New York, New York
Positive since 1996

December 1 is World AIDS day. It has been since 1988. The day usually rolls around with little notice. Last year, I saw mentions of it as I scrolled down my Facebook news feed. I noted that some of my friends had changed their profile pictures to pictures of red ribbons for the day and I even read a few stories and articles about the early days of the epidemic. Other than that, there was little fanfare; no television specials about the history of the epidemic or how far we’ve come in 30 years in treatment and awareness. No TV news stories about how infection rates continue to climb in young people and in gay communities. Just the regular suspects doing the same things that they did last year and the year before that; choristers preaching to the choir.

The other night, I was going from the East Village to Gramercy and even though it was raining and cold, I decided to walk. I crossed 18th Street between Second and Third avenues. I hadn’t necessarily been avoiding this block—at least not purposely—but I hadn’t walked down it in years. On the south side of the street, toward the center of the block, is a string of nearly identical townhouses, brownstone staircases leading up to an old-New-York-style grandeur of years gone by, big windows revealing high ceilings with ornate moldings and chandeliers. Each of these houses has small entrances underneath and to the side of their front stairs. One of these entrances led to the apartment that my boyfriend Tom used to live in back in the ’80s. I couldn’t be sure which had been his, but as I walked back and forth a couple of times, I remembered the times I’d spent inside one of those buildings decades ago; young, excited, in love, hopeful, not yet cynical, not spoiled; a naive and innocent me, a deceptively simpler time.

I didn’t see many examples of healthy, loving relationships growing up. My grandparents had been married for decades. They certainly loved each other and were dependent on each other, but I don’t recall them showing affection for one another. My parents divorced when I was four. My mother went on to date and then marry domineering and abusive men, a model I knew I didn’t want to repeat. My father pretty much went through women as one might go through a seasonal wardrobe. It was the ’70s—the sexual revolution—and while there were a couple of gals who stayed around for a while, when a relationship lost its luster and newness, he’d call it off and move on to the next. Any negotiations or particulars of a day-to-day supportive and loving partnership were, and to some extent still are, remote and distant concepts. Concepts that I might grasp in theory, but have had no firsthand experience of in practice.  

Tom and I were young and foolish, carefree and uninhibited. The two of us were bundles of raw hormones set loose on each other (and the world) in an increasingly scary and uncertain time. Tom became HIV positive. Fear hung over our young lives as our friends and acquaintances would get sick and then quickly vanish. I have no recollection of talking about our fear. But I do remember Tom being tenacious and uncompromising in taking precautions to keep me safe. This often resulted in his withholding of sex—a gesture I can now see as loving, but as a young man raging with desire, I was unable to accept. Even so, we managed to stay together through a number of tumultuous years. Our fondness for and physical attraction to each other outweighed the difficulties of our fear and our serodiscordance.

At the time, friends who were justifiably enraged by the lack of HIV/AIDS services and treatment, Mayor Koch’s lax response and the Reagan administration’s negligence, harnessed their anger and joined ACT UP. I volunteered at GMHC (at the time, it was in a two-room office above a restaurant on 18th Street and 8th Avenue) and the PWA Coalition, a small organization located in a donated apartment off of a courtyard on West 12th Street that helped people with AIDS acquire experimental drugs. The PWA Coalition was a support center for a community that was quickly being slaughtered by an invisible monster.

I admired those brave warriors who threw themselves wholeheartedly into battle, educating themselves and their community through civil disobedience and community organizing, changing the trajectory of HIV/AIDS treatment and legislation for generations to come. I cheered them on but stayed on the periphery. I didn’t possess the tools to focus or hold my resolve in the face of such loss or the fear of my own mortality.

I turned my concentration to pursuing what then looked like a promising career in the arts. I met people with similar interests and turned my attention away from the overwhelming health crisis and away from Tom. His health was declining, and he quietly slipped into depression and secret drug abuse. Of course, with hindsight and some adult critical thinking skills, these events make perfect sense. But at the time, I didn’t know what was going on; I simply couldn’t process what was happening in my world.  

For a few years, I excelled in my nascent career. I was lauded for my talents and met new and exciting people. I also began to quietly immerse myself in drink and drugs, perhaps to quiet the guilt I’d felt for abandoning Tom, or maybe the guilt of being an unlikely survivor when all that remained of handfuls of friends were memories of beautiful young men whose opportunities had been ripped from them. I was actively constructing protective walls all around me. Drugs, alcohol and denial make for sturdy building blocks when creating an impenetrable barrier against the world.  

I learned later that Tom had died. I hadn’t seen or spoken with him in some time. Estranged from his family and with few friends, the young man who may have been the great love of my life had died a lonely and unnoticed death while I was off chasing childish ambitions.

As an adult (but really little more than a boy) with no emotional coping tools, it was too much for me to even consider. My alcoholism and drug addiction blossomed. My life would become a demoralizing whirlwind of unmanageability and shame that lasted the next 10 years. I’d opted for ignorance of my own HIV status, understanding that a positive test result would likely mean death. In 1996, at a doctor’s insistence, I took an HIV test and the results came back positive, just in time for the first generation of the lifesaving “cocktail.”

As I walked on 18th Street that night, I was self-indulgent, perhaps even maudlin. I imagined all that might have been if circumstances had been different, if I’d been able to respond differently. Even if Tom couldn’t have survived his illness (he died in 1990 or ’91, five or six years before protease inhibitors were available), maybe facing my fears and my feelings, maybe being able to communicate openly with him could have saved him those final years of drug use and isolation. And could have given us both a genuine, if all-too-brief partnership. Only now, more than a decade into my own recovery, am I beginning to unpack my feelings of such devastating loss—and of my love for Tom.

What three adjectives best describe you?
Kind, honest and open-minded

What is your greatest achievement?
Surviving

What is your greatest regret?
Impatience

What keeps you up at night?
The state of the world

If you could change one thing about living with HIV, what would it be?
I’d like to see ignorance and stigma erased.

What is the best advice you ever received?
Don’t give up.

What person in the HIV/AIDS community do you most admire?
The survivors I see aging with grace and dignity

What drives you to do what you do?
The alternative

What is your motto?
There is no try, there is only do.

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My cat

If you could be any animal, what would you be? And why?
A bird, so I could feel weightless, and see things from above