We were living in Oakland in 1986. A friend of mine who worked with me told me, “You know, you should go get this test, it’s brand new, and test for this AIDS thing.” We didn’t really even know what it was. And he went and tested, and tested positive. Oh, my God. I was shocked. And I tested positive. And [my partner] Gary tested positive. Everybody tested positive in those days.
I was 35. Gary was 24.
I just wanted to know how long I would be alive, how many years. There was no medicine you could take. It was basically the kiss of death. And it was just a matter of: What do you think I’m going to get? Am I going to get cancer spots? Am I going to get pneumonia? We had friends who died of the most bizarre things you didn’t think were traveling around. And it was usually just an awful death. It wasn’t like a heart attack or something simple.
And then the treatment was just shotgun: they would try a little AZT [one of the first U.S.-approved drugs to treat AIDS] and that wouldn’t work, so they’d double the dose or triple it, and then you’d die of AZT poisoning. It was a really rough time. Then they started doing [antiretroviral drug] combinations, and that’s when it started to get a little bit better.
I immersed myself in work and hanging out with Gary. We didn’t dwell on [having HIV]. We had friends we took care of. And I became an emotional counselor for an AIDS group. Usually, I’d meet a couple of guys once or twice a week, take them to the beach or take them to the grocery store, take them to the doctor. That kept my mind off of me.
So Gary and I both worked and really didn’t think much of it. He had no symptoms either. We both thought we were OK. In fact, we moved up here [to Seattle] in 1991 or ’92, and we both still had no symptoms. And then he came down with dementia of all things. He was just losing his mind. He couldn’t think. His doctor put him on the meds. That was about 1995. It was the first time either of us had been on meds. Just like that, it took him back to normal. So we just kept going on.
That’s when I started seeing [Gary’s doctor]. He said, “You don’t have any symptoms. Your T cells are great. Your viral load’s really low. So why don’t you join this study [A Fred Hutch study on long-term nonprogressors]?” I’ve been with them ever since.
I’ve been [to the Seattle Vaccine Trials Unit clinic] 97 times now. It’s about every six weeks. I think you should give something back. Be grateful for what you have.
Gary died in September 2011. We were watching TV. I went out to meet my good friend John and had a beer. Came back and found him facedown. Right here. I dialed 911. They couldn’t revive him.
It was like it wasn’t happening. I couldn’t believe it.
The doctor said it was AIDS. One of the side effects of [HIV infection] can be clogging of the arteries. Doc said they don’t know the long-term effect of these [antiretroviral drug] cocktails because people haven’t lived long enough to see. He thinks it was a heart attack due to clogging of the arteries. He put AIDS on the death certificate. [Gary] was 49.
Why him, not me? It is a weird happenstance. It’s also a blessing. I wouldn’t be here enjoying all this: my house, my yard. It’s a blessing. That’s why I do this [study]. I think maybe, hopefully, some time, they’ll find a cure for this, and people won’t lose their partners and they won’t have to go on the cocktail and they won’t have some unknown side effect kill them in their early adult lives. There’s hope.
