Getting Diagnosed with HIV Taught Me How to Live
It taught me that life is precious, and you are vulnerable. That it's not a disease, it's an opportunity to seize your life and live. And that we are going to be OK.
Jeff Leavell. Photo courtesy of the author.
"Hey Daddy, let me have your toxic load."
"I'm sorry? What?" I replied.
"I want that poz load, daddy. I'm negative. Will you bury that infected load deep inside me?"
This was the beginning of a conversation I recently had on Scruff, a gay dating app. It was also the end of that conversation, because instead of lecturing this guy on the transmissibility, or lack thereof, of my undetectable HIV-plus "load," I just blocked him.
I tested positive in 2013, at the dawn of a new age of HIV—the age of PrEP and super antiretroviral drugs and undetectable viral loads (which simply means that your HIV meds have suppressed the virus in your body to the point where it doesn't show up on blood tests—and is highly unlikely to be transmittable to others). It was a far cry from the age I grew up in, surrounded by the ravages of AIDS. I watched my mother's friends die, and I saw the stigma that accompanied the sickness.
For the majority of my adult life, HIV was a monster under the bed—the worst thing, relatively speaking, that could happen to me.
And then it happened. Was it everything I feared? Far from it. I'm often shocked at the relatively low impact HIV has had on my life. But it did change something larger in how I see the world, and how the world sees me.
Namely, learning I have HIV brought my own mortality into focus. If this could happen to me, I realized, anything could happen to me: aneurysms, cancer, bullets in the head while walking down the street.
And then there's that lurking feeling that I'm just a little bit tainted, a little dirty. Here's how another conversation on an app began:
"Wait... do you have AIDS?"
All my dating profiles clearly state that I am HIV-plus and undetectable—it's one of the first things people see, so that I don't have to continuously come out.
"I don't have AIDS. I'm poz undetectable," I explained, perhaps being too gracious.
"Man, there's no difference. You're still sick. Can I get that if I let you suck my dick?"
I don't even know how to talk to people like that. I try to remind myself to be patient, that these are opportunities for education.
But then again, why the fuck do I have to be the educator? There's Google, for one, and the countless studies and articles and documentaries and blogs it will show you. If you are a gay man living in a major metropolitan area in 2016 and you don't know the difference between HIV-plus undetectable and AIDS, you're being willfully ignorant. And probably deserve to get blocked.
But I tried to be patient anyway, and explain things to him.
"Yeah, seems too risky, man," he said in response. "Like, maybe your spit will get in my piss hole or something. Just let me know when you're better, and we can do it then."
"I'm not getting better," I wrote, hitting send before I realized how much I wish I hadn't written that.
And sometimes I get mad at the unfairness of it all. I tested positive when I was 44, two years sober from a 24 yearlong fight with heroin. I know exactly how it happened—it was with a fuck buddy of mine. Someone I trusted (and someone I still trust). We hadn't used condoms in years. We both got tested regularly. I was topping him, and I honestly believed that because I was the top, there was no way I was at risk. I felt safe. He felt safe. He called two weeks later to tell me he tested positive. He got unlucky with another guy, and it was just one of those perfect storms.
I remember thinking: I didn't get sober just to get AIDS. And I remember the moment they told me, in the testing van outside the gay bar where I work, on a Sunday afternoon. I drove home crying. When I told my husband, Alex, he held me and told me it would be OK. That we would be OK.
And so far Alex has been right. We have been OK.
I'm lucky. I have the support of my husband and our boyfriend, Jon. I have the love of all my family and friends. And I refuse to hide my status or deny it. I mention it on Facebook all the time, and I discuss it using every social media profile that I have. I try to be as open and comfortable as I can, because I think it's important to show people who are out there and frightened that it is OK, and that we are OK. You might feel tainted, you might feel diseased and ugly, but we aren't. You are strong. We are survivors. We are still here.
I remember my mother's friend Tony. He was one of the most beautiful men I'd ever seen. He would babysit my brother and me, take us out to lunch, and tell us completely inappropriate stories about his sexual adventures on Fire Island. This guy was responsible for most of my teenage masturbation fantasies, and he made being gay seem glamorous and magical, full of sex and love and wonder. When I saw him lying in bed at the hospice, sick, thin, and dying, it felt like the world was ending. All the beauty and glamour and love I'd found was fading away with amazing men like Tony.
I try to remember him when someone says something unkind or hateful to me about my status. I try to remember going out for hot fudge sundaes after his funeral with my mother and all his gay friends. Someone turned a radio on, and we danced in the fading New York City sunset and laughed. When I asked my mother why we were laughing, she said, "Because we're tired of crying, baby boy. Because it's better to laugh."
It's them that I remember when others try to bring me down. Beautiful and strong, all dead now.
When I found out I was positive, I made a promise to myself and to all those men who died that it would have meaning. I was going to take this and make something out of it.
When I lie in bed at night and feel terrified, and think an Oxy or heroin or a joint is what I need to quiet my head, I remember that promise I made. When I become so scared of failure that I imagine packing up my life and disappearing, I remember that this will mean something. I will do something with it.
I get to live. Even if it means living with HIV, I get to live. And I am going to live as much as I fucking can. For all those dancing men. For Tony. For all of us.