by Mark Doty
We drove to Burlington. It was glorious dense green spring in Vermont but it could have been anywhere; there wasn’t anything outside our numbed sphere. Inside the car we held hands as I drove, talking or not talking, I can’t recall. A blur of green outside, shreds of fog, I think, on the mountains and the almost impossibly green valleys between them. The palpable wounded shock inside. We went to the support group office that day, signed up, took home brochures; I remember crying in a Szechuan restaurant, Wally’s hand shaking as he lifted his water glass. We were inside a zone of silence; we could talk and still not violate it, even in a crowded room full of carved dragons and people chattering over business lunches. Perhaps we looked as if nothing had changed, so that no one would know we had entered, that morning, into the rest of our lives, into the harrowing, forward-pouring next.
Though nothing had changed but knowledge; our understanding had shifted so radically that the world seemed wildly unfamiliar. If my life were the tree I studied through the windows of my childhood museum, then I’d suddenly been slammed to the floor, my face thrust to a glass I’d never looked through before. We stumbled through the days, raw with the new fact. How long was it before any sense of consoling ordinariness—those brief intervals when things seem normal again—would return? Could this knowing become part of the landscape in which we lived, an aspect of the daily?
We began to seek out medical alternatives. Our decision to test had been influenced by a trip to San Francisco, where the word was that the HIV-positive would live longer if identified, since more and more preventative measures were being discovered. AIDS, the buzz had it, was on the way to becoming a chronic, manageable disease, like diabetes. It seemed perfectly plausible, in 1989, to believe that; my faith in medical technology, in science without limit, wasn’t the weak and compromised—vanished?—thing it is today. And then there were all the questions which floated around HIV status: would everyone who had been exposed to the virus eventually get sick? Why, presuming that many men of my generation or older had been exposed around the same time, in the late seventies and early eighties, were some people already dead, while others appeared completely healthy? Did that mean that some people were more naturally resistant than others? What about co-factors? How, when Wally and I had unsafe sex countless times, could I be negative? Did that mean that my blood held in escrow some soon-to-be-tapped promise? Somebody had to be working on this, with the same intensity that was, presumably, being brought to bear on the search for treatments of opportunistic infections. AIDS activism would make sure this was so.
(Today, knowing what I do, would I still want to take that test? I don’t know if the preventative treatments actually spared Wally anything; he never had pneumocystis, thank heaven, and perhaps that was because of the invisible clouds of aerosol pentamidine he’d breathe through a clear plastic tube, and, later, the big yellow Bactrim tablets which would make nearly everyone who took them ill. Who knows? In response to what he did have, the medical profession offered us nothing but a CAT scan and a shrug. However, I know that testing allowed us to make good decisions. No one can really be ready for AIDS, but we were able to have our house in order, able to get ourselves to a place of relative safety and support. So I’d do it again, I guess, though I admit there’s also a strong part of me that wouldn’t want to know.)
We’d been inspired by San Francisco’s cutting-edge optimism. “HIV is not a death sentence,” ran the next buzz-phrase. Everyone was talking about living with AIDS, not dying from it, and there was a new sense that people who were HIV-positive could live, and live well. Couldn’t we, despite the pressure of our tiny bit of knowledge, our huge field of uncertainty? Communities of people with AIDS in San Francisco and New York were offering the first shreds of hope that the HIV-positives might take charge of their conditions, might view themselves as the keepers of their own health, not helpless, not—a word newly understood as dangerous, insidious—victims.
But we were in central Vermont, a state with—at that time—twenty reported cases of AIDS. There was no activist pressure for advanced health care, drug trials, or services to the sick and their families, and none of the community of concern and support offered on either coast. So our central truth, the fact that dominated our days and nights, felt like ours alone; the world around us ignored it and disconfirmed it at every step. Sometimes I used to look at the clapboard houses rowed along our street, the blue and yellow porches, the russet Victorian bricks of the law office down the block, and be overwhelmed by the sensation that no one there knew what I knew, no one lived as we did. Wally and I were sealed together in some kind of bubble, a private sphere. The impact of the news was underscored by the way in which it isolated us, by the strange way in which our reality, more than ever, didn’t match the life around us.
Long phone calls to Project Inform, asking about drugs, T-cell counts, what’s new. I wanted to hear anything; I remember once the weary man on the other end of the hot line saying to me, “What is it you want to know?” I couldn’t answer; I wanted everything from knowledge to comfort, names of drugs to gestures of consolation. The world had split apart, and I wanted anything that could pour into that newly opened gap.
Wally made another hasty, not-well-planned trip to San Francisco. We’d seen, for the first time, ads for clinics there specifically for the HIV-positive, with upbeat names like Positive Action or Positive Choices, tags that suggested empowerment, no passive relinquishment but a firm grasp on possibility. A year before there’d been nothing like these ads, which now loomed large in the gay press, the bold type full of promise. We’d thought of AIDS as a catastrophe that left the sufferer no room for any sort of action, but this new attitude promised at least living longer than we’d come to expect, and weren’t there after all so many unknowns? Here, at least, the absence of knowledge might lead to hope.
But Wally’s experience at the Whatever Clinic wasn’t empowering. The staff felt cold to him, the project mercenary; the expensive consultation led to an unexceptional round of advice: AZT, when his T-cell count warranted it, and vitamins. The doctor didn’t demonstrate the sort of optimism the ads connoted. Wally’s visit there was really like my calls to Project Inform: what did he want? We each brought to our reaching out a wildly unsorted mixture of needs: for knowledge, for emotional support, for medical and psychological and spiritual help. What we wanted was what no one could offer: clarity, understanding, deliverance.
We tried to tell ourselves that nothing had changed, really. Wally’s health was, of course, exactly what it was the day before we gained this new knowledge. He didn’t have AIDS, or even what was called, then, ARC. He had, we had, instead, knowledge, a new awareness of potentiality—maybe of certainty? Who knew? He had been given a word, POSITIVE, and, as would be the case later, too, when he was given the “word” AIDS, that act of naming stunned us and sent us reeling. It felt, then, like knowledge we couldn’t actually use, though we tried to find ways to act upon it.
We got a dog. We’d been thinking about this for a while, before the test, and somehow it seemed, now, essential. I’d had one dog in my entire life, a collie puppy who’d died in infancy; I’d been so upset my parents had decided to stick to cats. I’m reluctant to reveal here what I named that little one, whose life ended on the oval of a braided rug out in the chicken coop of our rented farmhouse, for fear of it looking like mere contrivance. But I swear it’s true: I called him Wally. I think I’d gotten the name from “Leave It to Beaver,” and there must have been something about that boy with his shining dark hair and his white T-shirts that caught my five-year-old eye. Some things never change.
Wally had a loved, longtime companion of a Dalmatian as a kid. He’d thought now to adopt an older dog, one who wouldn’t need a lot of training. We tried cozying up to a couple of the grown-up dogs at the shelter, and endured a serious bout of sympathy for a wild-eyed, frizzy thing who seemed made out of the irreconcilable parts of a dozen breeds, with two different-colored eyes and ears that seemed perp
etually to be telling time like clock hands.
But sympathy gave way, in the face of the big black puppy who was already way too big for the cage in which he was confined, down at the bottom of a stack of cages. He lay on his side and looked up at us with eyes of a clear, deep chestnut, tail thumping on the floor. We were his in about thirty seconds. Out of the cage, he was an unsteady ball of rippling black fur, a big domed head, a soft tongue pink and tentative as the foot of a snail. A huge snail, in this case. What was he? Newfoundland and Lab? Some exotic bird-hunting retriever? He’d been found wandering around on a farm, hooked up with an older stray. He’d been growing so fast that, let out of the cage, he seemed hardly able to master his four uncooperative legs. We couldn’t wait to bring him home; he was evidence, he was our common futurity, he was blessed distraction, one thing for us to focus on together that didn’t seem to lead in the same direction everything else did.
He came home with us, riding back from the animal shelter on—was it my lap, or Wally’s? I seem to be able to feel him, still, that body a fraction the size of what it is today, and to see him also with his face against the collar of Wally’s red jacket, eager, tentative, being born right then, in front of us, into the rest of his life.
The doctor Wally was assigned at University Hospital in Burlington turned out to be as knowledgeable as anyone; despite the fact that he practiced in the far and rural north, he valued his status as a specialist, flew off to national and international conferences, and when we referred to anything we read and wondered about he’d always heard something about it already. He was not particularly warm, not emotionally available, but we’d begun to try to sort out our whirlwind of needs; if he could give us expertise, experience, intellectual perspective, then wasn’t that plenty? A hard science man, he had no faith or interest in vitamins, herbs, acupuncture. He thought the answer to AIDS would lie in drugs, and the drug of choice at that point was AZT (as it is, appallingly, these years later, when we’ve seen how poisonous and limited it is). The question was, when to begin. Early intervention, in hopes of shoring up a falling T-cell count? Or was the drug itself toxic, something to be used only when the damage it might do was plainly outweighed by the damages of the unchecked virus?
That summer Wally kept on working, a gesture toward normalcy, a way of maintaining routine. He’d take Arden for long indulgent games of chasing a tennis ball out in the park, and long walks on the railroad tracks; I loved the way the two of them seemed alert to every nuance of the other’s moods and wishes.
We allowed ourselves to feel our way toward change. Wally had been taking classes at the college where I taught, an entertainingly eccentric little liberal arts school which occupied the grounds of a fine old sheep farm. The woods and fields around the grand but derelict old manor house were dotted with examples of what the catalog called “organic architecture”: student-and-faculty-built concatenations of found windows, salvaged beams, decks and balconies mounted one atop the other, full of little hiding places and tiny round windows of colored glass and plastic which seemed to suggest particularly welcome spots for the occupants to hang out on mescaline or LSD. Out in the woods was a swimming hole, a deep spot in a small river where we used to go skinny-dipping, summers, and where Arden first learned to swim when I was peacefully floating on my back and he decided, with unshakable determination, that I needed to be rescued. The school—one of the few academic institutions in the world which offered tuition rebate to gay couples, so that a teacher’s “spouse equivalent” could enroll for free—had boomed in the early seventies, almost died in the eighties, and was gradually finding its way back to a kind of small-scale intensity. With its emphasis on embracing one’s own way of seeing things, it offered a squirrelly, lively community for writers and young artistic spirits of sundry unclassifiable sorts. My students sought first of all freedom from their parents, and after that were interested in self-knowledge and God. We had wonderful conversations.
Wally, who’d never been to college, had rather different expectations about what higher education would provide, but he spent a year and a half at Goddard painting, writing, and studying Afro-Cuban dance anyway. He’d had fun, commingled with the frustrations, but the experience hadn’t really been compelling enough to hold his attention after the test, and he let the idea of getting a degree go.
By the fall his T-cell count, never all that high, had dropped into a range where Dr. Science felt it was time to commence the antiviral. Within three days, how good a drug AZT was or wasn’t became a moot point; entirely immobilized by a clenching, unbearable headache, Wally couldn’t get off the couch.
It was the first time he was ever unable to walk Arden, into whose new life he’d poured his attention and energy, his love of play; Arden—absorbing all this affection, and sweet by nature—was becoming the most thoughtful and sensitive of dogs. He sat in the corner of the big, battered couch, confused.
Wally stopped taking the little blue-and-white pills; Science said try it again, to see if he could go “through” the headaches, ride them out to arrive at tolerance. But there wasn’t any riding out that pain; both the second and third trials left him helpless on the couch, his gripped, pounding, and unholy head held tightly between his hands, while outside the Vermont autumn unfolded its signal fires of wild-leafed maple and birch.
DDI, the next antiviral, was in drug trials, a part of the process leading toward FDA approval; people who couldn’t tolerate AZT and who had appropriately low T-cell counts were admitted to the study. Wally qualified, and soon we were receiving cardboard boxes full of white, foil-lined envelopes about the size of grocery-store sauce mix, the sort one makes into fake hollandaise or onion dip. These came filled with a powder like blank white Kool-Aid which dissolved, eventually, to a colorless cocktail. Nothing visible. (So many of our accommodations and negotiations took place beneath the surface, impossible to see.) Wally seemed to hate everything about the drug: the ritual of opening the envelope, stirring the stuff into water, clanking at the sides of the glass with a spoon. He sat at the kitchen counter twice a day, head in his hand, looking glumly into the glass while the spoon went round and round, the cloudy liquid not becoming clear for a long time. He took it regularly—even though we were full of questions: better to take an unknown drug or allow the body to do its own work? Which was more deadly, the invisible disease, the invisible treatment? We couldn’t see anything happening, but then one isn’t supposed to see; the idea was that the antiviral held something at bay. Neither of us really believed it was doing anything, but what might happen if he stopped?
And then came a bout of neuropathy, the most common side effect; his fingers tingled and went numb. He stopped taking it for a while, the neuropathy receded, and then he resumed mixing up glasses of the vaguely salty liquid. But only halfheartedly. Soon it was hit and miss, an envelope here and there, nothing regular. Boxes of the little foil envelopes of medicine arrived by Federal Express, and we stashed them away in a kitchen cupboard; soon we’d have more and more of them.
Do I remind him and encourage him to take the medicine? I asked myself. Do I trust his doubts or intuitions; do I trust my own? Uncertain, I did nothing most of the time, and then sometimes went on little crusades of advocacy for the snowy, scientific magic in its inscrutable packaging. You’ve got to try, I said, and he did for a while, till the tingling and numbness returned. A flyer arrived which said DDI’s toxic to the pancreas, that people have died from mixing the drug with even a little alcohol, a glass or two of—wine, was it? The letter was from the drug manufacturer, a hedge against liability, but it read more like one of those threatening chain letters which promise dire consequences to the recipient who breaks the chain: loss, disaster, death, if you don’t do things just right. Admiral Y., of Lisbon, ignored this letter, and three days later…
New support groups were starting up, as more HIV-positives and people with AIDS appeared in Vermont. The groups—one for people who were positive, one for their partners and families—met
in rooms at the Unitarian church in our town. Because there was nothing else like this in the whole northern half of the state, people drove an hour or more simply to be with people who knew how they felt. Our friends were all empathy, and even graciously acknowledged the limits of what they could understand. They couldn’t have done better, and yet we longed to have our reality mirrored back to us by someone in the same situation, simply to know that someone saw the world through a lens like our own.
Especially those who were themselves positive; there were enough of them to form a cohesive group, and Wally began to look forward to the weekly meeting in which six or seven men and one woman sat together and talked their way through each week’s topic, comparing notes, laughing, weeping, beginning to air the transfiguring knowledge distorting and remaking their lives.
My support group consisted, usually, of myself and one woman, our friend Robert’s mother. Peg had moved to town to be near Robert, who already had some minor infections. Robert himself was in Wally’s group, which met upstairs at the same time, so there was an odd sort of feeling when we all entered the building, through the side door, for confidentiality, and then split apart to go our separate ways. Peg and I’d go downstairs, to a little Sunday School room which looked out over a narrow, muddy river cutting through the center of the tiny New England capital; Victorian rowhouses, built as housing for granite workers, hung over the edge, yellow paint peeling from the spindles and eaves of the rickety balconies, half-frozen laundry flapping like poverty’s own banners. The room where we met had tiny chairs, for the Sunday School classes. It seemed odd for Peg and I to have a facilitator to ourselves, a lesbian counselor employed by Vermont CARES who conducted herself in a tentatively professional way, cautious, careful about maintaining her distance. This was Peg’s and my time, which seemed a luxury, although two people do not make a group and therefore there wasn’t the sort of energy or spirited exchange I heard Wally talk about in his group. Sometimes, after we’d each talked about our week and had a bit of exchange, we would wind down and not know what to talk about next. Sometimes while we were meeting I’d hear them upstairs, laughing, and feel a little twinge of jealousy that I wasn’t with all those other gay men talking and feeling through their common lot. I knew it wasn’t my lot, exactly, and that they needed the sense of permission that being with other people in the same boat presumably gives, and yet I still felt left out. Perhaps I needed a group of other lovers, other partners, but there weren’t enough of us around—or enough of us willing to be seen in a group, anyway—for that.