Having written about the devastating effects of AIDS on others, the author now describes the impact of the disease upon himself.
January 31, 1988
By George Whitmore
And we go,
And we drop like the fruits of
the tree, Even we, Even so.
"Dirge in Woods"
Three YEARS ago, when I suggested an article to the editors of this magazine on "the human cost of AIDS," most reporting on the epidemic was scientific in nature and people with AIDS were often portrayed as faceless victims. By profiling a man with AIDS and his volunteer counselor from Gay Men's Health Crisis, I proposed to show the devastating impact AIDS was having on a few individual lives. It had certainly had an impact on mine. I suspected that I was carrying the virus and I was terrified.
Plainly, some of my reasons for wanting to write about AIDS were altruistic, others selfish. AIDS was decimating the community around me; there was a need to bear witness. AIDS had turned me and others like me into walking time bombs; there was a need to strike back, not just wait to die. What I didn't fully appreciate then, however, was the extent to which I was trying to bargain with AIDS: If I wrote about it, maybe I wouldn't get it.
My article ran in May 1985. But AIDS didn't keep its part of the bargain. Less than a year later, after discovering a small strawberry-colored spot on my calf, I was diagnosed with Kaposi's sarcoma, a rare skin cancer that is one of the primary indicators of acquired immune deficiency syndrome.
Ironically, I'd just agreed to write a book on AIDS. The prospect suddenly seemed absurd, but "Write it," my doctor urged without hesitation. And on reflection, I had to agree. I don't believe in anything like fate. And yet clearly, along with what looked like a losing hand, I'd just been dealt the assignment of a lifetime.
That I was able to take it on isn't as remarkable as some might think. Kaposi's sarcoma alone, in the absence of the severe opportunistic infections that usually accompany AIDS, can constitute a fortunate diagnosis. Many Kaposi's sarcoma patients have lived five years and beyond. Although my own disease has steadily accelerated, I'm one of the very lucky ones. Although increasingly disabled, I haven't even been hospitalized yet.
I'm also hopeful - though it gives me pause to write that, since I value realism and pragmatism over the ill-defined "positive attitude" I'm often counseled to cultivate. Last summer, I began taking the antiviral drug AZT in an experiment to test how it works in people with Kaposi's sarcoma. Partly because testing has been completed on so few other drugs in this country, AZT or something like it is our best hope for an AIDS treatment and, in spite of possible severe side effects, it has already been shown to benefit other categories of people with AIDS. I have no doubt that, administered in combination with drugs that boost the immune system, antiviral drugs like AZT will eventually prolong the lives of countless people like me.
But I don't want to give the impression that I'm patiently waiting, hands folded, for that day to come.
"I'm one of the lucky ones.I haven't even been hospitalized yet" says George Whitmore, in his New York apartment with his cat, Ben. The photo is of his late father.
When I began taking AZT, I bought a pill box with a beeper that reminds me to take the medication every four hours. The beeper has a loud and insistent tone, like the shrill pips you hear when a truck is backing up on the street. Ask anybody who carries one - these devices insidiously change your life. You're always on the alert, anticipating that chirp, scheming to turn off the timer before it can detonate. It's relentless. It's like having AIDS. At regular intervals your body fails to perform in some perhaps subtle, perhaps not new, but always alarming way. The clock is always ticking. Every walk in the park might be your last. Every rent check is a lease on another month's life. The beeper is a reminder that with chronic illness, there is no real peace and quiet and no satisfaction, not without the sure prospect of complete health. Paradoxically, this same sense of urgency and unrest enabled me to write my book.
Needless to say, reporting on the AIDS epidemic from my particular point of view has had its advantages and handicaps. My book includes my original article on Jim Sharp, then 35, a New Yorker with AIDS, and Edward Dunn, 43, his counselor from Gay Men's Health Crisis, both white gay men, like myself. But it also profiles men, women and children, black and brown, in all walks of life, who have been touched profoundly by AIDS, too. We are more alike than not. If I felt a special affinity for Manuella Rocha, a Chicano woman in rural Colorado who defied her family and community to nurse her son at home until his death in 1986, it was in no small part because I recognized in her eyes the same thing I saw in my own mother's eyes the day I gave her the news about myself. If I was scared sitting for hours in an airless room in the South Bronx with a bunch of junkies with AIDS, it wasn't because I was scared of them. It was because their confusion and rage were precisely what I was feeling myself. The journalist's vaunted shield of objectivity was of little use at times like those. On the contrary, what often counted most wasn't my ability to function as a disinterested observer, but my ability to identify with my subjects.
Although some reporters might, I didn't need to be told what it feels like to wait a week for biopsy results or to be briefed on the unresponsiveness of governments and institutions. Nor did I need to go out of my way to research issues of AIDS discrimination - not after I was informed at my neighborhood dental clinic, where I'd been treated for years, that they would no longer clean my teeth.
So, there's much to be said for subjective truth. Nevertheless, I worried for a long time about the morality, even the feasibility, of producing a documentary-style piece of reportage like the one I'd contracted for -that is, without literally putting myself into it, in the first person. It wasn't until I found myself alone in a cabin in the woods, poised to write, that I began to confront just who that "first person" had become.
The MacDowell colony in Peterborough, N.H., is a collection of quaint artists' studios, each isolated from the others on 450 acres of dense woodland.
Since 1907, the colony has served as a retreat and a safe haven for generations of writers, composers and other artists, and it surely did for me. But it would be a lie to say that people who go there can escape; up there, in the woods, the world is very much with you. Up there, away from my constant lover and loving friends, at a certain remove from the Catherine wheel of death and mourning that my life in New York had become, off the treadmill of interviews and deadlines, I came face to face with everything I'd successfully evaded about AIDS.
Having it, for instance. Before I went to New Hampshire, it was still possible, even necessary, to pretend that in some essential way I didn't have AIDS in order to keep working. As far as I know, no one I interviewed during the course of researching my book knew that I had AIDS. And the telltale marks hadn't spread to my face.
My body. I hadn't looked at it much.
Before I left for New Hampshire, at the Passover seder with my lover Michael's family, we took turns reading the Haggadah in booklets illustrated with line drawings. When we reached the page with the plagues God brought down on the Egyptians, there was a locust, there was a dead fish with X's for eyes, there was the outline of a man with dots all over him, signifying boils. I stared at the cartoon of the man with the boils. I knew Michael, sitting next to me, was thinking the same thing. My body was like that now. I'd had three lesions 12 months before. Now there were three dozen.
One day in New Hampshire, in the shower, I looked at my body. It was as if I'd never seen it before.
A transformation had taken place and it was written on my skin. When I met Jim Sharp three years ago, I have to confess, I could only see a dying man. A chasm had separated me from him and the other men with AIDS I interviewed for The Times. Even though they were gay, even though most of them were my own age, each one of them remained safely at arm's length. But now that chasm was breached and there was no safety.
Grief, despair, terror - these feelings easily come to mind when AIDS does. They threatened to engulf me when I began writing my book. But what about anger?
When you have AIDS, the fear and loathing, the black paranoia, the everlasting, excruciating uncertainty of AIDS colors everything. When you walk down the street with AIDS, everything in your path is an aggravation, an impediment, a threat - for what in your life isn't now? A cab overshoots the crosswalk. Someone at the head of the line is arguing with the bank teller. All the petty frustrations of urban life get magnified to the limit of tolerance. Not even the infirm old man counting out his pennies at the newsstand is exempt from your fury -or perhaps especially not him, for in the prime of life aren't you becoming just that: elderly and infirm?
It wasn't until I returned to the transcripts of my original interviews with Jim that I realized that he - a voluble ad man with a wicked sense of humor, a short fuse and an iron will to live- had a special gift for anger, and Jim was now speaking for me, too.
Anger, life-affirming anger was the lesson Jim, Manuella Rocha and that room full of addicts taught me. Without it, I couldn't have written about the ocean of pain and loss that surrounds us without drowning in it.
My article about Jim Sharp and Edward Dunn was a portrait of two strangers united in adversity. In 1984, after his lover died of AIDS, Edward felt compelled to volunteer at Gay Men's Health Crisis. He couldn't, he said, sit passively on the sidelines while the epidemic raged on. Jim's case was the first one assigned to Edward when he finished his training as a crisis counselor. It was Edward's job to help Jim negotiate the labyrinth of problems - medical, financial, legal - that an AIDS diagnosis entails. In time, they became remarkably good friends as well.
An intensely private person, Edward was willing to expose himself in a series of grueling interviews because he was, I think, desperate to make a difference. The sole stipulation he attached to our work together was that his lover be given a pseudonym. Edward wanted to spare "Robert's" family - who had never been able to acknowledge their son's homosexuality, even unto death - any possible hurt.
Edward Dunn (left), an AIDS counselor, and his client Jim Sharp (right) at they appeared in this magazine in May 1985. Ironically, Sharp is still alive, while Dunn died of AIDS last October.
Soon after the article came out, Edward brought me a gift. It was a little teddy bear - a nice ginger-colored bear with a gingham ribbon tied around its neck - and I didn't know quite what to make of it. But Edward explained to me that he often gave teddy bears to friends, as they represented warmth and gentleness to him. Later, he asked me what I was going to name mine.
"I hadn't thought of naming it..."'
"Oh, you have to name him," Edward said.
"I don't know, what do you think?"
"I thought you might call him Robert."
That summer, Jim, a transplanted Texan, moved back to Houston from New York. Then, Edward moved to Los Angeles, saying it was time to begin a new life. Perhaps grandiosely, I wondered if our interviews hadn't played a part in Edward's decision to leave the city - that perhaps they'd served as something of a catharsis or a watershed.
Over the next year and a half, Robert the bear sat on the bookshelf in the hall and only came down when the cat knocked him down. Every once in a while, I'd find Robert on the floor, dust him off and put him back on the shelf. I felt vaguely guilty about Robert. I was no longer in touch with Edward.
It has been called "the second wave" of the AIDS epidemic. Its casualties include, in ever-increasing numbers, drug abusers, their wives and lovers, and their babies. I knew one of those babies.
I first saw Frederico - this is not his real name - one gloomy day last March, in the pediatrics ward at Lincoln Hospital in the South Bronx. Room 219, where Frederico was kept out of the way, is down the hall from the nurses' station. Not many people pass by its safetyglass windows. I doubt that I would have known Frederico even existed had I not been told about him by Sister Fran Whelan, a Catholic chaplain at the hospital.
Sister Fran, a petite woman with a neat cap of salt-and-pepper hair, was instrumental in getting me permission to visit Lincoln to observe its "AIDS team." For a few months, I sat in on meetings, went on rounds with its members, interviewed patients and health-care workers, and attended the weekly support group for people with AIDS.
In the early years of the epidemic, when Sister Fran, a member of the Dominican Sisters of the Sick Poor, began working at Lincoln, there were no more than one or two people with AIDS in the hospital at any given time. By last winter, there were always more than two dozen with dozens more on the outpatient rolls. Virtually all of the AIDS patients at Lincoln, a huge municipal hospital, were heterosexual, virtually all were black or Hispanic. Although blacks and Hispanics account for some 20 percent of the United States population, they now represent, nationwide, 39 percent of those with AIDS. In the Bronx, rates of AIDS infection are believed to be among the the highest in the nation. Currently, one out of 43 newborn babies there carries antibodies to the HIV virus, indicating that their mothers were infected.
When I first saw him, Frederico was 2 1/2 years old and had been living at Lincoln for nine months. His mother, an alcoholic and former drug addict, had apparently transmitted the AIDS virus to him in the womb. The summer before, a few weeks before Frederico's father died from AIDS, his mother had left him in the hospital. Then she died of AIDS, too. From then on, Frederico was a "boarder baby,” one of about 300 children living in New York City hospitals last March because accredited foster homes couldn't be found for them. Frederico happened to be disabled - he was born with cerebral palsy in addition to his HIV, or human immunodeficiency virus, infection -but lots of other children who were no longer ill and had no handicaps remained in hospital wards indefinitely.
Frederico's only visitor from the outside was a distant relation, a Parks Department worker named Alfred Schult who came to the hospital religiously, on Tuesdays and Sundays. Frederico's mother had been, Mr. Schult later told me, "the daughter I never had." When she died, Mr. Schult sent a telegram to her widowed father in Florida. The telegram wasn't returned but it wasn't answered, either. Frederico's father's mother, who lived in the Bronx, visited him in the hospital once, I was told. She had custody of Frederico's 5-year-old brother, whom she'd sent to Puerto Rico to live with relatives. But no one in Frederico's father's family was willing to take Frederico. Nor was Mr. Schult, ailing himself, able to.
At 2 1/2, Frederico couldn't talk. He couldn't sit up or stand. He couldn't hold a bottle. Since he'd never had any of the cancers or opportunistic infections that spell AIDS, his official diagnosis was AIDS-related complex, or ARC. He had not, however, escaped the stigma of AIDS. Sister Marie Barletta, his patient advocate at the hospital, had to argue long and vigorously with authorities and submit reams of paperwork to get Frederico into a rehabilitation day-care program elsewhere. Unfortunately, just when he was about to go to day care, Frederico got a temperature, so day care was postponed.
The hospital personnel and the volunteers who held and fed Frederico did the best they could.
The day Sister Fran took me to see Frederico, he was sleeping. we stood side by side, peering into his crib.
That day, he was wearing mitts made of stretch-knit bandage material knotted at one end and fastened around his wrists with adhesive tape. These were to keep him from scratching himself or pulling out tubes; sometimes Frederico had to be fed formula through a nasal-gastric tube taped to his cheek and nose, and sometimes he had to be given antibiotics intravenously.
The nurses on Frederico's floor noticed that he picked up everything, every little fungus, every little infection.
Stuffed animals were lined up at the head of Frederico's crib. A musical mobile of circus animals in primary colors was fastened to the headboard. A heart-shaped balloon with the words "I Love You" was tethered to the rail. Frederico was propped up in an infant carrier in the crib, facing a blank wall with a bed-lamp on it and a red sign that said No Smoking/ No Fumar.
I stood next to Sister Fran, looking at Frederico. I heard a ringing in my ears. I almost bolted out of the room. Somehow, I kept my feet planted where they were on the floor.
I'd seen eyes unblinking from lesions. I'd spoken into deaf ears. I'd held the hand of a dying man. But nothing prepared me for this.
Frederico was beautiful. In his sleep, he expelled little sighs. His eyelids twitched. He was very fair, with light brown curly hair. His skin was translucent. You could see violet veins through the skin of his eyelids.
I wanted to snatch him out of his crib, snatch him up and run away with him. It was all at once horribly, cruelly clear that I wanted for Frederico what I wanted for myself, and I was powerless.
Later, walking down the hall beside Sister Fran, I struggled to retain my composure.
"It's good the nurses saw you with me," Sister Fran was saying. "Now you can come visit him lots whenever you like, and there'll be no questions." Sister Fran has her ways. She knew I'd come back.
And I did, more than once. I held Frederico in my arms. He smelled like urine and baby powder, and he was quite a handful. He squirmed in my arms. I was a stranger. He didn't know me. He wanted to be put down.
The day I first saw Frederico, when Sister Fran was distracted for a moment, I took Robert the bear out of the plastic bag l was carrying and set him down among the other stuffed animals in the crib. I had felt I shouldn't come empty-handed. I knew Edward would approve. What I didn't know was that Edward had AIDS and would die before the year was out.
Irony of ironies, Jim outlived Edward, the counselor sent to aid him in his affliction.
Today, Jim lives in a modest bungalow house on a tree-lined street in Houston, where I visited him last June. He's something of a celebrity and has served on the board of the local AIDS foundation. He spends lots of time every day on the phone, dispensing comfort and advice to other people with AIDS. Among his other distinctions, Jim is probably the only man with AIDS in Texas who has lived through the mandatory two-year waiting period there to collect Medicare.
As we sat talking in Jim's living room, I noticed, on the mantelpiece, the stuffed piranha Edward once brought back from Brazil and gave to him, joking that, "This is what you look like when you don't get your way."
I remember vividly my reaction to the piranha, when I first interviewed Jim in New York three years ago with its slimy hide and repulsive grin, it was the perfect image of AIDS to me. Now it seemed strange to see it in a living room in Texas, alongside all the ordinary things people accumulate. Still fearsome, still bristling with malevolence, the piranha had nevertheless somehow grown familiar, almost domesticated, like the gnawing terror Jim and I and thousands like us have had to learn to accommodate.
Every time he has to go to the hospital, Jim told me, he takes along the piranha. It's a kind of talisman.
A week after I got back from Texas, Mr. Schult called to tell me Frederico was dead.
Things had been looking up for Frederico. Sister Barletta had finally gotten him into day care. The agency had placed him in a foster home. But on his second night outside the hospital, inexplicably, Frederico turned blue. By the time the ambulance arrived, he was dead. And for some reason, I was told, the emergency medical service didn't even try to revive him.
I went to the funeral parlor. The long, low, dim basement room in East Harlem seemed full to overflowing with grieving women - Sister Barletta, the women from Frederico's daycare center, nurses and volunteers who'd taken care of Frederico in the hospital- all of them asking why.
Frederico's body lay up front in a little coffin lined with swagged white satin. He was dressed in a blue playsuit with speedboats on it.
"You dressed him in a playsuit," I said to Mr. Schult, at my side.
"And now he's at play," Mr. Schult sobbed. "He's romping in heaven now with Jesus like he never was able to down here."
I held Mr. Schult's arm tightly until the sobbing passed. I couldn't help but notice, the coffin was too small for the top of the catafalque. You could see gouges and scrapes and scars in the wood in the parts the coffin didn't cover. I looked down into the coffin, at the body beyond help. I agreed aloud with Mr. Schult that Frederico was in heaven now, because it seemed to make him feel a little better.
I don't know why, but I always thought Frederico would live.
George Whitmore is a freelance journalist and the author of "Nebraska," a novel. This article was adapted from "Someone Was Here," a book of reportage on the AIDS epidemic, to be published by New American Library in April.