Editor’s note: We recently asked POZ Personals members to share their experiences with HIV stigma and how it affected them. You can read a collection of those stories as they pertain to sex and romance here and as they relate to friends and health care professionals here. But one response was so vividly and uniquely recounted that we wanted to share the full story below, slightly edited.
I’ve been HIV positive ever since the first test came out, so I’ve had many chances to get used to the stigma that often goes hand in hand with this virus. I also worked raising money for one of the nation’s first AIDS hospitals, so I got to go out in the community and speak with people who were scared to death that shaking my hand would number their days on earth (none of them knew I was HIV positive, but I worked for an AIDS hospital, so it was just a given that I had something horribly contagious).
But the one memory that stuck with me actually came from someone in my own community, and it still bothers me to this day. I had an amazing group of gay men who helped me with community events. We were organizing a huge fundraiser that we needed desperately—money was short for people with AIDS, since the lot of them were scheduled to die on the sooner side of later. These men who helped me were mostly negative, and they were a godsend.
One evening, this guy—Josh, let’s call him—stayed after our meeting to “help me clean up.” If you ever saw my house, you would realize that only a blind man would think there was any chance of cleaning up my place, but I welcomed the company. As we cleaned, he asked if I ever dated. “It gets in the way of my depression,” I explained to him. “Well, would you like to go to dinner one evening?” he asked.
I just stared. Josh was hot—like, “I would drink this man’s bathwater” hot. Neither chiseled, nor GQ looks. More like a white-collar guy with blue-collar looks, an everyday guy who’d look good on sheets with 200-count threads.
“Dinner?” I said.
“Yeah,” he answered. “You know, where you go to a restaurant and order food from gay men who spit on your plates because they’re jealous that you’re on a date?”
“You’re not very good at this, are you?” he asked.
“Dinner covered with the waiter’s spit sounds great,” I said.
We made plans. The following week we’d meet up at this local eatery. Seven o’clock. Casual dress. Dutch.
Time usually flew, but it seemed like the night of our “date” would never arrive. I had no idea what to do—and I had helped host any number of circuit parties where there were tons of nearly naked men dancing their way through the latest of designer drugs, though I watched over them more as a chaperone.
I ended up dressing in flannel and jeans, because Under Armour hadn’t been invented yet. Josh showed in the same. It was a burger joint, so we ordered burgers, fries and beer. He was the only son of a family of daughters, and his parents thought he had hung the moon as well as the stars. He liked to read, wasn’t much into TV and liked to volunteer to help others. He had this habit of staring into your soul when he spoke with you, which was a little disconcerting but one of those things I knew that time could somehow resolve. We finished. I grabbed the check, because fundraisers sort of get in the habit of grabbing the check.
“I’ll get it next time,” he said. “Care for a walk?”
“After a plate of fried carbs?” I answered. “I might be up for 15 or 20 miles.”
It was one of those fall nights where skinny people whined about the early arrival of winter. For us, it was fine. We walked and talked. Then talked and walked. Finally, he stopped on this bridge we were crossing. I followed suit. He brushed my cheek with the back of his hand. Then leaned in to kiss me.
Remember, this was back when they had barely figured out that AIDS wasn’t an airborne virus.
I stopped him before our lips met: “No good way to mention this, but I just found out that I’m positive.”
I didn’t have to block any more advances. In fact, he backed up a mile or two in seconds. Record time.
“I, uh,” he said. “It’s um. Ah…uh…”
“It’s OK,” I said.
“Yeah, sure, right,” he said. “It’s…it’s fine. But I got to go. I really had a great time, but I have to, well, you know. Go? Work tomorrow. Early. So thanks for everything. It really was great. So thanks.”
With that, he turned and actually ran in the opposite direction. He just ran. It was like walking into the middle of some Fellini film after accidentally swallowing 23 hits of acid. I just stared as he disappeared into the night. I had sat on the bedside of over 100 people who died of AIDS, and nothing I had gone through had come close to making me feel like I did at that moment.
I was a leper who wasn’t even good enough for his own people.
I was raised in an Italian family, and when I was still at an early age, my mom pointed out that the fact that the word pity was real close to the word puke in the dictionary was not by chance. She explained that my grandfather arrived at Ellis Island with 32 cents in his pocket, and he couldn’t speak a word of English. Yet he made it. Like him, I could do the same if I didn’t give in to feeling sorry for who or where I was in life.
So I didn’t talk about that night to anyone. I know, I should have found some amazing psychologist who could help me change my inner child’s diaper, but that just wasn’t my style. I just got more involved with work and took to avoiding men at all costs.
The next two years passed in a blink. For those who were around in those earlier days, you’ll recall that every day brought new news, questions and hopes. I refused to do any HIV drugs, since everyone I knew was dying even worse deaths with the drugs than those who just died naturally. Four specialists said they refused to see me if I wouldn’t do AZT. Those poor doctors didn’t realize that I had been rejected by the best.
I immersed myself in seven days a week of work, continued working out and adopted a butt-ugly dog, and I got along with the help of some wonderful, amazing friends.
One night I was sitting and painting in this Day of the Dead Oaxaca-like art style I’d developed; it was a piece where a group of skeletons was running in fear from a Southern Baptist family reunion. The phone rang.
“Hello?” I said.
“I have no right to call you,” Josh said.
“I’m sorry?” I asked.
“I tested positive yesterday, and you’re the only person I know with AIDS,” he answered.
I had seen him since that night he ran off with my dignity and heart in tow. He still attended the fundraising meetings.
“I don’t know what to do,” he said.
I listened for at least an hour as he explained how things had happened. A party. Some drugs. People who said they weren’t positive. Sex. More drugs. More unprotected sex.
“None of them looked diseased,” he said.
“That was before the state started making us tattoo the 666 on our foreheads,” I said. “It’s ultraviolet ink, so it goes with anything.”
I just sat there in silence. I was still angry with him for what he had done. But he was scared.
“What do I do?” he asked.
“The first thing you have to do is get over the fear of dying,” I said.
“That’s easy for you,” he said. “You’ve had this shit for years.”
I had learned to listen and fell immediately back into that mode. Newly diagnosed people are not always open to logical advice. As we spoke, I offered him local numbers to call and organizations to join. I told him the doctors he’d want to see and that I was up early and late, which made me easy to reach.
He thanked me for my help. And never called again.
Eleanor Roosevelt once said, “No one can make you feel inferior without your consent.” Somewhere in that line is the hope that’s allowed me to outlive Josh and many of the handsome men who hung with him and his band of manly men. That and a few hundred hours in therapy have somehow allowed me to find myself and the strength to carry on.
I appreciate you allowing me to share these words, and I pray you find your way through a life that offers few guides and no maps.