Something is wrong with me. On a hot spring day a little over a year ago, my relaxing long stroll through the city was rudely interrupted. Tingling and numbness in my legs and right hand had been routine for years, but something new was happening now. The annoying tingle had turned into pain. Pins and needles were pricking the soles and tops of my feet as well as my ankles and going halfway up my calves. As I was trudging home, the ground suddenly rocked underfoot. For two or three seconds, I was sure the earth had quaked — but as I looked around the busy street, I realized I was the only one reacting, and then seconds later I realized that an earthquake in Washington, D.C., wasn’t very likely. Had I had a stroke? I made it home and stayed in bed for three days.
I called about 40 doctors’ offices in D.C., and all but two told me they were not accepting new patients; the two who were said they were seeing only new patients who were HIV-positive. That’s not me, I said, and kept looking.
Finally I found an office just outside the city¸ and after a routine examination, the doctor said we’d run an array of tests. He looked down at his prescription pad as he wrote orders for MRIs of my brain to rule out multiple sclerosis, my lumbar spine to rule out a bad back injury, blood tests for B-vitamin levels, and — he looked up and stared me square in the face for a moment and then looked back down — for HIV, he said. Then he checked off the HIV-1 and HIV-2 boxes on the blood test. The slight tremors I’ve always had in my hands turned into pronounced shaking — from fear.
I was born in 1978 and was severely anemic until age 5 or 6, I am told. I have vague memories of my father forcing food down my throat, and I can still taste and smell the liquid iron that became a regular part of my diet. My mother and father opted for a red meat–based diet and iron that turned my teeth black as a better alternative to the doctor-recommended treatment of blood transfusions. It was the early 1980s, and AIDS — or GRID, as it was then known — was the new black plague. The epidemic was a medical mystery, and my mother was not willing to take the chance of transfusing contaminated blood into her baby’s system.
I grew up hearing about my anemia epic and of the choice my parents made. I think they told me so often partly out of their own trauma and partly as a way to let me know that those traumatic force-feedings were to save me, not to hurt me. With all the medical talk, I grew up with an interest in health. I paid attention in health class, and by third grade I knew I wanted to be a biologist.
By middle school, health class began to focus on sexuality and—this being the early- to mid-1990s—there was a special focus on HIV and AIDS, just at the time my sexuality was making itself known to me. By the time I had survived all the traumas of high school and became sexually active, I realized two things about myself: one is that one of my major life goals was to avoid HIV at all costs. The other is that I felt certain, irrationally, that HIV would be an inevitable part of my life.
Anyone is susceptible to it, of course, but growing up gay during the ’80s and ’90s, I don’t think I will ever be able to disassociate my sexual identity from HIV. Especially given that the D.C. area’s HIV infection rates have been said to be higher than those of West Africa. Sex, even protected, always feels like a game of Russian roulette.
Short of being abstinent, I’ve always, always been “safer.” But HIV remains the bogeyman of my life. I am scared to death of it, for good reason, but to an irrational extent. I was horrified recently to hear a physician on a morning TV show say, “Our hope is that one day cancer will be like HIV — something you can live with, not die from.” Despite the truth of that statement, for me, it is an unconscionable idea.
Last year, while I was waiting for the results of the blood tests, MRIs, and the nightmarish EMG nerve conduction test, which involved being stuck with needles and zapped with electricity for an hour, I read everything I could find about my symptoms, all of which seemed neurological in nature. The best matches seemed to be multiple sclerosis, diabetes, Lyme disease, or advanced AIDS-related neuropathy. Not diabetic.
The only conclusive answer I got from the ordeal and the diagnosis I most wanted was that I am HIV-negative.
It shouldn’t have come as a shock. I have been tested my entire adult life at least once a year, and usually every six months, but each time, I feel an imminent sense of doom. Terror, really. Because the terrible truth is, if I ever were to test positive for HIV antibodies, I would feel ashamed.
Even for me, a person who tends not to hold back, this is something I have a tough time admitting. Because acknowledging that I associate shame with HIV — something inextricably connected to my sexuality — means that on some level I must associate a certain amount of shame with being gay.
It’s one of those things that doesn’t add up; I don’t think of other people — gay, straight, whatever — who are HIV-positive as failures or less than anything. I even consider some heroes — Jack Mackenroth and Greg Louganis, to name two — for their courageous advocacy. They simply acquired a chronic disease from sex, something every living creature does. I know this.
And yet, if I had to choose between HIV — something that can be managed — and multiple sclerosis — which I could in fact have and which would likely result in the inability to walk within 10 to 15 years — if I am being honest, I would choose MS.
Over the past few weeks, my left leg has given out on me a couple of times. I have double vision. Something is wrong with me — but something more than these symptoms.
I am HIV-phobic. And because I relate the disease so closely to my sexuality, I have to ask myself, Does this make me homophobic too?
David Michael Conner is a Washington, D.C.-based writer and artist. His website is www.davidmichaelconner.com or follow @ArtistLike on Twitter.