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Voice Male - Spring 2005
Once Upon a Time, When I Had AIDS
By Les Wright
San Francisco, 1980.
I first heard the rumors from my roommate "Big" Jim. Jim worked as a clerk at Dino's Liquors, on Eighteenth Street just above Castro, and thus caught all the gossip on the street. He said guys were coming into the store talking about some sort of weird "gay cancer."
Word spread like wildfire. Most men in the Castro responded with disbelief, incredulity mixed with paranoia, followed by only half-believed words of reassurance, as much to themselves as to each other. This was clearly someone's bad idea of spoiling the party that was Castro Street in those days. How could there be a gay cancer? Is this supposed to be proof of homosexual decadence? Is it a government plot? Who is making this crap up?
The unnerving part was that the rumors did not go away.
And then there were people we actually knew who got sick one day, ghastly, horribly sick, and were dead in two weeks. This was no paranoid fantasy or baseless, vicious rumor. We started to freak out, big time.
Looking back 25 years, I remember the gradual rise in the atmosphere of fear and anxiety, of horror, of "there is no escape." Life in the Castro in the early 1980s was like a dystopic sci-fi movie. Something truly monstrous had arrived, and every day meant getting up and facing the nightmare all over again.
I remember the relentlessness of it. I remember the sheer terror and confusion, the uncertainty. I remember people arguing about whether you got "it" through kissing or breathing the air, using someone else's toothbrush, whether we all needed to stop having sex now. I remember the anguished struggle of men trying to stop having sex and failing. I remember other men who stopped having sex, holed up and never came out. I remember the street party that was Castro Street 24/7 evaporating overnight. Castro became a ghost town.
I was having lots of sex, with lots of men. As a neighborhood T-shirt put it, "So many men, so little time." (Little did we know what a cosmically dark joke that would turn out to be.) Men I had had sex with--no one "dated" in those days--suddenly turned up dead. Phone calls went unanswered; someone who knew the man I had tricked with the weekend before would pass on the news. Big Jim would come home from the liquor store each day with a list of names, men he'd heard had died.
Both of my roommates of that time, "Big" Jim and "Little" Jim, eventually died of AIDS. I would go on to have another 42 roommates over the next four years in that house, and nearly all of them are now dead, mostly from AIDS-related causes. At least two downstairs neighbors also died of AIDS, including one whose fundamentalist parents showed up from the Midwest to deal with a very sick and berserk, drug-addicted little boy. Our landlord also died from AIDS.
In the middle of this horror I got sober. That had nothing to do with AIDS. That had to do with a seriously declining trajectory, with binges that were lasting several days at a time. It had to do with my realizing I was going to die, within months if not weeks, if I did not stop drinking.
In the deepest trough of that first wave of AIDS, some guys actually thought giving up drugs and alcohol would save them. Because maybe the "gay lifestyle"--staying up all night on drugs, having countless sex partners at the bath houses, doing poppers on the dance floor every night--was causing AIDS. All of a sudden, gay AA, a fairly small undertaking, exploded, and gay men started showing up in hordes, getting sober to stay alive, using sobriety almost as a talisman to ward off AIDS.
There was a lot of sharing in the meetings about AIDS--and a lot of angry debate over whether AA was the proper place to discuss this "outside" issue. Of course the sharing went on, and I found community, commonality, and support with my fellow recovering drunks and addicts. We all talked about our fears of AIDS, every single day. And we talked about our grief, the loss of one friend after another. We talked about being so totally overwhelmed by the immensity of our losses, which continued to grow. We talked about surviving and staying sane and not picking up the next drink--even as we despaired that there would ever be a day when everyone was no longer dying of AIDS. It was horrible beyond description to live through. Imagine everyone you know, your entire community--your generation, your culture, your gay "civilization"--getting sick and dying.
All of this happened while Ronald Reagan was still refusing to even say the word AIDS. By the time he did, in 1985, it seemed nearly everyone I knew had died or was sick. The gay AIDS epidemic had destroyed my world, and straight America was still completely clueless. AIDS was just some weird shit happening to nasty people, who probably deserved it. We had become unmentionable, our existence denied, the horror of our daily life something we would do better to keep silent about.
I have photos of the group of guys I went through alcoholism treatment with. All of them--Dennis, Mark, Charlie, Rick, Dan--are now dead, all of AIDS. The only survivors are myself and our counselor, John Beeman, who retired to Sonoma County in the 1990s. Most of the friends I ran around with in early sobriety, my boyfriends and my boyfriends' exes, died from AIDS.
My AA sponsor Doug M., who loved me unconditionally, and relentlessly, who supported me and talked to me and mothered me, I suppose, through so many nightmare months, also died early on. I saw one man after another, by the dozens and into the hundreds, get sober and then die. All of gay AA in San Francisco remains haunted by the AIDS dead for me.
In January 1982 I came down with a case of hepatitis B. I had managed to spend the preceding six months being sexual with two men only. (I was experimenting with being in a more or less monogamous relationship, in sobriety, for the first time in my life.) Both of my sexual partners, as it turned out, tested positive for hepatitis A. Our three doctors got in touch with each other, and none of them could explain where my hep B had come from. I was very, very sick for the next six months.
Years later I would piece together that this was my "seroconversion syndrome"--I had been infected (at the latest) sometime in 1981. Both men I had been involved with were infected with HIV. Mike, a career firefighter with the SFFD, died of lung cancer (it killed more quickly than HIV) in 1990. Ken, who had been a mentor and my department chair at Berkeley, died of skin cancer in 2002.
At first I refused to be tested; for political reasons, I joined the protest against what seemed like a serious violation of civil liberties. However, I did eventually go in for testing, sometime around 1986. My results came back "positive to exposure to the HTLV-III virus." (At least they weren't calling it GRID--"gay-related immune deficiency"--anymore.) The woman who tested me gave me a personal history interview. She chirped, "You fit exactly the highest-risk group. It's a miracle you are even alive today." She was outdone only by my mother, who, when I disclosed my HIV+ status, told me with her usual lack of maternal empathy, "Well, frankly, we suspected that all along. And we expected you would have died long before this."
At the time, I thought knowing for sure would put my mind at ease. Instead, the diagnosis brought on worse days to come. In 1989 I entered a profound clinical depression. I also got sick. I underwent some drug trials and ended up on welfare. I spent half my days at Ward 86 (the outpatient clinic, mind you!) at San Francisco General. I counted it a notch in my belt that I was a Ward 86 AIDS patient, and not on Ward 5A, where the terminals went. Many of my friends checked into Ward 5A and never came out.
In 1990 I was given the dual diagnosis of Disabling ARC and Depressive (PTSD) Disorder. I was certified permanently disabled and began collecting SSI. This had not stopped me from finishing my dissertation and getting my Ph.D. I had no intention of dying before that--but I had no plan for anything after.
And that is where I am today: there has been over a decade of "after." And I have finally recovered from half a lifetime of waiting to die, horribly, painfully, in a state of destitution. I clearly needed the past dozen years in relative isolation here in Massachusetts in order to devote my energy to coping and dealing with and recovering from the devastating impact of AIDS--as well as childhood sexual abuse trauma, which would emerge as an issue only around 1990.
In 2002, when my partner Dale and I came home from a January trip to Germany, I became very ill. It was a combination of nervous breakdown and physical exhaustion that sent my immune system into haywire mode. It became clear to me that something was not working--I was on enough psychotropic medications to paralyze an elephant, yet I was in a constant state of extreme anxious depression, and when I got sick I turned suicidal.
So I took myself off all medications, both psychotropics and antivirals. I have been completely medication-free ever since, and am in better physical health than ever before. I am back "on the beam" in pursuing a spiritually awake life, striving for balance and acceptance, and opening myself up again to the wonderful possibilities of living.
It has taken me a very long time to learn to live with the angel of death. As Don Miguel Ruiz writes, "If we surrender to the angel of death we will be happy forever and ever. Why? Because the angel of death takes the past away in order to make it possible for life to continue. For every moment that is past, the angel of death keeps taking the part that is dead and we keep living the present." I am learning to no longer live in the past or fear the future, but to live in the present.
Les Wright is a writer, teacher, lecturer, and cultural studies scholar, and a frequent contributor to Voice Male.