HIV Treatment Education in 2002
It was sixteen years ago that I first learned my HIV status. My partner, Antonio, had been sick off and on for months and, as a result, had lost a lot of weight. In April of 1986 he was hospitalized with pneumonia. I remember the exact afternoon, when the doctor came out from examining Tony and told me that Tony had AIDS. He asked about our relationship. I told him that we had been together for eight years. Then the doctor informed me that Tony was going to die from AIDS. And so would I.
Following several bouts of PCP, and after developing Kaposi's sarcoma and dementia, Antonio died at 11:23 am on October 8, 1986. AIDS. There was no mono, dual or triple combination therapy. No poverty or malnutrition. No substance use, illegal drugs or "hedonistic" lifestyle. No alternative therapy. But more importantly, there was no knowledge, an absence of information on the disease and how to treat it. Straight up AIDS. And there we were -- alone, confused and scared. What did we know? Zero. Zip. Nada.
But I'm still here. Healthy. Drug-free. Take that, doctor know-it-all.
It wasn't an easy process. I had to take ownership of this disease and educate myself. That took time, energy, and most of all a commitment on my part. I have been involved as a volunteer with several community-based HIV organizations over the years. Five years ago, I joined the staff of Test Positive Aware Network as the Men of Color HIV/AIDS (MOCHA) Director. Two years later, I became editor of the agency's two HIV treatment journals, Positively Aware and Positively Aware en Espanol. And as of July 1, 2002, I was appointed Executive Director of the organization. Yet I still consider myself a treatment educator and advocate, because you can't survive if you aren't informed.
Throughout my self-education about HIV disease over the last sixteen years, I have noticed that the sense of helplessness that I, and others like me, experienced back in the 1980s has not completely vanished. While the 1980s slowly gave way to a generation of AIDS activists and advocates, there are still too many people living with HIV in the year 2002. Many of these people are too afraid to test for HIV, too paralyzed to come to terms with their HIV-positive selves, and too fearful to disclose their status to even their closest friends.
And that's why I keep on keepin' on.
I've watched the bodies of friends slowly shut down for any number of reasons related to HIV. The silver bullet that we hoped HAART was a few short years back looks a bit tarnished today. When should you start treatment? When should you stop treatment, if ever? We're not quite as sure as we thought we were just a few years ago. The shine may have worn off somewhat, but that's no excuse to surrender.
In response to an editorial I wrote in Positively Aware earlier this year, a reader wrote, "I'm grateful that you all are doing what it is you know how to do best. I'm sure you're tired, stressed, depressed and overwhelmed. But remember that there are thousands of people like me who gain experience, strength and hope from what you're doing and for that I'm not tired. I, AM, GRATEFUL!"
I, too, am grateful. I'm grateful that I've been given these last sixteen years to grow as a human being and to achieve goals that I once thought were impossible. I'm grateful that I didn't waste the opportunities afforded me over these many years. I'm grateful that I've been granted the chance to make a difference in at least one person's life. If I can help one person not to be afraid, to let go of the fear which can paralyze, then I've made good on the opportunity granted me. Because that is what it is really all about.
God knows it's not about the money. Oh, hell no!
I'm grateful that my "work" not only makes a real difference in my day-to-day existence, but also in the lives of so many unknown people. The struggle against HIV/AIDS, like the civil rights, gay and women's movements, must continue as a collaborative effort. I'm grateful for the many HIV-positive people -- from all over the world -- who have collaborated on the direction my life has taken over the years.
Charles E. Clifton is Executive Director, Test Positive Aware Network; Editor, Positively Aware; Chicago, Illinois.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.