My recent info post about World AIDS Day was sparked by my answers to this question, but that post grew too many words for me to go on to discuss the personal aspect. I guess I had to get some science out of my system :)
Why do I think about HIV? I ask myself this question a lot. I do not have HIV or high risk factors for contracting it, nor do my loved ones, as far as I know. I don’t see patients anymore. And while I try to shy away from the comparative misery game, there are health and social issues more dire, common, and immediate than HIV. Still, as a cause it is somehow very personal to me.
Below is a photo of an object that lives on my treasured knick-knacks shelf (that place where I keep items inexplicably more valuable than words or money). It is a cheap drinking glass, wrapped in wire mesh, with hundreds of AIDS ribbons, hand-folded by myself and 5 students, stitched on it. It was part of an art installation for a World AIDS Day event at a school where I was a teacher a few years ago.
The theme was ‘A Place at the Table’ and any school club could create a table setting about how their club’s topic connected to HIV and AIDS awareness. My eye falls and catches on this object at least once a day. The color is vivid, the riot of ribbons is eye-grabbing, and the hours of work that went into it -chatting and laughing while folding ribbons with students, threading each ribbon to the mesh, the excitement, engagement, and skills of the young gay men who had started this club (and asked me to advise) in the first place. It is the most tangible evidence I have of the way this epidemic has connected to my life.
I was alive and aware in the 1980’s when the problem of a mysterious, severe disease had become widespread enough to make the nightly news, but cause and prevention were still unsolved. I loved science and was hoping there would be some great question for me to answer one day, so I liked hearing about researchers at work. At the same time it was terrifying: a girl in my school was a hemophiliac, I had surgery in that time period, a dentist had infected some patients and I was already scared of the dentist! But rather than fading with the change of the news cycle, those early impressions laid a foundation I have continued to tether facts and experiences to my whole life.
The first friend who ever came out to me. Two friends who died of heroin overdoses (before any of us were 19). Reading Angels in America in college. The first time the GYN adds an HIV test to my routine panel. The first time discussing it with a sexual partner. All the privacy paperwork in hospitals and the extra layer for HIV. Ordering HIV tests on patients. Operating on an HIV-positive patient, and pricking my finger.
Meeting a man who spoke, ambiguously at first, of a partner who required some care. And later, as we became friends revealed his husband was sick. With a rare disease. Finally, giving me an “I don’t have to explain because you know what I’m talking about, right?” look he told me his partner was suffering from progressive multifocal leukoencephalopathy. I felt honored to meet his husband before he died not two years later of complications of AIDS.
I diagnosed an 18-month old with HIV, and by extension his mother. With no other private place to talk about it, we cried together in a janitor’s closet, in outrage over her ex who had intentionally infected her. I treated a 21 year old who had the virus since birth, but in spite of treatment and many good years, the virus had out-mutated the drugs available. And besides he was tired of taking them. Each new revision of the cocktail made him feel not himself in some new way. The latest had stolen his since of taste and replaced with with something consistently like chewing tinfoil. He checked into the hospital to waste away. Bringing him Lorna Doones was the only thing that would make him smile. I piled them by his bedside.
As a teacher, I was honored to advise a student group devoted to raising awareness of HIV and AIDS. Spurred by the students I learned more and more about the disease and all the ways it infiltrates our culture. So HIV is personal to me. In an odd way a friend. An interesting problem which has been hanging around my whole life, manifested in cherished, potent moments of connection.
So if you’re looking for a cause to get under your skin, I think it’s hard to find one more beautifully human than HIV/AIDS. But obviously, I’m biased.