Reading and Writing My Way Through the AIDS Crisis
Matthew Cheney Remembers the Books That Helped Him Survive
The last third of A Long Gay Book records the discovery of the new reality. She confronts a world of magnificent, joyous chaos where no connections are given, no relations taken for granted, and everything is perceived anew every day in all its heterogeneity. There is no need for a totalizing system to explain the world. The old “language [is] segregating” and a new way of saying is needed, which in turn becomes a powerful way of creating the new reality. A Long Gay Book shows the drama of this new way happening.
–Ulla E. Dydo, A Stein Reader
* * * *
I write this on the 35th anniversary of the first New York Times article about what would come to be known as AIDS. The article appeared on page A20 under the headline: “RARE CANCER SEEN IN 41 HOMOSEXUALS.”
I write this after reading an item from Elle: “17 Writers Share Their Most Important, Necessary LGBT Books: A vital reading list for Pride Month and beyond”.
I write this having completed my 40th year, healthy and pretty much happy.
I write this having, at one point, never expected to live through my thirties and never having expected to end up HIV-negative.
I write this, remembering.
I write this.
* * * *
If I had been invited to contribute to that Elle piece, I would have offered, for my gay book, the memoir Becoming a Man by Paul Monette.
Where did I learn about this book? I don’t know. What I know is that I read it soon after it was published, and I read the copy that Lamson Library at Plymouth State College in Plymouth, New Hampshire had on their shelves. I was 16 or 17 years old.
I expect I discovered it because I was then in the midst of writing a play about AIDS, and so I probably found Monette’s Borrowed Time first, since I was reading everything I could find about AIDS in the library. I certainly read Borrowed Time at almost the same time as I was reading Becoming a Man. But it was Becoming a Man that spoke to me most deeply, and that provided me with the first absolute sense of identification, of: This, yes, I am like this.
* * * *
(When did you know you were gay?
I don’t know. Am I gay?
How do you not know?
Feelings flow and drift.
Feelings are hard to recognize.
Feelings are hard to name.
I was terrified to name what I felt.
I was terrified to name myself by what I felt.
A name would be a fate.
A fate would be death.)
* * * *
When I was 16 or 17, I was writing a play about AIDS because to write a play about AIDS meant to write a play about a homosexual without having to say I was writing a play about a homosexual because I was not writing a play about a homosexual, I was writing a play about a Serious Social Problem. I wanted to be a Serious Playwright. I wanted to be Brecht.
(Why would I write a play about a homosexual? What do you think I am?)
When Angels in America, Part One: Millennium Approaches was published by TCG, I made a trip to Boston specifically to buy it. (May 1993, according to some bibliographies. I was 17 years old and was finishing my junior year of high school.) I had heard about the play from television and must have seen an ad for the upcoming publication in American Theatre magazine, which I read religiously.
I have seldom felt the absolute, life-or-death need for a book so deeply.
(I don’t tell anyone about this deep need. I am going down to Boston to spend time with family friends. I always go into town to visit the bookstores, since there are no good bookstores in rural New Hampshire. No one ever scrutinizes my purchases. And if they do, so what? It’s just a play. I want to be a playwright. It’s the play everyone is talking about, and so I should read it. It’s not that it’s about homosexuals, it’s that it’s about AIDS, and AIDS is a Serious Social Problem. So of course I would buy it. Of course. What else could you think?)
Riding back on the T to where I was staying, I resisted all my urges to take the script out of my bag and read it. (The fear of being seen reading that book in public was greater than my aching desire to read it.) I hid myself away in the guest room I was staying in and read it cover to cover. I remember where I was sitting. I remember the quality of light. I remember the scents, the sounds, the shapes. I remember the world the play built in my mind.
(Waiting for Part 2 to be published, I read Part 1 to myself over and over. I speak the words again, again, again. Always on my own, alone, quiet lest anyone hear even a whisper.)
I never saw Angels on stage, even though I was in New York while it was playing on Broadway. I could have scrounged/begged the money for a ticket, could have probably found a discount ticket through connections, could have probably seen the show. But no. Not that I was afraid anymore of what people would think of me—I’d accepted an identity for myself and announced it—but rather because no play could be the play in my mind. I did not want to see anyone speak those words except the characters I dreamed.
* * * *
The AIDS play I wrote was a finalist in a contest for high school playwrights and was performed in California. I couldn’t afford to go see it, and even if I could have, I didn’t want to.
(“Why did you write this play?” people would ask. “It’s a a play about a Serious Social Problem,” I would say. And I would say: “I want to be Brecht.” People would ask: “Why are you writing about homosexuals and not, for instance, drug users or people who had blood transfusions? Lots of people get AIDS who aren’t homosexual.” I would say: “Yes. True. But. I don’t know.” Trapped. No, I didn’t want to go to California, I didn’t want to see my play performed.)
I later met an actor who had performed in my play and he said every night, the audience at the end was silent, then in tears.
I really knew nothing about AIDS when I wrote that play. I haven’t reread it, and never sent it out to be performed again. I expect it was full of mistaken assumptions and errors.
I knew nothing about AIDS when I wrote that play, but I knew a lot about terror, and specifically the terror of death.
* * * *
I will now try to list the sources of my own learning, in so far as I can remember them. And I shall write this down not just for other people’s benefit but also so that I myself can get some perspective on it. In the process of finding out what one has learned, one learns once more.
–Bertolt Brecht, “Where I Have Learned”
* * * *
To have come to an awareness of the world, as I did, in the 1980s and early 1990s was to come to a consciousness of AIDS as a death sentence, and to link both sex and sexuality to that death sentence.
The first awareness of homosexuals that I had was an awareness of people with AIDS. They were on the TV news at night.
(My father laughed at them.)
According to everyone I knew, those people deserved their fate. They had asked for it. They were being punished for their perversion.
To be a homosexual was to be a pervert, and to be a pervert was to be punished, and the punishment was a slow, painful disease that would waste you away until finally, after pain and suffering and humiliation, you died.
Desire and the idea of sex are terrifying enough for adolescents; those of us who grew up in the 1980s and early 1990s, and whose bodies screamed with desires outside the realm of hetero norms, could not help but associate those desires with disease and death.
* * * *
This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore.
–Tony Kushner, Angels in America, Part One: Millennium Approaches
* * * *
Becoming a Man gave me a certain narrative for myself. I’m not even sure I quite remember that narrative now, not ever having returned to the book. (It showed me myself, but I have no desire to revisit my origin story.) What I remember is its power, the sense of awareness that it allowed me. Sentence by sentence, it offered connections, explanations, and images that brought some order to the maelstrom of fear and confusion I lived each day. The voice from the text was comforting at times, goading at others. The tales it told were not my tales, but they were the same genre, and I could set the stories in Becoming a Man alongside stories I was discovering of myself. This book of Paul Monette’s life belonged, I felt, on the same library shelf as the book of my life. I’d never seen that shelf before.
I remember another power, too: lust. And that, too, from a book, but not from the text. It was the cover of a book I found on the New Books shelf of Lamson Library: The Culture of Desire by Frank Browning. A black and white cover, with two young men, both shirtless, wearing jeans, one of them with an underwear waistband visible above the jeans, the man in back with his arm dangling over the shoulder of the man in front, who holds the hand in his own. It is the single most evocative image of my life. When I saw it, I immediately put the book back on the shelf. My feelings were overwhelming and inescapable. This was a gay book with a gay cover and I wanted that gay book and I wanted that gay cover and all the stories I’d told myself about the feelings that escaped my control—stories of feelings that must be some passing hormonal phase, stories of feelings that must not be feelings—all those stories, those denials, were suddenly inadequate because there was no other story that could be told now, no denial strong enough to hide myself from myself, not after feeling this way about this gay book.
Eventually, I would summon the courage to take that gay book out of the library. I remember burying it in a pile with other books (boring and not-gay), hoping the clerk at the circulation desk would not notice the cover, would not think I was taking it out for any reason except the utterly banal or scholarly, would not wonder about my feelings, my identity, my perversity, my fate. (The clerk was blasé; it was just a book.) I brought this gay book home and hid it under my bed. I don’t know if I ever read it. I don’t remember anything about its contents. All I remember is the cover.
* * * *
I went to New York for college and during the first few months there, I told everyone I knew that I was gay. They all took it well, were supportive, said they’d guessed.
(“Are you safe?” they ask.
“Yes,” I say, “I am very safe.”)
I never told my father, never talked about it with him at all. But that’s another story and another life.
* * * *
In New York, I spent some time as an activist with ACT UP. No more than a year. The biggest action I participated in was the October 1995 protest against Pope John Paul II at St. Patrick’s Cathedral. Some people I had met dropped a banner out of Saks Fifth Avenue that said, “CONDOMS SAVE LIVES!” I was part of a small group allowed by the police into a penned-off area in the midst of a 100,000 devout Catholics. We carried placards and signs. We shouted at the crowd, and the crowd shouted back at us. The police let the more peaceful Catholics approach us and throw holy water on us and call us vampires.
Later, I remember riding on the subway with some ACT UP veterans to wait for our friends to be released from jail. I remember thinking: This is what we’re here for. We’re here, we’re queer. Act up, fight AIDS.
I didn’t continue to go to many ACT UP meetings after that. It was too depressing. Everyone was dying. How could we keep fighting? What hope was there? I was young: I had a life ahead of me (didn’t I?), I needed hope (didn’t I?), but the hope had been sucked out of ACT UP some years before, and now the actions felt rote, felt like what you do because you don’t know what else to do. And the city knew it: there was hardly any media coverage of our action at St. Patrick’s Cathedral this time, as opposed to previous protests when ACT UP had made headlines across the world, those times when I had watched, terrified, the brave activists on the television in the living room of my home in rural New Hampshire and I had dreamed, because these angry, energized, beautiful people were fighting for me and my life, the life I was to live.
Now here I was, here and queer, acting up and fighting AIDS. But every week the organizing meetings had fewer and fewer people, and the people who came to them didn’t seem too energized, and their anger was now mostly bitterness, and the rooms were always crowded with ghosts.
I had become a man. I had borrowed time. The millennium was approaching.
But now what?
What was there left to do but die?
It felt like everyone had died.
* * * *
(Do you remember the gay bookstores?
Yes, they were everything to me for a while.
Bookstores and bars.
I hated bars and clubs. I could never relax. But at the bookstores, you could just look through the shelves, not have to talk to anybody, but know you were among people who didn’t mind who you were, what you were. You didn’t have to be a sexual object.
Are there any gay bookstores left in New York?
I don’t think so. A Different Light and Oscar Wilde were the ones I went to the most. They’re both long gone.
Instead of “Where Have All the Flower’s Gone,” we could have a song:
“Where Have All the (Gay) Bookstores Gone?”
Gone to graveyards, every one.
Lost to the end of the wars.)
* * * *
November 10th, 1996. Sunday. I’m sitting in the 6th Street basement apartment I share with three NYU friends, reading the Sunday Times which mysteriously shows up in front of our door every week (none of us remember having subscribed). After flipping through the Book Review, I take out the Magazine insert and see the cover: black words on a brown background that, lower on the cover, fades to white:
A difference between the end of AIDS and the end of many other plagues: for the first time in history, a large proportion of the survivors will not simply be those who escaped infection, or were immune to the virus, but those who contracted the illness, contemplated their own deaths and still survived.
And then a title in white capital letters on black: WHEN AIDS ENDS.
Byline: Andrew Sullivan.
I didn’t take the article seriously. It would be hard to overstate my dislike of Andrew Sullivan’s point of view, then or now. Now, I don’t pay any attention to him except when he’s, for whatever reason, inescapable. Then, he was annoyingly often inescapable, primarily because his 1995 book Virtually Normal had garnered more attention than perhaps any other gay nonfiction of the decade.
I considered Sullivan a bourgeois assimilationist neoconservative. If being gay meant being Andrew Sullivan, I would have rather been anything else.
Most official statements about AIDS—the statements by responsible scientists, by advocate organizations, by doctors—do not, of course, concede that this plague is over. And, in one sense, obviously, it is not. Someone today will be infected with HIV. The vast majority of HIV-positive people in the world, and a significant minority in America, will not have access to the expensive and effective new drug treatments now available. And many Americans—especially blacks and Latinos—will still die. Nothing I am saying here is meant to deny that fact, or to mitigate its awfulness. But it is also true—and in a way that most people in the middle of this plague privately recognize—that something profound has occurred these last few months. The power of the newest drugs, called protease inhibitors, and the even greater power of those now in the pipeline, is such that a diagnosis of HIV infection is not just different in degree today than, say, five years ago. It is different in kind. It no longer signifies death. It merely signifies illness.
I read that paragraph and its ending seemed like something between a ghastly joke and a text in a language I could not decipher. It no longer signifies death. It merely signifies illness.
* * * *
(You were sexually active in New York?
Some, not a lot. Mostly, I was scared.
This surprises you?
No, because I was very safe.
We were all supposed to die.
Perverts. Perverts get AIDS and die.)
* * * *
When I was in the eighth grade I wrote a story about a vampire. He was young, roughly my age, entering puberty, entering vampirism. He ached to touch, to kiss, to drink in the loveliness of what he hungered for, but to do so was to admit his monstrosity and to kill what he loved. He feared himself and hated himself.
I don’t remember anything else about that story except how terrified I was to show it to anyone, lest they notice what I was saying about desire between the lines.
But I did show it to my English teacher. She had been sensitive and supportive of the stories I’d written, no matter how weird and violent. We talked about the story for a while. Now, more than 25 years later, all I remember is that she spoke—casually and not in any way judgmentally, without lingering—about the vampire’s desires being a powerful element of the story because they could also be read as sexual desires.
“No,” I replied quickly, lip trembling, “he’s just a vampire. Vampires have to drink blood or they die.”
She smiled and nodded. “Of course, of course,” she said.
* * * *
I was out to dinner with some friends and acquaintances back home in rural New Hampshire. Local folks, not anybody connected to the world of writing or publishing. All at least ostensibly heterosexual, all at least vaguely aware of my queerness. One of them mentioned to the others that I had a book coming out, a collection of short stories.
“Short stories?” someone said. “What sort of short stories?”
“All kinds,” I said.
“What are they about?” he said.
With no clear answer to such a question (various styles, tones, topics), I blurted out: “Gay sex.”
It was not the answer he was expecting. “Huh, well, okay,” he said. “That’s not really the sort of thing you hear about written a lot.”
“Not enough, certainly,” I said.
“Well, I look forward to seeing the book,” he said, and then we returned to our meals and other subjects.
* * * *
A year or so after it premiered in 2003, I watched the HBO movie of Angels in America directed by Mike Nichols, starring Meryl Streep and Al Pacino.
I remember it seeming strange that the actors were speaking words I knew so well, words I had dreamed.
I remember nothing else about it except the general sense of surprise that it didn’t elicit any strong emotions from me. The actors, the sets, the line readings, all of it was not quite what it was in my imagination.
“How was the movie?” somebody asked.
“It was fine,” I said. “But I didn’t need it.”
* * * *
I write often about gay people, my queer world, and have been doing so since the early years of this century. I expect that if I had begun publishing ten years before I did, I would have been identified as a gay writer. Condemned, celebrated, ignored, whatever: I would have been a gay writer.
Instead, I have been variously identified with certain genres and styles.
I don’t fit any of them consistently.
When I was younger, I did not want to be a gay writer. It felt limiting, marginalizing. I did not want my work only to be read by gay men. At least, I said (and still say), call me queer. If I must have a coherent identity, then it needs to be a fluid one, one that embraces all my inconsistencies. As a writer, a reader, a person, I am inconsistent: I am queer.
Typically, though certainly not exclusively, the people who respond most fully to my writing are gay men.
I do not read writers because they are gay writers, queer writers, anti-heteronormative writers. I read writers because their work appeals to me, makes me think, makes me feel.
Most of the writers I respond to most fully are gay/queer/anti-heteronormative writers.
I have reconciled myself to the fact that I am older now, and no book will ever affect me in the way that Becoming a Man and Angels in America affected me as a teenager. Nor will I ever respond to a picture in the way I responded to the picture on the cover of The Culture of Desire. They affected me so deeply because I lived in a world of dangerous desire, and they offered moments of recognition and beauty within the danger. Despite all the continued horrors of life, the bashings and killings and murderous sprees, the places that legislate against feelings like mine and legally kill my compatriots in inclination—despite all this, desire feels less dangerous now, because I can write honestly.
I can write this.
* * * *
It’s been just over 23 years since I bought the script of Angels in America, Part One: Millennium Approaches.
It’s been 21 years since Paul Monette died.
It’s been about 22 years since I found The Culture of Desire on a library shelf.
On November 10th of this year, it will be 20 years since “When Plagues End” was the cover story of the New York Times Magazine.
* * * *
In 2015, 36.7 million people globally were living with HIV.
17 million people globally were accessing antiretroviral therapy
2.1 million people became newly infected with HIV
1.1 million people died from AIDS-related illnesses
78 million people have become infected with HIV since the start of the epidemic
35 million people have died from AIDS-related illnesses since the start of the epidemic
Worldwide, 2.1 million people became newly infected with HIV in 2015, down from 2.2 million in 2010.
New HIV infections among children have declined by 50% since 2010.
Worldwide, 150,000 children became newly infected with HIV in 2015, down from 290,000 in 2010.
AIDS-related deaths have fallen by 45% since the peak in 2005.
In 2015, 1.1 million people died from AIDS-related causes worldwide, compared to 2 million in 2005.
* * * *
RARE CANCER SEEN IN 41 HOMOSEXUALS
It feels like an entire generation of writers, artists, performers, and people is drifting away, lost to memory. Ghosts unable to crowd a room.
Our own lost generation, lost to the wars.
Have we done enough to remember? Have we remembered enough?
(Not we. I.)
Life, the book. The long gay book.
Do you remember? Should you remember?
What are our stories about?
I published a collection of short stories this year called Blood. It is full of desire and death. It is, yes, now and then about gay sex (among other things). The words “AIDS” and “HIV” never appear. And yet they are everywhere between its lines.
Is that absence cowardice? Is it irresponsibility?
Or is it simply absence?
(Is absence ever simple?)
I write because I have no answers, only questions.
Are we here? Are we queer?
What are your stories about?
What do we remember? What should we remember?
Who is this “we”?
Do our ghosts crowd between the lines of our books?
Are the lines of our books anything but ghosts?
* * * *
The only thing that is different from one time to another is what is seen and what is seen depends upon how everybody is doing everything. This makes the thing we are looking at very different and this makes what those who describe it make of it, it makes a composition, it confuses, it shows, it is, it looks, it likes it as it is, and this makes what is seen as it is seen. Nothing changes from generation to generation except the thing seen and that makes a composition.
–Gertrude Stein, “Composition as Explanation”