Left for dead: the great, bad and ugly about living with HIV, thirty-plus years and counting

Originally published in August 2017 in “Art and Understanding Magazine,” a.k.a., “A&U, America’s AIDS Magazine.”

I died three decades ago. In my early twenties. At the apex of the AIDS crisis in America in the 1980s. I’m long gone from this twenty-first-century world of smart phones, social media and black former presidents. I never met the Internet. I acquired what the media faithfully called “the deadly disease” in 1985—long before Magic Johnson’s 1991 HIV announcement, after which the world prepared to say goodbye to the basketball legend.

I, a black gay man, died of AIDS-related complications at a time when society feared and persecuted “the innocent victims,” AIDS babies, born that way, and hemophiliacs, like young Ryan White.

Breaking news of my impending death came in July, 1985, specifically, the day Rock Hudson admitted to the public that the rumors were true: one of the world’s most beloved movie stars was dying because of the frightening new disease rapidly spreading among and killing gay men.

Living to see the 1990s was science fiction.

That night, AIDS night in America, coverage of the deadly disease went full blown. The doctors on TV informed the public, in so many words: “We don’t know much about this virus, but night sweats are an early symptom, and life expectancy, if you’re lucky, is twelve to eighteen months.”

Finally an answer to a nagging question of mine: “Why am I waking up every morning, myself and my new futon bed soaking wet with sweat from the previous night?”

I was a graduate of UCLA all of one month, and on that night, I realized that I, like Rock Hudson, was infected. 1985. Age twenty-three. In the closet. Alone. Me and my deadly disease.

I knew I was going to die. That was science fact. Living in the Los Angeles area, the evidence was all around me. Gay men morphing into withered, zombie-like versions of themselves. Nothing on earth could combat the carnage. That was science fact.

Living to see the 1990s was science fiction. Ditto for living long enough to see the turn of the century.

Living long enough to see myself turn into a fifty-five-year-old black gay man eligible for senior citizen discounts in 2017? Pure science fiction.

Until it became science fact. And a miracle, thanks to science.

Seemingly not a week goes by where I don’t metaphorically pinch myself, and remind myself—with boundless gratitude—that I have the great fortune of still being alive. I’m actually living a dream come true! I’m still here on this planet earth, living, breathing, walking, existing, experiencing the unimaginable surprises that come from an extended life.

The joy of seeing my mother alive and kicking in her early eighties. The joy of my mother seeing me alive and kicking in my mid-fifties. The thirty-two years and counting of the wonderful mother-son relationship we’ve enjoyed since AIDS night in America.

“You’re going to be one of the lucky ones,” she used to assure me back when science had no answers. A mother’s love to make us both feel better, I always thought of it.

The joy of her being right.

However…key change…being alive, being a living, breathing example of this crazy modern day term—“living with HIV”—is not all joy and definitely not heaven on earth. There’s also pain, as in a downside, and most of it has to do with stigma, still feeling like a pariah, an AIDS monster, a misunderstood creature feared most by gay men, of all people.

In the United States, the general public no longer fears living around someone living with HIV/AIDS. Thankfully, the world has learned “you can’t get it from a hug, breathing the same air, sitting next to someone on the same flight, or even a blood transfusion.”

What the world hasn’t learned: it’s possible to make love or have sex with someone living with HIV/AIDS without you, yourself, becoming infected.

Don’t take my word for it. Behold all the evidence online where gay men tell us how they really feel about HIV/AIDS and those living with the no-longer-so-deadly disease.
An entire lexicon has been created to ward off men with HIV, words and phrases that didn’t exist in their current context in the pre-AIDS world. Clean. Disease-free. DDF. UB2. No bugs. Clean and disease-free (as of a certain date). The mutations are endless, but the intent is clear: if you admit to having the virus, or appear to have the virus, whatever that means, “stay away from me, because I am only going to have relations with other men who tell me they are clean and disease-free. Even more attractive: those who provide me with a test date!”

As if telling someone you’re clean—or believing someone else when they say “I they’re clean—is going to keep the AIDS monster away.

Makes no sense to this veteran of the AIDS war. It’s like someone saying about a minefield resulting from a real war: I’m only going to step on ground that looks clean and bomb-free.

Somebody neglected to educate the survivors and subsequent generations of the post-AIDS panic and we are all paying the price.

Twenty-three-year-old gay kids are still becoming infected and facing stigma.

HIV-infection rates in the black and brown communities are disproportionately high, but there’s zero media coverage because seemingly, the only black lives that matter are the ones being snuffed out on viral videos.

Long-term AIDS survivors feel alienated from a community that calls itself clean and disease free, which can only mean one thing: I am dirty and disease-ridden.

Didn’t see that one coming when I allowed myself even the briefest glimpse of surviving beyond the 1990s.

Another downside that blindsided me: I didn’t anticipate surviving, only to realize that many of the people in my life left me for dead.

After discovering my HIV-positive status in 1985, I made it medically official by getting tested in 1988. By 1990, my health was failing. My T-cell count, the all-important determiner of the day, was taking a steady dive. Science fact said I better start making arrangements, and so I did.

That included leaving my stressful job and informing my coworkers (to get out in front of the developing story). Then, of course, you don’t suddenly leave your job without telling your friends and acquaintances the reason, and why not? You’re about to wither away and die. You’re gonna need some help doing so.

Unless science fiction becomes science fact.

But a funny, unexpected thing happened on the way. Those (mostly heterosexual) friends and coworkers who promised to be there for me in my dire time of need—friends who offered money, if needed, a room in their house, if needed….Most of them simply faded away from my life, seemingly when I didn’t die soon enough.

Is he still around? One reportedly asked circa 2000.

If you actually cared about me, you’d already know.

But I’m convinced. For many people, I was a gay man who was going to die of AIDS, and that’s just the way it was, if you had the misfortune of being a fag in the 1970s and ’80s.
Today, America’s conscience is elevated. Gays are the subject of a celebrated miniseries celebrating that struggle. Out and proud celebrities permeate practically every aspect of culture (except men’s major-league sports).

But during the 1980s and ’90s AIDS panic, gays were still pariahs. To many, AIDS seemed like just desserts. Or at least fate. For a time, even gays had to wonder if the plague was a biblical response to gay liberation.

Being gay, I was already worth less. Having AIDS, I became completely worthless, save for some who wanted to star in their own version of “helping my friend who’s Dying Young.”

“I once knew a friend who had AIDS. What happened? I don’t know. I lost touch with him.”

(And he probably died because that’s what gays with AIDS did.)

Only sometimes they don’t. Because science fiction turns into science fact. A great thing. But not so great is the idea that most people still fear intimacy with you, and that others literally left you for dead.

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