It starts with a nosebleed and ends with a dead guy. Three dead guys, actually, and one of them is Ed Koch.
Something remarkable happened after Koch’s death: the New York Times rewrote his obituary. In the first version, nobody said what many people knew, and had long known: that Mayor Koch in his two terms in office as the highest ranking public official in the biggest city in the US and world financial center presided over a health crisis that was quickly going global and would, by the end of the 1980s, kill 50,000 Americans (as many Americans as died in the Vietnam War).
Ed Koch was responsible for the deaths of thousands of New Yorkers, said nearly everyone I knew who lived in New York City from 1980 to 1989. A war criminal, some said, and: a sell-out to real estate tycoons, a mischievous player of racial politics, egregiously Manhattan-centric (Manhattan below 125th Street), a fake liberal, de facto Republican, a gay man who had remained strategically closeted for political gain, a gay man who did not respond to the AIDS crisis with any deliberate speed because he did not want anyone to think he was a fag taking care of dying fags.
Forget Ed Koch. What struck me was that a lot of people, not just those I knew in real space/time but people I had “met” only virtually, many of whom were consistently and almost comically reverent about death – all the schmaltzy well-meaning Youtube and Facebook and Twitter tributes to the merest no big deal dead celebrity – were so outraged by Koch’s mayoral record, even now, that their immediate response to news of his death was to go online and call an 88-year-old-man, a famous now dead public servant, his body barely cold, a murderer.
More remarkable to me, however, was the number of people who did not seem to have the slightest idea why anyone would call Ed Koch a murderer.
I wondered if we had lived in the same place at the same time. Did we live in this city together all that time?
I meant to end, not open, with Ed Koch, but once I got started with him, his failures rerouted my narrative, the story of my life.
To begin again:
I got a nosebleed on the way to see The Normal Heart, Larry Kramer’s play about AIDS and the founding of Gay Men’s Health Crisis. Actually, I saw it twice: in 1985, in its first production, downtown at the Public Theater; and twenty-six years later, when it opened on Broadway for the first time, in a revival staged in the spring of 2011. I was twenty-six years old the first time I saw it. And because I was boyfriends from 1983 to 1989 with a guy who was for some of that time Director of Group Services for GMHC, I knew, had met, watched die, many of the people on whom the characters in the play were based. People who had sat for Kramer’s composite portraits: Paul Popham, Paul Rapoport, Nathan Fain, Enno Poersch, Mitchell Cutler, Dan Bailey, Rodger McFarlane. . .
Seeing The Normal Heart again after twenty-six years would be like watching a lot of upsetting home movies. When I finally bought a ticket, there was nothing left but the next-to-last peformance, a Sunday matinée. I was living then in an apartment that was two long and three short blocks from the Golden Theater, and I left home in plenty of time to get there before the curtain went up.
Suddenly my nose was bleeding. I knew right away it was blood, because it ran straight and fast the way blood runs from a burst vein, as if you’d been punched or whacked in the face by a fly ball or forced suddenly to live too high above sea level. I didn’t have anything like a handkerchief. Not even a wad of Kleenex. I tipped my head back, and hoped. I was on a crowded street in midtown on a summer day, near Amy’s Bread, standing with my head way back and my fingers hiding my face, which was bloody. I didn’t want to make my shirt a rag. I didn’t see how I could walk blood-soaked into Amy’s Bread, saying, “Excuse me, does somebody have a napkin?”
My long-ago best friend, David B. Feinberg, novelist, activist, journalist, who died of AIDS in 1994, had lived five blocks from where I was standing. I had often walked with him down 9th Avenue, before and after he got sick, before and after he needed help to walk anywhere. Eventually, I had to watch him lose control of his bodily functions, sometimes in public. Maybe Dave was sending me a nosebleed from the beyond. It crossed my mind. I don’t often get nosebleeds, or even a cold, and I felt exposed, bleeding all over myself on the tourist-encrusted sidewalk, trying not to splatter anyone but myself.
I walked half a block north to the Starbuck’s, dashed in, grabbed a handful of napkins, and ran outside to the small park two doors down. For fifteen minutes, I sat on a park bench with a napkin up my nose. Then I washed off in a water fountain, cleared my throat, and ran to the theater. A big glob of blood came up in my throat, which I spit in the gutter on 47th Street. “Okay, so now I’m spitting blood.” It was not the worst thing that happened, to me or anyone else. I got to the theater on time.
I don’t know what to say about the play. I mean, I knew the story. It was traumatic because I knew: the familiar plot, the characters I recognized, everyone’s inevitable death. The ending clear from the outset like in Oedipus. Actual bodies I’d seen collapse in the real world given life again onstage, only in order to die again, onstage. The packed theater audience, full of what I assumed were straight couples in their 50s. My age, my generation, as far as I could tell. Baby boomers. They had lived through the AIDS crisis, they had been there when it happened. Were here now. And yet, the vibe in the room was: “How could this have happened? Could this have happened? Did it really happen? I can’t believe it happened.”
Okay, interpret a vibe. Read an affect, a big silent collective tone. How could I know what people in the audience were thinking? I couldn’t. I could only sense. I’m saying I heard a tone in their sobbing. People were sobbing. I sat in an aisle seat thirteen rows back and way to the right, feeling out-of-it, because the audience was reacting to the show as if it were news.
All around me, people were gasping with shock and surprise, as if everything that I had learned to take for granted in my twenties and thirties and ever since, unrelenting trauma and loss, hadn’t occurred to them. As if the intensity I had grown to expect from friendship and love – the intimacy of knowing that each new relationship, new friendship, would end in death, end very soon – had never occurred to them. Hadn’t it occurred to them?
“Trauma isn’t intimacy,” a shrink once told me, years after everyone had died. For me, however, trauma was a daily experience for a long time. It was how I got close to people, and how they went away. Trauma was always there and inevitable, like weather.
The guy next to me in Row J was antsy and all elbows and he was halfway in my seat. I spent the play scrunched to the right and clutching my armrest to stay out of his way. I couldn’t breathe. The play was like that, and my life had been like that. Paul Rapoport, one of the founders of GMHC, had come to my twenty-fifth birthday party. So had Raymond Jacobs, Diego Lopez, Peter Kunz-Opfersei, Jim Christon, Luis Jiminez-Alvarez, Richard Gambe, Ken Wien, DeeCee Husband, Edwin Alexander, people who had worked at GMHC and/or used its services. Some of them were dead within two years of that party, some in five. Only one of them was still alive by the time I turned thirty.
The audience was sobbing in a tone of disbelief during the play’s most upsetting speech, when a guy named Bruce Niles tells the story of getting on a plane and flying his dying lover from New York home to Arizona. The lover dies on the way. First, the pilot won’t leave the ground because a guy with AIDS is on the plane. They get a new pilot. The plane takes off. The lover shits and pisses all over himself on the plane. He’s dead by the time the plane lands. Police cars are waiting to take him off the plane, the police officers dressed in full-body prophylactic latex, looking “like astronauts.” Nobody wants to touch the body. They get it off the plane, take it to a hospital, where it ends up wrapped in a plastic trash bag and left outside the hospital, like garbage. The mother and the dead guy’s boyfriend carry the bagged body into her car and drive it to a mortician, who finally consents to burn it.
I understood this of death to be not melodrama, not a cry for help, not a dramatization of loss, but: documentary. I knew every word was true. It wasn’t sad, it was fact. It wasn’t just sad. It was fifty people I knew who died, and the way they died. It was one hundred people. How do you feel when you look at a photograph of war dead, spread across a barren field or draped over charred jeeps and tanks, how do you react to that photograph when you know you’re standing to the left of the frame, just outside of the camera’s view?
So many disasters, so many public, epic catastrophes have reached us, ruined us, affected us. News of epidemic loss fills our daily lives, virtual and actual, our Twitter accounts, our Facebook newsfeeds. Nobody can talk about US history anymore without saying, “before 9/11” or “after 9/11.” Katrina, Sandy, Newtown, Trayvon Martin, Kimani Gray, a Sikh temple in Milwaukee, Aurora, Virginia Tech, Boston: we measure our lives in catastrophe. And yet there is still an unshakable aura of otherness surrounding AIDS that prevents even people newly exposed to the disease in 2013 from seeking treatment – because they are ashamed, because AIDS happens, not to us, but to them. People are ashamed to say what happened to them.
What happened to you?
Here’s what happened to me:
Facebook. And twenty-five years. Not in that order.
A year ago, on the verge of the 25th anniversary of ACT UP New York’s first action – the 1987 protest at Wall Street to confront the world financial community with its complicity in the neglect of AIDS – an ACT UP NY member and doctoral candidate in NYU’s Theater program, Debra Levine, was finishing her PhD dissertation, Demonstrating ACT UP: The Ethics, Politics and Performances of Affinity. And she wanted to include as part of her thesis an accounting of AIDS-related deaths: a list of all the ACT UP members who died, either during the early period of ACT UP’s history, 1987 to 1996, or in the sixteen years that followed. She posted a thread to Facebook’s ACT UP NY Alumni page asking for names and dates. And from January to April, her thread was a spontaneous collective ongoing elegy, a profoundly apt prelude to the 25th anniversary action that ACT UP had organized in concert with Occupy Wall Street.
Every day for weeks you could scroll down the thread and see new names, not just of the dead but the living. One of the peculiarities of having lived in New York during the last three decades of the 20th century was that you were never sure whether people with whom you had lost touch in your/their twenties and thirties were still alive – whether they had moved to San Francisco or Santa Fe or Montclair, New Jersey; whether they had fallen into a post-AIDS K-hole; whether they had gotten married in Vermont and adopted a baby in China and were running a gay bed-and-breakfast; whether they were writing their memoirs; whether they had gone home to a small town in Georgia to get over everything they had lost, or not get over it; or whether they were dead, long dead or recently dead. It was as surprising to see names of people who were still alive as it was upsetting to find out that long-ago friends you thought were okay had died.
A mournful and a celebratory scroll, commemorating the dead and compiling a record of their individual and collective accomplishments, what we endured alone, and what we managed together. People delivered on-the-spot eulogies for friends who had died without sufficient remembrance. People who had not spoken to each other in years were again in contact, if only online. People memorialized and recalled and confessed and corrected. And though we have all been subjected over the past ten years to a surfeit of grief porn, accumulating since 9/11 and flooding the Internet, nonetheless, the thread was not an advertisement for loss. I don’t mean just that it didn’t market loss, but also that it didn’t merely represent or recall loss. It was loss. To scroll down the thread was to feel the experience of loss, again, and for the first time. It was the loss, and its consequences. And it was the story of that loss.
And though it was on Facebook, nonetheless, it felt private. I shouldn’t even be talking about it. I’m still not sure if people who were not members of the ACT UP NY Alumni page could read it. I’d like to keep it to myself, though it’s not mine to keep. It’s not mine, but it’s yours, and everybody’s: a naming of the dead, our history.
Ours, and now Mark Zuckerberg’s. Facebook was holding onto my past. Had I outsourced my memory to Facebook? Was I “reinforcing my victimhood by talking about it too much,” a phrase that came up, both earnestly and ironically, “victimhood” in and out of quotes, in a series of subsequent threads on Facebook’s ACT UP NY Alumni page and elsewhere, written and read last winter by AIDS activists and past and present ACT UP members, people living long-term with HIV, caretakers and survivors of friends and lovers and family members who died of AIDS – all of us, in other words, who got out of the 20th century alive and were beginning (or beginning again) to ask ourselves about the first fifteen years of the global AIDS crisis, 1980 to 1996 in NYC and San Francisco and Los Angeles and everywhere? And to wonder what happened?
To wonder both what happened then, at the time, and what has happened since, from 1996, when the AIDS “drug cocktail,” the life-saving antri-retroviral drug combinations, first became available, to now. This feeling: I was there, it changed my life, it was and maybe is my life, and yet sometimes still I don’t or can’t believe: what happened.
And I can’t believe you don’t know what happened.
What still happens, is happening now.
Then Spencer Cox died. Last winter, near the end of December. News of his death showed up in my Facebook newsfeed. I saw it in Deb Levine’s status update.
Shall I trust the New York Times? His Times obituary, written by Bruce Weber, said Cox had been “a prominent voice in the fight against AIDS for more than two decades,” a kid in his twenties when he joined ACT UP, a gay man living with HIV, “whose work with a cadre of lay scientists helped push innovative antiretroviral drugs to market, creating the first effective drug protocols to combat the syndrome.”
He had helped get approval for the drugs that kept him and other people alive, worldwide. And he had reportedly stopped taking those drugs, not long before he died in New York City at the age of forty-four. No one knew why. No one who knew was able to say why. He died in 2012 as he might have died in 1992, when there were no effective drugs for treating HIV/AIDS.
More newsfeed postings, more Facebook threads, more updates. I didn’t know Spencer Cox, except from a distance at ACT UP meetings and demonstrations in the early 1990s, and then much later, as an internet boulevardier whose Facebook posts in the last year of his life were scorching and hilarious. They were more than that. They were a signal we had read but ignored. Understood but failed to grasp. His death shocked a lot of people because they must have expected it. Expected his death, or somebody’s, or mine, or yours. Maybe that was the surprise, that we had known but not admitted that the loss was still taking place, that so many of us were still at risk, and that the mourning we had been sharing online, or in private, or at Spencer Cox’s memorial service, was not only for him, but us.
“After all of our friends died in the ‘80s and early ‘90s, protease inhibitors came out, and there was no mourning about what we had all been through,” ACT UP member Peter Staley had told Frontline in a 2005 interview. “We just moved on.”
I said I would end with a dead guy. I meant my friend David Feinberg, who died of AIDS in 1994. That’s his name, now: “My-friend-Dave-who-died-of-AIDS.” It’s how I refer to him, in a tone that is his, not mine. His voice is my transitional object. That’s how I’ve kept him. I knew him five years. I can’t picture us, back then, but I hear him. If you had met him, you’d hear, too. You would go back to the start of this essay and read it in his voice. His voice when he was dying.
Nothing I have ever seen or heard or said has been anything like David when he was dying.
I had already watched one hundred people die. In my youth and stupidity, I would say stuff like, “Death can’t surprise me anymore.”
I was wrong.
No one had ever died like David. Not Cleopatra. Not Robespierre. Not medieval Sodomites with their bodies tied to two horses and ripped in half and then in half again and their heads put on spikes and raised high above London Bridge.
There is cruelty in death inflicted. There is incredulity in death witnessed. There is death written down and re-lived for centuries after.
David inflicted his death on everyone who cared about him, and I couldn’t believe it. And I am still writing it down.
Riding my bicycle back and forth in the fall of 1994 from my East Village apartment to his room at St. Vincent’s Hospital above the intersection of 7th Avenue and Greenwich Avenue and West 11th Street – that juncture, that hospital that is now being turned into luxury condominiums – ; riding across town late at night after having spent most of the day with David, I said to myself, “I can’t believe this is happening. I can’t believe this is happening.” Said it out loud, and it’s all I said. I’m not sure I existed except in that phrase, as that phrase. The words meant nothing. They were a form of breathing. “I can’t believe this is happening,” I said. “I can’t believe this is happening.”
I knew it would happen. I had watched, like I said, people die. I had watched people watch people die.
I watched David, and I didn’t believe it.
I watched him as he lay in his hospital bed, or rather, writhed in his hospital bed, caroused and slept and harried and mortified from his bed. Snapped photos of visitors with his Polaroid camera. “Say cheese,” he barked, as they walked in the room. And he caught them. They were caught. He was not caught. Their eyes in the light, their face in the frame. And he pinned their trapped and worried hospital-visitor faces to the wall of his room as evidence, accusation, decoration, fury, and fun.
In the hospital room, I watched him. And then he got out. And I followed him, and so did many of his friends while he gave his farewell tour, as if in example, as if Cher were taking notes. Take that, Cher!
He got out of the hospital and went shopping.
He got out of the hospital weighing ninety pounds and with two weeks to live and drove around town in a taxi handing out signed copies of his just published book, his last, to all the cute boys and magazine editors who had ever rejected him.
We took a cab to Midtown and rode an elevator up to the receptionist’s desk at the New Yorker, and left a copy of his book for Mr. Shawn, the Editor-in-Chief.
He got out of the hospital and attended a reading of his play, The Pathological Flirt at the Theater for a New City.
He got out of the hospital and saw other people’s plays, two plays, three plays, carrying his portable IV bag, chatting loudly with the matinée ladies while he waited for the house lights to dim.
He got out of the hospital and threw a theme party, “I’m Still Standing,” which was not true, because he wasn’t standing. He was crumpled on his futon couch on a Sunday afternoon in his one-bedroom apartment so crowded with guests that it was hard to find his small body in the corner of the room. Because of his diarrhea – which, nature’s joke, managed to be both constant and unexpected – he had to get off the couch and run to the john at regular intervals. “Out of the way, out of the way,” he yelled, pushing guests aside, dribbling watery shit, and I followed behind, mopping up.
He got out of the hospital and headed for an ACT UP meeting at the Lesbian and Gay Community Center, weighing less than 90 pounds, his white jeans falling to his knees, his portable IV bag in my hands and draining pentamadine into his body through a clear plastic tube that stretched between us. He wanted to stage a one-man zap of ACT UP, which he had joined in 1987. The group had a tradition of members taking the floor and asking, “Where is your anger?” Shouting, a rant. A battle cry. After a period of especially painful governmental or medical inaction. A drug was released, but no one could afford it. More people died. Clinical trials to test new drugs were initiated, but who got to participate? More people died.
“People are dying, what are you doing?” was a chant. “We die, you do nothing,” was a chant.
Not a chant, but an update.
Dave stood in the middle of the room in his drooping pants and shirt that showed the bones in his back, his Hickman catheter plugged into his chest.
“I’m dying,” he yelled. He was not saying it to prevent it. He was not saying it to know it. He was not saying it to get over it. Maybe he wanted you to stop it, but no one could stop it. Many people had refused to stop it. Now he was doing it. He was it. A performative statement. “I’m dying,” he said, a verb of action that was also verb of being.
He died a week later. Most of what I knew as “David” was already gone.
“I’m dying, I’m dying, I’m dying, I’m dying, I’m dying, I’m dying, I’m dying.”
He used to leave that message on my phone machine. I’d go to his hospital room in the afternoon, stay long past midnight if the nurses let me, bicycle home at two in the morning, check my answering machine, and David would already have left two or three messages, while I biked home. “I need sleep. I can’t sleep. I need to sleep. I’m dying. I’m dying I’m dying I’m dying.” Every night for a month, for six weeks, however long he was in the hospital just before he died. I would sit on the floor in front of my tape deck and make mix tapes, background music for his memorial service, dirges. Meanwhile my answering machine played his messages. “I’m dying.”
I was in love with him, I guess. What’s the colloquial phrase for, “If I love you enough, you won’t die?” He hated me so much, because I couldn’t get the drugs he needed when he needed them. He always needed them.
“If I said I was dying of AIDS,” he asked me, at lunch, on our first “friendship” date, in 1989, when everyone who had AIDS died of AIDS. And I thought, “I won’t let you die.” I had failed with everyone. Everyone died. Half the guys I knew in my 20s were dead, and I had split up with my boyfriend, finally, after six years, because our relationship had consisted of splitting up until we ran into each other in someone’s hospital room, someone who had just been delivered a death sentence, so we got together again for a while and then split up, and ran into each other in somebody’s hospital room, someone who had just been delivered a death sentence. . .
Play this tape over and over until you’re sick of it, and then keep playing it.
Dave bought me lunch on 9th Avenue and told me, in the tone of someone signaling for the check, that he was dying of AIDS. It was the first of many lunches, and he always paid. I was broke, he was working, and he would buy lunch and sometimes slip a twenty-dollar bill into my breast pocket and say, “John, am I enabling you? If I’m enabling you, shouldn’t you be able to do something?”
As he walked away that first day, I watched him go. He got smaller and smaller in the distance, turned back to wave. I waved. He kept going, then turned back to wave, and I waved. And he disappeared. And I thought – I remember this exactly – : “This time, I will love you unconditionally and you won’t die. Someone will finally not die.”
I was so fucking stupid. Narcissistic, OMG. Was I Jesus? I must have thought I was Jesus. And I was raised an atheist. He needed certain drugs, that was all, and he died eighteen months before they came out. Other people got as sick as David, and they lived long enough for the drugs that became available in 1996, and they are still alive, seventeen years later. Some of them, not all of them. If Dave were still alive, he would be 57 years old.
Trauma happens all the time. To some people, a hangnail is a trauma. Trauma is the way forward, not the deviation. Maybe it’s a shield. If I had not been protected/afflicted by trauma, if I had been able to believe at the time what was happening, maybe I would not have survived it. It sounds presumptuous to speak of “survival” when I know plenty of people who got closer to death than I did.
I don’t know how to end this. Anyway, it’s not over.
A prayer for the dead, then. For the living and the dead. To the dead Mayor: pick a random homosexual who didn’t die and then did. For Ed Koch, may his works and days be remembered, ficta voluptatis causa sint proxima veris: Fictions meant to please should approximate the truth.
John Weir is the author of two novels, “What I Did Wrong” and “The Irreversible Decline of Eddie Socket”.