How To Survive A Plague

[Re-posted from earlier today]

I’ve seen and read and written a lot about the AIDS plague in America, fifteen years of mass sickness and death that killed five times as many young Americans as the Vietnam War in roughly the same period of time. I was a volunteer “buddy” to a man dying from AIDS before I tested HIV-positive myself. I lost my dearest friend, who found out he had AIDS at the very moment I found out I was HIV-positive, and countless others as well. I was scared shitless for years. I remember one night talking on the phone to an old boyfriend who was in the same mess as I was: “One thing we need to remember, if we survive this,” I said. “We must never forget how fucking terrified we are.”

I channeled that fear into my books, Virtually Normal and Love Undetectable. I wrote the first because I didn’t expect to live to write the second. The date on the preface is the day I was diagnosed. I wrote the bleakest essay of my life in 1990 for TNR: “Gay Life, Gay Death.” I went to ACT-UP meetings in New York City to absorb the scene and to Harlem’s projects to see a dying gay man whose main worry was that a white guy like me on his doorstep would out him in front of his entire community. I watched young, vibrant men in their twenties turn into skeletons in a matter of weeks. I wandered through the great horizontal cathedral of the AIDS quilt on Washington’s Mall, and saw a wave of grief that reduced the entire scene to an eerie silence.

People forget that HIV decimated the immune system – but people actually died from the opportunistic infections. These “OI”s were something out of Dante’s Hell. So many drowned to death from pneumocystis. Or they would develop hideous KS lesions, or extremely painful neuropathy (my “buddy” screamed once when I brushed a bedsheet against the tip of his toes), or CMV where a friend of mine had to inject himself in the eyeball to prevent going blind, or toxoplasmosis, a brain degenerative disease where people wake up one day to find they can’t tie their shoe-laces, and their memories are falling apart. Within the gay community, 300,000 deaths amounted to a plague of medieval dimensions. Once you knew your T-cells were below a certain level, it was like being in a dark forest where, at any moment, some hideous viral or bacterial creature could emerge and kill you. And for fifteen years there was nothing to take that worked, just the agonizing helplessness of waiting to die, and watching others get assaulted by one terrifying disease after another.

In this immense catastrophe, you had an almost epic tale: no sooner had a critical mass of gay men actually come out, established themselves in urban ghettoes, and finally celebrated their humanity and sexuality than they were struck down in droves. But the next part of the story is the most amazing. We could so easily have given up in shame or self-hatred or exhaustion. But somehow, we found the internal resources to fight back. We knew that the federal government would refuse to react as they would have had this disease occurred anywhere but among homosexuals. And so we were almost a model of self-help, activism and empowerment. We had nothing to lose any more – and that unleashed a kind of gay power that is the most powerful reason, in my view, for why we have made so much progress so quickly since.

ACT-UP had its problems. It would alienate people unnecessarily; it would polarize; it would disrupt religious services; it could be a parody of p.c. claptrap (some meetings were interminable victim-fests), and tiresomely accuse almost anyone not in ACT-UP of being a murderer (yes, I was busted more than once). And yet all of this was a function of rage and will that was and is inextricable from defeating the plague.

How To Survive A Plague” is the first documentary that I have seen that does justice to this story of a civil rights movement rising from the ashes of our dead.

It gets the chronology just right – with the false hopes and then the real progress and then the crushing news of bad drug trials. The worst years were 1992 – 1995. That was when the deaths were always at your door, when our local gay paper, the Washington Blade, had up to a dozen pages a week just for obituaries, and when I lost my friends who just missed the miracle of cocktail therapy. 1996 was a real nail-biter. Everything was a race against time; some won that race; some fell before the finish. “I just got out from under the barbed wire,” said one friend who lived just long enough to get the treatment. But he left many behind who had been hanging from the same length of string.

ACT-UP begat the research citadel went on to help guide and revolutionize it. The whole concept of being a patient was turned from being a passive recipient of authoritative men in white coats to being an aggressive interrogator with any medical doctor who didn’t know his shit. Almost all of us were certain we’d die of it. And almost all of us mastered the science because we didn’t trust anyone else to help us.

The film gets this; it shows us what today’s generation never saw: the extreme suffering of agonizing and terrifying deaths, compounded at times by ostracism, shame and family betrayal . It shows the women who helped lead the movement – Ann Northrop and Garance Franke-Ruta (now an Atlantic blogger) among many others; and it beautifully captures the manic passion of Mark Harrington and the sharpened lead at the end of the activist pencil, my old friend Peter Staley. There’s one moment in it when you forget and forgive all of Larry Kramer’s occasional excesses because of the look in his eyes. The look was determination to live. And he lived.

If you want to understand the gay civil rights movement in the last twenty years, you need to see this film. None of it would have happened as it did, if we had not been radicalized by mass death, stripped of fear by imminent death, and determined to bring meaning to the corpses of our loved ones by fighting for the basic rights every heterosexual has taken for granted since birth. No spouse was ever going to be turned away from his husband’s deathbed again, as far as I was concerned. Never. Again. For me, marriage equality is not an abstract concept. It has always been my attempt to make my friends’ deaths mean something more than tragedy. And it is non-negotiable.

I was there in Ptown at the film festival with some of my generation of survivors – Peter Staley, Kevin Jennings, David France, Tim McCarthy, whose videos of throwing the ashes of loved ones over the White House gate cannot leave my mind. We hugged afterward, my face blurred red with sobbing. It felt a little like a veterans’ get-together, we older men remembering our salad days of terror and combat. We are not free of health issues as older HIV-positive men. But they are nothing compared with the past. In that sense, we are all children of the plague, forged by it, tempered by it, and, in the words of Mark Helprin, I doubt we will ever be anything else …

… for soldiers who have been blooded are soldiers forever… That they cannot forget, that they do not forget, that they will never allow themselves to heal completely, is their way of expressing their love for friends who have perished. And they will not change because they have become what they have become to keep the fallen alive.