicative ability he needed in life.

Yes. The first grade teacher who also became my daughter's first grade teacher, and dribbled her secret contempt for my son onto my daughter and decided her shyness in first grade was an indicator of lesser intelligence. Because my son was obviously not an intelligent person. We were locking horns with the myna bird above while my daughter's education advances were slowed, and didn't discover what had been done until second grade. When I walked into a parent-teacher conference to discover my daughter was being told baby books were her speed. Believe me, that changed. Quickly.

Robert's unknown illness was, to them, just another kid with MR whose parents didn't want to admit that. That fact that all these teachers had seen 'so many times' before--'in their experience.' And if Robert was congenitally intellectually defective, than the rest of us must be as well.

As a result, I am unable to trust any of my daughter's teachers. I look over her graded papers, particularly the reading and literature papers with an eagle eye. I write to them about points and grades I deem unfair. And I don't back down.

I struggle with my own complaints. What could I have expected? My son had an unknown illness. I did what I could to advocate for him, to press his strong suits, to get others to reconsider their own 'certainties' in the light of the pervasive uncertainty in which I am forced to live. What indeed? My kid is locked in his own body, with a muscular variability and decline that do not establish the fixed access points around which augmentative tech is built. The repetitive trials to 'prove' he could master the single communication device that would be allowed in the classroom. When he was 'ready'. When he had worked on it alone in a room with an adult (because childhood communication has nothing to do with peer support, right?) for a long enough and perfect enough period of time to satisfy that adult.

Robert was not well served in elementary school, although his last two years there were OK. The combination of his unknown illness, basic bias toward non-verbal children (especially those with severe motor impairments), and augmentative tech that is still limited in scope, all of this was toxic. We've been called to an IEP meeting at Westland Middle School on February 10 because Robert is not passing any of his classes.

This does not surprise me. How far can you go in life by being able to answer only yes or no questions? Math problems, for example, must be broken down into micro components. Answers to analytical questions lack substance. There is no way for my son to meet the County's vaunted, hyped-up 'standards'. And the County is as complicit as any other entity in this problem.

Don't look at me. I have no solutions. My wish is that he remain in a regular classroom, absorbing what he can. Because the development of the mind, regardless of the limitations of the inputs, the outputs, and the gray matter that's there, is what he has to gain from life right now. As well as interacting with a spectrum of his typically and not-so-typically developing peers.

The alternative is, well, for lack of a better word, dumb. FLS, or functional life skills. This program is a relic of the way the County used to do business in special ed: kids with clear academic potential in kindergarten went to the learning centers, children with clear MR went to FLS, and children with severe muscular disabilities (which could only mean their cognitive abilities were equivalent, according to the 19th century neurology standards used by the school system) went to a horrifying, isolating institution-cum-school called Stephen Knolls. A place I was asked to visit. I walked in the front door, heard and saw what I could from the lobby, and walked out, vowing that my son would go there over my dead body.

FLS is a program in which the focus is on these three things, as far as I can see: counting change, learning to ride the bus, and learning to wash your face. Year after endless year. None of which Robert can accomplish physically. I've been told he could work on communication--but that would be in isolation. FLS is for kids with reasonably good motor skills who have cognitive impairments. It's a vestige of what the County used to be before Inclusion. It does not accommodate a child as complex as Robert. He's best served individually in a regular school.

Robert is not passing his classes because they switched the grading standard. We noticed this around the same time we were focused on the Cleveland Clinic visit and the prospect of diagnosis. We asked why the switch, and we were told that they wanted to get more realistic grades, or something like that--I worried about this at the time, but, frankly, I had bigger things to worry about. So this leads me to believe that we are going to get the big heave-ho at this meeting. All I can say, dear reader, is I will stand up to these bullies, even though I am quite tired of standing.

If that happens, I tell you, I don't know how I'm going to be able to deal with the disconnect between my son and my daughter at this same middle school. How they can support one child, but not the other. How I'll be able to trust any of my daughter's teachers. How I can stomach this crap about achievement without losing my lunch. And my own guilt at how complicit I was with all of this garbage all the way through my own education--top of the class and all of that.

The sad thing is that I really believe all that bunk from the President's speech: "We may have different backgrounds, but we believe in the same dream that says this is a country where anything's possible. No matter who you are. No matter where you come from." But I guess it depends who the "who" is.

What I'd like to be able to do at this IEP meeting is to stand up and say, "That dream is why Robert can stand here before you tonight." Or this afternoon.

The end of all our exploring

2011-01-04T00:17:00.000-05:00

From indoors, a snowstorm only appears against the dark surfaces of objects--trees, buildings, automobiles, a stray mailbox or two--while against its source, the sky, snow is, most times, invisible. From inside the house, this atmospheric disturbance is reflected against what surrounds us, as though its source were not understandable, were not known. But this is typical of many of life's problems. We deal with what we can see and what we can't remains a mystery.

Obviously, or maybe not so much, I was in Vermont for a while. Before I left for the north country, a few lines of poetry ran through my conscious mind:

We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.

Eliot, I thought. Yes. Eliot. I chose not to re-read any of Four Quartets; I just glanced at the end, because I figured that would be about right.

Quite a long time ago, I had a boyfriend of one sort or another who liked to speak of his 'choice' to do one thing or another within personal relationships. Needless to say, this puzzled me. At the time, I didn't know why. Probably because I was young and probably because I came of age in an era when men were still nominally in charge of the progress of relationships, so I found it awkward to challenge him on that account. When I encountered him again when we were both grown-up people, I found, after a time, that, despite voicing his respect for women regularly, he retained that ability to pull rank by invoking this right--it was my choice, he would say.

Presented with this sort of maneuver, my tendency is to go blank. Opaque. Call me the snow against the sky, whited out, my rage accumulating ineffectively, softly, but deeply. My rage only partially visible, reflected against the dark outline of his person. And so he was puzzled by me, the source of my anger invisible to him. He could see only its manifestation, which appeared unjust.

While we were in Vermont, I ran my husband's iPhone through the washer and the dryer. I chose not to check his pockets. We couldn't be angry with each other; we were too much in shock. Not only the expense, an avenue of our communication was suddenly shut off. Sometimes we text each other at restaurants while sitting across from one another over the white expanse of tablecloth.

At first, the damaged iPhone screen was just a mass of clouds as the water billowed under its glass sheath. When the main button was depressed, something like straight line lightening flickered in narrow bands across the small white rectangle. For a bit, the flickers seemed to bring the device back toward some electronic version of life--the time and the battery indicator appeared ghostly across the top, the app icons in color negative faintly. Of course, it died just 48 hours later. But the phone still rang, with no way to answer it.

Hobbling about with only one phone, we managed to have a night out. We saw the remake of True Grit. At the beginning, the heroine, Mattie Ross, says, You must pay for everything in this world one way and another. There is nothing free with the exception of God's grace. In his NYTimes column, Stanley Fish reminds the reader that, in the book, Mattie adds, You cannot earn that or deserve it. I read the column in advance of the film, and what resonated with me was this:

What this means is that there are two registers of existence: the worldly one in which rewards and punishment are meted out on the basis of what people visibly do; and another one, inaccessible to mortal vision, in which damnation and/or salvation are distributed, as far as we can see, randomly and even capriciously.

Needless to say, given the circumstances of my life, by the end of the movie I was in tears. The penultimate scene has Mattie, in this remake, a highly capable 14-year-old, snake-bitten and carried out of the wilderness by Cogburn, who rides her horse into the ground in an attempt to save her life. The scene is long, and they ride against a night sky black with stars, on and on. Finally, the horse slows and stops, wanders sideways for a few paces and collapses. Nothing can be seen on the horizon, round in every direction. Then he picks her up and carries her. For about ten miles to the nearest outpost.

Caught up in the film's reality, I thought, this is what I do. I go on because there is no other choice. And when the horse collapses under me, I carry him. Sometimes people ask me how I do it, and usually I say, you find you do what you have to do. I'm not melodramatic about it, but I could be. I could say, go see True Grit. I could describe that scene the way I experienced it emotionally. No one would, I think, believe me. Who cries at the end of a big-budget motion picture?

Robert is very sick. But he only seems that way when the storm is leaving its traces against his physical body. The source has been invisible to us for a long time. The source is mitochondrial disease. The manifestation of this is Leigh's syndrome. Mitochondrial disease is where we started, years ago, with all of those efforts at diagnosis, and it was, the most terrible thing we could imagine. But the tests showed nothing then. Because I could not see the source of the storm, it never occurred to me that Robert could predecease me. So I arrive where I started and know the place for the first time. Or, as Longinus wrote, first we see through a glass darkly, then face to face.

I first came face to face with this idea of mortality in June, driving back from the Cleveland Clinic while a Red Sox game played on the radio and Adrian Beltre had just hit a homerun. And the green hills of Pennsylvania were all around us and I sat back in my seat, much as I sat down in a chair when I realized I was pregnant with Robert and the responsibility settled on my shoulders like a cloak. And this time, I realized that more, again, was being asked of me. I felt blank, opaque. We drove on.

There are two registers of existence: what we imagine to be our free will, our choice, and what we must do because we have no choice.

It's awfully easy to say, but I'll say it. The past is past and the present is now and the future will be whatever it is. The future simply exists, outside the scope of each of our plans. We ride these plans recklessly or with care, we ride them until they're played out. We ride thinking we know where we're headed though we do not, and the moment happens when they collapse beneath us and we will be judged by our ability to walk on through the dark that telescopes behind and in front of us. What carries us to that point is not what we think--not our determination or our will, but the cresting energy of the world beneath us, holding us upright and moving forward. When we're forced to dismount, we move under our own power at last.

Who would count eternity in days?

2010-11-24T17:36:00.000-05:00

A strip of concrete walkway connects the slender patio at the back of our house with the driveway. Just wide enough for Robert's wheelchair, one of the sections is inscribed along its long edge next the grass with our names, 'Roger Jeneva Robert Edith 2002'. In early November that year, just before the concrete set, I used a stick to write us permanently into our surroundings. Our back yard was very linear, quadrated, if that's a word, divided into sections: the garage, the back patio, the planting bed left by the last owner, and her picnic area under the grape arbor as well, sections of lawn in between them all. Orderly and of a certain composition, both what we found and what we made, and now signed with our names as though a hidden message at the hem of a garment.

This act of inscribing would appear, on the surface, to be public. Like graffiti, say: we were here. But I saw it as more of a private act. A claim, yes, but a modest, side-long claim, a marginal claim at the edge of attention. As I etched the letters that form our names, I wondered what the future inhabitants of this house would think. Would they immediately erase us with a concrete patch? Would they find it unique and charming and let us live on at the margin of their existence?

No matter how long we live here, someone else will eventually inhabit these spaces, just as furniture has a life beyond its maker and the first who use it. Our claims to the contrary, which is what I meant when I said it was a private claim. These letters that form our names mean something only so long as this is our stake. These our noticings, these our names.

Not recently, but not so long ago, I wondered if we might lose the house or the house, us. We made the house. It was our plan, our ideas channeled through an architect into the blue and white lines that define spaces and outline a life. We planned to be here for a long time, for ever, if not forever. My husband said we would be buried in the back yard. Zoning, apparently, be damned.

The house was designed with Robert's disabilities in mind: no doors downstairs, handles instead of knobs upstairs, a special tub, an elevator, wide doorways and space for turning and maneuvering the chair. A giant powder room downstairs in which, until recently, we did his personal care. And more than that, I had selected the light fixtures, the tiles, the paint color for the walls, the look of the baseboard and the window trim, the style of the windows themselves. Rather than adapt ourselves to the space, we had adapted the space to us.

The original structure gutted, what remained of the former owners--two members of a family who had lived there sequentially from the time the house was built in 1938--what remained were structures in the backyard we could not, at first, afford to change: concrete planting beds, the now second small patio underneath the aging (and ailing) grape arbor that extended from the aging and narrow garage.

And, so, perhaps I meant to leave a message for any future owners that the house, in fact, was ours and always would be.

Or perhaps it was a form of wishful thinking. Our names, there, all in a row, oldest to youngest, a date for good measure to put us into some irrefutable context. But at the time, Robert's health was uncertain and remained so for quite some time. The first Thanksgiving in this house was postponed because Robert was in the hospital with pneumonia.

What we found and what we made. A huge piece of brain coral, left by the previous owner, sits in the back, at the edge of our patio. Daffodils and narcissus bloom each year from bulbs I never touched. As Robert and Edith have grown, and Robert's health has stabilized, they finally parted ways this year--Edith into the pink room we had always intended for her, Robert remaining in the green room. For a time, Edith was worried about making the switch--what if Robert woke in the night and she heard him while we didn't. But, in the end, all has gone according to plan: each child in the intended space.

When I read about childhood disability from other perspectives, some people say that God has a plan for all of us. I don't know if I believe that. When I think of God, I see him watching us sort of the way Milton describes it in Paradise Lost: He watches from a great distance, as if, perhaps, on a hill, knowing our fate, but unable to change it or affect it. Because we have free will--thus, He is doomed to watch us live out our mistakes, our tragedies, our joys, and our accomplishments. This is painful for God, but He endures. God's helpless pain is the way Milton resolves the idealogical conflict between free will and predestination.

Orderly and of a certain composition is the world in which Milton lived. The four seasons correlate to the four humors of the body and to the four points of the compass and the four ages of man. The number of our old house, just up the street, was 4405. Individually, those digits add first to 13, unlucky, but then to 4, the number of stability--in Renaissance numerology, anyway. While I lived there, I was always conflicted about this. The new house number is 4415, which adds to 14 and then to 5. I admit, I don't know that 14 has any special meaning, but 5 does; it's the number of perfect harmony of man and woman.

I can't say that I've been in perfect harmony with my husband under this roof, on this lot, since we moved in. In fact, I might say the challenges have often overwhelmed us. But our names are there on the sidewalk, all in a row, ordered, composed, as though we felt that ourselves. And the house was designed with balance and harmony in mind--the shapes a bright container can contain.

So, after years of disorder, things are going according to a plan: ours, God's, the architect's. Which one? I'm not sure I know. But who would count eternity in days? ... (I measure time by how a body sways).

Children, writing, ethics--oh, yes, and disability

2010-11-13T16:28:00.001-05:00

I've been off-duty as a blogger or blogger/essayist, or whatever it is that I do with this space for several weeks now, screwing up my resolution to write at least four times a month. I've been on administrative leave from work, due to a burst water pipe in our building--and working as much as possible on what I hope might one day be a book. About Robert.

So when an email landed in my inbox from an online writing site for women, an email with a link to what purported to be 'rules' for writing about my/our children, well, I didn't like it. Granted, this writer entitled the piece, 'my rules,' but these were developed in conversation with other women writers (a committee of sorts) and now promoted by SheWrites as, at the very least, interesting and provocative. Not a new topic, the ethics of writing about children have been discussed by Emily Bazelon on Slate, and by Ruth Marcus in her column at the Washington Post. And on a fair number of blogs as well.

What frustrates me about this? Perhaps I can enumerate.

1. I am deeply uncomfortable with the idea that a husband should have veto power over what a woman writes. If you read the items on the list carefully, the suggestion lingers that a mother's judgment is simply not that good. The husband's is better, or, at least less conflicted than the wife's. As though male parents are more clear-headed than female parents. As though we were living in a county where a male head of household has legal authority to make the rules.

2. Which brings me to a second point: is this an ethics issue at all, or just an issue of taste and aesthetics? Writers are conduits for expressing aspects of the human condition (yes, even avant garde writers, who push back against what the definition of 'human condition' is), thus, we write about other people. Do you need to obtain the permission of a stranger to write out your observations of them in the public sphere? What about the private sphere of the home? The homes of other people? Is it at all ethical to use an observation from life in fiction by camouflaging its details? What if you're a war correspondent or writing a book about war and you describe someone's death--is that OK to do? As long as you do it anonymously?

Asking whether something is ethical is asking whether something is moral. If writing is a mimetic activity, and the mimesis involves replicating immoral behavior, attitudes, or actions, is the writing itself moral or ethical? That would depend, I suppose, on its intent. But seeing as how the aesthetics of the day have abandoned the idea that writing serve as a conduit only for our better selves, how do ethics apply at all to the activity of writing? Contemporary writing of all stripes benefits from the idea that all modes of human behavior are worth exploring, and not just to teach moral lessons, but to contemplate the range of human experience.

In the case of women writing about their children, the issue breaks down on what we might call the public vs. private divide. The home itself is often considered to be private, yet it is also the locus of a rich vein of human experience: mothering, parenting. The considerations of children. Yet there are plenty of other venues that might be considered to be private and these have been written about without a call to ethics and morals: a lover's bedroom, the intimacy of the military foxhole and the private revelations of men about to die, conversations between friends, the confidences shared in various high political offices. All this has been written about without great hue and cry about morals. With the exception of a couple of recent political memoirs, to which objections might be described as mainly political. What are historians thinking when they publish the private correspondence of the dead? Can the dead now object?

Which is part of the issue with women writing about their children--that kids may object. That it may be embarrassing to them later, especially in this era of the world wide web. That is true. But is that a matter of ethics or a matter of good taste and good judgment on the part of the writer? I think it's the latter. Bad writing is marked by failings of judgment, among other things. The question to ask is, what is the value of writing about this incident or this strata of human experience? Well, the ongoing battle of the rights of women might be one reason to illuminate and describe and discuss the situation of women at home with small children. Historians have long turned away from the exploration of big events and great men--now, many explore the culture and attitudes of particular times. Writing by women about home life enriches those projects. Intimate writing. Honest writing.

To curtain off an entire category of human experience as entirely private and smear those who write about it with the label 'unethical' is disturbing. Or to suggest that certain rules should apply only to these writers (mothers).

3. Who are we trying to regulate and control with these sorts of rules? And why are women doing it to themselves? Doesn't this discussion simply diminish the ability of writers to do what they do, write, and write both well and poorly, about aspects of the human condition, giving editors and publishers with sexist attitudes yet another reason to dismiss women writers?

Yes, a lot of silly and embarrassing things are probably written by mothers writing about their children, just as silly things are written about other areas. What is the size of the audience for writing about children in this era of blogs? It depends on who writes it--in some cases, it's an audience of 25. But is it unethical to say silly or embarrassing things about your children? That strikes me as a personal issue, not a public one, that is, not a matter of ethics. And, frankly, people say silly and embarrassing things on the Web all the time--there's a small army of male bloggers writing about politics who embarrass themselves daily, often implicating other people in their foolishness. But no one's crying, 'unethical,' at them. We simply say they lack judgment.

Ethics and writing is a moving target, anyway. Not too many years ago, I took a writing workshop at a nationally ranked creative writing program. During one class, we discussed the ethics of Wallace Stevens, who often wrote patronizing and somewhat disparaging things about women and African Americans. After some conversation, the class decided that Stevens' objectification of certain groups or classes of persons was unethical. Because that is certainly what he did: he turned members of both groups into fetish objects for his amusement and the furtherance of his art. We were undecided about how our realization of this attitude in Stevens affected our ability to enjoy the rest of his work. Then, we turned to student poems. One of the first was written by a clearly talented young woman--it was about her experiences encountering people with disabilities in her life. In her poem, the emphasis was on the descriptive freakishness of the disability of each individual. Yes, she objectified them. When others began to praise her keen descriptive eye, I pointed out with some emotion the obvious objectification in the poem, and how hurtful that was. I tied that to our preceding discussion of Stevens. The class, to a person, defended the right of the poet to objectify people with disabilities. Oh, silly me, I forgot that people with disabilities are not actually human. In an attempt to clear the air with said young poet, I emailed more carefully worded analysis of what I'd been trying to say. She responded by telling me that she'd spoken to her mother, a speech therapist in the Maryland public schools, who had told her that "people like me" just couldn't accept the fact that their children were different, and held out hope that society might accept them as equals.

Well. Does that prove my point or diminish it? A few years later, I read a poem in VQR that objectified, no, actually dehumanized through description a boy with apparently severe disabilities, comparing him to a plant. I wrote and re-wrote a letter to the editor that, ultimately, I did not send. Why not? These are the lenses of other people's experiences and they see the world through their own eyes. I have a right to object, to question the quality of the art object, but can I deny them their attempt to come to terms with their experiences? Was what either of these poets did unethical? I think it was in poor taste. I think it lacked judgment for the feelings of other people. But were either of these people trying, deliberately, to cause suffering to people with disabilities? To diminish or endanger their lives? Probably not--they just struck that common cultural chord that causes us to shudder at people who are different. So, in that respect, the flaw in their work was that it said absolutely nothing new about the human condition--they had just enjoyed transgressing a line typically drawn over which we don't stare at people who are different. They meant no harm--they were just gawking. They were, simply, rude.

My real and earnest response to this has to be to write to be true to my experiences: a world in which my child is human after all. And whether I do it through a blog, a book, an essay, no one should tell me that I'm unethical for writing about the private sphere of the home or about my children. Or that it isn't serious subject matter. Mothers have a lot to add to the human dialogue and no one should censor us.

iRobert

2010-10-22T13:24:00.000-05:00

I discovered recently that my work colleagues have a nickname for me: iJeneva. And, yes, about four or five years ago I became a Mac convert. And, sometimes, I proselytize.

Here's what I've been saying about the iPad (and others, too, I'm sure): this device has the potential to radically reconfigure the market for augmentative communication devices. For those of you who live outside Disability Land, these devices range from mechanical push-button recording devices to increasingly computerized devices with touch screens. Each of these devices is engineered for a range of physical and cognitive disabilities. The Big Mac button costs over $100 now, and enables the user to 'speak' a single, brief recorded message at a time by lightly depressing a large, brightly colored button. Want to say something else? Record over it. The CheapTalk series range from, I think, about $150-300, and allow users to choose among 4-8 smaller buttons on which PCS (picture communication symbols) can be affixed. The more expensive ones have 'levels' that allow multiple recordings for each button. The SuperTalker has black plastic grid layovers for a touch-audio surface, and, using the same multiple recording levels technology, allows storage of different communications arrays. Price? About $500.

The catch with all of these? You use a computer software program called BoardMaker (price: $350) on a regular computer to design paper layouts of PCS tiles, print them, cut them down to size, and then switch them in and out of these devices when you want your child to be able to say something. Of course, if you're out and about and the circumstances demand a different picture array--oh, well. All of these interventions are, of course, permutations of the tape recorder. Useful? Yes. Flexible? Well, sort of, maybe, no.

The Dynavox is the crown prince of augmentative tech devices: a computerized, programmable touchscreen device that uses the Mayer-Johnson/BoardMaker symbol library, which is integrated into the software. Cost? About $8,000 to $10,000. Or 8 to 10 times the cost of actually buying a Mac laptop, which can, ahem, run a gazillion programs, not just one set of software. But take note, iPhone and iPad devotees, touchscreen technology was first broadly used and implemented in disability software and devices.

Not every child with disabilities can use every device. In fact, Robert has had difficulty using any of these (and there are more, believe me, more). Forgive me, but I'm in self-promotional overdrive--I recently published a lyric essay about the intersections of speech technology, language, and, well, parental love, which can be read here.

What is it like to be a parent of a child with special needs, a non-verbal child, and want somehow, somehow, to create the interface that will allow your child to speak, even if it's only to choose among a pre-fab set of things he or she might want to say? A long trial by fire. No, a quest for the magic ring. No, it's like walking down 5th Avenue in New York, window shopping, all the beautiful things you cannot have arrayed behind glass. And you'd like to go inside and try something on, but the impossibly thin, dour-faced clerks with the odd haircuts say they don't let you try things on for free.

The school system does own many of these devices, and your child can experiment with them, but the special ed teachers are the gatekeepers. And the school still owns the devices. Insurance stopped paying for these a long time ago--they're not "medically necessary," as, apparently, an inability to speak is not a medical condition that warrants attention.

And, anyway, at home, I've learned, I can wear myself into the ground trying to figure out how to make a system work with a child whose physical abilities fluctuate by the day, week, and month.

And therein lies the problem. Kids with disabilities need access to all sorts of devices, all sorts of interfaces, in order to figure out how to communicate. And the expense of these things is a barrier to the education of these children altogether. States complain constantly about the expense involved in implementing the Individuals with Disabilities Education Act (IDEA), which is the federal mandate that guarantees a free and appropriate education for children with disabilities. At the present time, several states want the U.S. Department of Education to provide them with a waiver on special education spending, which they claim is a hardship.

And the gifted and talented advocacy groups do their best to advocate for the G&T population at the expense of children with disabilities, having found an argument that resonates with people: it's expensive to educate the disabled, and wouldn't that money be better spent educating our smartest kids? Zero sum game, the policymaker's hobby horse.

Why is it so expensive? It's the added staff, the aides, the physical, occupational and speech therapies. But it's also the equipment. And the augmentative technology industry has been lending a helping hand to critics of special education by pricing their products to reflect the inflated prices charged institutions and insurance companies, rather than pricing these items for the budgets of parents and families, the end users. So the control for helping our kids learn to communicate is, effectively, taken right out of our hands. And our ability to defend our children's rights to an education is compromised by the unnecessarily high price of helping them interact with their peers and participate in a classroom.

This morning, reading the NY Times on my iPad, getting sucked into the black-bordered rectangle of the screen, I decided, as a random procrastination, to browse the App Store. Much to my surprise, Apple's App Store, today, had a featured section on Special Education. In it were a couple of apps of which I was aware, and several of which I was not. For parents whose children can use the Dynavox, there's Proloquo2Go, an $189 app that mimics the protocols of the Dynavox, but at about $700 (including the cost of the iPad). For parents whose children can use the Big Mac and the Step by Step, there are the TapSpeak Button and TapSpeak Sequences, priced at $9.99 and $29.99, respectively. Soon to come, TapSpeak Choice, which will mimic the CheapTalk and the SuperTalker and similar devices. Mayer-Johnson has licensed the use of its PCS library for these apps at a cost of $24.99. And, unlike the other proprietary devices, these apps have storage capacity for messages and the ability to update and interchange pictures and PCS tiles, so that you can carry your library with you, as well as easily update it on the go.

The best part about these applications is that the iPad acts as a universal adaptor and platform for augmentative tech, meaning that the $499 price for the iPad allows it to turn into any number of devices. If you have a child with varying muscular abilities, that's really a god-send. And it makes experimentation easier for everyone because the price-point drops to something affordable. And, when the kids are bored at the supermarket, hey, you can screen a YouTube video.

For many years, I've been annoyed with Bill Gates and the Gates Foundation. I remember his early PSAs for the foundation, which suggested that all kids could dream, all kids could be someone. But no kids in wheelchairs, no kids with disabilities appeared in those ads. And the Gates Foundation has never had a program to serve the needs of children with disabilities--other worthy populations receive their help, but the King of Technology, the man who can summon some of the best tech people on the planet with a simple snap of his fingers, is too busy to help my kid and his peers. And the motto of the Gates Foundation is: "All lives have equal value."

Steve Jobs is no Mother Theresa. He's a rapacious capitalist. But at least he understands that the disabled, their families, and their caregivers are consumers, too.

Speaking Variant 380 G>A

2010-10-19T12:54:00.000-05:00

At the beginning of this, I thought there would be a test. Medicine, it seemed to me, was a matter of lining up correlatives in a biological dance. This finding from a blood culture partners with this illness, this urinalysis pairs off with that syndrome, and this MRI finding links arms with one or two disease spectrums. You take a test, you know what you have. Treatments, care protocols, and the like follow logically, like offspring.

Instead, I have been met with the mincing side-step of hypothesis. Hypothesis is never really there when you need him--when you call, hypothesis' roommate (doubt) always informs you that you have just missed him, already down the stairs and onto the street, on his way to another party. Hypothesis does not carry a cell phone. And when he does show up, hypothesis never has much to say about where he's been, offering vague excuses about late nights and a fuzzy memory.

Yes. I thought there would be a test. Even after enduring years of testing, afraid to pick up the phone at times, as though that could ward off bad news, I still held out hope for a test and a result. This had the curious emotional effect in us of correlating negative results with the sense that Robert had "passed" a test--a cause for celebration. And we did celebrate, for years, the utter inability of the medical establishment to pin what seemed like negative labels to his chest.

Each of these diagnoses, the ones with the shadow set of negative outcomes, implied a set of developmental limitations. And we had decided (well, just because we had) that if no one could prove limitations, could draw them with indelible magic marker around Robert's person (instead of sketching them with pencil) that we would live our lives as though limitations themselves were merely hypothesis.

Denial? Acceptance? I've never met them, though I hear of them through friends--acceptance with its dour, puritanical face, and denial with its manic cheer. Once you let them borrow a cup of sugar, they're back in a day or two for an egg, then a postage stamp, and, finally, they just start asking for money. And before you know it, they're part of your daily life.

To put a finer point on it, I've never been concerned with denial or acceptance because I travel daily to a land in which there are no knowns. Each of them draws insistence from something known, permanent, insurmountable. This is not a land in which nothing is real, but one in which there are no knowns. Here, in the world of Robert's medical condition, we see symptoms that manifest as shapes, but the shapes are not recognizable. It's the act of seeing without the interpretive action of the cerebrum.

As I told my family earlier today, we're on the Starship Enterprise, boldly going where no man has gone before. I just hope James T. Kirk isn't at the helm because, just between you and me, I don't trust his judgement.

We've finished the bulk of testing through the Cleveland Clinic, and I'm afraid, once again, there are no answers. Or at least no answers the way tests have answers. Nothing reductive.

I spent some time leafing through the various mailings we received with the results of these extremely expensive, complicated tests. Unlike the reams of white paper printed with black letters and symbols that comprise the pieces of Robert's chart I've amassed over time--these with their simple 'no's--the paperwork from these most recent labs has, well, something like caveats. There is, for example, the unknown variant, 380 G>A, which Robert and I share, which is probably non-pathogenic. Then there are a raft of 'common' polymorphisms in the mtDNA, arrayed in a simple chart with lines and a border. And in the results of the POLG1, SURF1 and SCO2, polymorphisms and SNPs (single-nucleotide polymorphisms abound, each with a non-vocalic string of letters, numbers and punctuation: C.280T>C, rs28615629, P.Ser194Ser, and so on. But, as the explicative text informs me, no mutations, no point mutations, no small or large deletions or insertions. Those are the big game.

I know that these polymorphisms and SNPs do not necessarily signify anything. They are little shortcuts and side alleys of Robert's genetic code. A manifestation of his individuality. But they are expressions. Of something. This odd language must mean something. For the first time, I want it to mean something.

But I don't understand this language, and perhaps no one really does. These strings of symbols are markers and in what rubric do they make sense? Inconceivable that it means nothing. Words mean little, being flat representations of things and concepts, until strung together to form phrases, clauses, sentences, or just set side by side to spark association.

If I had access to someone who could interpret this for me, I think he or she would say that the complexities of this DNA language, its implications, are not fully known--SNPs have the capacity to express disease, and the sum total of this genetic speech is though to hold the key to who were are, from where we've come, and to where we're headed. So, if I could read this, I would know. And I wonder if it's similar to what I try to speak on this blog, when I sit here, stuck for the next word, my mind attempting to bridge something I sense, but don't understand with something others can see.

I am on the outside of language, looking in. I've known this for a while, as I've struggled to match what I feel or observe about Robert with metaphor, image, idiom. And I sit sometimes, in this wordless realm, wishing I had an alternate language I could write in.

Here, at last, is a representation of Robert in an official language. The kid who lacks speech is, in the end, an expression of genetic code.

**

[Readers: thanks to all of you for your comments and support. If you have any interest, I've recently begun publishing essays about my attempts to understand Robert and what has happened to my family. The first is up at The Collagist now.]

Known and Unknown Knowns

2010-10-11T11:53:00.001-05:00

Saturday night, while watching a movie with the lights dimmed, we heard the soft tread of bare feet on the stairs. Hesitant bare feet. And we waited for Edith's face to appear. She'd had trouble getting to sleep, she said. Her face was small and contracted, as though she were going to cry.

Edith had been thinking about death. More precisely, she said she'd been thinking, 'but how will it all end?'

We comforted her by redirecting her line of thought: she still has so much living to do, and any ending is very far off. Sometimes it's best to push those thoughts to the back of your mind because thinking of them is overwhelming. And this realization is a reminder to make good use of your time here--to strive to be a good person and work as hard as you can.

We avoided saying that no one really knows their end, at least this far out. We avoided saying that everyone does meet an end, an end being inevitable.

I told her I could remember having those same thoughts at about her age: mostly these were a result of the contemplation of eternity, having been raised in a Christian household. Eternity, I tell you, is not something I direct my thoughts toward much--that idea that things go on and on without an end. How else do we mark and divide our time? The days end, the nights end. The work week ends, or the weekend. Graduations. Even marriages are both an end and a beginning.

But I don't like the part of the Yom Kippur liturgy about the Book of Life. The gates closing and all that. The idea that my destiny for the next year is preordained, written in the Book and based on my conduct over the last few days in particular. While knowing full well this is an inappropriate thought, it makes me think of God as Santa Claus, making his naughty and nice lists.

Life is like a book, though, our time here divided into chapters. Which is the analogy which Edith drew upon for her question: how will it all end? The problem is, it doesn't all end. When my grandmothers died, I thought not only of the stories they would not know of: Robert's diagnosis, the babies yet to come in my family, but I thought also of how they wouldn't know the endings to the plot lines on their favorite soap operas (both canceled now, which they'll never know).

And that's it. The soap opera, which cultural roots are in the medieval romances (and Dickens), in which the stories never really end.

But this makes the longing for resolution, if that's what an ending is, all the more intense. Why was I riveted by soap operas at one point in my life? Endless longing, pun intended, for resolution and ending.

Poetry is about endings, and therefore, about death, one of my poetry teachers used to say. True. If a poem arises from a speaking impulse, the impulse to tell something, to relay a voice, an image, a fascinating vocalization, the poem exists when an end is reached. Excepting the filibuster, vocalizations end.

And all of this above, that things have an end, that life is like a book, that we do wonder as we read, well, how will this all end?--this is the source of my mental conflict about this latest round of diagnostic inquiry. I find myself tortured by it: is this diagnosis it? Even though we cannot come up with genetic 'proof'? Or is this clinical speculation like the exercise of geometric proof (that I so despised in high school): one truism unwound and explicated such that it explains itself. I was awful at this stuff--constantly getting lost and confused by the obvious.

If we had the genetic proof, then we could retrace all of our steps, sort out our observations in one column and put our reasons in another. And that would be that, a self-contained system forever explicating itself in a continuous loop of logic.

Instead, I go through my days and walk through our house suspended in uncertainty. Has the end of the story been revealed to me? But even so, it would be but a template for an end. The specifics and particulars, like the see-saw between predestination and free will, are not yet written. But when I think this way, I can at least begin to imagine the future and its furnishings--and imagining this narrative gives me at least a hint of how I might live or what I might do.

This is what normal people do, I think. Normal people can look ahead, into the future, and imagine certain outcomes: how this one will go to college, this anniversary will be met, an addition to the house comes with a certain amount of money saved, we will go on vacation in June to a destination of our choosing--normal people can narrate to themselves a version of their lives that is not unpleasant, nor unrealistic. Even when events conspire against them, once the known knowns are in place, the facts of the divorce, the money lost in the stock market, the child who ran off to join the circus or the Peace Corps, then the ability to move the narrative forward begins again, and the chapter breaks can be visualized at crossroads in the future, the figures at those intersections small but somewhat distinct.

Our lives have not been this way for the last twelve years. Nothing is known. Nothing is certain. Plans are approximations and guesswork. Rare that I'm ever able to commit to anything, any event, no matter how small. I frequently can't get myself to make plans, even with friends for outings. Because I don't know what might change in the interim. Whether this is a reasonable facsimile of reality to which I am keenly attuned, or whether this is a character flaw, is not clear to me.

Tempting as it is to imagine certainty, uncomfortable though that certainty might be, I find myself unable to become comfortable with clinical diagnosis. Nothing is resolved. We're still guessing, even if we can dress "guess" up in the fancy clothes of working hypothesis. Which makes me long for resolution no less.

The movie we paused as Edith crept down the stairs was Doubt. The movie that opens with Father Flynn's sermon: "Doubt can be a bond as powerful and sustaining as certainty."

Saga of the Bed, or Fairness and its Discontents

2010-10-05T11:52:00.000-05:00

Last night, a medium-sized brown box arrived. It was waiting for me on the floor of the foyer after my walk from the metro post-work. In it were bright orange shoe boxes, new Nike running shoes for Edith and myself. We are "training" (which is a relative term for a 10-year-old's effort) to run in a 5K fun run in November. She's also in a running program at school. To encourage her to take it all seriously, I bought the shoes: black with hot pink laces and the proper support to prevent injuries.

Why am I justifying this purchase to my readers and whomever else might be out there? I have to justify everything, or so it seems.

Robert was a bit put out when there was nothing in the box for him. He offers a hopeful look, eyebrows raised, eyes wide, and glances from the box to me to Edith. Robert can't go running, and I can't justify buying shoes that expensive for him. Furthermore, shoes with laces and a narrow tongue are frustratingly difficult to get on his feet: his toes curl under through some reflex as I try to slip them on, and he can't wriggle his toes and feet to assist me.

But the question of fairness floats ephemeral above our heads, up against the recessed lighting. Because I don't know what else to say, I tell Robert that Edith needs these shoes for sports--and that he has other needs that she does not. For example, Edith has never had a wheelchair, and he has had three. There have been times when Edith wanted a wheelchair, say, at the National Zoo, which slopes from the entry a good mile to the bottom of Rock Creek Park, from which point we must return to our car. In fact, she used to complain that it wasn't fair that Robert got to ride when she did not as we huffed and puffed our way uphill.

I didn't feel especially good about this explanation, although it made Robert happy as a clam that he had outdone Edith. Edith doesn't need running shoes in the same way that Robert needs a wheelchair. But, on the other hand, our co-insurance for Robert's wheelchair was about $850, while Edith's shoes cost $82.

And that is a dilemma. The fact of the matter is, no matter how much I would soften the point or choose to ignore the point altogether, we spend at least $5,000 every year on disability-related items, and those expenditures impact what can be spent on Edith's needs.

Which brings me to the subject of the bed. The Sleep Safe bed. The bed I would very much like to purchase for Robert so that he no longer has to sleep on an air mattress on the floor. Which he's been doing since he outgrew his crib. Robert's head has to be elevated while he sleeps (he has g/i reflux), and he can wriggle on his back a little. If he slept in a twin bed, he could fall out, even with guardrails (which can be pushed out of place easily). And Robert has no falling reflexes, so a fall from bed could mean broken bones or a head injury. Or worse yet, strangulation--say he kicks the rail partly away, but becomes entrapped in it as he slides or falls out of bed.

As I have discovered, the manufacturer's suggested retail price (MSRP, yes, there's an acronym for this) is $8408. That's a lot of money. I have a care budget for Robert from the State of Maryland, and I could, possibly, fit this purchase in--if the DDA will approve it. Will they? Don't know. This is, after all, taxpayer money. So I justify, I justify. To you and you and you. Some days, I think we live in a glass box, taxpayers peering in, wondering why I have a nice TV if my son needs an $8408 bed or why I would think of buying my daughter $82 shoes if my son needs an $1100 bath chair.

What, exactly, is fair? Should Robert be entitled to extra money from the state if my husband and I are not destitute? I would like to think so, given that we're certainly paying for a large share of his medical and other expenses. It's no one's fault--not mine, not Roger's, not Robert's, not my neighbors or the people of the State of Maryland--that Robert has such severe disabilities. It is, frankly, a matter of demographics and actuarial tables. One in so many hundreds of people will have such problems. Just happens to be our family.

I would like to think that taxpayers would look at some of these expenditures and think, hmmm, it's good to know that if I or one of my loved ones (as they say on the infomercials on TV directed at seniors) were ever in that much medical trouble, I'd have options, someone would have my back. Rather than think, as seems to be the case these days, what a waste of money that disabled kid is, why should he get things when he's of no value to society, why should I have to pay for any of his care when I'm not disabled? And the capper: his parents chose to have him--so that's their problem (oh, I promise, I promise, I will not get into why I have such problems with pro-"choice" rhetoric).

But another way to sort through all this is, why does this bed cost so much? I've been trying to get decent quotes for it from vendors--and I had some outrageous ones, including one for $15,000--because the world of durable medical equipment is not transparent.

So far, I've discovered that if I could order it directly from the Sleep Safe company, I would pay the MSRP of $8408. I'm so inured to this world of DME with its price tags of thousands for things made of PVC piping and mesh and wood and special foam and antimicrobial plastic and so on, so inured to it, that I stopped in the middle of what I was doing this morning and thought, hmmm, $8409 would be enough to outfit a computer lab at my daughter's elementary school. It would buy 10 or 12 Dell desktops and 4 or 5 HP printers. Maybe more. If the price of a computer is our mutual point of reference for "very expensive," then this bed is just off the charts. Hell, this bed should be able to fly Robert cross-country. It should be able to take his temperature from special sensors in the mattress and emit a warning beep in the middle of the night and calculate the proper dose of Tylenol for him from a special scale encased in the box spring.

But it won't. So, computers or beds? Should Robert have to sleep on the floor for the rest of his life so that elementary school kids can have computers? Should Roger get a hernia or myself a slipped disk trying to lift him from the floor as he sails by the 80 pound mark and up in the 100 pound zone? A Hoyer lift does not open wide enough to go around a mattress--to lift from a bed, the lift is positioned so the support legs go under the bed. What's the cost differential of the bed or paying someone strong to be at our house in the morning and the evening to lift Robert in and out of bed?

As I said, I would pay the MSRP if, and only if, I could order the bed directly from Sleep Safe. But I can't. Because the program rules for the social services program Robert is in do not allow me to make a purchase and get reimbursed. Nor will the State of Maryland give Sleep Safe the taxpayer's credit card number and have them ship the bed. I have to order through third party billing, in which a dealer or vendor buys the bed from Sleep Safe, delivers it to my home, my case manager verifies that it's there and in working order as specified, and then and only then can a check be cut to the middle man. Naturally, the middle man wants a higher price for all of that risk and effort. As I was told recently, in a not-so-nice way, this is a business and things aren't free.

So before some of you start rolling your eyes about government red tape, consider two things: 1) the middle man has a family to feed and retirement to think about and is just doing his job in our wild and wooly capitalist system, and, 2) if I could just buy stuff and get reimbursed with taxpayer money, a lesser person than myself could commit a whole lotta fraud.

But this does not solve the problem of Robert and the Sleep Safe bed. And it doesn't entirely answer the question, why does this stuff cost so much? Or why the Sleep Safe people don't post prices on their website. Or what a fair profit margin is. Or what the bed costs to manufacture. Or whether this stuff is overpriced as a bargaining chip with insurance companies and government institutions. Or whether people with the American ingenuity to find an unmet need in the marketplace, design a bed, manufacture it, and build a business should be told they have to cap their prices. Or whether people with disabilities should expect to get things for free. Or why "value" is such a relative term in our society.

Or (and here I am surely hallucinating) how we can build a society such that business prospers and all people have a shot at a decent quality of life, including the disabled, who might be, but for the grace of God (for those of you who believe), you or me or a neighbor or a friend of a friend or someone at your kid's school. Yes, really. It could happen to you.

Fairness is our meditation topic for the day. Now go meditate and get back to me as the answers come to you.

Complexity, compassion, (health) care

2010-09-28T12:21:00.000-05:00

For some time--weeks, months--I've meant to post something about healthcare and health insurance. While the initial debate was on, I had quite a lot to say. But since passage of HCERA, which became the Affordable Care Act, I've not been sure what to say. And now the dust devil of debate is cycling again and storming toward November 2.

The election. And will healthcare 'reform' be overturned? repealed? The odd spectacle of the Republicans picking up the banner of ACA's most popular provisions (no lifetime limits, ability to keep your kid on your policy until age of 26, no pre-existing condition denial for children, for example) and running with it, while at the same time telling everyone that, hell, no, you're not going to be forced to buy health insurance.

Excuse me? And how is that going to work? Have we forgotten, people, that insurance is method of managing risk and that, in the private market, you can't provide benefits to people who need them without having a whole lot of people in the pool who don't need them at this time?

I am, geez, a charter member of the You Can't Tell Me What to Do Club, but even I get this. And if people are so upset about this, why aren't we organizing mass marches on the DMV so we don't have to buy auto insurance, which is required by every state? I mean, who has the right to do that? Don't I have a god-given right to smash up my car if I want to?

So no one wants anyone, or at least particular Anyones, to tell them what to do. But everyone wants healthcare to be nearly free. A doctor friend of mine talks about the experience within her practice when they toyed with the idea of simply not taking health insurance. My own internist does not accept insurance. All this means is that you pay upfront for your medical care, the practice prints out a standard form with diagnostic codes, physician number, and other data required to file a claim with an insurer, and you take that home and fill out the claim form required by your insurance carrier, stick a stamp on it and mail it. In a few weeks, you get a check for some portion of the amount you spent.

Sound complicated? A little, but it's what health insurance looked like 30 years ago before HMOs became an industry standard. Doctors are starting to like the looks of this model, because it saves them money. They have less administrative overhead. If a patient requires lab work, other tests, and/or a hospital stay, the patient has that work done at a facility that accepts their health insurance.

Anyway, the whole idea of this change caused many of the patients at my friend's practice to completely flip out. What do you mean? It's going to cost me more than $10 to see a doctor? These are the same people who go to Nordstrom's every other weekend and drop a few hundred bucks.

The HMO model has convinced most Americans that healthcare should be cheap. So they don't budget for it.

Another friend who works for a public relations firm that handles many healthcare clients, tells me that the biggest problem with healthcare reform is cost. This after I try vainly to tell her that heavily subsidizing care for the healthy is the problem.

So, who's going to pay? is the second theme of the healthcare debate. Second to 'you can't tell me what to do.' And everyone, myself included, is running from that discussion.

Many people are pretty sure that they shouldn't be paying because they're just incredibly healthy. The people who should pay are the sick ones. So themes one and two cross paths here because a big portion of the healthy people don't want to buy an insurance policy. Which just brings us back to the huh? factor when the majority of Americans seem to want to keep the insurance system that we have now. Um, right, so that would be the same as not wanting to buy auto insurance because you've never been in an accident, and only the people who have been in accidents should have to buy insurance? Right. So tell that to me again after you figure out how you're going to get a new car after the guy who just lost everything in the stock market runs a red light and destroys your Subaru.

Insurance is, I suppose, a way of redistributing funds to people who need them by collecting money from all. OH MY GOSH!! Insurance is a socialist plot! Even if people are making a profit! No, wait, it's a socio-capitalist plot!

And this is the juncture at which the public option (may it rest in peace) is supposed to make things so much simpler. Because in this model, money is collected from all to be doled out to those who need care, but nobody makes a profit on it. So it's just a socialist plot.

Simpler, simpler, simpler. Policy discussions frequently snag on the fence between making things simpler and maintaining the current complexity because constituencies have developed. That is, do you stick with the devil you know or the one you don't? 'Know' being the operative word because knowledge is power in these situations.

Which is precisely the problem with the ACA. That's right, the law that allows us to keep our current complexities while promising to make everything simpler. Here's the website.

Would a public option be better than this? Honestly, I don't know. There's a part of me that is reluctant to subject the level and quality of my son's care to partisan politics. Look what happens with Medicare and Medicaid. Robert has what is still an undiagnosed condition. Would we have found the treatments that we have if he had been enrolled all this time in what is an anti-poverty program? And we know how our politicians use poverty as a political football.

I know I've been lucky. One way or another, by hook or by crook, I've managed to find good health coverage or outsmart the people giving us bad coverage. In short, I've learned to game the system. I've had to, as Maryland does not automatically enroll children with disabilities in Medicaid. What has my learning curve cost me? Money, time, peace of mind. What have I gained? The right to pursue answers. The freedom to find them.

Would I have had that with a public option? I don't know. I would like to believe that Robert would have had good basic care. But basic care would not have been enough. The odyssey through our weird, convoluted medical system, with its blend of private and public care, research institutions, highly specialized physicians and scientists is what yielded treatments and theories. Participation in employer based plans gave us cover we wouldn't have had in the individual policy market. Without these, Robert would have died years ago, or he'd be so locked into his body that he'd be a vegetable. Would a public option have given me access to researchers and the gold-plated physicians we've seen?

And as I type these words, I can imagine those faceless, juvenile commenters who cluster like flies on national news sites saying that Robert's life is worthless either way, that all I've accomplished is wasting resources. And I can also hear the echo of the health care policy debates from last summer, the ones in which actual policy persons facilely separated the economics of healthcare from the human face of treatment. And when they talked about rationing care and incentivizing people against the 'over-consumption' of healthcare, I couldn't help feeling defensive. And angry. Who were these policy wonks to tell me what I could and couldn't do for my child? Where was their compassion? Were they laying the groundwork for an argument that the disabled should not have access to cutting edge care?

Political hacks like to say that the moment Michael Dukakis definitively lost the 1988 presidential election was in the debate in which Bernard Shaw asked the governor whether he'd favor the death penalty if his wife were raped and murdered. Dukakis said, no, and cooly went on to describe his position without a hint of emotion or a sense of compassion.

The moment the healthcare debate shifted out of control for the Democrats was when Obama used the example of his grandmother to illustrate a problem of cost containment with healthcare. Near the end of a terminal illness, she broke her hip and had to choose between pain management and being bedridden until the end, or, having an expensive operation with an uncertain outcome. She chose the latter, and Obama served this up as a bloodless example of the problems of allocating resources.

This post was not meant to be a tribute to our current insurance system, nor a dismissal of the public option. And by no means was it meant to suggest that reform is not an urgent matter.

On my car, I have a bumper sticker with a quotation from the Dalai Lama, Compassion is the radicalism of our time. As every day goes by and the political weather system overhead rumbles and threatens rain and thunder, I learn more about what that sentiment means. Until each of us can set our thoughts toward compassion for our fellow human beings, we will continue to live in a country with exceptional resources for treating disease and disability, but only some of us will have access to treatment and care.

Poetry a la VIDA

2010-09-20T20:50:00.000-05:00

Intrigued by the furor over the numerical disparity in reviews of male and female fiction writers in the NYTBR and elsewhere, I decided to revisit a post I made three years ago on a similar topic. For those of you who know little about this, which ball has been picked up and carried both by She Writes and VIDA, I refer you to this link in The Rumpus, which will eventually, if you follow everything diligently, provide a link trail everywhere.

In January 2008, after visiting Poetry Daily, well, um, daily, for a while and noting that the site published far more poetry by men than by women, I did my own count and wrote the following on this blog:

First of all, after visiting Poetry Daily, I started wondering how many women and how many men had been published on the site over the course of the year. So I counted. This counting is not exact--I checked bios to see if names of indeterminate gender could be identified, but in some cases they were not identifiable as men or women. So, to create balance, if a translation was posted, I counted it as by a woman if the original poet was a woman or if the translator was a woman. Thus, my method is open to some degree of error.

I found that, in most months, women writers comprised slightly more than 1/3 of the total posts. A couple of months were near parity, but only during April and July 2007 did Poetry Daily publish more poems by women than by men. The site content for the year from Jan. 4, 2007 thru Jan. 3, 2008 was 42.1% content by women, and 57.9% content by men.

What does this say? Not a whole lot, but it does raise a lot of interesting questions. Why do poems by men catch the eye of the PD editors more? Is it that poems by men constitute approximately 60% of the journal content that PD reviews? Is it that more prominent poets are men?

The other interesting thing is that if you consider the demographic niche that poets occupy, the discrepancies are curious. I would guess that some 5/6th of poets are college-educated. Over the last decade, college enrollments have risen from male/female parity to a slight female enrollment edge. So more women are enrolled than men. I would also guess that most poets who are college graduates have a BA in English or American literature. I couldn't guess what the percentage would be, but it would certainly be close to 60%. If I visited the College Board's website, I might be able to find out what percentage of English majors are women, but I need to get down to work today. I would guess that about 60% of BAs in English are awarded to women. So in a demographic skewed significantly toward women, male poets are, on a daily basis, noticed and recognized the most.

I should note that my figure of 42.1% included some double-counting with translations--if I were to count men the same way, there would be overlap. If I decided the day's 'poem' was the translation and not the original, then the percentage of women for the year would drop to about 40%.

On 5/31/08, I counted the site's content in terms of gender from 1/1/08 thru 5/31/08 and noted that for that partial year, 48.6% of the content was by women; however, in May of that year, Poetry Daily had published 58% content by women, which was very unusual for them (and I never finished the count for all of 2008 because I am very lazy). What I found was that, over the year or a better part of a year, Poetry Daily has one or two months when female poets out-number male poets, and three or four near-parity months, but several months in which men out-numbered woman by A LOT.

I can't go back and re-count the numbers for 2008 because Poetry Daily only archives the last 365 days of poems.

But the pattern continues to hold at PD. I counted the current 365-day archive, from mid-September 2009 through mid-September 2010. And I used my system of counting the gender of the translator--although this got a little sticky as male-female translator pairs were posted quite a lot by PD this year. I am not perfect. Hedging a little on the couples translator phenomena, I probably upped the count a bit in favor of women and came up with the figure of 44.9% content by women over the course of the last 365 day period.

So the good news is that Poetry Daily is near-parity in content by women, which is much, much better than the reviewers at the NYTBR and other venues, in which books of fiction by women are reviewed at a rate of about 25-30% compared to books of fiction by men at about 75%.

What's intriguing or even disturbing, though, is that there is a persistent trend on PD to post more poems by men than women in any given month. While poems by women account for about 5% more of the yearly total in 2009/10 as compared to 2007, in only two months, February and July 2010, are more poems posted by women than men. In three months (Dec 09, Jan 10, and May 10), PD posts just ONE more poem by a man than a woman--so three months are close--but, overall, 10 out of 12 months, PD posts more poems by men than women. And, frankly, in both February and July 2010, men still represent 43 and 44% of content, respectively, while in the two months that women are significantly underrepresented (Nov 09 and April 10), women account for 37 and 33% of the content, respectively.

Does any of this matter? I think so. Gender bias is pervasive and often unconscious in American culture--the simple act of counting reveals data elements that are worth thinking about. These are the facts. And why are they so? Is it just happenstance that, month after month on PD, the editors choose to post more poems by men than by women? And that, in two samples over three years apart, in only two months out of the year in each sample are more poems posted by women than by men?

I don't have any figures on what the gender split is in most journals month to month, or how many books of poetry are published by men and women each year--these are the two sources of poems that PD uses. But having a poem posted on PD is a coup for the writer--and that opportunity is afforded to many more men than women. PD doesn't have to be 'fair'--little in life is. But PD is not immune to whatever it is about the male voice that is recognized more than the female voice in letters. And that's just something to think about.

Light as shadow

2010-09-16T22:47:00.000-05:00

For our first wedding anniversary, my husband took me to Death Valley. An odd choice, I know. But I was enthused. He said it was the most amazing place he had ever been--he grew up in California. If I remember correctly, his mother let us take her red sports car (was it a convertible?) off into the desert. From Palm Springs to Death Valley. From one sort of resort town to another. From the Happy Desert to the Scary Desert.

Death Valley is a place of extremes. Obviously. I remember our snapshots: posing in front of various rock formations, the salt flats cracked and dried and looking suspiciously like octagonal Metro tiles, the haze over the valley from the highest point. And the highest point was very, very cold. After we had been hot, even in November, we were very, very cold. The wind always there, wherever we were.

But everyone knows these things about Death Valley. My clearest memory, one that isn't recorded by a photo, is of the stars. After an anniversary dinner at the park's 19th century lodge, we drove for a bit, out into the night desert where the sky settles like an enclosed dome. Over the sand reflecting weak light into the distance, over the car, over us. Of course, you know what I'm going to say, that the sky bristled with stars. That they were everywhere. That the Big Dipper was hard to find. That it was beautiful--but it wasn't. I felt a sense of awe, rather, and I was afraid.

What I saw was everything I had never seen before. Where I live, bright lights cast shadows against the sky, covering up all but the brightest stars. In Death Valley, I saw what I never see--every star revealed to me, crowding thickly, begging attention. A thousand thousand unblinking eyes looking at me. A million possibilities brightly pricked into the ethereal fabric of a single life.

Of course I felt fear. There are things that will happen to us that we should never sense or see.

All the stars clustered and strewn over the sky without a path between or among them. We've just been through yet another round of medical testing that has yielded very little--and, this time, we've thrown real money at it. The initial lab bill was almost $16,000. Our co-pay was about $1,300. Upon opening the envelope, I had to call the Cleveland Clinic, just in case they made a mistake--we weren't hospitalized, after all. I mean, I've seen hospital bills for more.

These were genetic tests--one test alone was approximately $5,000. The DNA microarray came back without findings. The mtDNA analysis was returned with a single finding, an unreported defect on a non-coding portion of the chromosome. I was tested; I have the same defect. Because I'm OK (a relative term, I know), the assumption will be that the defect is non-pathogenic.

I know from amniocentesis performed during my pregnancy with my daughter that I also have a 'variant arm' on a noncoding portion of one of my chromosome 20 pair. So my genome is a little ragged. Yours probably is, too, you just don't know it.

The sky is littered with stars I would rather not see; my mailbox is littered with test results, the which negative findings are both welcome and unwelcome. Twelve years ago, these negative results were a cause for celebration--because no one could identify what was wrong, the possibilities of Robert's life shown through the dark fabric of his illness.

Now, with possibility winnowed, frustration sets in in a way it hadn't before. Of the thousand thousand diagnoses out there, which one does my kid have? We keep sifting the sky.

For now, until I am told otherwise, the diagnosis of exclusion, or, perhaps it will be a clinical diagnosis, is Leigh's syndrome. That is the name for the picture his brain makes on the MRI--the way the scan darkens where it should not.

There are more tests. Having done the mitochondrial blood tests, there is still a skin biopsy. The possibility of referral to a geneticist in Cleveland, someone who can parse the genome and its discontents--someone who may be able to connect the bright spots of this presentation with medical evidence.

What we know: a breakdown with pronounced ataxia and loss of motor skills that at least mimics the breakdown of Leigh's syndrome, an MRI that presents as Leigh's, a handful of negative tests to rule out other conditions that cause that brain image also known as bilateral striatal necrosis, an organic acid quantification that shows abnormality of metabolites of dietary medium chain triglycerides, a cerebral-spinal fluid analysis that shows significant neurotransmitter deficiencies. These few facts gleaned only over a six-year period.

Back to the starscape. Now I can identify a few points in an emerging constellation, a constellation marred by thousands of stars crowding around those points. In this world, light is shadow. As I move from the desert and its stellar confusion toward civilization and its artifice (not its pretense, but its making), the light shades night and the irrelevant stars disappear. The constellation emerges, right?

People thought we were odd, not to go to Death Valley at all, but to go there for our first anniversary. What I saw was everything I had never seen before. The trip was preparation for this life--a life of awe and wonder, a life of extremes. And, still, we smiled genuine smiles in the photos. Because we liked it there.

Here's the thing

2010-08-26T22:35:00.001-05:00

Just after getting everyone to bed, my own routine tasks completed for the night, lights out in the interior of my parents' camp, I left my bedroom for a moment and the view through the big glass windows in the living room caught my eye. Through these, the big expanse of the lake is visible, daubed out in two places by trees, but still, the reverse shadow of the moon fell across the lake--that is, light draped a sleeve along the dark blue shadows of water, mountains, sky. Behind the clouds, the moon, backlit.

This is our next to last night here before returning home. Tonight is cool and already the trees are beginning to turn colors in tufts. I am glad of everything we've been able to do--although this is the first year Robert has not gone in the lake. There is a staircase down to the dock and another set of stairs into the lake, much narrower. And his weight and size exceed my capacity, and even Roger's, to get him in. He has sat on the dock in his blue Tumbleform chair and seemed very happy with it, though.

I keep pressing up against the margin of the possible.

This is also the summer of the home lifter. The lift looks like this: a beige pillar at one end of two long beige metal bars with small wheels that run parallel to the floor. From the pillar dangles a large beam that sprouts multiple hooks. To these hooks attach the straps on the blue sling, and the sling holds Robert while I press a lever that operates a pneumatic lift. Up and out of one seating situation and into others. Or into bed.

I've been able to see all of these things coming at me, but they've been in the distance, blots on the horizon.

Even so, I feel accomplished after a week of this on my own, after Roger left for work last weekend. Robert's care is consuming, and the tasks, combined with ensuring that he actually has a vacation and fun, burn up the days. I just set my own thoughts and feelings aside. This is a way of blanking out the mind, and, sometimes, letting my mind rest is just ok. I don't know that it's like letting a field lie fallow, but after a while, letting tasks and email and obligations spin slowly to a stop feels right.

At the margin of the possible is a whole lot of durable medical equipment. And that's what I've been struggling with over the course of this two week vacation. The wheelchair we've been waiting on since November (part of this is, indeed, my fault, I will admit), coaxing along an order for a bath chair that has been hanging, unfinished, for close to a month (and I still don't know if it's actually been ordered yet), taking matters into my own hands with what is called a handicapped stroller that has suffered multiple problems.

DME puzzles me. The insurance company pays the lion's share of the wheelchair, but nothing at all for the bath chair (cleanliness is outside the purview of medicine, apparently), nor anything for this 'stroller.' Instead, I'm using Robert's care budget from the state, from which I also request funds for his after school care and his aide for that program, as well as other personal care items that insurance doesn't cover. The care budget is generous, but Robert's costs are high. And when I spend nearly $5,000 of this allowance for a stroller so he has some kind of mobility device while we wait endlessly for this wheelchair order to work itself out, yes, I do expect it to function properly. I don't expect cheap plastic straps to break, making something virtually useless, or that the seat will not come off so it can be folded, as advertised.

I don't know whether I am in the right or in the wrong when I insist a bath chair must be sent back to the manufacturer (even though bath chairs are not returnable) because its features do not operate as advertised on the website--because the size large chair is structured differently than the small and medium chairs (and yet the manufacturer posts a photo of the medium-sized chair and its accompanying copy under the description of what is supposed to be the large chair). Or whether I should be frustrated because when asked to pay $1,100 for a bath chair that is not returnable, I have to rely on a single photo and make my decision without a clear sense of how the equipment actually operates. Am I living in the 21st century or not? Video embeds on the website, would that be possible? Multiple photo views? When I buy an $80 dress from J.Crew, I have a lot more information about it than this bath chair.

I have never felt more American than I do complaining about durable medical equipment. Never more the consumer. Never more sure I should have good sales support and customer service. And yet, and I don't know if this is some kind of puritanical guilt at my own impulse to get my money's worth (or perhaps the Puritans were experts at wringing a dollar, I don't know), if I imagine this out of the corner of my mind--but I keep wondering if some of the people I deal with think that I should just be grateful to have this equipment, regardless.

Here's the thing. I'm not as grateful as I should be. Grateful, yes, for the money to purchase these things. But not grateful for the costs--some of this stuff is marked up 150 to 200 percent. (And, yes, I do know about adaptivemall.com, but they don't take third party billing).

Alas. To be grateful. The people in the DME catalogues always look grateful. The land of a thousand bath chairs, and which one is right for your child? Don't make a mistake, because no one's going to take it back if you do. Or if the stander isn't right, or the walker. Step right up and spend your money.

I want to be grateful. Pressed up against the margin of possibility, I am grateful for the adapted van, for the lake, for the time here. For the relatives I was able to see, for the ADA code that makes even the most routine things possible, like going to the grocery store or a museum or traversing the street. Grateful for a child who endures the sling and lift with good-hearted patience and even finds it fun. Grateful--an emotion ephemeral and reflective, like light glittering on the surface of water.

Pale blue shadow of the mountain

2010-08-20T23:35:00.000-05:00

One foot in front of another. That's how it goes when you're hiking. At first, the trail was what you might expect of a hiking trail: dirt path through dense young growth, the older trees spiking up through the lower canopy, the world all gradient browns and greens both bright and shaded.

But the path quickly becomes steep. And, to compound the challenge, what was once a dirt trail is punctuated more thickly, then consists most entirely of rocks, rock outcroppings, and tree roots so densely tangled that they look like the interwoven lettering of an Islamic mural or painting. Which I have heard, although my memory and understanding are often faulty, is because images are profane; thus, art consists of the traceries of words.

At any rate, traceries of the forest canopy allowing only filtered light down to us moving slowly up the mountain, I had forgotten that this was indeed a somewhat challenging trail. We were climbing Camel's Hump, the second highest peak in Vermont, me, Edith, my friend Karen and her two children. The three children, at intervals, insisted they were going to die, they were so tired, but they said it with such drama that it was difficult to take them seriously.

So we told them, at intervals, that, really, it was only a little further to the top. Yes, we remembered from when we were younger. Although, really, we didn't. The trail continued on impassively, and it was something like climbing a rock staircase that went up and up, a stairway to heaven, yes, sure, go ahead and think it.

Most of the way up, I thought about the fact that Robert could not do this. But that I could. I didn't feel guilty, although around the edges of my consciousness I felt vaguely guilty for not feeling guilty, the way Conrad says of Marlowe that his tale brought out the story the way a glow brings out a haze, or something like that. Something about a cracked nut and a sailor's tale and the importance of the story not being at the center, but around the edges, while some unretrieved and inaccessible meaning brings out light the way an interior glow brings out a haze.

Because I wanted to do this. I wanted to do something, well, inaccessible. Because I am always doing accessible things. I am always looking at actual mountains and wondering if I could climb them because that would seem to accomplish something I cannot accomplish while climbing all of these invisible mountains I am forced to climb daily: the unreliability of childcare, the durable medical equipment that does not work or breaks down, the power going out and Pepco sorts telling me I (yes me) should be prepared but they don't have to be, the white envelopes with the blue BCBS logo that arrive singly or in batches in our mailbox, the planning as though launching a military campaign that it takes us to get from one place to another.

So the mountain was steep? I threw a couple of windbreakers, yogurts and miscellaneous snacks (really, whatever I could lay my hands on at the last minute), wallet, phone, bottles of water--yes, just the things I thought to grab into a new REI bright yellow daypack--and off we went. That was it. Toss things in a bag and go. They didn't have to be the right combination of things, and it would have been possible to forget a few things. And I would not have had to turn back as I might have had Robert's pump needed a charge or a piece of tubing forgotten, a diaper (god forbid we are without incontinence products, the spare tires of life in this house).

Oh, the mountain was steep and it was strenuous and I would not have turned back for all the whining my daughter might have been able to muster. Had she been in the least truly serious about her whining.

We kept them going with chocolate snacks and rumors of the top. What a spectacular view it would be. How it would ruin their lives if they were to expend all this energy and not make it to the top. What is the climb for, if not to reach the summit?

On the drive to Huntington, we drove on a part of Route 2 I'd not driven in quite a while--when the road winds down a steep hill out of Williston, past the old school for the disabled whose name I forget right now, and past the other end of Thomas Chittenden Road, which is near my parents house and is closed half the year, and down across the river flats leading to the Winooski crossing and into Richmond. And when you come spinning down the hill and onto the flats, the pale blue shadow of Camel's Hump is right in the middle of the road, right in front of you, as though if you could gain speed you might sail right toward it. And I said, look, look, that's it, that's where we're going. And Edith said, wow and paused, and then, all the way up there?

Before you reach the summit, many trails converge at the "saddle," which is between the two peaks or "humps." A clearing with sloped rocks suitable for sitting and eating and waiting. A little natural stage, something the way A Midsummer Night's Dream is staged, with actors entering from sundry trails left and right, one set of players leaving just as others enter, although you know they will all cross paths by the end.

The summit is where the trees get short and windblown and the trail hugs the side of the mountain, exposed, and then there are vistas, which only made the children go faster. Because this was really beyond what they had imagined or hoped for. They have, naturally, been to the tops of various things: hillocks, piles of large rocks, perhaps a tall building. Short though they are, they know what it's like to be up higher, and, while that can be fun, it no longer impresses them. But the top of a mountain, looking across at the same height as these blue shadowy images that are pasted on the horizon everywhere you go in Vermont. Well. That was something they hadn't imagined. Narnia, through the wardrobe--as though they had stepped through the border strip images pasted near the ceilings of their lives.

The top of Camel's Hump reminds me, as macrocosm, of the top of a big rock in a field at my grandparents' old farm, the rock called Pig Rock. The boulders are large and rounded and weathered and interspersed with grasses and low-growing shrubs. Pig Rock gave sight to the main house, the yard, down to the highway and the neighbor's. Here, on the Hump, we could see forever, if forever is simply a matter of mountaintops receding evermore into the distance, one after another with the valleys scooped and shaded in between. The wind whipped our hair, as it should.

Back down the trail we were quieter, in part because we were tired, in part because we needed to pay ever more attention to our footing. Each step on the way down requires at least a passing thought to avoid tripping and falling down the cascade of boulders stippled into the trail.

And that's where I am most days--looking for my footing. Every obstacle must be stepped over, on, and up. There is no down. And this is what bothers me. That I've no idea where the summit is, or even what it might be. The trails are unmarked here, although it appears others have used them.

On the way up, Edith took to asking hikers on their way down how much further it was to the summit. Most replied, not too much longer, and, eventually, you're almost there. On the way down, she called out the same things, unbidden, to hikers on the ascent.

I don't meet hikers on the way down. Wherever the summit is with this, do people just stay there? Maybe the view is glorious. Yes. Up and over the medical bills, the doctors' appointments, the broken down car, the parts of the wheelchair that keep breaking for no reason, the endless washing of tubing, the medical supply company that starts telling me I can't have things until I finally tell them that they are not actually the insurance company, the bath chair that the company misrepresented and I forced them to take back. And, oh, I am not nice when I climb, I am far from nice--nice is the base camp of this. And I whine that I feel like I'm going to die and no one takes me seriously either. The traceries of all the words I have ever said over my head like a canopy of things I cannot take back and I hope the better words sprout leaves to cover up my impatience and my anger.

And from the summit all around down below were vestiges of my former life. Because I grew up in Richmond on Main Street in a house that is now a bed and breakfast. And afterward, Edith said, take me on the tour of your life, and we drove past the old elementary school that is now the town offices with the one-time church that was once the gym and cafeteria and now the library, always and still across the former playground from the school--and in the winter, I had always told her, we had to bundle into our coats and boots and scarves and mittens and walk across to have lunch waiting in the dim hallway to the basement level where the call would come back up the lunch line, spanish rice, and every one would make a face--and she said, that was exactly how I pictured it. And the other church that was my old kindergarten and the store at the corner that used to sell candy cigarettes and is now an office building, what once was the Cash Market, and my middle school--Camel's Hump Middle School. And then the old Victorian house out of which eaves used to fly swarms of bats in the summer dusk. But the lilac trees were gone and the maple trees out front had grown out and fallen or been sawn.

But the house remained the same color scheme it had always been--a yellow/gold and green. And I thought about how this had been my life once, when I was about Edith's age. And I couldn't get myself to knock at the Inn door and say, I grew up in this house, could I see inside? because I really didn't want to see how it had changed. I like my memories looking down and in--the distance suits me fine.

Maybe I'm close to the peak with this and maybe we can climb back down someday. What will that be like? Will the climb down be as difficult as the way up, or just a different type of difficult where we are all watching our footing, watching each other, trying to prevent a fall? Maybe when we reach the summit we will all know what we need to know and look across at where we've been and yes there will be knowledge of a sort up there.

I can't imagine it.

But I do think often, and for no reason, of the day in the mid-70s, when we lived in the old house and Andrea, our babysitter, came across Main Street from the brick house she lived in and told us, because there was no internet or 24-hour news or texting or even much TV, and she came across the street to tell us that the war was over and all the boys were coming home. And in the distance, if I had looked for it then, just over the rooflines of the houses where my friends lived, was the pale blue shadow of the mountain.

Permeated

2010-07-28T22:23:00.000-05:00

Taking a deep breath, I pushed Robert down the wide black floor mat and through the silent sliding glass doors. Taking a deep breath because I had not been to the emergency room at Georgetown for a long time. The morning was still early and the waiting room was empty. Beyond the waiting room, machines beeped softly and the tread of rubber-soled shoes on the linoleum floor was soft as well and the slide of the curtains on the bays.

I was apologetic because this was urgent, but not a dire emergency. We had been sleeping, en famille, on our family room floor for two nights--the family room because at the corner forms a bank of windows, which can be opened to let in cool air. We were lucky because the evenings did indeed cool down so the house could breathe in the night air and exhale some of the heat.

Our power had been out for two days.

The storm had rolled in, wind stripping trees like a hand pulled up the stem of a plant, releasing leaves and small branches and blowing them sideways. Wind like a nearly visible force, wind like a vehicle hurtling down the middle of the street.

By the time I went downstairs, where Roger and Robert sat watching TV, the wind had become manic. We sat in the family room where the shades draw down from the top, the bottom panes covered and watched the debris flying six feet off the ground.

The tree collapsed without a sound, but we saw nothing until the upper halves of the windows filled suddenly and thickly with green leaves. Oh, look, I said, it's the Saltzman's tree coming into our yard. The top ten feet of branches stroked the side of our house almost the way a paint brush does.

In the few minutes before the power flickered, which seemed an inevitability, David called to ask if we were alright. We were fine. The windows were fine. What we could see of the car looked fine. But the tree was there, as though the world had tilted sideways. The downed tree still alive, though uprooted, all 40 or 50 feet of it, live and would remain so until we sawed it apart later.

In the emergency room, not then, but two days later, it was as quiet as I've ever seen it. The medical staff was shooting the breeze. I told Robert that when he was little, his dad and I used to joke about which bays we had not visited. Robert thought that was funny.

The fact of the downed tree was at first startling, then providential as it missed the cantilevered supports that uphold the kids' bedroom on the second floor. Our new deck supported its length and it lay there the way undisputed facts lay down in front of people arguing. People continue to argue, hurling their points up over the angled branches.

We were the talk of the neighborhood. The must-see stop as our neighbors walked through, assessing the damage after the storm. It helps to have a corner lot.

In the emergency room, I told Robert how brave he was. And he was indeed brave, and startlingly mature. As though he were indeed 13 and no longer 3 or 4 or 5. On the promise of feeling better, he allowed needles and catheters to pierce his body without tears and only a handful of stoic faces.

The cat liked it when we put the screens in the windows of the family room because the screens are held in place by little prongs and she found she could dislodge one screen at its corner and walk on the edge of the brick facing that rises just to the lower edge of the windows. In this manner, she could walk through the downed tree and out the other side, then back through the safety of the window. Then perch on the windowsill, sniffing the air and listening to the people, the street sounds, and the bugs. That our walls were permeate fascinated her.

We ate in the open air, on our picnic table on the deck next to the downed tree, while on the other side, our neighbors walked by admiring the precision of its fall, its general length, and its size. At night, a fluorescent camping lantern cast a big circle of light. Outdoors became indoors and indoors out. And we sat with our neighbors on their patio in the fading light, too, until dark and even after.

For two nights, we slept on the family room floor on mattresses, the couch made up with sheets. Otherwise it was too hot. The upstairs sat unused, collecting the heat. Robert's summer programs were cancelled because the buildings in which they were held did not have power. And he had been sick, besides, with a fever the day before the storm. Edith's camp was 45 minutes away, outside the radius of the storm, and Roger went to work. And Robert and I sat at home, while I tried to nurse him in the shadowy daylight of our home.

The heat, the fever, eventually overran my ability to hydrate him. And he began the coughing and the rattling stomach gas and the feeding intolerance. And the second humid morning, after waking with him several times in the night, I did call the pediatric practice so they could tell me what I knew they would which was that I should drive him to Georgetown. Or call an ambulance. But it wasn't that dire. Yet.

The electric company was appearing to tell people that it would be Thursday or Friday before the power was all restored. Or that's what I could figure out by opening abbreviated web pages on my phone, my fingers spreading the words bigger and wider, while the article retreated to the corners of the screen. Just a few words at a time, scrolling by length and height. The phone I kept charging in the car.

One more day for Robert and he would need an ambulance. So I took him myself. I know how this goes, even if I haven't done it for a while. The IV line eventually goes in the foot because the fat pads on the backs of his hands, which is what happens if you don't use your hands, are too thick. And the veins in the crook of his elbow are out because his arms are spastic and he can't lay them flat. So the foot. And the saline solution runs in--a bolus for your foot, I joked. And he smiled.

And he did feel better. And I felt better because this particular time, I knew what the doctors would say and I knew why they ordered the chest and belly x-rays and I knew they would find nothing but they had to check because this is their job. And I didn't mind the two trips down to radiology because we forgot the belly x-ray the first time. So the ER was our one bit of routine business in the midst of a storm and bedding on the floor and the tree down with its leaves splayed up against our siding and blocking the back entrance and the general silence of the house without lights and devices.

Later that afternoon, the power flickered once.

Edith came home and worked on her homework until the light faded and dusk infiltrated the family room. She powered up her laptop, which still had a charge, and the screen was a splotch on the greying air, colors fading. iTunes and she clicked on Build Me Up, Buttercup and turned up the sound. And I told her this was the song I danced to with my first real boyfriend and I showed her how we would dance, twirling her around and making a bridge and then flip of our joined hands and arms. Roger joined us and we linked hands with Robert lying on the couch.

We danced and this was the best thing ever--I need you more than anyone darling, you know that I have from the start--

And then the lights came on. So bright we were blinking and the night faded to black behind the windows. And we shut them. But not right away.

Something about democracy and the public schools

2010-07-11T11:49:00.000-05:00

I was going to write about health care today, but while perusing other special needs blogs, I found my topic: special education and the big to-do about the obviously outrageous amount of taxpayer dollars that are directed toward the apparently undeserving. I have Erika at The Flight of Our Hummingbird to thank for directing my attention to this.

Erika is as shocked as I am. Not, you must understand, at the incredible "waste" of federal, state, and local tax dollars, but at the behavior of our fellow human beings. Having lived through 12 years now of special needs parenting, I am somewhat less shocked than Erika, I confess, but no less upset.

The controversy du jour is the New York Times front page article of June 19, "A Struggle to Educate the Severely Disabled," reported by Sharon Otterman. I originally read the article on the day it was published and felt that Ms. Otterman actually did a fine job reporting the dimensions of the problem of educating a child with multiple disabilities. Extreme educating, as it were. Ms. Otterman's article focuses on a single student, Donovan, and the reactions of his mother, his aides, his teachers, administrators, and so on, to the difficult and humane task of providing him with an education. All of the persons quoted in the article are empathetic to the needs of special education students, none of them feel Donovan shouldn't be educated, and none of them have cost concerns--they differ only in the methods of addressing Donovan's needs.

However, Ms. Otterman would not be a diligent reporter if she didn't bring up the cost context of educating these students: number of students served nationwide, breakdown between students with severe disabilities and the rest of the special ed population, budgets, etc. Although, dear reader, she is not in the least judgmental.

But that didn't stop NYTimes readers from putting on their crazy goggles. You know, the ones with the spirals that sproing out of the lenses. There was screaming in the comments section. There was arm flapping. There were people lying on the ground in hysterics, pounding their fists and kicking their feet. There were people grabbing the public budget bowl and tugging at it, screeching, "MINE!!!!" There were misspellings and grammatical contusions. In fact, if I didn't know better, I'd've thought I was sitting in one of the special ed classrooms these aggrieved readers were floridly describing, rampant and multiplying across the Yoo-nited States of America.

Can you believe it? In this country we're educating people with disabilities? Why aren't they in institutions? They're in our schools??? One gentleman said, well, he'd just euthanize any kid of his who turned out that way rather than provide a drain on the public good. Others apparently said the taxpayers shouldn't pay for this, just the parents 'who chose to bring those kids into this world' (excuse me, I missed the memo? I'm supposed to be punished because I had a disabled kid? but then again, I don't speak fluent Kra-Z).

The disabled are coming! The disabled are coming! screamed these newly patriotic Paul Reveres, and they're going to take away your children's educations!! That's why there's no music education and the gifted students are left to grovel in the mud at the doors of alehouses, begging for pencils!!

Um, no. Yer gifted students and the music teachers are left out in the cold cuz y'all don't want to pay no state and local taxes. The feds are just there to make sure you don't further discriminate against the disabled and minority populations. Oh, yeah, and to lard you with testing mandates. Forgot that for a minute.

This is the culprit sentence from the article, tenth paragraph in, first page of a five web-page article:

There are 132,000 such students in the United States, out of more than 6.5 million now receiving some kind of special education service at an estimated cost of $74 billion a year.

How far do you think most people read before leaving a comment?

Let me parse that for you, because that's a sentence with a lot of information: out of 6.5 million students with IEPs in the public system, there are only 132,000 students with severe (multiple) disabilities. The total cost of special education for all 6.5 million students is $74 billion per year.

This reading is confirmed by the reporter here (that's right, just scroll down to the bottom).

I would here like to raise my hand and say that, of that 6.5 million, most are kids you'd be pressed hard to ID as "different" if you met them at the park. Geez, in some circles, if you say, "special ed," the thought bubbles over people's heads just show an image of someone drooling. Makes me want to just wipe a finger across Robert's drool, touch it to their cheeks and shout, "cooties!"

But back to the Sentence of Outrage. So 132,000 kids like Robert enrolled in the public schools nationwide. In Maryland, where I live, the Montgomery County Public School System (MCPS) enrolls 142,000 students. So approximately one county's worth of students with multiple disabilities are in the U.S. K-12 system.

How many counties are there in the U.S.? 3,140 counties or county-like entities (parishes, etc.), says the U.S. Census. (Although this number may be low, as I think some governors decided to let counties elect on an individual basis not to participate in the census this year, even though it means they won't get any federal funding for their schools.)

So this means that, on the average, each county in the U.S. educates 42 students with severe disabilities. There are 200 schools in the MCPS system. That's 0.21 severely disabled students, or actually, pieces of a student, per school across the entire K-12 spectrum. Put another way, only 20 percent of schools nationwide enroll even a single student with multiple disabilities.

I know that MCPS is a suburban school system, and relatively populous compared to the counties around us. But there are lots of populous counties in the U.S. and lots of other counties that are rural. So let's just bump that figure up to 30 percent of all K-12 schools nationwide enroll at least one student with severe disabilities.

You may say that might represent a burden for a rural school district in Alabama. Well, have I introduced you to my Uncle Sam? He steps in and provides federal tax dollars to help you out with that cost, just to level the playing field. And let me explain something else--the majority of those federal tax dollars come from people in the high-population states that pay the lion's share of taxes to the federal till, like New York and New Jersey.

So, look at it this way--once again, the people of New York City are footing the bill for the education of a poor disabled kid in Alabama. Think of that. Those people are bleeding heart liberals, anyway. And they have the gall to complain about it in the New York Times. Hmmm, if all those readers actually lived in NYC, I guess they'd have a point.

*

I could stop there, but I feel the need to go on. The odd thing is that the comments section is completely focused on cost, but the article isn't. Which just goes to show you that the Zero Sum Game Theory of education is alive and well in Crazyland. You would think the people of the United States were a bunch of Russian peasants muttering into their ragged clothes as the czar rode by pulling a carriage filled with kids in wheelchairs. If kids in wheelchairs are getting anything, that's a sure sign that something's being taken away from Your Kid.

But, again, I digress. The main thread of the article follows the story of Donovan and his mother, who eventually institutionalizes him because she can't work and care for him at the same time. She continues to visit him and play a role in his education, i.e., be a parent. Her concerns are that his educational needs are being made a priority when his behavioral and social and physical therapy needs are getting less attention.

These are valid concerns. But they are the concerns of an individual parent relative to an individual child. I don't walk in those shoes, so who am I to impose my views of education for Robert on Donovan? Although, to address the concerns of the commenters, who all seem to think that institutionalization is cheaper than having a kid go to public school (a whole building built to house 42 students per county? With nurses and therapists as staff? Really? Cheaper?), physical therapy COSTS A LOT and that's probably why Donovan's physical therapy is somewhat limited.

But why shouldn't parents be able to choose the sort of education they'd like for their child with disabilities? Some parents do want to care for their kids at home. Some don't think the public school system is a good fit. Some parents want more life skills, less algebra. And some parents see a spark in their child. Some parents understand that their child will always need an attendant and that child is not going to be able to wash his own face anyway, so why not be exposed to Romeo and Juliet? Why not learn about basic science? Why not give my child something to think about? Why not let my child in the classroom with his peers, creating better behavioral and social models? Don't we make a big deal in this country about people making their own choices? Something about freedom, right?

Let me tell you--way back, some at MCPS were dead set on enrolling Robert at Stephen Knolls School, a de facto institution for severely disabled children and not truly a school. I said no. Robert was and is social and enjoys very much the company of his peers--and they love him for his perseverance. I got a letter once from one of the smartest kids in Robert's class saying that Robert served as a role model for him--Robert always tried, no matter what, and he kept going, no matter what, against the odds and against all circumstances.

When I walked into the door of Stephen Knolls one day, supposedly to pick something up and look around, all I heard was screaming. It was a big school that catered to the lowest common denominator. I walked out and never went back.

If you take any group of people with supposed similarities and lump them together, what you'll get is an intensification, most likely of things you'd rather not have. Put severely disabled children together in a school or an institution without other kids there to demonstrate typical social behavior and you'll just get screaming as there was at Stephen Knolls--what you'd expect of the disabled, right?

But children pay attention to others around them. Put kids into classrooms with aides and they'll learn a lot more from their peers about moderating themselves than they'll ever learn from a school like Stephen Knolls where the expectations are much lower. Will it be perfect? Probably not, but maybe you'll have more people who can be mainstreamed into society after graduation. Institutions, I hate to tell you, are not cheap.

It's the same thing for people with opinions. Put a lot of like-minded people in a room and give them a controversial topic to discuss and soon there'll be screaming and people shouting about getting their guns (or their lawyers, depends on the crowd). Mix it up a little and people are going to watch what they say a bit more. And some people will find common ground and some won't.

That's America. That's democracy.

So much easier to fix

2010-06-30T22:43:00.000-05:00

A week or two ago, a large envelope arrived in the mail. It was white, the corners square as corners are by definition. And a blue and green Cleveland Clinic logo in the upper left corner. The envelope sat for a couple of days on the entry table, not because we were afraid of it, but because we figured it was just paperwork from our recent visit.

A lot of mail gets piled up on the table in the entryway. I'm just not sure what to do with all of it. Nearly every day, business-size envelopes arrive from our insurer bearing explanation of benefits forms. Often they arrive in clusters, two or three at a time. Because this pattern has been part of my life for about 12 years, I let them sit as well. Every three months (oh, ok, sometimes every four months), I open them all up, along with the physicians' and hospital bills, and I sit myself square at a table and put them together like puzzle pieces, matching dates of service and dollar amounts, and sorting out those with no clear explanation. I make my calls all at once to argue or complain. Sometimes, well, often, mistakes manage to sort themselves out on their own.

If I were to open each EOB individually and stare at the various screw-ups as they come in, my blood pressure would send me flying through my own roof.

And, honestly, I don't care. When Robert first became ill, I'd work industriously to sort out all the problems with a feeling of accomplishment at the end. Maybe I thought that eventually they would stop or slow, but they don't. The rectangular envelopes pour in. If I stack them and put rubber bands around them, the piles have the density of bricks--as though I could build something--another house, a fence, I don't know--with them.

Repairs, home repairs, have been in the offing the last couple of weeks. Miss Jeneva, the workers told me, the garage frame is swaying as we take it apart--we want to tie a cable around the post and pull it down with our truck--but the truck might make marks on your lawn--is that OK?

Sure, I said, not knowing what else to say. And the garage, the roof punctured by the feet of snow that fell on it, or by the neighborhood cats who fight in it, the garage fell sideways without much of a crash at all. It fell with its corners preserved, as though it were folded paper or poster board, the garage able to pop back into shape in three dimensions with the right flick of the wrists.

The front stairs have been demolished as well, to be replaced by slate steps with brick risers. This is part of a larger repair to the corner of the front porch, where the gutters always overflow and the ends of the porch boards took water, swelled, and began to rot. This happened over the course of eight years, the massive winter snowfalls melting in and the boards finally buckling and popping.

So much easier to fix a house than a person. Obviously. A bandsaw sliced out the rot, and then made toothmarks along the body of the porch floor, ready to receive new lumber. Paint spread over it all, as though the rot had never been.

Cleaning out the garage released spiders everywhere and one dead mouse. The workers stacked the board so neatly, so parallel in the dumpster that we didn't need a second one--like turning the garage into a set of bricks, demoliion as reconstruction. In its place, we built a deck.

Now everything is new again. Funny how that is.

We opened the envelope from the Cleveland Clinic eventually. In it was a stack of papers, densely printed. Some of it was paperwork from our recent visit. Some of it contained tsst results. Not all of them, just the initial set, the first back.

I didn't know what to do with them. We shuffled and re-shuffled the papers, and tapped their corners together. Most of them were normal or negative, which is our typical pattern. A couple of them hinted at abnormal results. But I can't build anything with them--I'm still waiting for the mtDNA tests to come back. And, despite the recent excitement about the possibility of answers, these tests always come back normal or negative for us. Which to hope for: answers I may not want or tne end of another paper trail, the white squares and rectangles like stepping stones behind us that suddenly stop ahead.

So we are in a holding pattern--the garage down, but not yet carted away. The front porch boards gone, but not yet toothed in with fresh lumber.

Corners are an illusion of stability, clean and clear and sharp and one-dimensional. When I have a bigger stack, I'll know if I'm tearing down or building up.

Ohio

2010-06-05T08:14:00.003-05:00

Ohio has the greatest number of cities of any state in the east that just about anyone can name--or at least that's what I told the guy at the Rock and Roll Hall of Fame when we were trading information about where we were from. Cleveland's not so bad, he said, regardless of what the media would tell you.

C'mon, name them: Cleveland, Toledo, Akron, Cincinnati, Youngstown, Columbus, Dayton, Canton. I've just never been there. But I know these cities because they're part of the national consciousness, from movies and TV shows to contested elections. Ohio cities, always hovering just at the margins of the subconscious.

Entering Ohio from Pennsylvania, the Penn Turnpike conveniently renames itself the Ohio Turnpike, as though nothing has changed but a name. Of course, everything changes. I-76 through Pennsylvania is winding roads through rolling hills, and at the Ohio border, the highway spreads out to eight lanes and disappears into the distance for miles, with hardly an exit to be found, as though making the decision to enter Ohio were a commitment of sorts, irrevocable. You will go to Ohio.

The land flattens out, like it's got nothing to hide. And the trees and the green of the lush grass that lie in ribbons between highways and malls and billboards are a reminder of how beautiful the Ohio Valley was said to be by those who first explored it.

I agreed with the guy at the Hall of Fame. Cleveland is a lovely city. It has the neatest urban decay I've ever seen. Up and down Euclid Avenue, abandoned lots are neatly graded, unused buildings tidily boarded up. And interspersed with these signs of the country's long decline in manufacturing are thriving, nicely maintained businesses. And as you approach downtown, the place gets uniform with commerce and it feels like every downtown America you've ever been in.

The Cleveland Clinic is a very tidy place. The main entrance is large and modern, with a water sculpture out front in the open air: giant concentric circles of glass or some other translucent material seated on a bed of rocks, water pushed up the sides of the circles to create a placid level surface. A little like eternity--here, we will be undisturbed.

All the signs point in the right directions and everything is clearly marked. But should you wish to ask, personnel are posted everywhere in the main lobby, which is as big as an airport terminal.

The only sign of normalcy was that Dr. Cohen was running late. Everywhere, doctors are the same.

We told The Story when asked. About Robert's breakdown and decline at the age of one, about traveling in Canada, about the long hospitalizations at Georgetown. About Robert's strange sweats, his fluctuating motor abilities that so confused the therapists, the periods of improvement, the long, gentle periods of what we could see as decline only in the rearview mirror. The loss of balance--first gone and always gone.

I was ready for it, the new and strange already become familiar--as though I'd already been to Ohio in my sleep, come and gone. I was ready for it when he said, Leigh's Syndrome. Robert has the classic MRI pattern and the clinical presentation. I know this because I have a computer and a wireless modem and with the right cues, I can find things through Google.

As it turns out, many roads lead to Leigh Syndrome. Or they do now and they all converge at the Ohio border. Robert was tested for this in 1998. But Dr. Wong at Georgetown, who had developed the gold standard mito panel analysis, knew of only one or two gene defects that resulted in Leigh's. Robert didn't have them. And despite the multiple blood draws, the monitoring of the carnitine and pyruvate levels, the attempts to catch lactic acidosis at work at different times of the day ("that's how we tested for mitochondrial disease back in 1998," said Dr. Cohen), the net closed on nothing.

Dr. Wong is now at Baylor University, and she still has the market cornered on mitochondrial analysis. Only now she knows of 26 gene defects that lead to Leigh's. Her lab will analyze Robert's blood again, it will just be a longer drive or flight for those rubber-stopped vials filled with his red-purply fluid. And we will do a DNA analysis with microarray (also unavailable in 1998) and, well, other stuff. Eighteen tests in all. I find it fortuitous that we have already reached our family deductible for the year.

And if this plan fails at findings, apparently there can be another plan. I like plans. My parents were commenting on how well I seem to have turned out--I suggested it was the military influence from my dad's training. As I said, I like plans.

Although my own inclination is to wait and see whether or not there's an mtDNA or nDNA finding, I noticed on some of the papers we were handed, that following the colon that follows the category title that says, "diagnosis," the words "Leigh syndrome" appeared. With a diagnostic code number. How nice to be indexed in a book or like a road map. The only note of caution is this sentence in the assessment summary: "Biotin responsive illnesses suggest a carboxylase deficiency and pyruvate carboxylase is part of the Leigh syndrome spectrum, although there has not been any evidence of profound hypoglycemia." I don't fully understand that, but I suppose I will eventually.

Children with Leigh syndrome tend to be cognitively normal, while the syndrome manifests itself as a global movement disorder. That Robert can follow, enjoy, and understand the profundities of tweenie TV shows like iCarly is, apparently, evidence of normal or near-normal intelligence. This, too, felt like a return to a place I know that I have never been. Robert's physical appearance can be read as a sign of cognitive delay. But I always felt the signifier did not match the signified, and yet people would try to draw them together. Lacking authority, I sought to confuse my adversaries by casting doubt on their assumptions. And they cast doubt on mine. And now I have finally visited Cleveland and can say I have been there when asked.

After the appointment, after the blood draw, we drove to the Rock and Roll Hall of Fame and we did what you do at the giant glass pyramid: listened to music and gawked at famous cars and outrageous stage costumes.

Then we walked down to the shores of Lake Erie--an inland sea across which the other side cannot be seen. Just like the ocean, the wind whipped our hair and the sunlight glanced off the waves into our eyes. No ships in sight. Just the water, rocked and disturbed.

When Washington marched his troops into the wilderness of the Ohio Valley in the 1750s, his men nearly starved to death. The long column scared off the game, and although the streams were teeming with fish, that was considered inedible animal feed. So they almost died for want of what was found in Ohio. Not us.

The world where you stand

2010-05-30T22:06:00.003-05:00

Having reached that point in preparation for travel at which I am looking ahead at the day before the trip and panicking about the amount of work that needs to be done, I thought back on a passage from Moby Dick I'd just read.

Ishmael is preparing to sign on board the Pequod. Captain Peleg, the ship's owner, challenges Ishmael's rationale for setting to sea on a whaler, that he wants to see the world, saying, "Well then, just step forward there, and take a peep over the weather-bow, and then back to me and tell me what ye see there."

So Ishmael, taking him quite literally, does so:

Going forward and glancing over the weather bow, I perceived that the ship swinging to her anchor with the flood-tide, was now obliquely pointing towards the open ocean. The prospect was unlimited, but exceedingly monotonous and forbidding; not the slightest variety that I could see.

"Well, what's the report?" said Peleg when I came back; "what did ye see?"

"Not much," I replied--"nothing but water; considerable horizon though, and there's a squall coming up, I think."

"Well, what does thou think then of seeing the world? Do ye wish to go round Cape Horn to see any more of it, eh? Can't ye see the world where you stand?"

Good point.

It makes me wonder why I want to push off and go to Cleveland to begin with. We get comfortable here on land with everything just where we know it is.

Packing for such a trip is, in itself, a form of disruption. Suitcases out, selections made from among other things. The terror of failing to pack even one essential piece of Robert's gear. Let me think, all of the things I can't buy at CVS or a grocery store along the way: the specialized formula that is his source of food (pack extra in case we are delayed a day), his extension tubing, the enteral feeding pump, syringes of various sorts for medication and feeding, personal care items in medical grade sizes, his bottle of Sinemet, his Prevacid, the special bag sets for the pump!

And there must be something else, because you know there's always something that is forgotten on a trip. Right--the spare Mic-Key button is the one thing I often forget to pack. Which could, just could be the most critical if forgotten. If his button were to become dislodged, the stomach heals in about 4 hours. No replacement button means a trip to an emergency room to have a Foley catheter inserted to keep the hole in his stomach open until we get home. Done that.

And the trip itself.

I have built up this trip so much in my mind over the last couple of months. I spent an hour on the appointments line in February--when the intake person asked me what symptoms Robert had been having and why we felt we needed to make the appointment. So I told her. I think she might have asked me when I first noticed the symptoms, which, of course, was 12 years ago.

Then I assembled as much of his neurological medical records as I could get my hands on. A review of the whole 12 years.

Having thoroughly reviewed the whole dire mess and revisited all of my anxiety points with the various specialists we consulted, I then went online and read nearly every frame and screen of the United Mitochondrial Disease Foundation website. To find myself nearly saying out loud, that's us! that's Robert! those are his symptoms! iron intolerance? I had a bizarre and frightening spike in my blood iron level when I was pregnant with him!

It was that sensation of finding the last few pieces of the puzzle that look like they belong in the one you are assembling. Accompanied by the equally powerful realization that these pieces of sky and water and grass might easily belong to another puzzle and not yours, regardless of their apparent visual similarities.

It was, however, terrifying, like seeing on TV the aftermath of a storm that hit a place where I have been. And wondering how I might have felt had the wreckage actually been mine.

And the knowledge that, here we are, off to see the world, but when we get there, it may look an awful lot like the place we're in now. Which is to say, there may be yet and still no answers. Dr. Cohen might say, you know, it does look like mito disease, but there's no way for us to be certain. Because I've been to that place before as well--looking out at the Atlantic encircling the ship I'm on, looking out in a 360 degree circle at nothing but water. A circular horizon. The hermeneutic circle of diagnosis of exclusion.

And yet, I signed on for this trip because I had a restless feeling, just like Ishmael, that drove me on.

This trip might yield nothing. But if I look to the horizon, just over the edge, there's a squall forming alright. Do we want to be in it or not?

Poets and Mommies

2010-05-18T11:49:00.004-05:00

Needing to write today about something other than Robert and the increasing darkness of his medical problems, I may just write about poetry. It may be you will say that I have built a straw man and lit him on fire, but so be it.

Over the last several months, I've noticed three particular commentaries on poetry that stick with me, all of them in influential and widely-read places. They may well have little in common, but the collection area in my brain labeled, "thoughts about poetry with which I disagree," has lumped them together.

The first is from Terrance Hayes' essay in the most recent American Poet, "Notes in a Sentimental Mood." Hayes begins his essay by describing how taken aback he was to receive a hand-made card from his young daughter with sentiments so beautiful they made him weep--but it turned out that his daughter had copied them from a website, which made him feel tricked. Hayes then says about sentimentality:

When I'm feeling generous, I believe sentimentality is rooted to basic and forthright feeling. I know there is a broad category rooted to emotional laziness of the sort Oscar Wilde describes in a letter to Lord Alfred Douglas: 'The fact is that you were and are a typical sentimentalist. For a sentimentalist is simply one who desires to have the luxury of an emotion without paying for it.'

Hayes' essay is intelligent and thought-provoking, don't misunderstand me. He is also a poet I respect. It's this grudge against sentiment, against feeling expressed in the phrase, "when I'm feeling generous," that raises my hackles. It speaks to a fear of expressing emotion, if you ask me. And why?

Hayes doesn't really explain that--he moves deftly through a lyric/impressionistic piece of lit crit, exploring the pros and cons of expressing or deflecting emotion. Much of his discussion finds a fulcrum in locating 'comfort level.' I thought, reading it, that he might make a surprising turn (what I would find surprising) toward acknowledging that feeling itself is important to poetry and literature. Instead, he ends here:

In the house of sentimentality, there is a room where the shades of Happiness (euphoria, joy, contentment, for example) blur and a room where the myriad shades of Sadness (grief, depression, melancholy, etc.) blur. There is a room for Anger, maybe for Nostalgia. I'm not proposing the house and its rooms be demolished. I am in the corridor of uncertainty between those rooms. I admit a bit of envy for anyone sure enough of how he or she feels to enter the appropriate room and be comforted. I admit a bit of suspicion toward anyone who is sure of how he or she feels about anything.

I think when I read this, I said, out loud, what a cop out. He's not proposing those rooms be demolished, but none of the cool people are going to walk in and talk to anyone in them. They're going to hang out in the corridor making comments on the people who walk into them. Note, too, how the issue of 'comfort'--that feelings, that literature might involve finding comfort--is connected by apposition and proximity to the final sentence that foregrounds 'suspicion.'

Next, was David Orr's mostly smashingly good essay on Robert Hass' poetry in last week's NYTBR. Orr's assessment of Hass' career and development (and Orr rightly questions what development means with regard to a poet and 'career') was, I thought, spot on. But, yet, at the end, Orr compares two poems from Praise (I agree with Orr, Hass' finest book), "Heroic Simile" and "Meditation from Lagunitas":

The poem ["Heroic Simile"] concludes, simply, “There are limits to imagination.” “Heroic Simile” is, then, a poem of imaginative empathy intended to show that however much we may understand the world outside ourselves, we must always return, as Hass puts it, to “separate fidelities.” It’s not a consoling thought, perhaps, but it’s a true one.
Hass’s later work, though, has been reluctant to embrace this kind of truth. Sometimes empathy bleeds over into self-regard (“What is to be done with our species?”); other times it congeals into a buttery sentimentality (“I want to end this poem singing”). Both outcomes are, of course, the result of wanting boundaries to blur, rather than recognizing them as necessary restrictions. “Meditation at Lagunitas,” which directly follows “Heroic Simile” and is Hass’s most famous poem, begins in the same dry mode as its predecessor: “All the new thinking is about loss. / In this it resembles all the old thinking.” But the poem ends in an altogether damper place.

Orr then quotes the end of "Meditation at Lagunitas" and concludes: "One might say that the problem with Hass’s career is that as he’s gotten older, his poems have been more willing to say “blackberry, blackberry, blackberry” than to declare, “There are limits to imagination.”

The pedantic and even dictatorial turn with aesthetic judgement is what bothers me here: poems are legitimate when empathy precludes feeling and warmth. Orr earlier defines "empathy" as involving the intimate understanding of other points of view, but without necessarily implying pity or kindness.

My blogger reaction to this is, WTF? My more considered reaction to this is that "Meditation at Lagunitas" is one of my favorite poems. I read Praise for the first time in 1985, only six years after it was originally published in 1979. "Meditation" is widely anthologized and widely read because people like it. It has an audience. The poem makes people feel. It invites people to feel. Why is that bad? Every time I read it, I always block out those ridiculous "dry" lines with which it begins. I think Hass should have left them off. Maybe.

In Orr's poetic universe, poetry is legitimate when there are boundaries, lines, "restrictions." Fences and walls to hold back emotion, I suppose. Pity and kindness are to be politely shunned. Not our type, my dear.

Finally, there is David Shields' review of Ander Monson's Vanishing Point: Not a Memoir, also in the NYTRB. I've finished reading Shield's Reality Hunger, and Have been knocked out by its intelligent defense of, in short-hand, the mash-up, and its willingness to attack genre barriers. I think it's an incredibly cool book and feel no need to get all down and intelligensia about it to tell you exactly why.

Shields' review concludes by saying this:

Monson posits and furnishes a “post-postmodern world” that is “starting to secede away from memoir, from the illusion of representation. . . . Let’s make rules so we can follow them and then so we can break through them. By breaking through them we may start to feel alive again.” For Monson and for us, that’s the crux: he’s trying to make himself, make us, feel something, feel anything, do whatever he can to vanquish the numbness that is a result of enforcing “order, decorum,” ceremony, formula, expectation, genre-prison.

Fine. Attachment to strict rules and order, whether or not fulfilling genre expectations is always that, may indeed create a kind of cultural numbness, or an aesthetic numbness on the part of the artist. But I don't see how this connects to feeling. In fact, in the paragraph above this, Shields writes: "He wants writing to be equal to the chaos and contradiction of the cultural wiki we all contribute and subscribe to, and to be equal as well to the nothingness of nonexistence to which we all are destined."

Nothing makes me feel more numb than contemplating not being alive. That is, not existing. It strikes me that Shields' "being alive" has nothing to do with actually feeling anything, and everything to do with rebellion. Which is fine. I'm all for male posturing and male rebellion. Viva Shelley and Lord Byron!

What I'm saying, and sorry to offend men out there, but is this a guy thing? All of this, all of the above? A guy thing disguised as sober aesthetic pondering, pomp and circumstance? I mean, the majority (note I said "majority" and not "all") of men I've known would rather hit themselves repeatedly in the head with a hammer than talk about what they're "feeling," especially if it involves telling any of that to a girl.

So, if this is all just a guy thing, what's my problem? Well, for starters, I feel, in the back of my mind, always a sense of being bullied when I sit down to write poetry, especially. Can't make anything too emotional, now. Can't risk having the reader feel anything. And it's because of guys like Hayes and Orr and Shields and let's just go on and on.

I mean, this is not new stuff. Periodically in the history of literature, teams of opposing aesthetes sit down and strafe each other with accusations of girlishness. Thomas Sprat says of Abraham Cowley (1667): "But these Admirers of gentleness without sinews should know that different Arguments must have different Colours of Speech: that there is a kind of variety of Sexes in Poetry as well as in Mankind: that as the peculiar excellence of the Feminine Kind is smoothnesse and beauty, so strength is the chief praise of the Masculine." And Ben Jonson (1640): "as if that style were more strong and manly, that struck the ear with a kind of unevenness . . . Others there are, that have no composition at all; but a kind of tuning, and rhyming fall, in what they write. It runs and slides, and only makes a sound. Women's poets they are called: as you have women's tailors." Nice to have the dissertation handy.

And let me go further--sitting down to write about my son, I find myself in waters difficult to navigate--this is emotional stuff. How do I handle that? Especially when I speak in the voice of a mother? Mothers and what they are supposed to say and be like are among the most stereotyped beasts in the artistic world. Too reserved and you're cold and how could that bitch treat her kids like that? Too warm, too true to your feelings and you're an embarrassment, ridiculous, mocked. But when a guy opens up about his dad-hood feelings, people clap.

True enough. Expressing emotion in art is something like expressing emotion in public. What's appropriate? But shouldn't art take emotional risks? Shouldn't we risk being emotional "in public"? Is it wrong to invite your reader to feel?

Sometimes I think that guys like Orr and Hayes and Shields are saying, yes, yes, it is wrong to invite your reader to feel. That's the worst possible thing you could do. And I have to say that these apparent external injunctions ring in my ears precisely because of what I experience in my lived life with Robert.

We live in a culture in which empathy itself is under attack--from politicians and talk radio types pontificating that empathy is contemptuous and dangerous to a handful of jerks commenting on the Red Sox' Facebook feed. Yes--Curt Schilling and his wife have an autistic child. She's recently written a book about it and their struggles. The Red Sox Facebook page posted a status update and link about it--while many people commended the Schillings, just as many (and remember, these are all fans of the team) criticized them for "whining." One memorable post that can be repeated here was: "Boo frigging hoo." The writer went on to announce that everyone has problems and who are the Schillings to even talk about theirs? Why should anyone care?

I find this attitude a lot when I bother to read comment streams that follow articles about disability and children. It's disturbing. When the Washington Post printed an article defending the use of the word "r*tard," people were scabrous in defense of the article, mostly demanding their freedom of speech as though MacDonald's had decided to stop handing out hamburgers to people with money to pay for them. The Special Olympics, posting about the same article, included a comment stream in which one person noted, sure, have your freedom of speech, fine, it's a right--but where is the duty toward empathy and compassion in our society? Why are people not expected to show that and be considerate?

Look. I know it's a stretch. No one pays much attention to poetry or to art in the U.S. But, still, isn't it a little freakish that a lot of influential people writing about poetry value emotional coldness and distance and speak of empathy, pity, and kindness with suspicion and disdain?

Mitoland

2010-05-11T10:16:00.004-05:00

I've been silent lately on this blog. For weeks at a time. Explanation: another medical roller coaster ride has begun. This one started around the time the snow fell in DC, that is, in February, and the cart has been picking up speed ever since.

I've also been working on a big, extended-play writing project, which sucks up my energy for brief lyric meditation. And continuing, in my usual hit or miss, do-I-really-have-the-time-for-this, disorganized fashion to send out poems. Poetry manuscript--nope, not happy with it again--ever the fickle relationship. I don't even remember where I've sent stuff most of the time. This is not good.

Oh, yeah. There's my actual job at my actual office. Right. Yes. Money.

And baseball season started.

But the medical roller coaster. That's the relevant part. And I'm feeling a little dizzy, I've got to say.

We had a disagreement with Robert's neurologists back in January or February. I forget exactly when because it happened in virtual space/time, which is to say, by email. The problem with neurologists is that they are narrowly focused. The good thing about neurologists is that they are narrowly focused. So, take your pick.

This time it was the bad thing. There's been a suspicion that Robert has a mitochondrial disease or component for a while now. Say, a year or more. Doctor's apparent perspective: that's an interesting thought, maybe we should consult with someone. My perspective: a clue! a clue! let's do something about this!

It might be more accurate to say that I started to see this as though I had discovered the missing link. Response from doctor: perplexity at my attitude.

I've been at this for 12 frigging years. Diagnosis, that is. We go through cycles: fear, discovery/tests, more fear, drug trial, apparent stabilization of symptoms, apathy, mystery symptoms, consultation, new doctor, back to fear. For a long time, it was easy to live without a diagnosis because the alternatives were too horrifying to contemplate. Yes, I'm talking to you, Kurtz.

I learned to live with it. Adapt. Ignore questions. Stonewall teachers. Think outside the box. Live outside the box. There were always questions from other people, and, frankly, I had no answers. Most of the time, this is fine; there's a steady state. But a few weeks ago, I lost it when the school nurse called me and described some movements Robert was making that she had never seen before. And she's looking to me for answers? How the hell do I know? I would ask one of our doctors, but they wouldn't know either.

When I filled out a long, general intake form for the Cleveland Clinic last week, one of the questions was, "What do you think is the matter with your child?" I wrote, "If I knew, I wouldn't be coming to see you."

Why are we going to the Cleveland Clinic? Because apparently that's what's next. These events kind of present themselves to me. I don't go in search of them. We tried that. It didn't work. Because if you don't know what's wrong, it's hard to google it.

I could try to understand organic chemistry, neuroscience, intermediary metabolism, in which all the words seems to end in -ate and -ase, but I doubt it would do me much good. I'm not going to understand it because it takes years of training. Money and schooling, too.

Which leaves me, I know, at a disadvantage with Robert's doctors. Until they get to the place where they don't have anything more to add (because they don't know), but they don't want to tell me. Then they just want me to bring Robert back in a year. And then, sometimes, I blow up. Because being blown off is something I understand.

Once, early on, Robert saw a neurologist who understood that no one does any favors for a patient by continuing to see him when a doctor's best resources have been exhausted. That was Dr. Crawford. And the answer to that dilemma is a referral.

And I called Dr. Crawford when I got blown off by Robert's neurologists at Kennedy Krieger. We hadn't seen him in seven years. But he reviewed the latest reports of Robert's medical file, called me, and we chatted. He can't help. As he would say about so much else upfront--he's not an intermediary metabolism guy. And neither, he noted, is the neurologist we'd been seeing at Kennedy Krieger. He'd recommend we go to one of two people: Dr. Cohen at the Cleveland Clinic or a guy at Vanderbilt whose name I have written down somewhere.

To be fair, the KKI doc did give us the appointments line for the Cleveland Clinic and tell us we might want to see Dr. Cohen. Not a referral, I might add, not an offer of assistance with records, introduction of the case. But the referral happened only after I got upset.

The kernel of the problem is that she started Robert on biotin, which made dramatic improvements in his g/i problems and ameliorated some of his neurologic symptoms. Then she had us try a generic metabolic cocktail. Which made him rigid. So we stopped the cocktail, but not the biotin. Which she agreed we should increase, and, earlier, linked dose to weight. And Robert has been gaining weight this year like crazy.

AND THEN (yes, this is bitch day on the blog) she wouldn't write a prescription for the biotin, which we were convinced was helping multiple systems and was essential. Because she thought it inadequately transformative. She wouldn't HEAR us when we said that this was, apparently, a multi-system problem. We didn't fully understand that until he started taking biotin. She thought we should talk to Robert's gastroenterologist. Which is really the whole problem: medicine tends to be a set of stove pipe systems. And when someone doesn't have a diagnosis, it's not helpful to be bounced back and forth between specialists, each of whom thinks the problem really isn't theirs to begin with.

And we were spending over $200 per month buying the biotin in bulk from GNC when our insurance will pay for compounded vitamins if they're prescribed. But she didn't know whether compounded biotin would be viable. We asked her to check with someone. As far as I know, that didn't happen.

And that's when we got the 'come back in a year' thing and then a comment in the clinic note that we could keep giving him biotin if we wanted, but she didn't think it was helping. After noting in previous clinic notes that it was. And then the blow up via email. And then the name and number.

No one gets me this close to a possible answer and then decides they can't really make lunch after all.

In the end, of course, this has been profitable. They didn't mention it to us at KKI, but one test done there came back showing a problem with the metabolism of medium chain triglycerides. The MRI we had done was interpreted, correctly, as basal ganglia disease. And we emerged, beaten up a bit, but with a referral.

What have I been doing since making the appointment with Dr. Cohen back in February or thereabouts? I've been gathering medical records (Roger, too). I've been talking to other doctors, including Robert's primary care physician. I've been to Georgetown to hear Dr. Cohen give a visiting lecture on mitochondrial illness, which was subtitled, 'the next frontier.' And I've been remembering. Remembering what Robert was like early on, what his symptoms were, how they presented.

And then funneling all of that into energetic web surfing. Because now I have a phrase: mitochondrial disease.

These were the constellation of ailments we most feared when Robert became ill. The ones with no hope. But that was 12 years ago. Medicine is catching up to Robert and not the other way around.

What have I learned? That mitochondria are the energy production components of cells, and they float about in varying numbers in the cytoplasm--brain cells need the most energy, so are most dense in mitochondria, for example. Our mitochondria are inherited from our mothers and have their own DNA (mtDNA), but factors in the DNA in the cell nucleus (nDNA), which receives contributions from both mother and father, also affect the mitochondria. Maternal inheritance mitochondria disease represents less than 20% of affected persons. That mothers are responsible is a mitochondrial myth.

That mitochondrial disease affects multiple organ systems, even and especially the digestive tract and digestive nerves. Robert's eyes are also affected, one pupil larger than the other, but the cause of this is unknown. The brain and nerves, the gut, the eyes, the heart are the key sites. Robert has a lot of coughing, and I really hope that's not about his heart.

"Red flag" symptoms of mitochondrial disease include (per Robert): basal ganglia disease, encephalopathy, myoclonus, ataxia, neurodegeneration, ophthalmoplegia, severe g/i dysmotility, unexplained hypotonia, unexplained failure to thrive. And those are the elements we know--what don't we know about yet?

"Associated symptoms" include: short stature, chronic or cyclic vomiting.

There is a high false negative rate in mitochondrial testing. All of Robert's early tests, even with the suspicion of mitochondrial disease, were negative or normal.

The next question might be, how do I feel about this? I don't know how to feel. For starters, I have to go to this appointment on June 2nd to find out if this is, indeed it. But I won't know on June 2. I can expect more tests, more contemplation, more assessment. Maybe by the end of the summer?

So, at the level of hypothesis, I feel--or I have felt confused, regretful, worried, frightened in the last few months. Part of me wonders if we've taken any of the right steps with diagnosis with Robert--although we've been to all the best places. And the pace of medicine over 12 years--well, what they knew then is a fraction of what they know now. We are, none of us, static entities. We each have out our thumbs, hitching rides in the comet streams of the universe.

How could something have been caught for which there was no awareness at the time? He tested negative for all the known mitochondrial disorders. Then. And he appeared stable for long periods of time. Did you know that mitochondrial illness can stabilize for years at a time? I didn't. When he was stable, it looked like something else.

Where Robert is, where I am, diagnosis is not simple. Not a matter of ticking off a checklist and prescribing a medication. There's all this paper. All these tests. All these books to consult. Which is why Dr. Crawford always says to look at the big picture. To use an aphorism--sometimes you can't see the forest for the trees. Sometimes, when you set out exploring, you find trees and paths you didn't know existed. Sometimes you lose your way. Sometimes you find the clearing with the warm sunspot in the middle. But you never really know where you are until you meet a stranger who can tell you.

Or, we understand the unknown through comparison with facets of the known. The unknown is a mirror of our hopes, our fears, our expertise, our presuppositions. In this I am the same as any physician. You could say that diagnosis is the search for the right mirror. The one that finally tells you that Snow White is indeed the fairest of them all. The mirror that tells you the truth.

I would ask if it were my fault, but there's no answer for that. If I want to blame myself, I suppose I can. But that changes nothing. Maybe I'm in Mitoland. Maybe I'm not. Maybe I'll have to keep living with uncertainty. Maybe I won't. Maybe treatments. Maybe not.

The book that was popular when I was pregnant with Robert was What to Expect When You're Expecting.

I've gotten used to the idea that each advancing minute, each piece of the day or week, is like the moment of realization when you reach for the stair tread and it isn't there. The stair tread is expectation, and, for me, it isn't there.

Glimpses of the whale, or synecdoche

2010-04-27T09:05:00.004-05:00

The dude's name is Ishmael, my daughter says after reading the opening paragraphs of Moby Dick. Indeed. That would be the take-away: identity as anchor and what it feels like to lift anchor, to want to lift anchor and sail off.

Ishmael, feeling his 'hypos' get the better of him--as we told E., look to the Greek roots, hypotonic is low tone, hypertonic is high tone--accounts it high time to get to sea as soon as he can. Those hypos can drag you right down, down to the bottom of the ocean floor, and the solution is to be afloat the problems of this world.

Honestly, I don't quite remember all the particulars of Ahab's obsession with the whale (which is why I'm reading the book again, so, dear reader, don't surprise me)--something about revenge, something about metaphysics. But it did make me wonder if I were finally getting obsessed about finding a diagnosis for Robert. Because, gosh, well, I wasn't for years and years. Diagnosis was something to be feared then. Absence of such kept us all afloat.

The whale, of course, is too big to be seen all at once--the back, the tail, the tips of the flukes, the blow-hole, the crest of the head--each of these parts surfaces and slip-slides away back into the sea before the mind gets a fix on the glimpse. The whale itself may be simply a hypothesis. A synecdoche of illness. Symptoms and lab results are just synecdoche, right? A glimpse of the whale.

While the whale looms under the vasty deep, far below the surface of consciousness, it recedes its dangers from each present moment. The sea is calm, shimmering slightly in subtle winds that cross above it.

We, too, are now at sea, an expression I often use. Out of sight of land, the cusp of the watery world pouring itself out of sight over the edge of the horizon. To be at sea is to be alone, not comfortably isolated in a niche, but alone as a small speck on the consciousness of an even larger, anonymous present moment. It's quiet out here and, once you're used to it, sometimes the sameness of the waves as they drift away is even comforting.

But whaling, like sailing generally, is a matter of long periods of languid boredom punctuated by episodes of intense fear. The harpooneer must approach the whale dangerously close. The harpoon sticks in a piece of the flesh and the whale drags with it the boat for miles--first the line whips out of its coil like a lash, and then the small craft is launched like a speed boat. If the whale sounds, the crew goes straight down with it.

Sighting the whole whale is a sign of doom. The whole, unimaginable, rushing out of the water toward you in a split second. The whole suddenly in place of its parts--(in)visible in its own way, the way what you can only imagine can never really be seen. The brain shuts down when it contemplates eternity.

Dreadful, awful, terrible--these blunted words are used as polite social descriptions for what is most feared or indescribable, these words like salad forks and butter knives at the place settings of ordinary lives as the tales are told over dinner to an audience periodically patting its mouth with a napkin.

Awe, dread, terror--when what they mean or mark or indicate is a human truth so few of us actually confront that to see it is to live inside the echo. To know the thing and not its representation. To know the thing just beyond the edge of imagining that cannot make itself known or visible by its small signs.

You think you know because you have seen it depicted. But do you know it if you can walk away? Does Ishmael really know this dread and terror after all, if he was not swallowed by it? He was able to separate from it and walk away--"and I only am escaped alone to tell thee."

I was the only witness to Robert's breakdown that day in July 1998. No matter how many times I write out the story of what happened, no matter how many times I give the case history, it is all just glimpses and fragments. And the doctors just politely nod.

Montana Sky

2010-04-09T12:02:00.002-05:00

Edith has developed her first attachment to a pop song-- "Love Story," by Taylor Swift, of "she wears high heels, I wear sneakers" fame. If it's on the radio (and it's on the radio all the time), we have to turn it up. Edith only wears sneakers. She doesn't care about her hair as long as it can stay long. But she now likes her toenails painted red, with flowers.

I approve. If I didn't, what could I really do? But Ms. Swift has the pre-teen market hooked with these clean little ballads--"Love Story" uses the trope of Romeo and Juliet to drive the emotional dynamics of the song, although the music video is a little confused, somehow blending R + J with Pride and Prejudice. But then again, Romeo and Juliet commit suicide, while Darcy and Elizabeth live happily ever after.

And, really, how can I object to my 10-year-old's fascination with a song whose video's most compromised moment shows, very briefly and only once, Ms. Swift plucking a Queen Anne cherry (yes, the yellow ones with the pink blush) from a green bough. The lovers in the video are never shown kissing, however much it's heavily implied that they do.

Yup, the song has all the motifs of soft-focus romantic love down: we were both young when I first saw you, I close my eyes and the flashback starts, I'm standing there on balcony of summer air . . . Romeo take me somewhere we can be alone . . . Romeo save me

Yes, all this, along with a hard-driving rock-country upbeat tempo, as though all things are possible, as though girls were in charge of their own hearts.

When kids are little, all the moms remark that the boys are always drawn to the trucks. Which is generally true. But what's with girls and those little balloons of hopeful love that rise inside, unseen, swelling their little hearts before even a simple understanding of what love is really like? The expectation, the expectation. The waiting. Antici------pation.

It can't just be the modern media instilling this in my sweet Edith's head, because Juliet and Elizabeth Bennett surely felt that balloon rise inside the chest, that lift. Or, rather, Juliet and Elizabeth were the Taylor Swifts of their day--early modern and 18th century tweenie girls hearing their stories and saying, oh, mommy, isn't that romantic? Play it again.

So Edith will soon start to talk about the boys she's already thinking of, figure out how to kiss one of those strange gazelles who shy away at the slightest provocation, always ready to bolt. Well, maybe in a few years. And then, once she's got that figured out, on to all the mysteries of the other sex. Or maybe not, maybe the same sex. Who knows? We'll just have to wait and see how the story goes.

But, if it's boys in the end, then she and I will have something in common. I have to say, much as I might not want to admit it, that I find the song a little compelling. Just a little.

What can I say? I'm one of those people who doesn't want to let go of those charged moments from the past. All those little pieces of being alive should be ever-present in the psyche, I think. A kind of depth ensues into which I can escape in all the worst moments life brings. Lights brighten up my spine, that's the way it feels. Each of us composed of all those fractured moments of our lives, never just a static person floating in the pool of the present.

After the modernists, these dopey moments when love presents itself are supposed to be ironized, caricatured, devalued. But isn't it some kind of miracle to see whatever love really is suddenly appear, unfettered? Those moments when you recognize there's nothing to do but just grab hold--even if it's not for long? And, still, the mature realization that these moments are just that, moments, like light flashes in the dark, is nothing to dismiss, nothing to regret.

I find this to be as emotionally true as irony or disappointment or anger or regret--those supposedly more complex emotional valences. And, always, girls are dismissed for saying it.

That's why this blog has a photo of the Montana sky at the top--the Rockies from the eastern side. The side of my first approach. I wrote a poem about it (here) that I still like, even if it is macerated in a bit of sentimentality.

I once read, somewhere, about the way Willa Cather experienced the vast skies of the prairies and the mountain west--that the experience was breathless--her first experience with an unparalleled personal freedom. And elsewhere I read that this experience of the Western sky is more powerful for women than for men.

That's what that first real kiss is, whether it comes first or fifteenth in line, a flash of light in which everything truly is illuminated--possibility, personal freedom, that first sight of the self from the other side of the mountain range, you know, the ones you're always headed toward. It's not ever really about the boy. Even if he did, truly, make your knees weak.

Radicalism of our time

2010-04-02T09:56:00.003-05:00

When Robert was very young, we were given a used side-ramp van--a Dodge Caravan, cavernous, with a dropped floor, raised rear tires, that would 'kneel' when I flipped a switch by the steering wheel. With a whoosh, air would rush out of the cylinders that provided the van's suspension, the back would gently lower, and a large steel ramp would unfold from the side and settle to the ground.

The floor of the van was a knobbly plastic, easy to sweep and keep clean, and Robert's wheelchair was held down with adjustable straps bolted to the floor. When we drove, everything in the van would rattle and hum because the insides of the van had been scooped out and it was nothing more than a giant tin can to put a wheelchair in.

We were grateful to have it. Without the van, Robert's blue wheelchair had to be taken apart. The chair came apart in four pieces: hinged seat, two footplates, and a frame that folded in the middle. The seat was held in place by four points that needed to be loosened. Robert, when inserted in the chair, required a seatbelt and a vest that fastened at four points. So each time we drove in the car, a 13-point disassembly and assembly was required. Oh, yes, and then there was the five-point restraint system of his car seat. So make that 18.

While the van was sometimes hard to park--it required a handicapped spot and an access alley partner who showed basic human courtesy by staying inside their own lines--it offered a certain kind of freedom. A way to normalize circumstances.

Robert was my errand buddy. We shopped, we drove around Bethesda and Rockville, or maybe into the District. We were out and about, two regular kids on regular business. Robert's wheelchair handlebars made fine hooks for shopping bags. And I even figured out how to suspend one of those plastic supermarket hand-baskets between those bars.

But the van, alas, was not long for this world. An inconsiderate and unapologetic woman at the hardware store ran over the ramp when I tried to take a regular spot because the handicapped spots were taken by people without permits. The radiator sprung leaks. The transmission gave out, the temperature gauge lost its bearings. The air cylinders regularly gave out, leaving us to drive 20 miles an hour all the way home in a vehicle without suspension. Finally, the oil pan developed a permanent leak and the engine threatened to give up the ghost.

We gave the van away to whomever could use it for a six-month stint to get them through to whatever might be their next mile marker.

Without the van, and with Robert's increasing weight, heading out on an expedition with multiple stops became physically grueling. Our family life shifted, we got out less, Robert got out less, errands and weekends became exercises in dividing forces and dividing up time. Our lives reduced to the radical of Robert's disabilities. I told a friend last night that I so resented it when people assumed that disability represented a permanent stop, the epitome of limitation. Things change, I said, with a growing child--disability is never quite the same twice. Yet there we were, until last weekend, brought to a halt by circumstances.

But last weekend, we finally bought another ramp van, after working with our finances for a few years. Vans are smaller now and the newer Grand Caravans with their side ramps are like mini-mes of their early 1990s ancestors. Maneuvering Robert's chair in them was, frankly, difficult and irritating.

We bought a rear-ramp vehicle. Now parking lots will not deter us! (Just on-street parking will be our nadir) Take that, you violators of handicapped parking rules! No longer will I stand there, keys in hand, longing to give you your well-deserved $250 ticket in the form of a long scrape down the length of your vehicle!

Robert rolls up the back, down a channel cut into the middle of the van, and pulls in between and just behind two rear seats. Retractable locks with big black hooks clasp his chair to the floor, and a big seatbelt fastens across his lap and shoulders. He can look out the front window of the van. And he sits next to Edith.

This is the most exciting thing that has happened to Robert for years.

This is the nicest stereo system in a car I have ever had. I have been driving very used cars for too long and have never owned a car made after 1998. Our bronze road goddess is 2008.

And we are off today on a spring break expedition on a beautiful day to the Shenandoah.

And I have ordered new bumper stickers for the car (on magnets so we can change them). One is my old Abbie Hoffman favorite: "You measure democracy by the freedom it gives its dissidents, not the freedom it gives its assimilated conformists." One of the others is a quote from the Dalai Lama: "Compassion is the radicalism of our time."

The Memo, Mr. Stupak, and choice

2010-03-23T09:59:00.007-05:00

Reader, I had a choice. Whatever that means, really.

One day in 1996, my right shoulder was in pain. Not me, my right shoulder. I went to see my internist to figure out whether I had hurt a ligament or tendon (if shoulders have tendons--well, I suppose so). It really hurt.

My internist is a very practical woman. She offered me a prescription medication and advised me to change the way I carried my usual bag full of books. The weight of the books was creating pressure on the shoulder and the various muscular and nervous structures of the shoulder and causing the pain.

But would the medication cause harm to the baby if I were pregnant, I asked.

Are you pregnant, she asked.

I don't know, I said, but we've been trying.

How long?

As it turned out, not very long. But long enough for it to be a possibility and too soon, a few days too soon, for a pregnancy test.

My internist told me that the medication might cause me to miscarry--if, and she stressed, if, I were pregnant. Which seemed highly unlikely to her. She advised me to fill the prescription.

I declined. If there were a baby, I was already committed to this course of action. Dedicated. For whatever reasons at the time, the baby did not seem hypothetical, a collection of cells without a beating heart, a scientific possibility. Something that could be lost, replaced, tried for again. I had a responsibility to someone else, already.

We had not been trying long. I was not a woman who had miscarried repeatedly. At every practical level, there was no reason for my apparent irrationality to decide against trading my shoulder pain for comfort.

As it turns out, I was pregnant. I was pregnant with Robert.

Times are, I have looked back at this moment--an apparent turning point--and wondered. No, I haven't wished that I had taken the medication, surprisingly. I've only wondered whether this was my moment of 'choice.' Was I supposed to have known then that I was closing off my "options"?

So many friends and relatives and others whom I read about in glossy magazines and newsprint speak convincingly of their 'choice' to have a child. That the time is right, the time is now, they have determined there are no obstacles in their way, life will work out just fine from here because they have made a choice. And in so choosing, are blocking off their calendars for pregnancy and child-rearing, ordering a 5 year subscription to Parenting magazine, reconciling themselves to the known effects this will have on their jobs or careers or other life decisions, in short, having made the choice, knowing what the future will have in store for them for the next 5-10 years. For sure.

Because in America we have 'choices.' And that is somehow analogous to 'freedom.' Because it is only when we are free that we have choice. Free choice. And free will to make our free choices. And when we choose something, that is exactly what happens: we get what we pick.

I missed that memo. The one entitled, 'Feminism as Careful Decision-making.'

I guess I thought feminism was an ideology. I had no idea it was a certificate course.

And that when I demonstrated I knew how to recognize appropriate choices and made all the right ones and proved that I was responsible, that not only would I get my certificate in feminist worthiness, I would also be given a healthy, typically-developing baby and a handful of tokens of self-righteousness to spend at my leisure. Because if you just make the right choices, everything goes just fine. That's how we know whether we should empathize with someone or not. In America.

Had I gotten the memo and been apprised of the fact that I was making a choice with overwhelming life-time ramifications by not taking the pain medication for my shoulder, well, what would I have done? I think I was speaking a different language then, and I doubt I would have understood the memo. I thought I was a feminist because I believed in the rights of all women to have both families and fulfilling work, regardless of the timing or the outcomes of their pregnancies. Or, whatever, skip family, or skip work if someone else will support you. I thought I might be able to lead a life similar to that of my male college classmates.

That's what freedom meant to me. I had no idea that I could "choose" unforeseen restrictions or that innocuous "choices" I might make could be lobbed back at me as evidence of my failure to take advantage of free will. Because everyone knows what's going to happen in life, right? It's just the sum of our choices.

Let me put down this heavy platter of sarcasm and parody, just for a moment.

Those of you who have read my blog for a while know that I am in the DMZ on abortion--neither fully pro-choice nor pro-life. I believe that abortion is a necessary, but insufficient, precondition for the rights of women. I do not believe that it secures any of our rights, except the right to choose 'no.'

Because if I believed that abortion secures all my rights, then I would believe that the choice to have or not to have a child is the single most consequential decision of a woman's life. I don't think it should be. I don't think any of our lives should come down to some decision to take or not to take a medication that might cause a miscarriage. Or to feel a simmering anger episodically, year after year, when some stranger on a comment board to an article about motherhood or disability parenting pointedly remarks that, well, that woman CHOSE to have that autistic child, or another stranger in a magazine article waxes poetic about her CHOICE to have her (healthy) baby and how carefully the choice was made and how rewarded she feels for making the right ones.

Clearly, I need a bumper sticker. One that reads: I didn't choose to have a disabled child and you didn't choose to have a typical child. And, you, over there, you may not have chosen not to have a child at all.

Yup. You could say I think that Choice Feminism is a bunch of self-delusional hooey. Sorry.

Which is why, in the end, Bart Stupak was so oddly refreshing.

Throughout the agony over the Hyde Amendment and its alignment with or not so much with healthcare reform legislation, I just kept my head down. Did I think women should be allowed access to abortion? Absolutely. Did I feel a knot in my stomach when a registered nurse spoke on television about adjusting the language of the amendment to include permission to abort 'fetal anomalies'? Yes, indeed I did. Did I believe that the Stupak Amendment should mean Nancy Pelosi should chuck the whole reform legislation package? No, I did not.

Call me any names you like (privately, please), but the more 'choice feminism' aligns my rights as a woman with my decision to become pregnant or the outcome of my pregnancy, well, the more feminism wraps me in chains. And wraps my child in chains. If Robert's just a choice that shouldn't have been made, what right does he have to education or healthcare?

The much-reviled Bart Stupak stood up on Sunday night to rally the Democrats to block the Republicans from sending the whole damn thing back to committee (or something like that, forgive me if I have my parliamentarian hat on backwards). I don't know if he meant what he said or whether he was just channeling the talking points of Catholic nuns who gave cover to those who wanted to move forward on health insurance reform, come hell or high water.

But he said that affirming life had more to do with caring for the sick than it did with abortion politics. He said that he wanted to tell women that if they have a child and that child has medical problems, that that child will be entitled to medical care.

And that, that was a positive message. And I'm real, real tired of being made to feel badly by the Emily's List people--even if it's only a series of implications--about how (and why) I shouldered my responsibilities. I wonder if they even know that and if they even care.

And I love Robert. I'm glad he's here.

Waiting for lower osmolarity

2010-03-13T22:26:00.005-05:00

The last of the snow is almost down to ground--black tipped and crusted piles of stubborn ice--and with it goes winter. Rain. Just rain now. No more bracing for snow. The worst was the last couple of weeks, living in between two states. Liminal.

As the snow goes, it reveals all the flaws beneath it--our front steps with their crinkled paint, almost rotten boards. Thank goodness for the handicapped ramp. Grass surprisingly green, but scored by tire and plow tracks. And everywhere, debris. From branches to lost water bottles to the trails of dirt, gravel, and even concrete chunks the snow left suspended for so long.

When the structure of life melts away. Then I am left with sod the plow dug up on my lawn.

We have been left suspended for so long. In waiting room after waiting room. Say, last Tuesday.

A new gastroenterologist for Robert. It took me months to make this appointment. Not what you think--she wasn't booked that far in advance. Our gastroenterologist of nearly ten years died last summer in a tragic accident--he drowned. With him went a sense of security, an intimate knowledge of Robert that few others shared.

Dr. Latimer was the man we called in most of our emergencies, which were legion. Underneath all of Robert's neurological problems are his digestion problems. Clinically, this was always labeled 'reflux.' But it was so much more. Nothing controlled it--not Zantac or Reglan or Mylanta or Prevacid or Prilosec or Culturelle or any of those in combination. Every few weeks, Robert's digestion would blow up--it was gruesome.

Imagine your child is tube-fed. Now imagine that you can't even manage to keep food in the tube-fed child. Not with a pump. Not with gravity feed. Not with syringes. Tube fed because he ate so slowly he gained not a single pound in the year between one and two. Tube fed because, technically, the food can go in more slowly, more carefully, so it doesn't come back up. Surgery because it keeps coming back up. That's the one where they wrap the stomach around itself and somehow stricture the esophagus. This leads to gagging episodes where the child clearly should vomit but can't anymore. It looks like a death scene from a bad production of Shakespeare. Or a horror movie where the villain can't quite die.

People are scared of you and your child. So you go out in public as little as possible. When the child is gagging and refluxing and coughing, people stare at you. Then they look away when you vent his stomach.

We became used to measuring cups full of stomach contents, or more accurately, puke. Gas. Boiling gastritis. The sharp bubbling and popping sound gas makes coming backwards through the g-tube line and into a 60cc syringe. Endlessly. Minute after minute. There were days we did nothing but feed Robert, watch him for signs of stomach upset. Reflux and gag and choke and up it comes and get the measuring cup and syringe, a towel under his chin, and drain his stomach into the cup. Wait for a bit. Put it back (you have to or stomach enzymes become imbalanced). Watch for more signs of distress. Repeat.

But Dr. Latimer was there, always, even when no one knew what to do, with one last suggestion for stamping out the fire. At least for a little while.

Before he died, he did know that biotin was controlling Robert's stomach problems at last. No one knew why, not even Dr. Latimer.

When the structure of your life melts away, you are left with chart pages. Empty prescription bottles. Tubes and syringes. Formula cans for recycling. A new gastroenterologist.

She asked me, why are you here?

It wasn't an accusation. She was one of Dr. Latimer's colleagues at the medical school. It was a way of trying to open up the door.

But I took it as an existential question. I found myself kind of staring at her. Had she looked at his chart? No, but she had some of it on the computer in the room with us. I couldn't speak. This isn't going to work, I finally said. I said it again. I stood up. I put on my coat.

But I didn't want to leave. I just didn't want to go over it all again. Why was I there?

how had I come to be here

I sat down. I started talking.

to stop the sensation of falling off the round, turning world into cold, blue-black space

I spoke for 45 minutes straight. Straight through my fears. From the funny rash and the screaming and the possible intussusception and the falling backwards and the melting into himself and the loss of motor function and Dr. Latimer and Dr. Crawford and ADEM and Dr. Lavenstein and the byproducts of neurotransmitter metabolism and the tests and all the medications all 10 or more of them and the intrathecal baclofen pump and the times we couldn't feed him at all and the weight plateaus and Kennedy Krieger and the biotin and the 20 percent body mass gain and the lifting and the whole crying, puking, screaming nightmare.

sliding beneath a big black wave, another, and another

Robert slept through all of it.

I couldn't stop talking. This is why I'm here. To tell this story over and over again. To anyone who will listen. Because someone somewhere might help. If I just say it enough times.

The new doctor listened. To all of it. Without cutting me off or making me stop. With incredible patience. And then she had suggestions. She would help us figure out how to get the biotin through insurance, if we could. She would put in the new Prevacid scrip. She would write a new letter for our supplies. We should try a new formula with lower osmolarity. Lower solute concentrate (less debris). She knew the one. We could have free sample at first.

I left feeling suspended comfortably once again in my life. Debris swept up. Until the next time the snow melts. The next time the seasons shift.

Then I was back in it.

The War was on. Outside,

in Worcester, Massachusetts,

were night and slush and cold,

and it was still the fifth

of February, 1918.

But I was warm and dry. And Robert woke up. And it was finally March, 2010.

(And, btw, my health is just fine. No more tests.)

Radio silence

2010-03-02T23:46:00.003-05:00

This afternoon, my daughter asked me where the phrase, "Houston, we have a problem," comes from. She hears it on the cartoons she watches.

So I explained the problems of the Apollo 13 mission: the malfunction in the space ship, the repairs, the concern that the ship was irretrievable. The difference between Cape Canaveral and the command center in Houston, Texas. She had thought that perhaps Houston was a person.

I told her that we should talk about the space missions some time. That they had taken place when I was in kindergarten and early elementary school. Younger than her. I don't remember Apollo 13 very clearly for some reason--perhaps my parents were worried it would scare us. And so much easier to hide the news then--just the physical newspaper, the off dial on the radio, the TV that only received two stations regularly, three when the weather was good across the lake.

I do remember Neil Armstrong walking on the moon. It was summer and we watched the moon landing from the television in my parents' bedroom, which was on the ground floor of our house. I remember the contrast between the black and white images on the TV and the world outside the windows: the sense of where "here" is evaporating--"here" was that room and outside with the flowers and the trees waving gently in the breeze and it was also up in the sky where I could not see. Except I could see on the television. And all of it simultaneous. Real in its simultaneity.

I also remember, very vividly, the return of the various space capsules to earth. Walter Cronkite broadcast the conversation from the cockpit as the capsule neared earth's atmosphere. The military jokes, the calm and cool voices of the astronauts giving the impression that all this, all this was just procedure. Just the way the military men on the bases my dad did his summer duty at--Fort Belvoir, Fort Lee--were solemn and funny at the same time.

And then Cronkite's voice and the voices of the reporters would get tense as the capsule hit the outer layers of the atmosphere and the men entered the period during which there could be no radio communication as the last piece of the big rocket, what was left after its voyage and the various jettisons of its parts, hit the friction of what we call air. Would the heat shields hold? It was hot inside as our atmosphere slowed the capsule's speed, the drag creating heat, like a rug burn, flames probably bursting at the base.

Silence. Silence. Waiting and the cameras would train up at the sky, at the place the capsule should emerge into the blue of the air just before hitting the blue of the ocean. And pan the sky again. And then a black dot and bigger and it would be the capsule and a big parachute would deploy. And then voices.

Radio blackout. That point in time when you are truly alone, on your own, and all that is left is to wait.

Robert under anesthesia--going under, either with a mask or falling off with the delivery of the agent through his tube. The white sheet under him and the bright lights and the anesthesiologist telling me what would happen, that the anesthesia smelled like bubble gum. And Robert's startled face each and every time as the mask covered his mouth and nose. Breathing, then held breath, startled, and breathing again. Eyes wide and then drooping closed.

And how quickly they would make me leave then when I wanted to linger and just make sure he was OK.

And, after radio silence, his return to earth. Limbs and eyes stirring, then waking to remembering then not knowing where he was.

I thought of none of this while I was going through the CT scan repeatedly today, but it is as though I had thought of it. The room is white and cold. And big. Because the equipment is big. And lonely because the technicians leave the room to monitor the computers in an office in the back.

There's just me, entering the white ring of the machine, wondering if my elbows resting by my ears will hit. The recorded voice telling me to breathe in, hold my breath. Silence. Long pause. The whirring whine of whatever makes the images and trying not to look at the little sign that says, do not look into this red square because you will be looking directly at the laser. Which is probably not good, but the sign doesn't tell you why.

And then the recorded voice saying, with odd urgency for a machine, breathe!!

Known World

2010-02-23T10:38:00.004-05:00

In the evening after the first big storm that frosted the DC area like a big white cake, I took some time to go outside in the evening. Crossed the street to deliver a meal to a neighbor who needed it. Returning through the middle of the street, I paused in the knee-deep tire ruts left by the handful of four-wheel drive urban warriors who'd passed through. Looked up the street, looked down. Absorbed the pleasure of standing in the middle of the road, even though ours is not a busy street, without a worry or a thought about a car's approach. Streetlights made the snow glow in a blue-white haze settled over all.

The peace that follows 'disaster' of some sorts--perhaps the quietening of all inner voices, all the chatter layered onto our days, whether people or cars or planes or the freneticism of over-scheduling and task overload. All of that is tamped down under two feet of snow.

It was the same quietude in the days after 9/11, when jet noise stopped overhead. When I was afraid to leave everyone to go to the supermarket, worried about what might happen next and what might go wrong if we were separated even for an hour or two.

Locked up in our home, together, there seemed little to fear this time. The power was on. We had food. All of Robert's medical supplies were in good order. No reason to leave the house until the plow came--and even then, no reason to leave until the high-pitched hunting and gathering fray had subsided.

Calm. Until this winter, snowstorms in the DC area always provoked anxiety and fear in me. I thought of myself as trapped in the house, my child sick, his health always uncertain. What if we needed to leave and we couldn't? The isolation intensified the feeling of the abnormal, with access diminished to the typical.

As the snow has been plowed, pushed back into huge piles in parking lots, in front of sidewalks, at the corners of intersections, my daughter took to calling them the Alps. She was climbing the Alps and it became one of her favorite activities.

As we emerged from our snow-cocoon, reality rushed right back at me, as though a dam had broken. Scaling the Alps. Robert now weighs 78 pounds, and his weight continues to rise. Stabilizing him with the biotin has allowed us to up the volume of his tube feedings. His weight, stalled periodically for years at a time, has increased to that figure above from 63 pounds a year ago.

This is a problem. Despite the musculature I've gained from yoga, despite learning to lift, I'm pushing my own limits. Getting him into his car seat from his wheelchair is no longer an action that is routine. Wriggle one arm behind his shoulders and under the far arm. With the other, lift him under his knees. Shift his weight to the edge of his wheelchair seat by sliding him forward a bit. Brace, legs apart for stability, squat in order to push up with the knees. Lift, pushing my legs straight up. Step toward the car door, the sliding door wide open. Place my right knee on the floor of the van. Try to lift him up one more foot, at just about my shoulder height. Get at least one of his hips on the car seat to absorb some of his weight. One more mini lift and shift and he's settled in.

And now we're coping with the puzzle biotin itself has become--with its positive effects on his g/i problems, stabilizing those, its small additions to his motor abilities, but without much global change. The neurologists won't write a prescription for it, despite the fact that our insurer would cover it (it goes through his g-tube) and that it runs us just under $200 per month. Why? There's no data to suggest why it's helping, no medical rationale, no metric. But they're happy to let us keep giving it to him.

So now, for me, it's not so much any storm that bothers me. It's re-entering the world. The storm was stasis, the status quo, a comfortable lingering within boundaries I understood. The known world, to misappropriate a title of a novel.

When your child is undiagnosed, doctors 'break up' with you all the time. They reach the endpoint of whatever advice and treatment they have to offer. Then, like your last college boyfriend, they offer to be friends, always be there for you if you need them. Then they refer you to someone else. Which is better than just suggesting you should find someone else.

Our gastroenterologist was our one constant. He met with a terrible accident last summer and passed away. What he would viscerally understand about our struggles is now gone, uncommunicable to others. Who can interpret Robert now in the context of what has gone before?

I made an appointment with a new one to at least start the routine again. We will need that as we now have been

referred to a mito specialist in Cleveland. Because we live in such a large metropolitan area, I have never had to take Robert to see a physician or a specialist who lived more than an hour away from my house. We have been day trippers in the land of disease. In fact, the undiagnosed disease program at NIH is just a few blocks away (we haven't yet been--not sure we're ready for the high-powered test-repeat, full metal jacket protocol I know it is).

So now we will contact the doctor in Cleveland and hope he will see us. So much of what we have faced is unknown, but circumscribed within our known world. Storms might rage outside, but we are inside, within or just beyond the Capital Beltway, our footing slippery but the terrain secure.