Tuesday, July 12, 2011

Evoluzilla meets katekilla

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.


Elizabeth said...

I'm amazed that you were able to weave those asinine NYT comments in with your new "scientific learning" in such a seamless way. I claim complete shutdown of the faculties for both, actually -- the comments leave me cold and disdainful; the science overwhelms me. At times like these, I ascribe to chaos -- or perhaps "la nausee."

erika said...

I think you are brilliant. Also completely masochistic for reading the comments after such articles, but brilliant nonetheless :)

A said...

Unlike research on a specific gene that causes a rare disorder, study of mitochondria spans so many fields of inquiry---aging, cardiology/statins (my current obsession) etc., etc.---areas where the numbers are huge. This will be to Robert's benefit. Even the current issue of "California Agriculture" that's sitting on my kitchen table has a twelve-page article on mitochondria, complete with glossary and references!

"Suki, my friend, this could have happened to you."

Ah, but it hasn't happened to her. She is peering over the fence that demarcates Otherness, the side where we suddenly found ourselves plunked down, our worlds abruptly changed as our understanding of the path of motherhood veered into unknown territory. And it's rough terrain; Suki's unlikely to want to come exploring very far.