The Gifts of the Body

Losing

WHEN A WRITER DIES, all the books she or he might have written die, too.

I first heard about AIDS in an article in the New York Times on July 3, 1981. I was soon to be nineteen and had just finished my freshman year of college. The headline was “Rare Cancer Seen in 41 Homosexuals.” Scary. But not too scary. I mean, after all, it was only forty-one.

So I didn’t give it much thought. The next year, I took a break from college. I went to Los Angeles in what would have been my fall term junior year to make my fame and fortune in television. I found work as a temporary secretary, a substitute English teacher, and a production assistant for a television show; then I landed a job as personal assistant to a director. He needed someone who could type and drive. My driving isn’t nearly as good as my typing. In fact, it’s terrible. But he didn’t seem to mind.

I was twenty, living on my own in Los Angeles, and I went a little wild. I had a boisterous group of pals, and we would meet nightly at a bar called Motherlode before heading off to dance at Studio One (which had the motto “For the Eighties”). To the intoxicating beat of “Muscles” sung by Diana Ross and “Searchin’ ” by Hazell Dean and “State of Independence” by Donna Summer and “Mickey” by Toni Basil and “Maneater” by Hall and Oates, we would gather, dance, gossip. It was a motley crew: a larcenous kept boy with shoulder-length blond hair; a gorgeous dancer I adored (he is still one of my favorite people), who could hold a pencil between his pecs; the dancer’s volatile roommate, who had a wickedly caustic sense of humor—these were a few of the gang. We had endless time for one another and never seemed to have to buy a drink: they simply appeared. In our crew there was also a blandly handsome fellow named Edward. Edward and I weren’t particularly drawn to one another, but if the lights came up and there was no one else left around we might just go home together. Or at least we did five or six times, and wound up doing just about everything two guys could think of to do.

Then Edward stopped showing up night after night at Motherlode, and eventually I called him. He felt terribly ill, he told me, but he wasn’t sure what was going on: he kept losing weight; his glands were swollen; he woke up in the middle of the night drenched in sweat. He was a little scared, if only because no one could figure out what was wrong with him.

I offered to take him out for a meal if he was up for it, and we went to IHOP, the International House of Pancakes. I made him eat their chocolate-chip pancakes—to put some weight on him, and also because they are so delicious. That was the last time I saw Edward. He moved back to Hawaii.

During and right after our IHOP meal, I didn’t give Edward’s illness much thought. He could have had a flu or a stomach bug or any one of a million ailments from which one soon recovers. But later word came that he had died, and no one knew why. It was all very strange, but none of us had been that close to him.

When I returned to college in spring 1983, I reconnected with my parents’ friend, and by then mine, the writer Larry Kramer. He was devoting all his time to a group he’d cofounded, Gay Men’s Health Crisis. More and more people were dying of what was first called GRID—gay-related immune deficiency. Talking with Larry scared the hell out of me. Especially when I realized that Edward had almost certainly died of what is now called AIDS.

Larry convinced me that this disease that was affecting hundreds of people would soon affect thousands and then millions. But no one was doing or saying a thing about it. A Tylenol poisoning that killed seven people had been front-page news day after day; so had an outbreak of Legionnaires’ Disease a few years before that had killed twenty-nine people. But here was a disease affecting gay men, for the most part, and because of that no one seemed to care.

When eventually AIDS did start to get press, the result was hysteria. Fifteen percent of the country thought people who had AIDS should be tattooed to identify them; more than half the country thought everyone with AIDS should be quarantined. The atmosphere was more horrible than it is possible to describe. Hospitals turned away dying people at their doors. Those lucky enough to be in a hospital often weren’t brought food—it was left outside the room door. People with visible lesions were shunned in the streets and turned away from businesses. So were people who just “looked” or “acted” gay.

The disease subsumed my last two college years. I staged fund-raisers and volunteered for the newly formed AIDS Project New Haven, leaving the campus one or two evenings a week to work as a volunteer on their hotline. It was challenging to reassure callers when there was no reassuring information to share. I certainly didn’t feel reassured. In my head, I did the math. Everyone who had this disease was dying. There was Edward. He was dead. There were so many others that I’d been with, in Los Angeles and before. (Even before “officially” coming out at age eighteen, I had been making up for lost time.) And so many of them were sick.

I figured it was likely I wouldn’t see thirty, or even twenty-five. And there was also the dread-filled thought that perhaps I had unwittingly condemned others to the same fate, a fear that was so intense that I shared it only once, with David Baer, and never mentioned it again to anyone. David was one of the few people in whom I could confide; he had the same fears.

Being at college during this period was surreal: my days were spent in dining halls and classes with people whose biggest care in the world appeared to be whether they would or wouldn’t pass a certain test or get a paper in on time or land a part in a play; many of my evenings and weekends were spent talking with young men who were dying.

Volunteering was how I staved off panic.

So I also volunteered for Gay Men’s Health Crisis (now referred to mostly as GMHC) when in New York on vacations—occasionally as a buddy bringing groceries to those homebound, but mostly on the hotline. The hotline was run from a tiny room in a brownstone building in the Chelsea neighborhood of Manhattan. I had a routine: work as a temporary secretary during the day; then buy a burrito from a shop called Kitchen in Chelsea; then scarf down bites of it as I sat for hours answering call after call after call.

My supervisor at GMHC was named Barry. He was tall, gangly, mostly bald, and had an acid tongue. That was all I knew about him; Barry wasn’t one for small talk. Or at least not with me.

Night after night, I fielded awful calls. And what made it more awful was that we still had so little information and so few resources. There was often almost nothing we could do other than listen.

Then, one night, I reached my limit. I had talked to a young man who was sitting at home with the corpse of his lover and couldn’t get a single funeral home in the city to take the body away. I’d helped him dial his way through our list until finally we found one. Another call was from a guy who was in NYC illegally and wanted to know if he could be deported for being sick. He was sobbing. Or maybe he was having trouble breathing from PCP pneumonia. I could barely hear him. I kept having to say “Excuse me” and “Could you repeat that?” We had a lawyer who might have been able to help him, but I couldn’t get the guy on the phone to trust me enough to leave any information or visit during the day. Another call was from an older man, gay but not out of the closet, whose glands were swollen and who was having terrible night sweats. Was it AIDS? This was still years before there was any kind of test, before anyone knew what caused it, before anyone really knew what it was. All I could tell him to do was to see a doctor. I had one I could recommend.

The phone rang just as I was getting ready to head out.

“GMHC Hotline, can I help you,” I said.

The voice on the other end of the phone belonged to a young woman.

“How do you know if you have AIDS?” she asked.

“Well,” I answered. “There’s no test, but it’s diagnosed when you have one of the opportunistic infections associated with it. There are some symptoms that many people have, though. Night sweats, swollen glands that have been swollen and stay swollen for several weeks, weight loss. But those could be other things, too. In fact, if you check your glands too often, you’ll make them swell. They aren’t made to be constantly prodded.”

There was silence on the phone.

“Do you have any of those?” I asked.

“No,” the young woman said.

“Any other physical symptoms. Lesions? Anything?” I then was sure to add, “You know I’m not a doctor. So I can’t diagnose anything, and even if I was, I couldn’t do it on the phone. If you’re worried, you should really just go see your doctor. If you don’t have a doctor, I can give you the name of one.”

“Okay,” she said. “But how do you get it?”

“Well, we don’t really know. But it seems to be sexually transmitted. It also seems to be passed among IV drug users sharing needles.” As trained, I didn’t press.

“Well, I’m scared that I got it. You see, I think my hairdresser is gay.”

Suddenly, I had a sense where this call might be headed.

“Okay,” I said. “That wouldn’t be unusual. There are a lot of gay hairdressers.”

“Yeah,” she repeated. “I’m pretty sure he’s gay. And I just came back from the salon. And he washed my hair. And now I’m thinking that he might have given me AIDS. You know. He had his hands in my hair.”

“Oh my God,” I said, unable to keep that to myself. I then went way off script. “Look, I have to ask you a question.”

“Okay,” she said.

“Do you have a pen and paper nearby? And a small suitcase?”

“Yes,” she said.

Barry seemed to appear from nowhere. I don’t know how he knew what I was going to say next, but he grabbed the phone from my hand and calmly reassured the young woman. After he was done, he turned back to me.

“And why, might I ask, even though I think I know, were you asking that caller if she had a pen and paper and a small suitcase?”

I fessed up. I was about to tell her to write a note to her family saying goodbye, scribble a quick final will and testament, and then pack some small items in the suitcase and go right to the nearest emergency room to spend the short time on earth she had left.

“That’s exactly what I feared. Maybe you need a night off.”

“But really, Barry! From her hairdresser? Because he might be gay? What an idiot! What a hateful idiot!”

I was furious. At her. And at Barry.

“Take your burrito, and get the hell out of here. I’ll see you tomorrow. Less hysterical and more compassionate, please.” As I closed the door, I think I heard Barry laugh. But he never admitted to me that he thought it was funny.

—

For decades, I tried not to think too much about that time, mostly because I couldn’t. It’s as though it all happened to someone else, somewhere else. I couldn’t remember how I felt. I remember the common phrase people would share, that it was like some of us were at war, and we were surrounded—at work, on the subway—by people who were at peace. Even though I was in my twenties, I just got used to the fact that friends got sick and died: after Edward, there was Hugh and Stan and John and Jim and Craig and so many more. It didn’t stop being sad, horrible, terrifying. But it stopped being weird. It just was.

One book I read recently brought it all back: The Gifts of the Body by Rebecca Brown, the sixth book by a writer who has gone on to write six more; her work includes essays, a memoir about her mother’s death, plays, and story collections.

The Gifts of the Body is a slender novel in eleven connected stories, narrated by a home-care worker as she describes her visits to various people with AIDS. Each chapter is named for a different “gift”—the gifts of sweat, wholeness, tears, skin, hunger, mobility, death (yes, death), speech, sight, hope, and mourning. Perhaps the author had been reading Anne Morrow Lindbergh’s Gift from the Sea when she decided on this structure. And there is something similar in tone: both are quiet and thoughtful books.

But the subject matter is totally different. The Gifts of the Body is a book that captures not just the horrors of the early years of the AIDS plague but also the toil, drudgery, mundanity of it all. There are stories here of women with AIDS, though most of the people the narrator visits are gay men.

Brown was a home-care worker. I know this only from her bio on the back of the book, but I think I would have been able to guess it regardless. The observations throughout the book aren’t just convincing—they have the immediacy of entries in a diary.

“I cleaned the bathroom,” she wrote. “I shook cleanser in the shower and sink and cleaned them. I sprayed Windex on the mirror. When I was wiping it off I saw myself. My face was splotched. My t-shirt had a dark spot. I put my hands to it and sniffed them. They smelled like me, but also him. It was Rick’s sweat. I put my hands up to my face and I could smell him in my hands. I put my face in my hands and closed my eyes. I stood there like that a while then I went to the kitchen.”

She also wrote: “He wasn’t getting any better. He was just getting worse more slowly.”

And: “His sores were dark purple and about the size of quarters. The edges of them were yellow and his skin was dark brown. The sores weren’t running or oozing or scabs because they always had this salve on them…I changed gloves several times when I was doing the salve because my gloves got coated with it, and also with his hair, which was very tight and curly and fell out easily, and with flecks or patches of skin. I think he felt embarrassed to have it done except it would have been worse not to have it done.”

The Gifts of the Body reveals much about the lives of home-care workers. The author describes the paperwork, the scheduling, and the team meetings where they share their stories of their clients and their work, and seek help and advice and, sometimes, comfort from one another. But it’s the clients who are most vivid, along with their friends, lovers, former lovers, and occasionally relatives who look after them. We learn about their jobs, their pets, the foods they like, their travels.

Two stories are about a man named Ed. In the first, “The Gift of Tears,” Ed finally gets a coveted place in a hospice. But he’s not ready. He explodes with rage, lashing out at the narrator, and then he is overwhelmed by grief but unable to cry, because something is wrong with his tear ducts. In the second, “The Gift of Mobility,” the narrator goes to visit Ed at the hospice; she describes hugging him goodbye as usual:

When I was about to take my arms away he squeezed me tighter.

“I’m sorry I haven’t been very nice lately,” he said into my hair.

“Ed, you’ve been fine,” I said. But I knew what he meant.

He was holding me, so I couldn’t see his face. “I don’t like being here anymore,” he said. “I wish I could go away.”

“I’m sorry, Ed,” I said. My cheek was against his chest. I could feel his ribs.

“Everybody here dies,” he said.

I squeezed him. I could hear his pulse, his heart. It sounded so normal.

“Remember when the guys used to think Super Ed would beat the system?”

I nodded. “Yeah.”

He squeezed me and took a deep breath. His lungs sounded normal too. “All the guys who named me Super Ed are dead.”

The Gifts of the Body was published in 1994. Rebecca Brown was writing in the midst of those many years—more than a decade—between when the plague was first reported and when finally, miraculously, thanks entirely to activism, medicines were discovered that can now keep it at bay. She writes about how, initially, everyone thought there would be a quick cure, and then how everyone came to believe it would never be cured. (I should note: there is still no cure.) About how people died quickly at first and then managed to live a year or two with the treatments at hand, but everyone still died: “After they died you missed them. But also there was a way you missed them before they died because you knew they were going to die.”

She continues, “It took the epidemic going on for many years before there were any hospices. First there was one, then another. People could only go there when they had less than six months left to live. The idea was to have somewhere ‘comfortable’ to die. When the hospices opened there was a huge waiting list for the rooms, so you were lucky if you got one. But there was a quick turnover because everyone died so quickly. But the waiting list kept growing because more people got sick.”

The Gifts of the Body did what my memory couldn’t or wouldn’t. It reminded me how I felt during that time. And maybe even taught me something about the smart-ass twenty-year-old answering phones in a little office in a brownstone in Chelsea, who was often too scared to think or feel.

When I do think back on those times, I try to remember all the people I knew who died. Every single one I can. That’s what matters. Sure, how they died matters; why they died matters; how many died matters. That all matters, desperately, terribly. But who died matters more than anything else.

I think about my friends. I think about people I admired. And I often think about the writers. The world lost brilliant writers to AIDS: Paul Monette, Melvin Dixon, Robert Ferro, Michael Grumley, Assotto Saint, Stan Leventhal, Essex Hemphill, Vito Russo, Joseph Beam, Bruce Chatwin, John Boswell, Arturo Islas, Randy Shilts, and John Preston, to name a few. And then there were the readers. The world lost to AIDS hundreds of thousands of readers, who would have read and discovered and debated and been changed by these and so many other writers.

In Berlin there’s a monument in Bebelplatz to make sure we never forget the May 1933 book burning by the Nazis. You can easily miss this monument—it’s simply a glass square set among the cobblestones. When you stand on the glass, you look down into a cavernous white library—a library that is totally empty. Set deep into the square below the glass paver on which you stand is row after row of empty white shelving, enough shelf space to store all of the twenty thousand books that were burned there: books by Albert Einstein and Rosa Luxemburg and Erich Maria Remarque.

We can read the books that were written, books like The Gifts of the Body, and remember. But we can also remember the books that will never be written. And the readers who will never be there to read them.