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This Positive Life: A Trailblazer Still Marches Forward

December 12, 2012

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Wow. And this was just on AZT monotherapy?

Just on AZT. I am a freak of nature -- I still have not developed resistance to AZT. Nobody can figure it out. Nobody knows why. I did monotherapy AZT for like five or six years. I still take AZT. Nobody in the world takes AZT anymore. I still take AZT. I'm really superstitious about it. It works. If it's not broke, don't fix it.

No kidding. What do you take it with? I'm assuming that you're not taking monotherapy now.

I take Norvir [ritonavir], Sustiva [efavirenz, Stocrin], Reyataz [atazanavir], AZT and 3TC [Epivir, lamivudine].

What has been your experience -- especially having been on AZT for so long -- with side effects?

I've run the gamut. I was on Viread [tenofovir] and developed something called Fanconi syndrome, which is a very rare side effect from Viread. I go to the Cleveland Clinic, and have the most wonderful doctor in the world. She is absolutely brilliant. She's been doing AIDS work forever. I absolutely love her.

I noticed the problem first. No lab test.


What were the symptoms?

When I would urinate, it was like somebody put dishwashing soap in the urinal. I was leeching all the protein out of my kidneys through this tube -- I can't remember what it's called -- but that's part of the Fanconi syndrome. And I was like, "Something is really wrong." She sent me to a kidney specialist. The kidney specialist couldn't figure it out.

My ex-boyfriend had since gotten in this 20-year relationship. He's very into research and stuff. It was right on the package insert. We started getting online, and researching Fanconi syndrome; went back to my doc and said, "This is what we think is going on."

And she felt so horrible. She was like, "Oh, my God, I can't believe I missed this."

I was like, "We are supposed to be partners in this. It is my responsibility to educate myself. We're supposed to be partners. You are not supposed to catch everything. That's not your job. It's our job to work together. I have some skin in the game, too, here, OK? So it's all good. We figured it out, and we didn't damage my kidneys irreparably, so we're good."

Did you go off the Viread after that?

Immediately. Yeah, I was one of those people when Norvir first came out, I was so sick, so I started doing the, what was it? Twelve hundred milligrams? Did it for five days. Had a massive seizure while I was driving. Got back to our shop -- which we'll talk about -- and my partner was like, "Oh, my God. We've got to take you to the emergency room!"

I'm like, "They don't know what this shit is. It's just been on the market for, like a week. The drugstore won't have a printout. They're going to charge me $800 and tell me to stop taking this shit. I can figure that out for myself. Thanks."

Now we take 100 milligrams a day of Norvir, not 1,200 milligrams. It's toxic at 1,200 milligrams.

Did your relationship with friends, family and other folks in the community change after you were diagnosed?

Almost all of my friends died. That changed everything. My family is complicated. I have divested myself of a lot of my biological family, because they were toxic. Some of my biological family is not and I'm amazingly close to them. My youngest brother and I were very, very close. He died about six years ago from pancreatic cancer. His children and I are very close. Back in the day, when six of my friends would die in four weeks, I would just go to his house and hold his babies, because it was the only thing that made sense. Somehow, I thought it made the world OK. His oldest daughter is now the housing case manager at the Columbus AIDS Taskforce. She makes me unbelievably proud and she's like, "Uncle Gil, I didn't do this just because of you. I did it, because it's important." Makes me amazingly proud.

My children are ... I have two boys now. They are amazing. But, particularly with my oldest boy.

This is the one who was 12 when you were diagnosed?

Yeah. My youngest boy is 33 now. He came into my life much later. But my oldest boy knew so many of my friends who died. So every one of them that died was somebody who he loved -- or many of them were people who he loved, and grew up with. That was hard. It has made him an amazing man. He is such a kind man, such a gentle man. I'm really proud of him.

His sister and his biological mother died, both in the same year, a couple of years ago. It was very hard to watch him go through it. But he understood death; he had grown up with death. And so, yeah: It's changed everything.

If they cured AIDS today, for us, in my family, it would never be done. I compare this to the Holocaust, because for gay men, this is our Holocaust in this country. I'm a big fan of Larry Kramer. Larry Kramer's my hero. If it wasn't for him, I'd be dead today, probably. But you'll hear younger, gay guys, or guys just in the generation after me, saying, "Oh, well. You know, the gay community in New York moved up to Chelsea."

I was like, "No, they didn't." In 10 years, in a 10-square-block area, 50,000 gay men died. They did not move; they died. It wiped them out. I can't even walk in the Village anymore, like, down Christopher Street. I get panic attacks. I was there in 1978. I know what it looked like in 1978. I know what it looked like in 1984. I know what it looked like in 1992. It's very difficult still to walk there.

How did your second boy come into your life?

Well, that's kind of wild. This works into Nightsweats & T-Cells. I work for an organization called Nightsweats & T-Cells. We run an employment project for people with HIV and AIDS. We design T-shirts. We have our own line of T-shirts, and we do design work and printing for AIDS organizations all over the country.

But how did Nightsweats & T-Cells start?

Nightsweats & T-Cells is a very old AIDS organization. Paul Monette, who wrote Borrowed Time and Becoming a Man: Paul Monette and his best friend, Victor Brown, were on a cruise. Victor designed greeting cards before he became ill with AIDS. They met a social worker from Cleveland. The three of them would say things about AIDS. They would have conversations and they would say, "Well, that should be a T-shirt. Because if that was a T-shirt, and you were wearing that T-shirt in line in the grocery store, the people around you could not ignore that part of AIDS."

Then they were like, "OK, well, if we made these T-shirts, we would have this company called Nightsweats & T-Cells." They made up this mythical company.

A social worker had been with them on the trip, and she came back to Cleveland. She worked in the AIDS field in Cleveland. She was doing an event, and she heard there was a screen printer who was HIV positive. She needed T-shirts for this event. So she went to him and said, "I need these T-shirts for this event." Then she was like, "Oh, and by the way, me and my friends have been saying these things. We should do these shirts." So they started Nightsweats & T-Cells.

At first, she would travel to AIDS conferences, like the one we're at now, and she would wear these shirts at the conference. People would say, "Wow, that's a really cool shirt. Where did you get it?"

And she'd go, "Oh, I have like three dozen in my room." They would sell them off her back, practically, and say, "OK, what should we do with the money?"

"Well, so-and-so needs money. Let's just give him the money."

She got really pissed off one day and she was like, "So-and-so's sitting at home. He's not dying of AIDS; he's dying of boredom. He's not sick seven days a week. Couldn't we bring him in here on the days he's healthy enough to work? Teach him how to do this? And give him a paycheck instead of a handout? And let him keep his dignity?"

This started locally in Cleveland and then in '92 -- well, in '91 we knew the Quilt was going to be in D.C. in '92, and a bunch of us people with AIDS wanted to go. But it was not going to be there for people with AIDS. Because people with AIDS who are living on disability on $800 a month cannot afford to go to Washington, D.C., for four days to participate in this event. So we were like, "OK, how are we going to do this?"

Well, my partner at the time, who was one of the founders of Nightsweats, and I were on the verge of being homeless. We're like, "OK, we'll take our credit cards. We'll buy a bunch of blank T-shirts. We'll print out our designs. Get a street vendor's license."

I borrowed my brother's van. We pulled up to a legal vending space on the street, opened the side doors, put our table up and put our designs on it -- we may have had eight or 10 at the time. We started telling people what we were trying to do to employ people with AIDS.

Two things happened. The first thing that happened was we literally could not take money from people fast enough when they heard what we were telling them. The love was so amazing; it was so palpable. They thought what we had to say on our shirts was so important.

The second thing that happened was that people with HIV and AIDS from all over the country were like, "God, this is so cool. Have you heard of anything like this in my city? Are you going to franchise? Will you start something like this in our city with us?" And, you know, we were all people with AIDS who had limited energy.

We did hear that there was one other organization through one guy who had obvious neurological [issues]. He was trying to tell us that there was somebody else doing something similar to what we were doing in New York. Couldn't get it together to explain it all to us. So we got back from D.C. And, by the way, it was really successful. Ended up on the grounds with the Quilt, which was illegal, but the ACT-UP people dragged us over there. They were like, "You guys really need to be with us." We had an internal discussion, because the park police could seize all of our product, all our money, and I'm like, "We'll wind up being homeless." But it was so important that we were like, "OK, we're going to risk it. We're going over there." And we did.

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