Wally died of a viral brain infection, PML, which stands for progressive multifocal leukoencephalopathy, a condition in which an ordinarily harmless virus that most of us carry around in our livers is able to migrate, due to the suppression of the immune system, into the brain. There it multiplies unchecked, causing certain areas to become inflamed, unable to function. Typically—to the extent that anything is typical, since this is a rare opportunistic infection which affects perhaps two percent of people with AIDS—PML leads to a gradual paralysis, symptoms rather resembling those of someone who’s had a stroke. One side of the body is usually affected more than the other. Difficulties with speech and comprehension develop gradually, along with loss of movement and feeling. Leading, at worst, to complete paralysis, which was my deepest nightmare for Wally, the scenario I tried not to let myself imagine, that he might be awake and aware but unable to move or to react.
PML: hard, unyielding acronym. Another constellation of letters, in themselves meaningless, full of negative capability. We could imagine into them further because they were so empty, so devoid, in themselves, of content or suggestion. Like “AIDS” itself; if the disease had a name, a real word, would we be able to attach so many cultural meanings to it, freight it so heavily with values and associations?. AZT, DDI, DDC, PML: troubling recombinations of letters. A bad hand drawn at Scrabble, letters which we can figure and refigure and still make nothing. PML literally makes nothing; where someone was, where clarity and spirit and intelligence and movement were, erasure. As if the self were written in chalk, then powdered away.
If, in fact, PML was what we had. (I write that “we” unconsciously at first, automatically, as though it were my illness too, I lived with it that closely, it consumed my life that completely. I know I can’t know what it’s like even to be HIV-positive, but there is a way in which people have illnesses—especially terminal ones—together.) The only way to make a positive diagnosis of PML is a brain biopsy. If that test did yield a positive result, then there was nothing to be done. The single experimental treatment we heard about—holes drilled in the skull, the brain flooded with AZT—sounded like a medieval torture, and Wally could never tolerate that drug anyway. And no one even much believed in it anymore, though it’s still the first thing prescribed to the HIV-positive.
So, if it was PML that erased Wally’s ability to use his legs, there wasn’t anything to be done about it. And if it wasn’t that, what was it? “Viral activity,” that mantra of ignorance, a vain attempt to gain power through description.
Wally’s progress, on the one hand, seems simple now, a gradual decline, a weakening and fading, a body increasingly unable to cooperate with the dictates of his will: a will that softened, slowly going out of focus, quieting, easing away. But on the other hand, like Bill, he seemed to become more and more himself, or some original, underlying portion of self, as if he were scoured down to bedrock. What remained, despite the diminishment, was the pure and irreducible stuff of character.
“Who needs the full story of any life?” James Merrill wrote in his memoir, A Different Person. And who needs the full story of any death? Scenes imply the whole, delineate it. We’re raised on film, and movies leave out the continuous, getting-from-here-to-there tissue of experience that holds the heightened moments of life together. All we need, as an audience, are essential gestures.
But how to identify, looking at one’s own life, the signifying moments? Now the years of Wally’s illness seem to me an avalanche, but at the time they felt more like a descent so gradual as to often be imperceptible, especially early on, before the course of things became clear. How could we know then what was happening? How distinguish a symptom of changing brain function from depression from a reaction to a drug? Then, in the final year, suddenly there we were: in chaos, in hell, and through what passageway had we arrived? Gentle Dante, to imagine hell as terraced—so that the descending pilgrims might have time to acclimate, to walk a little at the pressure of this new depth, before the ground falls away again.
For many people, there’s a clear line of demarcation which marks the crossing from being HIV-positive to having AIDS. That’s a telling grammatical distinction, the difference between being and having, between a condition and a possession. AIDS is a possession one is possessed by. Often the signifier of change is the first KS lesion discovered on the sole of the foot, the inside of the thigh. Or the first bout with pneumocystis.
For Wally, nothing was ever so firm and clear; it seemed a kind of gliding downward, his process of change, moving forward by such subtle degrees that, when one day I’d recognize how much he’d changed, or see a new limitation made clear, I’d be shocked. When did all the tiny increments add up to this loss?
At nine o’clock on a weekday morning, late in May of 1989, the public health care worker who’d come to tell us our test results blasted the world apart. I can’t say I remember the experience all that clearly, so much did it become a kind of whirlwind. She was poised on the edge of the couch, practiced, friendly in a rather formal way. She told us our results. Me first, then Wally. I remember going and standing behind him; he was sitting in a wing chair, I don’t remember if he was crying, but I remember the stunned aura around him, the sense of an enormous rupture—not a surprise, but nonetheless a horror, an announcement fundamentally inadmissible, unacceptable. Shattering, but not a surprise, for had we been thinking of anything else? And though she must have told me my status first in order to deliver good news, before the blow, I remember thinking it didn’t matter which of us it was, that his news was mine.
At that time testing was offered by the state, and after a three-week wait one arranged to meet the caseworker someplace—often secretively, in parking lots or cafés, to protect the identities of closeted people, to avoid the brand of difference and contagion. I think she offered us a few phone numbers—a clinic in Burlington, the phone number of Vermont CARES, the fledgling support group forty miles down the road. The phone numbers and information flapped in the void, little wings in a great tornado. Where were we then, in air, in limbo, in a not-knowing more darkened by contingency than anything we’d ever known?
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 perpetually 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.
Robert had passed his fatalistic attitude about AIDS along to his mother. One evening Peg said to me, “How do you feel, knowing Wally is going to die of AIDS?”
I told her I didn’t know that he was going to die of AIDS; for all I knew I might go first, or he might live a long life with the virus, or there might be a cure or at least a life-prolonging treatment tomorrow. It seemed important to me to maintain that kind of openness, to resist fatalism. In my heart I thought there was a slow erasure of Wally taking place, tremendously slow; the metaphor that came to me was of the outline of his body gradually being filled in with a kind of dark transparency, like ink, slowly spreading to fulfill the outline of him. A darkly spreading, bruise-colored tattoo. He looked like himself, still, but I began to imagine his body filling with an absence. I imagined that when we received his diagnosis we entered into the gates of the underworld, beginning a fatal descent, one very small step at a time. I imagine that the god of hell doesn’t come out to meet us in chariots and fire, infernal stallions stomping and champing and foaming; it’s that the dark god slowly turns the body of the descendant into himself, making it of a piece with his darkness. In my heart I felt this process as inexorable. We were moving downward, on the charred slopes, and nothing I could do would stop it.
But we were also living in the outer world, as well as in the inner, metaphoric one, and in the outer world, the day-to-day, Wally was not sick. Perhaps a bit less energetic, but was that just depression, worry? There was time in front of us, time to be used well, time to live. And I needed to turn away from that internal sense of descent, to live as if that wasn’t what I felt. I was, in my spirit, as much a fatalist as Robert, but I railed against his fatalism and talked about positive expectations, uncertainty, living as if we will live. After all, any of us can die, any time; we know we will, we just don’t know when. And if the diagnosis made it likely that Wally would die first, and sooner, then didn’t we have to live as fully as we could now, not in some death-haunted stasis?
Robert and I belonged to the same gym. He led bicycle tours for a living, and ran and biked indoors all winter to stay in shape for his demanding summer schedule. He painted rather conventional landscapes in oil, made stained-glass objects to sell at a craft store, and pursued a complex arcana of sexual practices involving leather and bondage. He had multiple body piercings before they become the fashion. He was a brave soul, I think, to use the sauna and shower in a mostly straight central Vermont health club in 1989 with his nipple pierced. One day when I arrived he was already running on the treadmill. He nodded hello and kept running while I climbed on the machine beside him, and while I did my idle warm-up and then gained what little speed I do, I noticed that he kept pushing up the lever to increase the speed of the conveyor belt, so that he was going faster and faster, on and on, pushing the machine to the limit, staring straight ahead, the sweat pouring off him. I didn’t think he was ever going to stop. But when he did, eventually, as I was winding down, he told me that morning he found, on his right calf, his first KS lesion. He wore sweatpants, and that day he showered at home.
Researching, he learned that the average person with Kaposi’s sarcoma survives eighteen months after diagnosis. He circled on his calendar the approximate date he expected to die. He informed his mother, took care of everything, and started thinking seriously about the traveling he wanted to do while he still could.
Wally was horrified by this almost casual fatalism (which disguised, of course, pain that was anything but casual; it was easier for Bob to present this sort of cool surface, a that’s-the-way-the-world-is attitude). This was so much the opposite of Wally’s spirit, and seeing someone so plainly, baldly negative helped him to see more clearly the way in which he wanted to live. Bob thought Wally was in denial.
In fact, Wally was wonderful at returning things to something resembling normalcy; he’d go watch TV, or eat a bag of the cheap grocery store cookies he liked, or putter with his photographs or his collection of fashion pictures as if things were all right, and somehow then they were almost all right. We each begin to feel, in part because of the support groups, in part because of the benevolent agency of time—which makes almost all things begin to seem familiar—a sort of stability. Highly provisional, that stability, but no one can live in endless uncertainty, in full consciousness of it, especially in the face of a diagnosis which the body does not demonstrate. Day after day, whether we were aware of it or not, we were circling the same questions: how can this knowledge be used? Can it be used? The way Bob employed his knowledge seemed wrongheaded to me, or at least not helpful. Later, I’d wonder if his difference from Wally was partly a matter of being further along in the process of the disease; was what seemed then a cynical matter-of-factness actually a gesture toward letting go of his life? Or was it a matter of a difference of temperament, each man refined—the way say, oils or perfumes are refined, reduced to essences—by illness to become more clearly himself?
If Bob, marking the date of his anticipated death in black marker on the calendar, thought the virus an insurmountable force which would, in eighteen months, erase his life, then Wally’s brother Jim provided almost an opposite perspective. Jim viewed the virus as entirely in our control; a tie-dyed-in-the-wool new-ager, he saw disease as something entirely subject to the will of the individual, since, as he understands the world, we create our own realities.
Wally came from a family of eight kids, from a southern suburb of Boston. His father—also named Wally—and mother met when they were adolescents, and married as teenagers when Wally’s dad, lying about his age, joined the Navy. He became a career sailor, away much of the time while Wally was growing up. “Marriage,” the poet David Wojahn has written, “is a pact with someone else’s memory.” (David was Lynda’s husband, and he was, of course, referring to her memories.) Wally always loved to talk about his childhood, a realm whose texture and details seemed immediately available to him. Now sometimes I feel as if his memories are mine; when one loses a lover, the pact becomes intensified, in a way: who else will keep these stories? It’s as if I remember a summer evening, 1957 or 1958, Wally Senior handsome in his uniform, Betty in her bright flowered dress, red lipstick, her hair done, leaning over the bed in a little intimate cloud of cologne—Tabu?—to kiss me good night because they’re going out for the evening, dancing. Even now, Wally Senior’s embroidered jacket from Korea is hanging in my attic, thin black wool embroidered with a dragon twining around a map of Korea which floats above the silky stitches of his name. It seems so small; neither Wally nor I could ever wear it, but it’s hung in the closet of every house we ever lived in.
The family has the distinction of being perfectly balanced in terms of the distribution of sexual orientation; there are two heterosexual daughters and two lesbians, two straight men and—until Wally’s death—two gay. Wally and Jimmy, his younger gay brother, used to want Betty to march in the Boston Gay Pride Parade with a sign reading, “MOTHER OF EIGHT, FOUR GAY, FOUR STRAIGHT.” She was far too shy, though she loved the joke.
She—and Wally’s father, who died in the seventies—must have provided a climate of real acceptance for all their children; she certainly provided such a feeling for their girlfriends, boyfriends, husbands, partners, wives. From the first time I met Betty, my sense was that she loved her children so fiercely that whomever they were, whatever contributed to their happiness, was fine with her. And Wally’s father, who I never met, must have been a man with extraordinary capabilities to accept difference, too. I loved the story Wally used to tell about coming out to his parents. Just out of high school, he’d gotten a job at a local McDonald’s, and soon found himself—thrillingly—courted by the manager. It wasn’t long before they’d moved in together, into an apartment in another South Shore suburb, and Wally had busied himself behaving as a newlywed, late sixties housewife; making café curtains for the kitchen, learning to read cookbooks, figuring out how to spend his days when Mr. Mac was at work or wherever it was he went. One day Wally came home, unexpectedly early, from someplace he’d been on his bicycle, and found Mac in bed with another man. He ran out of the house, jumped back on the bike, and pedaled to his parents’ house two towns away. When he saw his father he burst into tears and said, “Mac has someone else!”
So much for coming out. His father put his arms around him and said, “It’ll be okay, son.” Wally was eighteen or so then, and his openness (as well as the lack of parental thunder) led the way for three of his siblings.
(I wish I’d known Wally’s father. In photographs, he shares the same twin white forks in his beard that Wally sported, a dashing blaze that would always motivate Wally to shave off whatever facial hair he grew. At a family reunion once in a legion hall decked in streamers and balloons, where lots of Wally Senior’s brothers and sisters had gathered, the old relatives kept staring at Wally. He’d grown out his beard and curled his hair, and every now and then an old man or woman would walk up to us, trembling, as if unsure whether to weep or be glad of the likeness.)
Jim had settled in Boston, moving from the suburbs into the city, as Wally had before him, in search of gay life and a wider world. He studied drawing and painting and graphic arts, and worked as a waiter in a large hotel. Between them a genuine fondness coexisted with a certain level of competition. Their pleasure in seeing one another—which was real—would give way, in a while, to a certain kind of exasperation. Wally viewed Jim as something of a know-it-all, so sure of the rightness of his own opinions as to be sometimes unbearable; I think Jim probably saw Wally as too passive, too easily led, though I find it hard to be certain what he felt or thought, finally, since he always seemed a bit of a cipher—not quite available to be known. I think they were closer before I came into Wally’s life; we had, like many couples, a sense of completeness together, as we became involved with and satisfied with one another’s company. Wally liked who he was with me, and I am not so sure this was true of how he felt about himself with some of his old friends, or with his brother. His relationships changed as we came together, as our life together solidified.
Jim tested positive early, in 1985, during an experimental trial of the test. His health has remained good, and he’s maintained a high T-cell count, a condition he attributes to attitude, and a regime of meditation and visualization. He says, in fact, that he is no longer HIV-positive, that he’s gotten the virus out of his system. Once we went along with him, to see a healer visiting Boston; he was a Native American man from the Pacific Northwest, and he had made appointments for hands-on healing in the Brookline apartment of a woman who led a small group of psychic healers. They worked with pairs of small metal rods, L-shaped, with the smaller end of the rod held in each fist. Pointed at the subject, the rods would move when various questions were asked. “Does Wally have the HIV virus in his system?” The rods would open, to indicate yes. After the healing session—in which the handsome, raven-haired healer touched Wally, prayed over him, guided him into a kind of combat stance and encouraged him to find the warrior in himself—the rods were pointed at Wally again. They still opened to indicate the presence of the virus, but more weakly so. I want to believe, am willing to give, in fact, considerable credence to the possibility that these people may have access to some energy or ability to approach disease from another perspective. I understand that the world reveals new aspects of itself from new perspectives, so why shouldn’t another system of belief show us a new way to see?
The signs weren’t good, though. For one thing, the psychic had a profoundly neurotic dog, who tore back and forth across the room, flinging himself against the furniture with increasing and unnerving force. Couldn’t she see into his pain? Why didn’t the rods help with his obvious anxiety? Furthermore, she expressed considerable concern for me, told me that I desperately needed to love myself more if I was not to become very ill. Then she pointed the wands at me, asked the question, and they promptly indicated that I had AIDS, too. My trust flagged.
(People who don’t know are forever sizing me up to try to guess if I have AIDS or not—checking out my weight, whether my cheeks look hollow or not, how tired I look. As Wally became more ill, he actually gained weight as his activity decreased. I grew thinner, from tension, exhaustion, riding my bike, and swimming laps to dispel the stress. People told me I looked too thin. My friend Maggie said I looked worse than Wally; “In a way,” she said, “it’s you I’m worried about.” Bill said, “Well, of course, it’s harder on you and Phil; you’re the ones who’re going to have to live without us.” Just this week I ran into a straight couple I know casually, on the street. They asked me how Wally was, and after I told them he’d died, after the expressions of condolence, I could see them both—unconsciously?—checking me out, trying to guess. One of them asked me, “Well, how do you think he got it?” As if I cared, as if it mattered, as if it mattered how anybody got it.)
The problem with Jim’s perspective is the obverse of its strength; it presumes that we are responsible for our own reality, for our experience. This is seductive, in part because there’s such a clear element of truth in it; if we take care of ourselves, we do better. And seductive, too, because Jim, stubborn optimist, insistent on his powers over the virus, is alive; Bob, committed fatalist, is not.
(On a business trip back to Vermont, I walk down Main Street and find a U-Haul in front of Bob’s building, and a man I know carrying the frame of Bob’s bed down the stairs while someone else lugs a stack of boxes down from the little aerie over the movie theater. I think the worst, but in fact he’s moving to another apartment, no longer able to manage the stairs. He’ll die not in eighteen months but in two years or so, in that little Vermont town, his mother and sister taking turns caring for him. He and Wally had a last conversation, a month or so before, on the phone, Wally in bed, Bob in his wheelchair, both too tired to talk for long.)
Maybe it would be wonderful if it were as simple as this: take care of yourself, attune yourself to the inner life, rid yourself of negativity, focus on the light, and you’ll be fine. But this seems to me, finally, a kind of kindergarten spirituality, a view of the soul written in broad crayon strokes. Oh, meditation and thinking positively and attending to the transcendent can be profoundly helpful, I know that. These practices provide a structure for caring for the self. They help us to live well, even help us deal with those aspects of illness that arise out of tension and stress.
What’s good about taking charge of one’s life is obvious; the negative side is subtler, harder to see, and has to do with all that the philosophy of self-control excludes. You are calling the shots, such thinking argues. There are no accidents, no unruly rupture breaking apart your life, no brutal interruption. You’ve chosen this path, this plan. Illness has a purpose.
But isn’t transformation, the spirit’s education, most often effected by what is out of our hands, the sweeping forces—time, love, mortality—which shape us? The deepening of the heart, the work of soul-making goes on, I think, as the world hammers us, as we forge ourselves in response to its heats and powers. The whirlwind pours over and through us, above and beyond human purpose; death’s deep in the structure of things, and we didn’t put it there. Just as the Voice which speaks to Job out of the whirlwind points out that we did not father the rain or the dew, or light the evening star.
Don’t we require, finally, a place in our thinking for fortune, or destiny, or whatever we choose to call what will happen to us, how the avalanche will break over us? Contingency is somewhere near the heart of things; we edit and oversimplify the world if we deny it. How much simpler and smaller the universe would be if we controlled it—or if things merely went on their course without us, fatal and arbitrary. We live in the dialogue between what we can influence and what we can do nothing about. Do what you will, realities swim into view like planets. Jim says the world’s entirely in my control; Bob says it is completely uncontrollable. Neither feels true, finally, to the ambiguous, shifting, complex field of human life. Sometimes we seem to see the whole; sometimes only details, the welter of incident. Things cohere, things fall apart. We make decisions; things are decided. We choose our parts; we enact scripts written elsewhere. To insist either that we are in charge or that we are helpless seems equally wrongheaded. Both perspectives insist on certainty, because they refuse to grant the unknowable. They offer, like any sort of fundamentalism, certainty, a system of reliable answers. They allow the suspension of painful and confusing ambiguities, and offer us a chance to give up the difficult, frustrating work of living on that dizzying, live edge between affirmation and despair.
My hair’s been gradually vanishing for years, my face moving toward the semblance of my father’s. In the body, in particular, the firmest exercise of will is humbled by processes out of our hands. I can struggle against the loss of my hair—through prayer and meditation, drugs, or through measures ranging from Dynel to, God forbid, the Hair Club for Men—but my scalp retains its identity; its motion toward baldness is slow but ceaseless. It’s probably true that I could speed it up by hard living or stress, perhaps true that I could slow it down with antioxidants or perhaps visualizations, but control what happens to my hair? The reality of our relationship to our bodies is a shuttling dialogue; we effect some changes, other changes are visited upon us, and we could no more shape them than we could decide where a meteor will fall.
That arrogance which says I alone bear the responsibility for my body, for my fate, can suspend compassion. What are we to do, holding these tenets, when people we love fail to stay healthy? What if we “fail” to be well ourselves; mustn’t that then be a moral or spiritual failure? And if we ask for what we get, if all our suffering and illnesses are brought upon ourselves—cancer from repressed anger, AIDS from wounded sexuality—then what is the role of compassion? Just last night, at a benefit, a man who’s lived with AIDS for more than a decade was applauded by the crowd. He said he owed his life to the love of his partner, and the love of his friends and family; I found myself cringing inside, even though I’m glad the guy who said this is alive and well and feeling loved. But so many men who are dead were deeply loved, too, and finally this statement erases them, denies the validity of their real passions, of what was felt by and for them. We would like to think the dead could have helped it, because if they could, we could. But a virus cannot be loved away. Jim isn’t alive because of his attitude; Bob isn’t dead because of his.
We trivialize pain if we regard it as a preventable condition the spirit need not suffer. If we attempt to edit it out, will it away, regard it as our own creation, then don’t we erase some essential part of the spirit’s education? Pain is one of our teachers, albeit our darkest and most demanding one.
If I am more tolerant of Bob’s fatalism here, it is because he was already ill; I can somehow find in myself more empathy for his position, as he must have felt himself being swept away. I am less tolerant of Jim’s position because of the outcome it led to; as Wally grew more ill, he became less and less a presence in Wally’s life. I don’t want to overstate this; it’s not as if they were very close and then Jim suddenly walked away. But he simply wasn’t around. He visited us in Provincetown when Wally was still walking, in the summer of 1992. And then I think we saw him briefly at Christmas, in Rockland, that year; as far as I know, he and Wally never saw each other again. During the nine months Wally was bedridden, entirely incapacitated, we never saw him. Intellectually, I can understand the need to stay away—since, being HIV-positive oneself, seeing one’s own brother dying would be not only terrible in itself but a frightening reflection of one’s own possible future. I understand it, but I haven’t forgiven it. My recalcitrance and crankiness about this is in part because of my distrust of new-age attitudes; I’m horrified by a spirituality which is too transcendent for human contact.
And I am intolerant of Jim, of course, because I also long for that sort of control, which illness and death have taught me I cannot have.
A few nights after I wrote those pages, this is what I dreamed: I had to parachute from an airplane in a strange way, sitting in the kind of plastic chair you’d find in a doctor’s waiting room. I was strapped into the chair, pushed out the door, and then fell and fell, it seemed almost endlessly, toward the earth. I can’t remember landing, exactly, but where I arrived was a hospital room, and the man in the bed was alternately Wally and Jim. He—either man—was in the last hours of his life. When he died I wept and wept; the dream was full of the enormity of the weeping. In a while I knew I had to tell Wally’s mother that one of her sons had died, though by then I wasn’t sure which.
I woke then, shaken, not crying now that I was awake but aware of the sobbing that had filled my sleep. I think my dream was about compassion for Jim, about seeing him and Wally in the same bed, the same boat. Just as I think the darker underside of his spirituality is judgment, so my dream points up to me how my own judgment of him has obscured my compassion. If I were him, if I were HIV-positive, what would I have done? It’s easy for me to say I’d never disappear from my brother’s life, but I don’t know that; can any of us know what we’d do under that disfiguring pressure? Judgment is easier than compassion, my dream reminds me; the dream instructs me, falling toward loss, the fall I can’t control, though I survive it, to see the ways in which Wally and Jim are of a piece.
We tried to steer a course between fatalism and an unacceptable optimism—between feeling completely out of control and claiming a sort of complete authority neither of us could believe in. What we wanted, desperately, was some way for things to get back to “normal”—absurd as that sounds, in a way, it is also the necessary condition of ongoingness. Somehow we have to make whatever dreadful knowledge we have part of the fabric of every day; we have to find a way to continue our ordinary transactions with the world in the light of new and extraordinary knowledge. Of course nothing could ever be the same again, but how to integrate that pressure day to day, every hour? The sense of “normalcy” is founded in part on denial, on forgetting. So it’s difficult to remember, to trace the ways in which we moved toward acting as if our lives were normal again. Wally still went to work, spray-painting props and designing displays for shop windows. I tended the garden and wrote, through the summer, and in September went back to teaching. We’d go on as if we were fine, and then crash and go on again. Wally wasn’t sick, not just then; there was time in front of us—who knew how much, but suddenly any amount of time seemed a luxury, a gift. What would we do with it?