Heaven's Coast

by Mark Doty

  I walk Arden alone, in the chilly, ice-locked woods, on the trails around the ponds. “Here in winter one learns to love austerity,” begins a poem I’m working on, “or else not to love.”

  When I call home from school, Wally’s vague and empty-sounding; he seems to have barely enough energy to speak. I’m still going to work a couple of days each week, our friend Paul stopping in every day to visit, run errands, see if there’s anything Wally needs. He’s saying he’s fine, but I can tell he leaves the couch less and less when I’m gone, sleeping there at night, too. He doesn’t trust himself to get up, to climb the stairs; he doesn’t want me to see how shaky he feels, because he wants me to feel all right about going to work.

  When I’m home, I help him up the stairs at night, walking right behind him, to support and guide. The steep and narrow little stairway to our bedroom—in these houses they built stairways like ship’s ladders, designed to take up as little space as possible—becomes, this once, an asset: Wally can hold onto the walls, supported by the narrow passageway to bed.

  We order a new couch, from the Pottery Barn catalog, since Wally more or less lives on the couch now. Since we can’t go shopping together, we pore over catalogs and compare sizes and slipcovers—the world of fabric and texture, ongoing things, gestures of occupying, furnishing, inhabiting. Gesture of hope, though he’ll never get to use it much. By the time it arrives, in six weeks, the world’s changed unalterably.

  Accommodation

  The call comes one morning at school, as I’ve known it will. It’s a couple of days before spring break. I’ve spent the night in the pleasantly austere little faculty house, and when I get to my office at ten, balancing a briefcase in one hand and a large cup of coffee in the other, the red light on my answering machine is flashing. I’ve eyed that light with dread these two years, each time hoping the messages will be students, business, colleagues. The few times the telephone’s rung at night in the faculty house I’ve practically jumped out of my skin, racing down the stairs only to find the call was for someone else, or a wrong number.

  But this morning the first voice on the machine is one of the town nurses from Provincetown. Wally has fallen, and couldn’t lift himself up again, though eventually he managed to make it to the phone. He couldn’t get himself onto the couch, couldn’t stand up. They’ve gotten volunteers from the Support Group to be with him, as the nurse feels he can’t be alone. When can I get home?

  I post a note on my office door, a graduate student takes over my class; the students I meet on the way to the parking lot know what’s up by the look on my face, and they manage a graceful balance of expressing concern and staying out of my way. In half an hour I’m on the highway: Connecticut, Providence, New Bedford, Hyannis, home. All the way I’m clenched tight, holding the fear at bay, or sinking into it, crying now, before I’m home and have to manage things. Or imagining how, now that the apocalypse is here, I’ll do what needs to be done.

  The first lesson is that just when we need help, a world of help appears.

  Certainly there are aspects of the system of services for people with AIDS that are problematic. I dislike its sometimes coercive tone, the kit of conventional wisdom about how to cope, how to feel, how to live, and the offhand and overly easy way such wisdom is dispensed. What’s more annoying than bland consolation? (“Loss is hard,” one caseworker used to say to me, until I wanted to slap her for the banality of her utterance, and the intolerable contradiction between her statement and her cheery, “reassuring” affect.) But I can’t deny that, when a crisis comes, the system goes into extraordinarily effective high gear.

  I’d gotten used to doctors—in Provincetown and in Boston, at the hospital clinic where we’d travel monthly, on trips which became increasingly arduous for Wally—who’d see us every few weeks for short visits which yielded nothing, or next to nothing. If there were no drug to offer, no chemical solution, then there was little exchange. And so it was surprising and wonderful, at first, to experience the difference when one dealt with people on the lower echelon of the health care system. A nurse came to visit at least once a week, and would do so for the remainder of Wally’s life, monitoring Wally’s vital signs, offering practical, useful kinds of suggestions about the day-to-day.

  Even better were the home health aides. The lower one goes in the medical system, it seems, the more humanity, the more hands-on help, the more genuine care—perhaps particularly so when a disease is one the doctors and specialists themselves really can’t decipher. The gentle and patient people who will come and give a sick person a bath, rub his feet with lotion, or do the laundry and the dishes seem like ministering angels, the level of their involvement immediate, physical, engaged.

  We can have this help for a few hours twice a day; what at first seems like too much rapidly seems necessary, as it’s fast becoming obvious that Wally’s not about to walk again, at least not now. He tries to use a cane, a little while, but it seems hardly any time before that’s replaced by the greater support of a walker.

  Suddenly a confusion of people pours in and out of the house: a “primary care nurse” who’s in charge of Wally’s case, and various substitute nurses who appear in his frequent absence, a town nurse, a caseworker, a physical therapist, an occupational therapist—and the home health aides, of whom three or four come, on a rotating schedule which shifts from week to week.

  Thus, a self-sufficient couple must suddenly let a host of people into their home. And a control freak must relinquish control. This isn’t easy; at first I’m hovering, and I know I’m hovering, trying to make sure the home health aides have everything they need, showing them where things are, where things go. But they must be used to dealing with the discomfort of new clients; they seem, most of them, expert at inobtrusively finding their way in our house, establishing their place, slowly reassuring me, making friends with Wally, getting into the rhythm and tone of the household.

  There’s one HHA who emerges, right away, as a friend. Darren’s forty-five, a veteran of the AIDS wars, so reassuringly down to earth that Wally takes to him immediately, and he to Wally. It’s only a matter of days before I’m working in the next room, listening with one ear, as usual, to what’s going in the room where Wally is, and they’re both laughing, teasing each other and carrying on. And then I know there’s someone else involved with Wally whom I can trust.

  I begin to get used to not knowing what drawer the forks are in, not being sure where someone’s put the folded laundry; of course I feel invaded and confused, but I also begin to feel how long and hard I’ve been pushing, carrying us up a steep slope by myself. I haven’t asked for much help; it’s hard to accept it now, and yet whenever I do it’s welcome, salving, not only in the little practical ways but in a kind of spiritual sense: I feel less alone.

  There are endless accommodations to make. Stairs are out of the question now, so I move our bedroom downstairs, working like a man possessed, taking apart the big green bed and reassembling it in what used to be the living room. I’m startled myself at what I do alone; bullish with my will to make things all right, I’m an engine of activity. I am not yet willing to ask for that much help. I lug mattress and box springs, shoulder the furniture from room to room. The new bedroom’s sunny, full of light, and allows Wally to watch the street from bed. It’s tight, between the four-poster and the big blue armoire that holds Wally’s essential TV, but there’s room to move around, and it feels like home, not a sickroom.

  Our oak dining table—too big for casual use anyway, made for a party, or dinner for a dozen—is banished into storage, and what was the dining room is cleared out just in time for the arrival of the white seersucker-covered couch we’ve ordered, which seems superfluous now, now that the big green bed has begun to be the circumference of Wally’s world.

  April. Wally goes down like a brave horse incapable of standing. All the dread breaking loose, terrible sense that we can’t handle this disruption, that I don’t know what to do. Somehow I must alway
s know what to do.

  Then a spring break of accommodation—moving downstairs, having help around in the form of home health aides, visiting nurse, physical therapist—at first it’s all too much, like the world’s cracked, but gradually we put it back together. It seems like that’s the process, our work: we reassemble things, after each collapse, we find a way to make it feel intimate again, whole, after the rupture.

  The poems I’m trying to write move very slowly—as if my vision’s out of focus, so hard to make anything clear. Is that depression? Or an inevitability, when AIDS is the subject—the unencompassable subject. Though in truth it’s not “AIDS” I’m writing about, some phenomenon apart from us, but our love, the crack in our lives, and the going on in spite of the rift, beside it—that’s the central thing. All we have.

  W seems very brave to me just now. He wants to walk this summer, and so he is doing his exercises. Happy because Darren said a man who’d had a stroke was up and walking independently in three months. It’s been a long time since he expressed an ambition to get better—an ambition, as opposed to just a wish.

  Ambition which fades, as the realities get clearer. Soon the physical therapist is giving up, quietly; he needn’t do exercises, she says, but use his strength to get dressed, lift his legs when he’s helped to the bathroom, and so on. Wally says he thinks he’s lost strength in the muscles in his legs, and that’s why he can’t walk, but soon none of us believe his difficulties are about muscles. Something’s going on in his nervous system, somewhere.

  The town nurse’s office loans us a chrome and plastic commode, a portable toilet we can fit into the corner of the bedroom. I help Wally to stand, and then he pivots, and sits; at first I’m merely there to guide and steady him, but each week he’s doing a little less of the work. I bend my knees and lift him with my thighs, trying to be careful with my lower back; it won’t do to hurt myself now.

  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.

  He’s himself, of course, unmistakable, and yet changed.

  But sharp enough, still, to be frustrated.

  I want, he says, to go for a walk.

  Okay, I’ll get the wheelchair ready.

  No, I want to go for a walk.

  I wish you could go for a walk.

  I can, I’m going to.

  It would be nice if you could go for a walk.

  (A vague noise from him then, sigh of frustration, annoyance.)

  Later. When you’re gone, he says, I’m getting up and going to town.

  Me, remembering my days, years ago, as a preschool teacher: You wish you could go for a walk to town.

  It works, this time; he nods, and lets out an easy little sigh, reconciled. Maybe, he says, later.

  Of course I’m afraid that if he really believes this, or gets confused and tries to stand, he’ll fall and hurt himself. It happens just once, when I’ve gone shopping and there’s no home health aide there, and somehow the remote control’s been left on top of the television, and Wally very much wants to change the channel, so he sits up on the edge of the bed, which he can do without too much grief. And then when he collects himself from the work of sitting up he goes to stand, just enough to reach over and pick up the remote control, but of course he goes down, his legs useless, liquid, so that when I come home in maybe half an hour there he is, on the floor. Though I’m terrified for his poor body and afraid for his dignity and spirits my poor love is laughing, and once I get over the shock of it I say why are you laughing, even though the sweetness and clarity of that laugh make me laugh too, and he laughs some more and says, “What else can I do?”

  Grace

  That “what else can I do” seemed to signal a kind of internal adjustment, an acquiescence. Even, in an odd way, a sense of relief. If taking to bed, this new set of physical limits, meant confinement for Wally, it also in some way seemed to mean safety; he wouldn’t have to try now to negotiate a world he couldn’t manage. And of all the dire courses his disease might have followed—pneumonia, retinitis, KS, dementia—this one was what had occurred, a kind of mysterious failing, a fading from the ground up that no one seemed to know a thing about. Our caseworker had seen one other man with PML; he’d gone so gently, she said, a kind of softening of his awareness mediating his increasing physical weakness.

  Rationally, of course, having one sort of illness did not preclude ha
ving others, but I believe that for Wally the course of things had somehow become clear, the waiting ended. It wasn’t that he could have articulated that. It was simply as if some weight he’d been carrying were lifted; freed of the terrible suspense of uncertainty, he seemed lighter, more serene, ready to laugh.

  And a curious thing happened—not just at that moment, I mean, but over the course of that summer, gradually, and by season’s end entirely clear: the descent of some form of grace.

  Was it PML itself that gave Wally that peace, erasing terror, disabling that sort of acute self-awareness that would make a misery out of watching oneself fail? Was it a kind, compensatory mechanism in the disease, that took his nervous system’s ability to control his legs away, but gave him childlike pleasure in return, allowed him to keep his delight in the world?

  When we heard, late in the spring, that Bobby had died, in a Catholic chronic care hospital outside of Boston, I was afraid Wally would take it hard. Of course he was too sick, by then, for us to even consider going to the funeral, where I doubted we were welcome anyway; Wally, in his wheelchair, was the undeniable evidence of AIDS, everything the family wanted to deny. But Wally had already said good-bye to his friend, that day in the hospital lobby which already felt like decades ago. He met the news with equanimity, a little period of quiet, and then calm.

  Over the months which compromised the rest of his life, there’d be moments of pain, of frustration at his growing limitations—but imagine, confined to bed for nine months, having only little frustrations! Darkness might flare at the edge of things, but this lightness would stay.