The New York Times calls it a “unique affliction,” a trauma matched only by death-camp survival. But for us, Lazarus Syndrome, named after the biblical figure Christ restored to the living, is just the price we have to pay for life in the protease era. POZ spoke with five PWAs about the long march back from death’s door.
Age 47 Home New York City Occupation Executive director, Project REACH, a youth-led program for at-risk youth Tested Positive 1992
The Dying Game All of a sudden in August ’97, I started getting 106-degree fevers that weren’t accompanied by anything else. I ended up in the hospital three times for a total of 30 days. It was MAI, a non-pulmonary form of TB. Just before then, I told my doctor I wanted to go on the protease. So not only was I taking the new meds, but they piled on top of it all these antibiotics. That first weekend my stomach was wrecked. I was down to almost 100 pounds.
Turning Point Somehow, in the hospital, I didn’t think I was going to die. But it was hard to convince myself because I didn’t seem to be getting better. I was crying every day, breaking down. That went on until December, when I began to get my appetite back. My viral load dropped from over a million to undetectable.
Work Ethic A lot of my friends, as soon as they tested positive, quit work. I couldn’t do that—although I would love to not work—because there’s too much to do. I’ve been with Project REACH for 13, 14 years, and we get four to five weeks of vacation a year, and I barely ever took two weeks. When I got sick, I never went off payroll.
Since coming back, I’ve made decisions, such as asking four out of six staff members to leave, that I would not have made before getting sick. Sometimes I feel I’m not as nice a guy as I used to be. But I feel that until there’s a cure, I have a responsibility to make sure that this program outlasts me. This closeness to death has made me even more clear about the work I’m doing.
Back to the Future I decided recently that I’d much rather be with someone who’s positive than deal with all the neuroses of negative men who go out with positive men. But I don’t know that I have much more of a future than before I got sick, because I’m only a year and a half of being undetectable.
I think it’s somewhat manageable, the virus, but I’m not fooling myself into thinking that it’s over. Whether I live another year or another five, I know what I want out of life: I want as much as I can get.