Stephen Gendin, one of the founders of POZ and a leading AIDS activist, died just over two years ago on July 19, 2000. Like Kiyoshi Kuromiya, who died two months before him, or Linda Grinberg, who just died in May, Stephen changed and saved lives, even if he ultimately lost his personal fight. How will we remember these warriors who ran out of options, luck and time when so many of us reap the rewards of their work?
That difficult question goes to the heart of my feelings about losing Stephen, who was my friend and remains my hero. I met him when I interviewed for a job at POZ (newly diagnosed and still in the HIV closet myself). I had no idea who he was -- although our paths almost crossed many times, from college to ACT UP -- just that he was really handsome with his purple hair and green jeans (or was it the other way around?).
Stephen hired me, and we worked closely together my first months on the job. He was the first person at POZ I told about my HIV -- I fought my fears about coming out and being openly positive because I wanted to pick his brain about treatment options. He was the most knowledgeable and treatment-experienced (in both senses of the word) person I knew.
Stephen had little time for fears. He didn’t seem to feel guilt or shame about anything at all -- a trait that was as admirable as it was infuriating. Slowly, by example, Stephen gave me the courage to become more open about having HIV. And, by confiding, we became better friends.
But one thing stood in the way. I was so intensely aware of the disparity in our health, I felt like my legitimate worries would seem like whining to him. To ask for his help when I had 300 CD4 cells and he had 20 seemed insensitive. Because I had multiple options and he had few, I held back, even though he could have helped me sort through them better than anyone else -- and would have been glad to do so.
That I don’t doubt. Nonetheless, I remember once talking to him about an early STI clinical trial I was considering. I wanted to stop taking my drugs, and the research was interesting to me. He said something dismissive like, “It’ll never work, but if you want to be a guinea pig, go right ahead.” This exchange hurt me deeply and stopped me, afterward, from seeking his treatment advice. Thinking back now, I wonder: Beneath the fearlessness, the bravado, the generosity, did he have feelings of anger or bitterness toward those around him in better health? (I know I do. HIVers with more CD4 cells and treatment options than I, diagnosed with more certainty of survival than was possible when I was diagnosed, make me feel like my own disease is advancing in the most unwelcome way.)
But I distanced myself from Stephen for other reasons, too -- ones that are very painful to remember, much less write about. As much as I loved Stephen, at times I felt grateful that I was healthier, that I had been infected later. Privately, I got angry at him for staying at work instead of just going out on disability. Watching him come in sick every day, some days sicker, made me scared not only of losing him, but of my own illness and possible death.
It fills me with guilt and sadness to think that a part of me was always comparing my health to his, as a way to find my place on the HIV continuum. My own sense of self-preservation led me to avoid him, when as a friend I should have done everything I could to be there with whatever support he needed. In those last months, I wish I could have looked at him for all the strength and life he had left, not for all that was disappearing.
That’s one thing about heroes like Stephen, Kiyoshi and Linda. They leave us not only with their legacies of defiance, progress, pride and love, but also with shadows of fear and regret -- for the words we didn’t say, the distance we couldn’t bridge, the uneasy, mostly arbitrary disparities of timing and luck we might not have swapped with them even if we could.