Like most people, I first heard about AIDS in the early 80’s, but the history of HIV and AIDS starts much earlier. Genetic analysis places the origins of HIV-1 between 1910 and 1930 in West Africa, a full half-century before it’s recognition. The story of my father’s battle with the disease began remarkably close to the date of its first recognition as a disease by the CDC in 1981.
My parents separated shortly thereafter, and I remember like it was yesterday the final moment I heard my father’s voice as a child. At the time, we lived in a trailer park in Radcliff, Kentucky. Half asleep, I heard him walk through the door, but the fatigue in my young body prevented me from fully registering his presence. Had I known it would be the last opportunity to see him until graduation, I’m convinced I would have forced myself awake, and I often reflected back on that memory with regret.
In 1983 we managed to move from the trailer park in Kentucky to an urban ghetto in Charlotte, NC, and I later learned that learned that my father moved to San Francisco not long after my parents separation. Soon after, around the age of nine, I became aware my father was gay. It came out from an argument I had with my mother. I told her that I wanted to go live with dad, and that’s when she said that I shouldn’t do that because he was a homosexual.
I was stunned. I didn’t know how to process the information at such a young age. I didn’t even fully grasp what it meant. I remember talking with some of the neighborhood kids about it, which just left me even more confused.
Later I learned that he was also suffering from severe bipolar disorder, something that has come to haunt my family. Mental issues were not unique to us, but were especially devastating in his case. I was told he often stopped taking his medication, which led to frequent bouts of homelessness and stints in mental institutions. It also came out in conversations that he was a heroin user and would call family members after he had just shot up. That put him squarely in several high risk groups in a region of the country that was being consumed by the disease.
I first became aware of my father’s HIV diagnosis when I was in eighth grade in 1989. My mother told me that we started receiving government benefits related to his condition, though the meager benefits did little to lift us out the abject poverty in which we found ourselves. Despite his status, I still thought about living with him and wondered if my situation would be better if I were.
His illness made me keenly aware of the disease and everything related to it. I would often cringe when people would spout off about things that I knew were false. I remember one time in high school, my favorite teacher gave a comment that made me sick to my stomach. She said she didn’t understand why the government didn’t just round up all the people with AIDS and put them on an island to isolate them from the rest of the population.
I can’t express the shock and betrayal I felt at such an ignorant statement, especially coming from someone I looked up to. By that time, it was well known HIV was caused by blood and certain bodily fluids and was actually difficult to transmit, especially compared to other diseases such as Hepatitis, so I just couldn’t fathom why she would say that. I couldn’t help but think it was related to many people’s false belief that it was a gay disease and God’s retribution against gays and drug users.
In my senior year in high school, I had the opportunity to participate in the North Carolina Mock Trial Competition. I chose the role of the attorney representing a student who had been kicked out grade school as a result of testing positive for HIV. Ironically, the same teacher who made those comments was on the team that coached us, and I took solace in the fact that I won the case and was named honorable mention for best attorney in the competition.
Although I didn’t see my father again until I was seventeen, I did think about him frequently.
My Father’s story, though sadly ended with his death on Father’s Day 1997 when I was 21, just before protease inhibitors became ubiquitous and might have been able to extend his life beyond his early forties. The good news is that for the current generation of HIV patients, the prognosis is much better. While challenges remain with respect to access and education, especially in undeveloped regions of the world, the current cocktail of drugs has allowed many with the means to treat HIV as a chronic condition instead of a death sentence.
While a cure and an effective vaccine has promised to be just beyond the horizon for quite some time, several breakthroughs have occurred in recent years, including the production of a synthetic antibody known as 3BNC117, which give hope to a possible final chapter on the illness.
I know I am not alone in my desire that stigmas of this disease, and other diseases for that matter, will fade and that education and understanding will win out in the future. I am not so naive as to think that this will happen anytime soon, but as our understanding of biology and human nature grows, I am optimistic that our approach to prevention and treatment of diseases will grow along with it.
Roy Huff, MS, MAEd www.owensage.com