by Mark Doty
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 wh
ole; 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.