I started thinking about the connection between HIV, sex and love when I was in middle school. Like most kids that age, I was nosy, and often bored. One day while I was alone at my grandmother’s house, I wandered into my uncle’s room and started rifling through his things. Ronnie Franklin was a fascinating guy, a photographer who’d traveled the world for years–until the demands of living with AIDS slowly pulled his independence out from underneath him. Before long, I came across a stash of photos he’d taken of naked black men, some of whom looked sick. They were individual black and white portraits, and the subjects were exposed, vulnerable, and gorgeous.
I was fortunate to have had some sex ed in school, so the concept wasn’t completely foreign to me. But that’s exactly what it was: a concept, without real people, with hearts that could be broken and desires they wanted to fulfill.
I’d known my uncle outside of the disease he’d been fighting, but now I knew him as someone who was more than my uncle, the guy who made mouthwatering pancakes for breakfast and cracked perfectly timed jokes at funerals. At one point, he was someone’s partner, someone’s lusty crush, a man who had desires and who was desired.
His work had taken him all around the world, but his health kicked him back into my grandmother’s house, a grown-ass, middle-aged man who now had to depend upon the women in my family. I always got the sense that his biggest burden wasn’t finding the right drug cocktail or the side effects that followed, but losing the independence he had fought so fiercely for throughout his life.
I was thinking about all of this as I headed to the International AIDS conference in Washington, D.C., this week. It’s the largest gathering of AIDS advocates in the world and, because the Obama administration did away with a ban on HIV-positive people entering the United States, it’s being held on American soil for the first time in nearly three decades. D.C. made for a fitting host, since it’s now the U.S. epicenter of the disease, with infection rates among its black residents comparable to those in many sub-Saharan African countries.
Those at highest risk are young black gay men and young, straight black women. But I’m young, black, female, and queer. Theoretically, I’m pretty low risk, and that comes with its privileges. I don’t know one queer woman who’s ever actually used a dental dam during sex. Condoms are useful only sometimes, because they make it easier to clean off a dildo. Even though we’ve been together for four years, it’s only recently that my girlfriend and I floated around the idea of going to get tested.
So what I wanted to figure out in D.C. was why we all take the risks that we do in bed. There are many theories, of course. Sometimes we just don’t know. Sometimes we do know, and willingly put ourselves in harm’s way because that’s what our trauma has taught us to do. But those complicated reflections don’t usually pop up during sex. Something more basic is unfolding.
I figured the conference would at least lead me to the right questions.
And then I met Vanessa Motley, and found myself thinking again about my uncle. She’s a 49-year-old black woman, born and raised in D.C., and has been fighting HIV for 26 years. I didn’t meet her inside the conference itself, but outside–sitting across the street, beneath a tree. It was a Wednesday, and she told me she’d only heard about the conference the Sunday before, while she was watching TV after church. She lives out in Virginia and volunteers at her local YMCA, and she was hoping to get some information to take back to the folks in her community.
But that was proving to be difficult. She’d been trying to get into the conference all morning to volunteer, and was frustrated by all the red tape involved. I asked her if she’s seen a lot of local folks at the conference.
“We’re here, just not sure where we’re supposed to be,” she told me.
And then she began telling me about the long battle she’s waged with the disease. When she got her diagnosis, she was a single mom with two small twin sons at home. She had been in a five year relationship with a man whom she loved fiercely, and had no inkling that anything was wrong until he collapsed at a train station one day. On his way to the hospital, he told her to go get tested. She did. She remembers him saying that he was afraid to tell her the truth because she might have left him. Telling me the story, she laughed at that idea.
“When you care about somebody, love don’t have shit to do with it.”
She wouldn’t have left him, she says, and she didn’t. She stayed with him as the disease attacked his brain and turned him into what she calls a “big infant.” And she was with him when he died on his birthday, October 13, one year after she’d gotten her diagnosis.
Her eyes lit up even as she told me all of this, like remembering and sharing him with a stranger was one way to keep him around. I could tell she’s still in love with him, and so I asked her. She is.
“He was a marvelous guy,” she said. Caring, thoughtful. A womanizer, sure, but a good father figure for the boys, a sweet and gentle man.
We chatted for a while longer and made another failed attempt to get Vanessa registered for the conference. Finally, I handed her my registration badge and wished her luck.
I still don’t have answers about why we all take the risks that we do in pursuit of connection. But I know we all want love, and unrestrained passion. It’s when we no longer have the ability to choose–to stay or to go, to travel the world on our own or move back into our mother’s apartments–that things get painful.