an unfortuante Diagnosis
An HIV diagnosis is never welcome news, especially when you're just beginning to explore your sexuality. It can feel as if your social life as come to a grinding halt before it's even really begun.
At UB2, our promotional tagline is "Proving there's #LifeAfterHIV." But before I could even think of starting an organization like ours, I had to first convince myself that there truly was life after HIV - a rich, full, meaningful life. A life with a purpose. This was crucial if I wanted to champion a crusade among other positive men and make them believe that their diagnosis wasn't the arrival of Armageddon, the end of their lives as they once knew them.
But as it turned out, making a believer out of myself wasn't quite so easy.
I was diagnosed with HIV early in the epidemic, and I suppose you could say that I was one of the lucky ones. From a strictly medical perspective, the progression of my HIV disease was rather unremarkable, a slight annoyance that after a while, required that I take a pill every day to maintain my health. Never a major medical crisis. Never a hospitalization. Never anything really to worry about. It appeared that as long as I remained compliant with my regimen - which for a highly organized person like me was essentially a breeze - I was going to beat HIV, crossing the finish line at a ripe old age, with my arms raised high in victory!
However, from a social perspective, HIV was an unmitigated disaster. Back then I was young, intelligent, with a great sense of humor. I was kind, compassionate, and gainfully employed. I was fit, trim and fairly "easy on the eyes" - a real catch, you'd think. Husband material. But my dance card was empty, and my prospects were bleak. You see, I had made the decision within a month of diagnosis to disclose my status to all potential sexual partners. I understood that this wasn't everyone's tack - especially during a time when fear, misinformation and stigma were rampant, even in the gay community. But it was the only strategy that I considered that would allow me to look myself in the mirror without feeling even more shame. But my candor was rewarded with a string of men who bolted for the door the moment they heard the word "HIV-positive." Over and over again, like the movie "Groundhog Day," men would scurry for cover, abruptly ending dates and relationships before they'd even really had a chance to get airborne. Repeated experiences like that leave scars, indelible ones that can be very slow to heal. If left untreated, open, weeping emotional wounds like that can fester . . . and eventually kill you. And little did I know that HIV was, in fact, killing me - just not in the way that I ever imagined that it would. HIV may not have been decimating my immune system - but it most certainly was decimating my spirit, my will to live.
AN UNEXPECTED CRISIS
Meet my medical team - my "early responders" - Drs. Kehlmann, Graham, and Harris
I am blessed to have some of the best doctors in Boston managing my medical care. But I think each of them was shocked to learn in 2008 - when I was at my lowest and obsessed with thoughts of suicide - that they actually had a patient on their hands that was very close to death. But you can't fault them, really. A careful review of my medical file at the time would have led them to conclude (rightly) that theirs was an HIV-positive patient who was stable and in excellent physical health. (I remember that my infectious disease specialist used to joke that I had the best cholesterol in Boston!) But what was missing from that file were tests that could measure my mental wellbeing - or whether having lived with HIV for almost two decades had negatively skewed my self-perception or adversely impacted my quality of life. Little did they know that HIV had caused me to become virtually housebound, where I gave myself permission only to go to work and run routine errands. Little did they know that I was virtually friendless, and that I wept quiet tears each night as I lay my head on my pillow, praying that I'd die peacefully in my sleep, or for some other such sweet release from my abject misery. Little did they know that I believed that as long as "HIV" was attached to my identity, none of the hopes and dreams that I'd held for myself were attainable. And if that were true, then what was the point of it all? Being "undetectable" and having an enviable lipid panel was of little consolation if the virus living inside me had rendered me invisible, unloveable, untouchable.
In a gay universe where everyone was touting that they were "clean" and "drug- and disease-free," where everyone was posting "HIV-negative, UB2" as a requirement for any sort of online interaction - even a simple conversation - it was hard not to feel that right out the sexual gate, I'd stumbled, having forever sabotaged whatever chances I might have had to find love and acceptance in a community that was apparently becoming more and more stratified. "Those who are clean, step to the left. Those who are . . . well, not clean? Just keep stepping." I might have had many fine qualities and a decent pedigree, but the fact that I lacked the most important of credentials - an HIV-negative sero-status - meant that there was no room at the gay, rainbow-colored "Inn of Inclusion" for someone like me.
Keep stepping, indeed . . . straight off a cliff, apparently.
Stigma + Isolation + Depression = Death
If this was #LifeAfterHIV, then this certainly didn't seem like a life worth living.
One day after a vice president at my company found me sobbing uncontrollably in the men's room for no apparent reason - what Oprah Winfrey would call "the ugly cry" - he and I both knew it was time for me to find help if I wanted to find my way "back to normal." I was in tremendous, unbearable, palpable pain - and he could see that in every tear that flowed and in every gasp I took in my attempt to stop hyperventilating. When he went to hug me, I collapsed in his arms. HIV for me had turned into "death by a thousand, tiny emotional paper cuts" - some of them self-inflicted - and that afternoon, I was bleeding profusely all over the Brooks Brothers blazer of my esteemed colleague, my life clearly in peril. After that gut-wrenching scene that left even him shaken, he put me in touch with a terrific psychiatrist who eventually helped lift me out of the quagmire of depression and recalibrate my warped sense of self - my "stinking thinking." It was during that long, five-year process that I began to look at managing my HIV more holistically. It became abundantly clear to me - and even more so to my medical team - that to achieve the best outcomes with HIV patients like me, one cannot ignore their psychosocial health. Without a doubt, viral suppression, T-cell counts, and med-adherence are all crucial to surviving HIV. But patients don't just want to survive HIV, they want to thrive with HIV. And one of the best ways to do that is to make sure that these patients have a strong social support system in place - a community, however they define it, that will be there to uplift and empower them, especially during those times when things appear hopeless. For when a patient has truly abandoned all hope, there usually is no pulling him back from the brink.
If that vice president had not found me cowered in the men's room, writhing in pain, that day would likely have been my last day on earth. I, "Mr. Best Cholesterol in Boston," "Mr. Long-term Survivor" - with my high T-cells and undetectable viral load - would have become an HIV/AIDS casualty at age 42.