I tested positive for HIV, the virus that causes Aids, on August 5th, 2009. This is my story.
I’m writing this here, if you’ll pardon the tongue planted firmly in cheek for a moment, under a bit of benevolent duress; a number of my friends among the New York blogerati who were a part of this story feel it should be told, and being ever obliging – because that didn’t get me in trouble in the first place – well, here it is. It’s also December 1st, World Aids Day, and just maybe, I can help demystify the subject and make it a little less scary.
Human immunodeficiency virus (HIV) is a lentivirus (a member of the retrovirus family) that causes acquired immunodeficiency syndrome (AIDS), a condition in humans in which the immune system begins to fail, leading to life-threatening opportunistic infections. Infection with HIV occurs by the transfer of blood, semen, vaginal fluid, pre-ejaculate, or breast milk.
In my case, just to get that out of the way, I acquired HIV through sex with men. Not to put too fine a point on it, a lot of sex, with a lot of men. Promiscuity is one of the privileges of beauty.
HIV isn’t something you have. It’s something you get – presumably through actions that our puritanical society frowns upon, like having sex – and something you can, if you’re careless, pass on. That’s a very potent combination. This virus frightens people. I used to be scared shitless of it.
It also carries with it a stigma. The virus felled an entire generation, cutting it down with no regard to wealth, status, class or race. That fear and stigma are the reason why very few of the one million HIV-positive Americans talk about having it, and why I’ve made a deliberate choice to break the silence.
The way HIV works is multifold. Briefly, it attacks and degrades the immune system, the nervous, muscular and digestive systems, along with pretty much every other vital part of the body. At some point, the body fails, and you die.
Having HIV requires learning a new and complex math. Again briefly, the numbers that count describe the amount of viral cells in your bloodstream, as well as the numbers of CD4 and CD8 white blood cells. The latter are your little friends that constitute your immune system, the former the bad guys that are trying to crash your party. They’re both usually measured by milliliter of blood; that’s roughly the amount that you get when you prick a finger. The human body contains about six liters of blood.
When my boyfriend, Keith, and our friend Aisha dragged me half delirious to the ER at Bellevue Hospital in Manhattan on the night of August 3rd, 2009, my numbers were four CD4 cells and over a million copies of the HIV virus per milliliter of blood. Now, four is barely enough for a decent game of poker; it’s not nearly enough to fight off a million party crashers with a bad attitude.
What followed is far clearer in the memories of my friends than mine; the virus was overwhelming my nervous system and attacking my brain, leading to a condition called HIV-Associated Dementia (HAD). In plain English, I was going insane. I can’t really describe what that felt like, other than maybe the most intense drug trip imaginable – Ecstasy or LSD on steroids, really. I’ve never seen such colors, or been so entranced by a single page of text. I’ve also never been convinced that my Brooklyn apartment was a ten minute beach walk from Fire Island.
One problem with being gay, unmarried and really sick is that, unless you plan for the event, nobody has the authority to take charge of your care or give your physician instructions. That smallish, overlooked part of second-class citizenship could easily have killed me, as I’m certain it has others. In this instance, however, Bellevue – one of the best teaching hospitals on the East Coast, by the way – threw out the rule book, treated Keith as my spouse, and started treatment.
Good thing they did, too, because that’s where the death part of the story would have occurred. It doesn’t normally happen that people get as sick as I did, survive, and make a full recovery.
Native American medicine holds that community is an essential part of healing. I believe this to be true, because it happened to me. What kept me alive and got me healthy again wasn’t just chemotherapy (more on that in a moment), it was more love than any person has any right to even dream of. For five months, until December of 2009 (I was finally released just before Christmas), I was never alone.
What that means is that friends, activists, bloggers, my lawyer friend, my, cough, personal nurse/dietician friend, my boyfriend’s circle of designers, models and family descended on whichever hospital it was that I was confined in, day after day after day. Every day. I was comforted, I was cherished. And not just me: my boyfriend, who was shellshocked - and who could blame him? – went through this crisis with the support of the same wonderful crowd.
Now, hospitals suck. They really, truly, do. The food is inedible, there’s that oddly inescapable disinfectant stench, you can’t get a drink for love or money, and there’s always someone trying to poke you with something sharp or cold. That’s scary. Honestly, I wouldn’t wish being in that kind of setting, alone, on my worst enemy.
But like I said, I was never alone. If you’re going to be sick, that’s really very much the way to go. Especially since my awesome friends – people like sidnora, silberleaf, Liza Sabater, lipris, Marjorie Gersten, Rosalie907, and so many more – didn’t just come to entertain and hang out. You know that old saw about chicken soup as Jewish penicillin? Try Jewish AZT.
As the weeks passed in my little New York City leftwing hospital clubhouse and the fattening of me continued – aside from the chicken soup that sidnora deserves multiple prizes for, there were brownies, M&Ms, gummi bears by the literal pound – I started to think about what would come next and what this all meant.
I have learned that the American healthcare system sucks major donkey balls. Even if you’re fortunate enough to have access to care – which dozens of millions do not – once you’re in that system, you’re alone. I firmly believe that in this country, people die not just from disease, but from loneliness and neglect, from not having been touched or held by another human being for too long. If nobody loves you, your soul dies, and there are no pills for that. And if you're alone in one of those damned hospitals, sorry, you're not going to get the same kind of care as someone who has loved ones to speak for them.
Then, all of us who get sick or infected with HIV now, in 2010, are the lucky ones. The meds they’ll give you are stunningly effective. The class of drugs known as HAART drugs – ‘Highly Active Antiretroviral Therapy’ – has proven to be, at the risk of cliché, a lifesaver. Lots of folks, including myself, have used these drugs to drive the viral levels below the point where they can even be measured. People no longer, even here in New York City, go to a dozen memorials and funerals a week, week after week after grinding week.
I suppose that’s a good thing.
What we are seeing today is a shift in the pandemic. New infections skew towards people of color, females, and heterosexuals. At the same time, however, in major U.S. metropolitan areas, the HIV infection rate for MSM – ‘men who have sex with men’ in the clinical jargon – is one in five. New infection rates for us are 44 times higherthan for straight boys. We're seeing great news on the treatment front, though, which is awesome. Of course, that great news is not going to ease the lot of patients without access to these drugs in this country and abroad or bring back our uncounted dead.
As to myself, I have spent quite some time thinking about this epidemic that I'm now a part of. What do I do with this? With the, what, twenty or thirty years I have left?
Obviously, I am going to want to give back, both to this community – can't wait for the next Netroots Nation – and to my new friends, all the amazing people I would never have met without this. I haven't figured everything out yet, but I see Aids and healthcare activism in my future, and probably another college degree. I'm going to refresh my French and take my boyfriend to Europe. Like my friend Phillip Anderson of the Albany Project says, 'I want a boat'.
I have a future. For all the people who weren't so lucky, this one's for you.
[Update]:
Dear Kossacks, my beloved orange tribe, from the fullness of my heart, and from my entire family of blood or choice, thank you. It is a privilege to make this journey with you.
Love, Michael