Thursday, November 10, 2011

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

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.


GB's Mom said...

Great post. Thank you.

Elizabeth said...

I smiled throughout this entire post and read it in a sing-song post and loved every single word.

A said...

Or as Temple Grandin says, "Different, but not less."

Manoj Singal said...
This comment has been removed by the author.