Heaven's Coast - Mark Doty [105]
His legs, increasingly, seem lifeless. His feet have started to turn in, toward one another; they seem to cramp often, and he loves to have them rubbed and massaged with lotion. His skin’s gone so dry, on the lower half of his body, that his calves are suddenly checkered, like alligator leather, and they drink and drink all the moisturizer we can pour onto them.
The Boston doctor tells a nurse that he thinks perhaps Wally has PML; the nurse tells me, and says the doctor hasn’t spoken to us because he isn’t sure, the symptoms aren’t classic or clear. I learn the etiology of the disease, reading the few vague but terrifying paragraphs I can find about it: paralysis, they say, usually swift-moving, usually becoming complete.
It seems hardly any time before one of the nurses has brought us, on loan, a chrome and vinyl wheelchair. Wally hates it. He says he doesn’t need it. I can tell he’s embarrassed by it, that it’s another emblem of losing control; he says he wouldn’t want anyone to see him in it, and that if we went to town people would stare.
We make one awful, difficult trip to Boston, to see the doctor at the Deaconess. Getting Wally down the high, single step at the kitchen door is a major project, and then we wheel out to the car, and Wally works hard to help me transfer him into the front seat, and I fold the wheelchair up in back. In Plymouth, Wally has to pee, and we discover for the first time what an elaborate process it is to get the wheelchair out of the hatchback, get him into it and into the rest-stop men’s room stall, onto the toilet, and then back out and into the car again. In Boston we go through the same process, get him up the elevator and into the doctor’s office for his fifteen-minute appointment; the doctor eyes the wheelchair sadly, evidence of Wally’s lost vitality. “It may just be viral activity,” he says.
Back in the car, the wheelchair folded behind us, both of us exhausted, we think maybe we won’t come to Boston again.
May. My last trip to school of the year, a great relief to be done with any responsibilities outside of the house, to put all my attention at home. Darren’s with Wally overnight.
White herons, in the Bronx River, near twilight.
No wonder the bird is figure for the soul. Here, in a channel of black water, in concrete, beside a swifter river of traffic, this pair: their beautiful and useful necks, serviceable despite their unlikely, sinuous delicacy. Two white partners, in the black rush of the water, the color of untouched paper. These feathered presences shouldn’t even be called bodies—so fluid, heaven’s own white linens. Can anything so aerial actually be flesh?
At home, I spend the weekend building a ramp, of pressure-treated wood, something like a sloping deck. It has to be enormously long to make a gentle enough angle to get the wheelchair up. Even though I make the slope a very gradual one, when we test it out it still seems a major task to push the chair up that incline. Though not as major as lifting Wally, not as scary as trying to neither hurt him nor drop him while carrying that solid body, with its uncooperative legs, down the stairs.
Something else shifts about this time, so gradually that I can’t quite tell just when it began, or when the balance has shifted entirely. Instead of Wally telling me what and how he feels, I find myself interpreting, trying to figure out what’s going on with him. Does what’s happening in his brain affect his self-awareness, somehow? It feels as if he’s aware of now, completely, yet can’t stand at a distance from himself—not in the way to which we’re accustomed. But it’s no specific thing I can put my finger on, though I begin to understand it’s been happening for months, this shift of consciousness begun so subtly I could hardly see it happening, deepening till I’m guessing at what he feels. I’m not sure what he knows, what he understands.