I never got to meet my uncle Stuart.
He was the brother of my birth mother, Callie. By the time I finally began looking for her in 2001, Stuart had been dead for 15 years.
If we had met, though, I know we would’ve gotten on like a house on fire. (I’m not entirely sure what that expression means, but I’m quite the flamer, so it seems apt.) We have so much in common.
For starters, we both love New Orleans. We even have some of the same friends. They miss him to this day.
We also have a thing for theatre. In fact, I studied one of his performances when I was in grad school. It was among my favorites from that period–and of course, this was long before I knew his name, much less that we were related, so the admiration is legit.
Stuart and I shared something else, too: at one point in our lives, doctors looked us both in the eye and told us that we were HIV-positive.
As an actor, Stuart understood the importance of timing. Pause too long before the punch line, and you’ll lose the audience. Rush it, go a beat too early, and you’ll kill the joke.
With our disease, timing has also played a role. HIV found Stuart too soon, in the early 1980s. He had no chance to prepare. Nor did scientists or doctors. Six long years passed between the first mention of AIDS in the New York Times and the development of drugs to fight HIV. By then, Stuart was gone.
If I were born a few years earlier, I might’ve been in the same boat, but like I said, timing is everything: HIV and AIDS made headlines just before I hit my sexual stride. As I entered puberty, kids my age were being urged to be careful, be safe, and for better or worse, I mostly did as I was told. Throughout my 20s and 30s, I was regularly tested, and every time the results came back, I breathed a sigh of relief.
By the time I hit my 40s, I thought I was in the clear. I wasn’t naive, but I knew that my most precocious days were behind me.
Which was why it felt like I’d been sucker-punched on that bright winter’s day when the counselor at the testing center quietly shut the door, took a seat behind his second-hand desk, and told me that HIV was coursing through my veins. The room spun, my mouth went dry, I eased myself out of a chair and onto the carpet.
Apparently, that wasn’t the typical reaction. The poor counselor peered over his desk, then began flitting around the office like a bird in a cage, not sure what to do. I laughed, because I would’ve cried if I didn’t. Finally, he ran for help and returned with another jittery man and a glass of water, bless them both. I have always depended on the strangeness of the kind-hearted.
My doctor was more even-keeled. I brought him my charts, and he scribbled out a prescription: one pill a day at bedtime. He warned me that it might cause some hallucinations, but I’d gone to a liberal arts college, and I’d spent almost all of my adult life in New Orleans, so I had a hunch I could handle it. (P.S. I totally could.)
I wonder what Stuart did when he got The Talk? Before meds, before science began chiseling away at stigma, before we turned a corner and gay became okay? Talking to his friends, it doesn’t sound as if he curled up and waited to die. He was too smart, too optimistic, too brave for that. Smarter and braver than me, anyway.
The day after my diagnosis, I cut my finger in the kitchen and thought, “What do I do now? How do I keep this toxic sludge from poisoning everyone in the house?”
The next few weeks, things got worse. I’ve never been depressed in my life, but I came awfully close then. So, I did what I always do when I’m worried about something: I dove into distractions. I stayed home from work for a few days (I never use my sick time, so why not?), and I binge-watched the reboot of Battlestar Galactica, all 70something episodes. I also read a lot of the Fug Girls because every now and then, I needed a laugh that the alt-righty cylons weren’t giving me.
After about a month, I went back to my doctor and discovered that my viral load–which was very low to begin with–had fallen further to undetectable levels, and my T-cells were on the rebound. I read up on my new illness, poring over study after study suggesting that undetectable = untransmittable. Back then, that was a bold, new idea, but today, it’s accepted science. It’s surprising how many people–people who should theoretically be well-informed–don’t know this.
Realizing that I wasn’t cast in the role of Typhoid Mary or the mythical Patient Zero made me feel about 1,000% times better. It didn’t mean much for me personally–not for my veins, for my heart, or for the reservoirs of HIV amassing in my body, waiting to flood my bloodstream when my meds killed off what was there–but that wasn’t such a big deal. Like a lot of folks, I’ve always worried more about others than myself. Knowing that I wouldn’t, couldn’t infect anyone around me–friends or friends with benefits–gave me some breathing room. I felt less like a leper, more like my old self.
But not entirely. Stigma takes a long time to dissipate. It was true when I came out as gay, and it’s been true with HIV, too.
A few years down the line, and I’m still not bringing up my viral load and T-cell counts in random conversations with strangers. I haven’t mentioned my HIV to anyone in my family–biological or adoptive–though since my birth mom reads this blog, I suppose the cat’s out of the bag. (Hi, Callie!)
That said, I don’t hide my status, either. When asked, or when the situation calls for it, I’m frank and honest. And I like to think that I’ve been good about educating folks with uninformed opinions whenever possible.
Which is why I’m posting this now. Today, I turn 50. And if I’m lucky enough to live another 50 years, I want to live them as I’ve lived most of my first 50: openly, with no regrets.
Now for the obligatory lecture.
If you haven’t been tested in a while, now is the time. I know some of you are probably scared to get the results, but in this situation, like many others, it’s better to know than to remain ignorant.
If you’re negative, get on PrEP. Ignore the sexphobic assholes at the AIDS Healthcare Foundation: it works. If you have insurance, it’s probably covered. If you don’t, there are many clinics that offer PrEP at a reduced rate or free.
If you’re positive, that’s perfectly fine, too. Speak to your doctor or make an appointment with a clinic and get on medication immediately. Take it regularly, and you’ll likely hit “undetectable” in no time. Keep it up, and chances are good that you’ll live a long, perfectly normal life, with highs and lows and plenty of dull bits in-between.
Be honest with yourself and your partners, too. How you disclose your status depends on you, but HIV stigma will never die as long as we remain shy about discussing it.
And most of all: know that you’re not alone. In fact, if you start asking around, you’ll probably find that more than a few of your friends are positive. Far more will be taking PrEP, and in my experience, those are the sort of intelligent, informed folks you want to know. Counseling and support groups are available, too.
In time, the virus will become just another part of your identity, one of diminishing importance: brown hair, hazel eyes, casual vegan, husband, boyfriend, animal-lover, and far, far, far down the list, HIV-positive.