How It Felt to Live Surrounded by AIDS Before Treatment

Dying and dancing in the street

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A few years ago, before I had begun to write regularly about HIV and LGBTQ issues, a young friend asked me to tell him what is was really like to live in a gay mecca like lower Manhattan during the height of the HIV epidemic, before effective treatment became available.

I blew him off at first, because I didn’t want to stir up old ghosts who still haunt me. I shrugged my shoulders and changed the topic. But after a couple days trying not to think about it, memories came swirling back — mist blowing ashore off an icy lake. Finally, I sat down and wrote him an answer. What you see next is a lightly edited version of that reply.

I don’t want to answer your question, because it’s very painful to take myself back there. But our stories need to to be told, I suppose, so I’m going to try.

I was outside the US and mostly isolated from the epidemic during much of the the 1980s. In my deployed military world, AIDS happened to other people, far far away. I worried about HIV in a detached sense, but not in a personal one. Then I left the Air Force and landed in Manhattan in 1990.

When the wheels of that DC-10 set down at JFK, they were delivering me into the very peak of plague I barely comprehended. It’s so hard to bring it to life with mere words, to describe. I felt so much in the next few weeks.

Overwhelming fear.

Stubborn optimism.

Fierce anger.

The more I integrated into my new world, the more tragedy I experienced, the more my soul seemed to catch fire. I lived and worked in Chelsea and Greenwich Village. Almost all my friends and coworkers were gay men.

Nobody knew who was next.

You have to understand that given the long incubation period and the even longer progression to illness, that many gay men were at risk because of sexual contact they’d had before they knew they needed to be safe.

The Sword of Damocles dangled everywhere.

We argued about whether we should be tested. Did we even want to know if the virus was slowly and relentlessly multiplying in our blood? What was the point of knowing? No medicine could help us.

Funerals for young men happened every damn day.

Purple blotches stained faces on every corner. Refugees from the Bible Belt were terrified of going “home” to die. They wanted to stay with their friends as they drew their last breaths.

The living tended the dying.

Cooke was my friend.

He had been a fashion model. From somewhere inside that gaunt face peered the beautiful man he had once been. He was cheerful and friendly as he died. He didn’t want to be a burden.

He didn’t make it.

Neither did Allen. Or Phillip. Or Antonio. Or Charles. I have tears streaming down my cheeks as I remember them all.

I think of one sweet boy in particular. He was little more than a child when he gave up precautions and sero-converted on purpose. He couldn’t​ take it. He didn’t know how to live surrounded by all that death. He gave up and he died. The virus was merciful.

It took him fast.

We fought back, though.

We educated ourselves and we organized. We cared for our friends first. We fed them, we nursed them, we bathed them, and we buried them.

We fought for money for research, and we fought for affordable​ treatment. We fought the apathy of our government and we fought the homophobic evil of the Roman Catholic Church, which at least in New York poured so much energy and money into fighting safer sex education.

We lived all along.

What else is there? We danced and sang. We partied in the streets. We roared our defiance into the dark night. We lived and we loved as we died.

Then one day it ended.

Just like that.

Effective treatment came out toward the end of the nineties. It was like a miracle. People who were almost dead recovered overnight.

We looked up and the sun burnt our eyes as it rose to end a long, dark night. We didn’t know how to feel. We didn’t know what to think next. We didn’t know what to do next. We blinked and asked ourselves an important question.

How do you recover from that?

I’ve spend more than twenty years trying to answer that question. The fight against HIV isn’t over, of course. Much work remains to be done in the United States, where lack of access to testing and treatment acts as a barrier to ending the epidemic, especially in certain vulnerable communities. Globally, the epidemic rages unabated in places like eastern and southern Africa, taking a frightening human toll.

Part of my personal answer to recovering from trauma and survivor’s guilt is to keep fighting. Keep up the effort to engage people with education and information.

Some of my friends went into health care full time. Others became teachers. Some succumbed to the numbing lure of alcohol or drugs.

But for those of us who lived in the epicenter? Whoever we are and however we cope, when we see one another and think about those years, memories come rushing back, whether we want them to or not. Sometimes we cry, sometimes we laugh.

Always, we feel profound loss, wishing we could be laughing and crying with friends we’ll never see again.

James Finn is a long-time LGBTQ activist, an alumnus of Act Up NYC, an essayist occasionally published in queer news outlets, and an “agented” novelist. Send questions, comments, and story ideas to jamesfinnwrites@gmail.com.

Written by

Writer. Runner. Marine. Airman. Former LGBTQ and HIV activist. Former ActUpNY and Queer Nation. Polyglot. Middle-aged, uppity faggot. jamesfinnwrites@gmail.com

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