There are three challenges to writing about HIV, that is, the Human Immunodeficiency Virus, the underlying cause of AIDS, Acquired Immune Deficiency Syndrome.
One, you have to decide whether to use the raging language of the apocalypse (for the uninfected), all the better to scare the kids straight, no pun intended, on the danger of it, or (for the infected), the soothing tones of love, hope and survival.
Two, you have to decide whether to write about the medicine of it, the politics, the demographics, the support system, the brave folk battling the disease every day, your inevitably uplifting personal story (mine's here), so many options.
Lastly, if you write about it as often as I seem to be doing these days (three major pieces in the course of a week), you have to force something fresh out of your bleeding fingers even as your keyboard seems to be giving you, though how it does that remains unknown, an accusatory look. I suspect there's an app for that, Steve Jobs' late, lamented genius for perfection being what it was.
But KosAbility is a series about disabilities, more specifically, about how Kossacks live with them. Legally, I am disabled – not because of the virus, that's no longer sufficient, but because I had a real, red-blooded-American AIDS diagnosis at one point, which is. In actual, non-legal fact, I'm a man in his prime with the full panoply of physical and mental abilities the healthy male body provides. How that came to be, you can find out over the Orange terrorist-fist-bump Eye of Sauron.
Or whatever we're calling that.. thing... these days.
The simple fact is that, yes, I am infected with HIV, and probably have been for a decade or so. Am there, have that, literally own the t-shirt. Wore it in Providence, come to think of it. What always strikes me, however, is how much of a bigger deal this wardrobe choice, and the assumptions it creates, seems to be for everyone else than it is for me.
And yes, of course I'm going to start a post about a global pandemic by talking about clothes.
There are expectations, mind you. One of them is, to appropriate Joseph Chamberlain, of the weary titan, staggering under the too-vast orb of its fate – that one spends every waking moment consumed with the thought of this unvanquished disease slowly eating away, unseen, much as Dorian Gray was consumed by his portrait withering away in its hidden attic. Flowing presumably from this is the idea that, as one of the few gay men in the progressive blogosphere publicly out of the closet about my status – really, the sheer irony of it boggles the mind – I'm naturally qualified to be an information source, cautionary tale or poster boy.
It intrigues me that some people should think any of that. To be entirely candid, I don't spend a lot of time thinking about HIV. I don't have the funereal mindset this would require or the distance to see the subject dispassionately. If anything at all, I lose sleep over the kids, many or most of whom don't have my support system, my loving family, devoted partner, great circle of friends. As far as I'm concerned, however, as I live it, this virus is a routine, more an annoyance than a burden; large amounts of blood drawn every three or six months, a pill before dinner, done. HIV, for me, has receded into the background.
At first glance, not all that terrible, is it? And really, it's not. Which is maybe why....
Being positive, in my world, among my friends, is the new normal.
[HIV prevalence 2009, New York City by ZIP code, Source: aidsvu.org]
The picture above is a map of the five boroughs of the City of New York. See those purple areas? Going clockwise, they're the West Village, Chelsea and Hells Kitchen (the main gay areas), Harlem, The Bronx, and central Brooklyn. They correspond quite neatly to the main demographics HIV affects: gay men and African-Americans of all genders, and agonizingly, far too many young people of color to even contemplate.
Estimates vary, but I hear about one in four gay men here at home, the City of New York, carry the virus. Nationwide, the numbers at least in urban areas are similar, and we – men who have sex with men – are the only demographic that sees an increase, year over year, every year for now over a decade. Some statistical evidence suggests that new infections are occurring at a rate comparable to what it was before the advent of miracle drugs.
Among other reasons, because a lot of guys are fucking without condoms. It's called barebacking, and in my experience at least, is either already normative behavior or becoming such. Combined with the dramatically increased life expectancy of men like me and several other factors, it is a mathematical certainty that the absolute number of HIV-infected gay men will rise, even dramatically so, as will our share of the larger gay male population. We are living decades longer, and every year, every day, every nine minutes, more join the ranks.
And that's where we get to HIV Normal.
On the surface, for me at least, this new normal is tolerable. I know I'm not going to die, certainly not any time soon. I have the kind of killer body you get from going to a gym every day. Those baby blues are still sparkling, and I look a decade younger than I am. This year for Pride, I marched down Fifth Avenue, with ACT UP, in underwear and combat boots; quite spectacular, if I do say so myself. The side effects from the drugs - actually, the drug, singular – are few, if any. I know there is stigma out there; I just haven't experienced it. Only one in four HIV patients have the virus under control; I do. Even my blood pressure is perfect. As I said: I've been lucky.
Of course, t'was not always thus. That first year after the diagnosis was, not to sugarcoat anything, a living hell. I suspect it's the same for everyone who gets that new chapter turned, no matter what the heading is; if something can kill you, odds are, puppies and unicorns aren't going to be first to mind. For me, it fucked up my career, and slapped me in the face with the idea of my own mortality. The five stages of grief – been there, done that. There is a 'before', and now, there is 'after'.
The biggest problem, though, wasn't anything external, it was the film running through my head. All those awful pictures from the eighties, the dead friends, the funerals – great, my turn. Damaged goods, the one mistake I'd never be able to fix. In the crushing loneliness of that test result, you question every choice you've ever made. At that point of the journey, not a few people commit suicide.
And then, it gets better. Maybe because the very real distinction between 'automatic death sentence' and 'chronic disease' kicks in. Maybe because of some small kindness you give or receive. Maybe because a random hookup turns into such cinematically epic sex you walk funny for days and can't wipe that grin off your face. Maybe it's the realization that you're now a part of something much bigger than yourself, this grand tragedy, bitter and sweet, that is mankind's struggle with this newest plague, and that you have some fucking responsibility to those who came before.
Whatever it is, you realize that 'before' and 'after' don't need to be all that different.
So that's where I'm at – stage five, acceptance. Yes, there are changes. I take a much closer look at nutrition (that single pill, awkwardly, sucks calcium out of your body like a two-dollar hooker), get lots of exercise and sleep. My sex life is still – or rather, again – the stuff that mere mortals only get to dream of, and though I confine myself to men with my serostatus, that's still a big pool with many tasty, talented fish. My sense of humor is still quite intact, thank you very much, and I haven't gone off to find God. I'm both more kind and more skeptical than I was a decade ago, though still as insufferably full of myself as ever.
Of course, my glittering life in the Imperial City could be built on quicksand. People do still die. We have no idea what the long-term effects of those fabulous pills are, or if their efficacy has a shelf life. The political and societal environment could change beyond recognition.
But right now, at this moment in time, life is good.
--- The End --- .
This article first appeared in The Daily Kos/KosAbility. Republished with permission.