World AIDS Day, Part 2: Stories

Missing the World AIDS Day Gatherings

With the COVID pandemic in its third year, most people are starting to meet in person again. That means that people who want to honor and celebrate those we lost to AIDS can do so in person. Carefully and with many precautions, perhaps even more than usual to protect the extra vulnerable people. I wish I could join. I used to attend World AIDS day events every year.It was important to me to share the collective grief.  To support others and to be with people who understood what I was feeling. But I’m going to be separated from those communal gatherings again because I’m still in rehab, recovering from a serious (not COVID) illness. 

Nevertheless, I can’t let World AIDS Day go by unrecognized. The impact HIV has had in my own life is just too great. And with the launch of 2 Rules of Writing on December 1 2021 (last year), I didn’t really have a space to talk about how I was feeling about HIV.

And it was a big deal. Last year would have been thirty years since I first became involved in HIV work. That work has taught me so much. It’s brought me joy and sadness. Taught me about science and politics. Helped me better understand racism. I learned how to teach because of my work with HIV. It led me to graduate school and my MSW. It gave me emotionally safe ways to connect with the queer community before I was ready to confront my own feelings, and it gave me a safe path to come out. And it introduced me to many friends. 

How I met Greg

The first time I met a person I knew had HIV was in high school. I was fifteen. My school was holding some kind of health awareness week. Five days of various health education programs and opportunities. Sometimes teachers would take entire classes to participate in one of the programs that was going on during that class period. We were expected to go to one of the presentations instead of physical education that week. Many of the presentations took place in the gym and the teachers were taking attendance.

There wasn’t much hope of sneaking away, either, as there might have been during other assemblies. They covered the usual topics that high schoolers were supposed to pay attention to: anti-smoking information, alcohol and other drugs, nutrition, stress management. There was one very popular one about suicide prevention. I had no interest in being clubbed over the head with the same don’t drink, don’t smoke, just say no messages that I’d been hearing since forever. Most of my other choices were equally uninteresting. I went to the least boring sounding presentation offered: one where someone would be speaking about HIV.

I found a spot in the bleachers, out of the way, where I thought that, after a polite amount of time listening, I could pull out my book to read or perhaps get a little homework done. The speaker, a tall, well built Black man with a wide, welcoming smile stood up and introduced himself as “Greg.” He told a story about growing up on Long Island, about experimenting sexually and coming to terms with the fact that he was gay. I did my best to hide it, but my interest was definitely piqued. I was still struggling to accept my own queerness, even if I hadn’t even kissed another girl yet. 

So I listened intently to the story. How he had remained deeply closeted. How he’d gone with a friend to give blood at a Red Cross blood drive, and had received a letter that he was permanently deferred from donating blood. (He learned that he was HIV positive when he followed up on that letter.) And how he’d had to tell his mother that he was gay and had HIV all at once. Then I listened to him talk about what it was like living with it. There was, of course, the expected discussion about how to prevent HIV. Don’t have sex. If you have sex, use a condom. Yes, you can get an HIV test without your parents knowing. 

AIDS Activism was my Way Out of the Closet

That may have been the first time I heard someone come out in person. Not on TV or in a movie, but a real, live person in front of me. And even though I was adamant that I was straight, I still felt a magnetic pull to connect with the queer community. I couldn’t ignore it. I hung back after the presentation to ask a few questions. My heart knew what my head wouldn’t let me admit. I needed queer role models in my life.

Not long after I’d found out who was providing HIV education in the community, I began volunteering to help with community education. I learned how to talk with different people about the facts: how HIV is transmitted, how it isn’t transmitted, and how to prevent it. I met people with so many different stories about their own experiences living with HIV. How they got it–from a one night stand. From a spouse who was secretly using drugs and was on the down-low. From a long time partner. There were compelling stories from so many people.

I heard stories of loss from the partners of people who had died, and I learned about how the queer community had been devastated by the thousands of lives lost. I also learned about their resilience and inspiration. The grassroots organizing, not just for groups like ACT-UP or GMHC (which began as Gay Men’s Health Crisis,) but the way small groups of people would join together to make sure that the physical, emotional and other needs of people living with AIDS were met. The way that queer people, especially lesbians, stepped in to take care of people who were sick and dying, especially when the families of origin often refused. And sometimes families of choice had been nearly wiped out by AIDS, too.

Even after I went off to college and became involved in HIV prevention work there, I kept my ties to home, spending time during breaks visiting with friends, volunteering in the office, and learning everything I could. Eventually I began to help train other peer educators. I learned about the difference between “safe sex” and “safer sex.” I came out, and the announcement was not met with surprise. Leastwise not by the family I had made for myself in these public health spaces. Instead it seemed to be met with relief that I’d finally become comfortable enough with my own self to come out. 

Greg was Who I Turned to When it Mattered

When I finally began talking about the night I was date-raped, Greg was the one who asked if I’d ever gotten an HIV test. The answer was “no.” And over several months, the answer remained “no.” I just wasn’t ready to deal with that yet. There was so much else I was dealing with. My mother was barely speaking to me. My best friend had gotten into a tremendous fight with her roommate, who also happened to be the man who raped me, and she was now crashing on the floor of my studio apartment.

I was trying to figure out what to do with my life, because the deadline to declare a major was staring me in the face. One night on the phone, Greg asked again if I’d gotten an HIV test. When the answer was still, “no,” he’d had enough. He unleashed a flood of emotions on me. Telling me how irresponsible it was of me not to find out. That if I’d gotten pregnant then (or during any other pregnancy scare) I’d have already had to make decisions about that. That it only takes one time to become infected with HIV. And the most frightening: that not knowing wouldn’t change the outcome.

I got my first HIV test a few weeks later. The wait in between the blood draw and getting the results seemed to take far longer than the two calendar weeks that it actually lasted. I’ll never forget the feeling of seeing the man giving my HIV test results come into the room carrying a piece of paper that said “Your results are positive.” And I won’t forget the feeling of relief when he flipped the paper over, circled the heading that said “Your results are negative,” and began explaining what that meant. 

I made a guilt-filled phone call that night. I felt guilty about waiting. Then I felt guilty about my negative result. Greg’s support was unwavering. I was reminded that nothing that had happened that night was my fault. That that would have been true no matter what the results were. And that I knew how to make safe choices when I had the power to do that.

Office Friendship

I saw a lot more of Greg when I was in graduate school. I was offered an internship with the same agency we’d both been volunteering at. He was still regularly speaking publicly about his experience living with HIV. I was developing educational programs and providing counseling to clients. Greg was also a performer. I tried to see him in everything he was in, especially the musicals. I can’t remember the titles anymore, but I just remember him being such a good dancer.

And he went back and forth between long and short hair a lot. One week it would be short. Then he would get a new weave, and his braids and beads would be bouncing when he walked.

We had a formal dance/gay prom sort of thing in June one year. I wore this incredible green dress. My friend Keith had agreed to be my “date” and had even brought me a corsage.

We weren’t expecting Greg to show up. He’d been sick around that time. With bronchitis or something. The kind of thing that would knock me out for a week or so, but knocked him out for a month or more. But he showed up that night. Still not a hundred percent, but he got dressed up and showed up for the kids.

No Such Thing as a Minor Cut

One afternoon while we were in the office, another volunteer got a cut on his arm. It was in an awkward spot, about halfway up to his elbow. He clearly needed something to cover it with.

As he headed to the bathroom to wash it out, I said “Show it to me, so I can get the right band aids from the first aid kit.” I reached out to grab his hand so I could hold his arm still and get a good look at the cut. He yelled at me not to touch, that I knew better and that everyone used universal (now called standard) precautions. I recoiled. This other volunteer had never told me that he was HIV positive, but I’d seen his giant pill organizer. It wasn’t hard to deduce what it was for. More than that, I could see the panic in his eyes as he pulled his arm away from me. With or without those clues, I knew better than to touch the blood or the open wound.

And after he went off to the bathroom to clean up, Greg looked at me. I was clearly shaken by the reaction. He looked at me very seriously and said, “He was trying to protect you. You know that.” He hugged me and I went back to what I was doing. Nothing more needed to be said. I certainly knew better than to get near blood without gloves on. We both knew better than to disclose someone else’s HIV status. Greg also knew that I was not unaware of what was going on. We never talked about it again. 

Building Queer Community, One Gay Jeopardy Night at a Time

We worked on the helpline together. Answering phone calls for people who were seeking information and support about LGBTQ+ issues. We helped out with a coffee-house-type program on Friday nights that was supposed to provide a safe space for queer teens to come and hang out with other queer teens. Part of the requirement for the grant that funded that program was that we provide HIV education and resources through the program.

Sometimes we were very direct about it, like when we would hold “Gayme Night” once every few months, and would play “Gay Jeopardy” where we wrote questions about queer history and celebrities and pop culture. We always included a category about HIV and safer sex, and always included a question about the four body fluids that could transmit HIV. When the question was answered, the person answering seemed to always answer, “What is blood, semen, breast milk and… pussy juice!” before everyone dissolved into raucous laughter. That phrase seemed to come with a thrill, and the adults responsible for organizing the game were endlessly amused at how excitedly whatever kid would shout out the answer. 

Greg was one of the people who tried to teach me how to celebrate myself, to love my queerness and to love all the broken parts.

This Story has a Happy Ending if you Stop Reading Here

My last memory of Greg is on one of those Friday nights. There was music and dancing that night, piped throughout the office. Greg hadn’t planned to be there that evening, but he’d ended up with an unexpected evening off, which he’d chosen to spend at least part of with a whole lot of kids. The helpline had been quiet that night, and a bunch of the adults–staff and volunteers, were dancing around the office to whatever music the kids had put on in another room. Greg had recently had braids done, and they swung wildly. The beads rattling as he moved. His smile beamed, and we all shook and twirled, avoiding the double desk in the middle of the room.

One of the kids put on the Janet Jackson song, “Together Again.” I made a face. The song had been played endlessly on the radio after its release. If you could wear out a CD, the kids would have done that with our CD. I was tired of the song. It had become one of my least favorite songs to hear. Greg noticed the look on my face and asked me why.

“I hate this song,” I said.
“But it’s about friends who died of AIDS,” he answered. 
“I know. But I’m still just tired of the song.”

Tired of Fighting

There weren’t any words needed to respond. He was tired of being sick. We were all tired of fighting. Fighting to be seen and heard as queer people, fighting for equality and justice. Fighting to get the messages about HIV out to the people who needed to hear them. And tired of the worrying and the grief. 

We kept dancing. Song after song after song we danced. Until it was time to complete the night’s paperwork and send the kids home. We decamped to a nearby diner where I ate my usual omelet with mushrooms and American cheese. The same thing I ate every Friday after we packed up. Hours later we left the diner, each of us going our separate ways. 

I should have said more. Should have hugged longer. I should have taken pictures. 

World AIDS Day and the Art of Possibilities

The poet Mary Bowman, who was born with HIV in 1988 and died just a few years ago, wrote:

I was once told that in order to move forward
One must be aware of the past
So as not to repeat such

Sankofa, a gift from Ghana
Teaches us, it is wise
To not only peer into the past
But to also collect nuggets
Necessary for the journey

The Art of Possibilities

When you’re disabled in the ways I am, dancing is a state of mind. But I keep dancing for my friends who can’t anymore. I keep fighting because I cannot imagine a world in which we go back–back to the secrecy, the shame, the closets. But I keep collecting the nuggets necessary for the journey. That’s something that never stops. If I’m doing it right, I’ll leave my own Hansel-and-Gretl-like trail behind me. Someone else’s nuggets for their own journey.