by Mark Doty
As soon as we could, we got Bobby an appointment with Wally’s doctor. While he was decidedly not compassionate in his demeanor—he didn’t much like the idea of Wally taking on extra stress, trying to take care of someone else—he did get Bobby started on preventative drugs for thrush and pneumonia. If we couldn’t do anything else, we could get Bobby connected to services he could use—Medicaid, food stamps, medical help.
Once when I took Bobby to Dr. Magnus’s office, in a borrowed wheelchair, the physician seemed to lash out at him with an uncalled-for anger. Bobby wasn’t easy to deal with. He was a relative stranger to this clinic, here only because we’d brought him in, and in the vicinity of a nurse or doctor he tended to become at best passive and at worst appallingly weepy, dramatic, and overblown. He was manipulative and needy, but he was a patient, a confused man who could barely stand up, and the doctor brusquely said, “What are you doing here? Why don’t you go home? Where is home?” His intention, I imagine, was to protect Wally, but there was something ugly and unnecessary about it. Why did I just swallow it at the time, and glare? I suppose my intention must have been to protect Wally, too, by not offending his doctor, even if I believed him a rude son of a bitch.
Sometimes I think I’d like to be able to maintain a judgment; sometimes empathy slides in when we don’t really quite want it to. It’d be easier for me to blame the doctor, to see only his limits and failures. But I can’t help but think of all the men he’s seen, everyone who’s come into his office bright and alive and full of charms and fears, like the rest of us, everyone who’s been reduced and diminished by the wages the virus extracts, the fevers and sweats, the losses and limitations, the new debilities wearing away at the self until people are just too tired to want to go on, though they do. How hard it must be, to watch them pour by in that slipstream, and be able to do nothing or next to nothing, to be unable to offer what medicine promises—not a word or a gesture of consolation but a cure.
I think, too, of Dr. Magnus’s own lover, a gentle and diligent young man, an artist who wants so much to do his work, who looks as if illness has subtracted from him everything that’s not of the essence. He looks burnished, burning with a flame just behind his skin, a flame that seems to be flickering at the edges, glowing steadily but not strong. How terrible, to live to cure, and not be able to offer any such herb or salve to the one you love, to live face to face with that limitation.
And yet, in the face of all we can’t do, might not we be led to make the gestures we can?
After Wally died, the young artist came to the memorial service alone, and explained that Dr. Magnus sent his regrets, but he just couldn’t bear another memorial.
I couldn’t bear it either. Nor do I imagine the artist could bear seeing in the Universalist chapel that day a version of his own future. But it’s like when young writers ask my friend Jean how she found the courage to write and to publish her work. “I didn’t find the courage,” she says. “But I did it anyway.”
For Bobby, Dr. Magnus at least provided a prescription for AZT, and for once that drug truly did hold out more than a distant promise, since it had been known to produce dramatic results in patients with dementia.
The first few days, nothing changed. Bobby would report to me his operatic dreams, his hallucinations, which would be narrated, disarmingly, with absolute faith: crystal bottles in his chest, lawn furniture in his brain, distortions of pattern, his obsessions with geometric figures. I’d note down what he said—feeling almost opportunistic myself, but also as if this focus sustained me, occupied my nervous energies, since any poet’s a student of perception, of the ways in which individual sensibilities filter and arrange the world. I dreamed one night that I was wondering how I would survive this, how I’d come through these days, and I saw in front of me a stack of books and papers and pens. The message: You have everything you need.
Then, one evening, Bobby came into the living room, wanting to watch TV. He still had that kind of swimming vagueness in his face, a lost look, but when a Supremes song began to play he suddenly grabbed the nearest piece of cloth and wrapped it around his head, stood up and began to lip-synch. He could only stand like that, arms out in the air in imitation of Diana Ross, for a few seconds, but he did stand, and he did move his lips to the words, and he was, for that moment, the man we knew.
And the next morning when I woke up he was in the kitchen, banging pots while he made his own goddamned oatmeal.
And not a moment too soon. Dr. Magnus, seeing the tension in Wally’s face, thought the stress of the past month unhealthy. A blood count confirmed it. Wally’s T-cells had fallen violently, by over two hundred. Dr. Magnus said, He’s got to go, now.
And go he did; though I hated the doctor’s blunt demeanor, I knew he was right. We encouraged him to stay in Provincetown, to find his own place, but it wasn’t his familiar arena. His mind cleared, his energy level rose; he could travel again, and went on to stay with other friends in Boston, the ones who’d first told us Bobby was sick. And when they couldn’t deal with him anymore, he went back to his parents for a while, and then to the YMCA in Cambridge, in Central Square. We thought—most of us would think—this a bleak prospect, but there seemed something familiar about the atmosphere for him, a sense of freedom and autonomy, a world in which he knew how to operate.
The fact of Bobby’s living in the Y was hard for Wally to accept; he’d have liked to intervene, but there was nothing to do but let go. He’d encourage Bobby to check into housing programs for PWA’s. Bobby went to visit one, he said, and reported that it was “depressing”—a term hard to countenance when the user lives in the YMCA! I don’t think Bobby wanted to identify himself as a person with AIDS. He stayed away from the support services Boston offered, out of a sense of shame. Or pride? Or the independence that had, in fact, made it possible for a difficult and marginalized man to build a life for himself in the city, over the years? The world he occupied in the few blocks around the Y was a small one—coffee shop, barber’s, corner store—but one he could negotiate, for a time. One where Wally would visit him. But not yet, not today.
The house was quiet again, but it had not regained the sense of peace, its atmosphere of safety. Wally looked strained and weary, a little—transparent, somehow? I’ve seen that look in other men, that weightlessness, that quality of being stretched thin, but not in my lover’s face. He’s been pushed to some edge. We’ve entered a new world, in which illness is no distant thing. AIDS, he said, was somewhere out there, present but not close. “I wasn’t ready,” he said, “for AIDS to come into my house.”
Suspense
Illness is anticipation; illness surrounds us with the vertiginous, the branching paths of what could happen. Our year of spiraling down, the hard stretch from the winter of 1992 until the winter of ’93, is the most difficult time for me to describe. Harder even than Wally’s death, my life’s watershed, toward which all the time before it moved, and all the time after hurries away.
Emily Dickinson, a poet so encyclopedic she can be consulted like an oracle, helps to explain.
Suspense—is Hostiler than Death—
Death—tho’soever Broad,
Is just Death, and cannot increase—
Suspense—does not conclude—
But perishes—to live anew—
But just anew to die—
Annihilation—plated fresh
With Immortality—
Death is “just death, and cannot increase”; there is no further, no still-to-come. Death puts an end to the multiplication of possibility. This has happened, nothing else. Black as this obliterating balm is, it also has in it, after long illness, an element of relief.
There is no relief in long illness, which suspends us in not-knowing. Every case of AIDS is unique; each person has AIDS in his or her own way. We couldn’t know what was coming, we could only hold our breaths as it began, slowly, it seemed then—though so swift now, in retrospect’s compression—to make itself known.
&n
bsp; A season of fear, after Bobby, though not always fear expressed. Fear contained, lived through and with, “Hostiler than Death.” It was the time when Wally was most in pain—psychic distress, the terror of uncertainty, the fear of what opened before him. Physical pains began, too—headaches, especially, gripping sieges that would keep him on the couch for days, dosed on horse-pill-sized ibuprofen, then on codeine. Then he’d feel better suddenly, released from the punishing grip at his temples, but tired, pale, erased.
Perhaps this year’s hardest for me to describe because I could hardly bear to look at what was happening, to let myself see it. There was so little I could do. Later, I could at least attend to the countless little needs of a man who couldn’t walk, but now his difficulties, his growing sense of diminishment, were things neither of us seemed able to do a thing about. We both wavered on the edge of depression. These darkening months, what could I be but his witness? And how could I bear that?
That late winter and spring were the season of Wally’s most powerful dreams, which frightened me, with their seeming rehearsal for death, although he’d report them, mornings, with a tone much more like wonder.
In one, at the end of a long tunnel, a great Being stood in the light. The Being himself didn’t really have a gender, Wally said, though you had to call him something. He was of human size, but his arms were full of people, men and women, and somehow they were of human size, too. The proportions were all just right. The people said to Wally, “Come with us, we’re going dancing.”
“And they seemed so glad to be going,” he said, “and so glad to have me join them. But I said, ‘I’m not ready yet.’”
In another dream, Wally watched his own funeral, which was taking place in a church in Rockland, the town where he grew up. His body was dressed, laid out; from the air above, he watched himself, watched his mother and me, wanting to tell us where he was, but removed from us, still, literally above it all.
Another night he traveled to a distant place where a group of men sat a table playing cards. It was a room between heaven and earth, and when one of the men stood up to greet him, Wally realized it was his father, dead these fifteen years. He was so happy, so reassured to see his father again, but the older man said, “It’s not time yet, son. You’ve got to go back home.”
The tone of awe with which Wally’d tell me these dreams was contagious; I couldn’t help but feel it, the sense of dread turning into something else—that sense of adventure, that eagerness with which he’d always greeted the world? And yet I wanted him, too, not to accept. Shouldn’t he struggle to live?
To write was to court overwhelming feeling. Not to write was to avoid, but to avoid was to survive. Though writing was a way of surviving, too: experience was unbearable, looked at head on, but not to look was also unbearable. And so I’d write, when I could, recording what approached like someone in a slow-moving but unstoppable accident, who must look and look away at once.
Though I carried it with me everywhere, ready to use, all that year I’d fill only one small notebook.
February. When I’m at home I’m with W so constantly, we are face to face together in the terrible dynamic of him getting weaker, more limited, and it’s hard for me to remain intact, feel like myself. I don’t have much of a sense of my own borders—and that’s not so bad (it’s an asset, in some ways, and a given anyway), as long as I do what I need to do myself—walking alone, writing, sinking down into myself enough so that I am not always being in relation. But I don’t want to pull back psychically too far, either—it’s the right balance that’s so hard.
Wally begins to live on the couch. It’s a cot, really, a folding wooden Victorian contraption with beautiful lines, for which Wally’d made pads and pillows long ago. It is surprisingly comfortable, if slightly shaky, and long enough to let either of us sprawl our whole long lengths, though it seems ages since I’ve lain there myself. It is Wally’s place in the world—the two living room windows looking out to the garden and, over our picket fence, the life of the street. And when the view wearies, he can turn to the big blue-painted cabinet holding the TV.
Arden’s beginning to expect less from Wally. He looks to me for trips to the bay or the woods. Wrestling together used to be their joyous, daily occupation. Arden sleeps on the floor by the couch, Wally’s hand drifting down over his back, tangling in the black curls.
Spring’s coming. I am trying to write a poem which won’t come right. In it, I imagine watching a flowering tree, in early spring, trying to see the gradual process through which it bursts into flower, into fever. How does it happen, the hard sheen of the bark opening to admit such transformation? I try to imagine what it would be like to really see that moment of change.
And I’m trying to write a poem about Wally on the couch. I try to write it as a villanelle, an obsessive form which repeats whole lines; my watching him, sitting beside him, taking his temperature has about it a quality of ceaseless repetition. One repeated line I try is “an absence the size of you.”
“How could I prepare,” I ask, “for an absence the size of you?”
“An absence the size of you,” I write, “sprawled on the couch…”
“The future,” I write, “is an absence the size of you.”
My poem stalls, fails.
Wally’s T-cell count is falling. Dr. Magnus has said all along that Wally can have an AIDS diagnosis written down if he wants. If he does, he’s Medicaid-eligible, can be a client of the Provincetown AIDS Support Group, and we can receive a supplementary income through something called the Family Care Program, which will, in effect, pay me a bit each month to care for him at home. And he’ll receive disability benefits, and not have to work again—not that he’s been working anyway, but he has received unemployment during the winter, which has helped us through these months and will soon run out. (One real advantage to living in Provincetown, for people with AIDS, is that the epidemic has hit so hard here, for so many years, that people have figured out appropriate systems to help those in need; the maze of the available systems of social welfare has long since been threaded through, the options and procedures made clear. Elsewhere, understanding all of this can be a full-time job.)
Helpful benefits, but a very powerful word to accept.
Suddenly there’s no decision to be made. His T-cell count falls to below two hundred, just as the CDC officially changes its guidelines. Weird, to think that people someplace draw the boundaries of a disease, define its parameters. Now they have said that having fewer than two hundred T-cells constitutes a firm diagnosis, so Wally officially has AIDS.
We try to say it’s just a word. Not even that, an acronym, cipher of letters. And, of course, it’s anything but a surprise. And yet it has enormous power; it sits before us like a mountain, a fact too huge to apprehend. And also strangely after the fact, at the same time: what is this that has been erasing him, a little at a time, if not AIDS?
But AIDS of what sort? Other than the minor annoyance of thrush, none of the familiar OI’s show themselves: no pneumonia, no lesions, no toxoplasmosis, no cmv retinitis. He’s had nothing identifiable but those cottony white patches of fungus in the mouth which a daily dose of some drug prevents. He looks thinner but he’s not wasting away. He just seems increasingly tired, less present, more transparent, as though he were stretched taut over some vacancy within. HIV fatigue? his doctors ask. Viral activity?
Sometimes I’m overcome by waves—no, a continuous molten outpour—of anger, though it’s never directed at what I’m really in a rage about. In the bank, for instance, some petty annoyance or irritating policy sends me into a fury; I’m flushed, my heart’s pounding, I want to pound on the counter. I know the teller can hear my voice shaking with all I’m holding in, though I am also letting out quite enough.
April. Support group. We all had a good week. Andy and Martin have forced pots of bulbs, and they’re blooming, and because Martin feels better, they’ve been to the movies. Saul, blind now, loved feeling the sun on his
face, these bright days. Alan held still for his injections, so this time they didn’t hurt him. Jerry made a huge pot of vegetable soup, and Henry cleaned his plate, and asked for seconds, and between them they ate it all, then Henry got up out of his wheelchair and helped to wash the dishes. Wally and I, given a week without fever or headaches, went for the longest walk.
Whatever it is comes and goes, a lost week followed by a brighter one, a flourish of energy. The inability to predict is thus a source of terror and a gift.
May. Wally’s feelings are so contagious, he’s such a restless and unfocused presence in the house, which we’ll really have to deal with somehow, this summer. I’m weary of school, but the time I’ve had going to and from work’s also the only time I’ve had alone. I don’t want to get cranky and tense, I want to stay cool and enjoy our time, but I worry about that being hard when he’s so much at loose ends. The most important thing for me to do may be to make decisions about how I’m going to use my time. We can’t both fly around madly or we’ll go nuts.
Wally’s planned to do windows for the clothing store this summer, a bit of work out of the house that would give him a project every couple of weeks, allowing him to work for just a few hours and rest in between as much as he likes. But the first time, for the Memorial Day windows, retail preparations for the season’s opening weekend, it’s clear what an enormous toll it takes to sketch a plan and gather the props. I drive him and them to the store, he works for a few hours and then comes home to rest, later works a few hours more, and then he’s exhausted for days. He accepts one more offer to do the windows, after this, but then postpones twice, and finally cancels.
In June, Wally goes with a group of men with AIDS to Watershed, a workshop in ceramics in Maine. I’m happy for him to have something new away from home, away from me, with other people; his illness and his depression isolate him. We talk on the phone every night; he loves the landscape there, and likes the workshops and the people he’s with, but tires so easily and deeply, feeling weary to the bone. Long afterward, nearly a year after his death, I’ll find a yellow spiral notebook mixed in among the cookbooks, a little journal he began there and soon abandoned. How it’ll shock me then, the fact of his handwriting, his voice coming through the plain clear print:
