New York City, 07.01.02; Cover Boy, POZ, May 1997
AIDS work has been a force of life for me, what's kept me going. Now I want to make writing my life force. I want to reclaim my passion for literature, take my life back to where I left it before AIDS. So I had to rearrange my time and my priorities, but I managed to write a collection of poetry, Poems of Immune Logic. I've also written short stories -- three will be published soon -- and I just jumped into the adventure of writing a novel.
A few writers have really inspired me -- Manuel Ramos Otero, a Puerto Rican writer who died of AIDS; Angel Maria Dávila, an amazing Puerto Rican poet from the '60s; and, of course, Gabriel Garcia Marquez. Because music was a big part of my life -- I played French horn for many years -- there is a rhythm to what I write. Music is everywhere.
I was sick to the point where I had, for two years, less than 50 T cells -- in '95, '96, I even had almost zero and was showing symptoms of AIDS. I lost weight. I had candidiasis, fatigue, fevers and nightsweats. Now, on a combination of Kaletra, Zerit, Ziagen and hydroxyurea, I'm doing amazingly well. My count last week was 695 T cells, and I had an undetectable viral load. I've gained back my weight and my energy. The only thing that worries me now is I've developed cardiomyopathy, a condition usually caused by long-term viral infections that can lead to heart failure.
In the beginning, it was about us. We were pissed: "What do you mean, I'm going to die young? What do you mean, my friends are dying?" But the more this epidemic evolves, the more it's not just about me anymore. You need to learn to look at the big picture, not just how AIDS affects you, but those around you and in other countries.
Sometimes I miss the camaraderie and community of ACT UP. But people in ACT UP thought they were leading the movement, and they never took the time to look around at other grass-roots efforts. As a person of color, I learned that activism is not just civil disobedience in front of cameras, but also programs to educate a community.
Some people take the activist role religiously, so when I went from ACT UP to the National Minority AIDS Council and then to the corporate side [SCIENS Worldwide Medical Education], they said, "You're becoming one of them." But this epidemic requires us to be everywhere, doing what we can, so things get done right. We have to be on the inside, the outside, under, on top. If I know where my heart is, I'll do the right thing.
When I was 25, I thought I'd die in my late 20s, and it didn't happen. So I'm going to act like I have a future, and I probably will.