Being HIV+ is probably the most interesting and consequential thing about me. Here are some reflections on my 30 year relationship with the virus that causes AIDS.
Going to Montreal back in 1999 was bonkers and and if I listened to my body, I woulda gone to the doctor instead. But I was excited for boys weekend in French Canada, so I pushed through it and hailed a cab to the airport.
That was a mistake.
The persistent sluggishness I tried to ignore flared badly on the plane and by the time we landed, that short walk over the skybridge made my legs burn. I must have looked normal because a nice guy shared his number at baggage claim but I was too listless to flirt back, a rarity for me at the time.
I don’t recall getting downtown but with hindsight, it seems like the B&B host sensed I wasn’t quite right.
“Your room isn’t ready. Let me grab you a snack and if you want, you can take a little nap,” he said gesturing to the hammock out back.
What a nice man I thought and he really was a nice man.
If “OMG you’re dying if AIDS” crossed my mind a few times, it was out of habit more than anything else.
But it wasn’t that.
The illness I battled for 7 years (at that point) was well in check and I had the lab work to prove it.
Washington DC, March 1992
My 19-year-old self was at a club called Tracks when a tall, very handsome stranger sauntered up to take his shot.
“Want a beer?” the very handsome man asked.
“Sure,” I replied, flirting back even harder. “Got any beer at your place?”
“I don’t but-”
“Well, let’s go there anyway,” I said, cutting to the chase and it worked.
So we fetched our coats, hopped in his VW Golf and dashed off to his place.
Once inside, he filled the CD carousel with Pink Floyd and filled the bong with pot which was perfect because Pink Floyd and pot have always been two of my favorite things.
For better and for worse, there’s comfort knowing that Pink Floyd was the soundtrack for what came next.
We practiced safe sex the first five or six times but for rest of the weekend we didn’t and that’s how I became HIV positive, either that night or maybe it was the next morning.
Contemplating the sheer endurance and especially the horny acrobatics of youth is humbling. I’m getting a Charley horse just thinking about it. Nowadays, with 50 on the horizon, it’s a win if I last 40 minutes without triggering an asthma attack.
My 19-year-old self would not be impressed.
Anyway, at the end of a long and exceedingly fateful weekend filled with sex, drugs, and Pink Floyd, the handsome guy dropped me off at BWI airport and I was off to Germany.
My crafty Mom later scrapbooked that plane ticket, dated March 17 1992, to preserve a keepsake from my semester abroad. That memento also helped me timestamp when and were I caught the virus.
At the time, I was a college sophomore and Handsome Guy was 30 and yes, he should have done me better than that. But it’s no one else’s fault that I’m HIV positive.
My own bad judgment and risky behavior landed me here. And as tempting as it was to point fingers, accepting responsibility for the role I played in my own misfortunes has always served me well.
In those days, the stigma surrounding AIDS was so psychologically corrosive that many of us remained closeted about our HIV status, an especially unhealthy way to cope. And so we usually buried our heads.
So it’s easy to forgive us both for not having a grownup discussion about HIV first.
I avoided testing altogether. And when peer pressure grew impossible to resist, I finally got tested, never followed up, then lied to my friends about the results.
On one such half-hearted foray to the clinic, the nurse told me that 80% of the HIV tests at her clinic came back HIV+ for people who never returned for the results. That revelation was a gut punch and not just because she was taking about me.
Nurses are smart. She probably knew I wouldn’t be back.
I pretty much buried my head altogether until a story called “HIV in the White House” appeared in The Blade, Washington’s local gay newspaper.
To my astonishment, that article actually profiled the Handsome Guy who gave me HIV. It was a surreal moment that left me dazed but not especially surprised, especially given our risky behavior together.
A heads up before publication would have been nice but if anything, I was mad I couldn’t bury my head anymore.
And even though I wasn’t ready to tell the world yet, that’s the moment HIV-related denial stopped working for good.
I was 22.
If the advent of anti-retroviral therapy (later known as the AIDS cocktail) felt like a godsend, that’s because it was a godsend. Especially for the hoards of (mostly) gay men at death’s door who rose from their sick beds to live long, fulfilling lives.
I’d call it miraculous, but that undermines the years of advocacy which propelled these meds to market. We’re dealing with a heavily stigmatized population, only queers and junkies got AIDS back then, and the government’s response lacked urgency and compassion.
So it wasn’t a miracle that delivered those life-saving drugs, it was the rage and defiance of early AIDS activists on whose broad and very consequential shoulders I stand.
My good health and longevity is their legacy, something I think about a lot, especially when contemplating what my own legacy might look like one day.
I was 26 and still healthy when my doctor put me on HIV meds to keep me that way.
Despite their life-saving properties, those early pills also had a downside, in my case side effects which mimicked the worse hangover of your life: nausea, vomiting, headache, dizziness. There were sudden hot flashes and night sweats that gave way to intense chills that left me convulsing with shivers.
And then there was the diarrhea, humbling and unpredictable, and always in charge of my life at that point.
Few things are more humiliating than waking up soiled, panicked, and dehydrated. Each bout was a cruel reminder that I’m wasting away to skin and bones, my gaunt reflection staring back at me, a witness in the mirror to my own disintegration.
Then to top it off, there’s that whole pesky bedlinen situation to manage before going back to bed.
The whole scene was ghastly.
But it’s a lot better than dying of AIDS.
Speaking of HIV side effects, my life as a cannabis and gay rights activist began in earnest on April 16, 1998 at a medical cannabis dispensary in San Francisco. It’s a memorable date thanks to a reporter, on hand to chronicle the first medical cannabis raid in American history.
It was traumatizing watching hundreds of medically-frail AIDS patients being manhandled into the streets. Those who resisted, and many did, were cuffed and carted away.
There was no resistance from me that day. I was a timid, clueless kid, far from home and semi-closeted about my HIV status. So I complied because I was scared of jail and (especially) of having my weed confiscated.
It sucks to reflect on the times you didn’t stick up for yourself but I wasn’t a total coward.
In the melee, I somehow had the presence of mind to find the reporter.
John Lassiter, 25, said he rushed to the (dispensary) fearing that “it might be the last chance to say goodbye to everybody. This is a place for really ill people, people with terminal diseases, to escape their loneliness. They come here for a few hours to visit people.”
Lassiter, who said he is HIV-positive, started coming to the club in December, shortly after moving here from Washington. He said that daily use of marijuana keeps his appetite healthy and helps him keep his weight stable.
It was empowering that a reporter thought I had something interesting say. That was perhaps my first lesson that sometimes changing hearts matters just as much as changing the laws.
California voters made history in November of 1996 by passing Proposition 215, America’s first successful referendum to legalize medical cannabis. That winning tally, over a 1,000,000 votes, was assured by big margins in Los Angeles and San Francisco, two cities still scarred by America’s AIDS crisis.
Wasting away, covered in lesions, neglected by the government, and often abandoned by our families is a horrible way to die.
Cannabis made dying of AIDS less awful.
As I commemorate my own 30 year tango with HIV, I wanna remind the world that AIDS set the table for marijuana reform in America. The most consequential activism to legalize pot was done by people with AIDS and their caretakers whose advocacy changed enough hearts (and laws) that within a generation, America fully embraced marijuana reform.
We fucking did that and don’t you ever forget it.
Today’s cannabis industry robber barons bigwigs should start each day with a prayer of gratitude for those dead, unsung queers who laid the groundwork for the multibillion dollar cannabis industry that’s enriching lots of people who did none of the work to get us here.
Now’s probably a good time to mention that I smoke pot. It started in college where that very first toke instantly calmed my OCD/ADHD-ravaged mind. I still wake up each day keen to smoke as much pot as I can get away with.
In fact, being a huge stoner (literally not figuratively) saved my life.
In the old days pot could be really hard to find and when you’re a big-time stoner like I am, that’s problematic. So after watching friends get locked up for weed (and a few close calls of my own) I packed up and and chased the promise of legal cannabis all the way to San Francisco, California.
San Francisco was an easy place for an HIV test for anyone so inclined and finally I was inclined. And this time, I followed up because I needed a letter of HIV diagnosis to access the cannabis dispensary.
And the only way to get a letter of diagnosis was to finally face the music and confirm what I already knew.
Today a cheek swab reveals your HIV status in just minutes, a far cry from the the 90s when these things took forever. It was probably only a week but that’s basically forever when you’re waiting for weed.
“San Francisco is the best place in the world to be HIV positive,” the nurse said as she broke the news. I understood and appreciated her gentle, somber tone but I wasn’t feeling somber at all.
I was relieved.
And most of all, I was giddy to buy legal weed for the very first time in my life. So I stuffed that confirmation letter in my pocket and dashed down to the dispensary as quickly as my feet could carry me.
That final HIV test took place at a Planned Parenthood clinic so if you ever see me in the halls of power fighting for reproductive choice, please know that my personal relationship with Planned Parenthood has nothing to do with abortion.
And when you stand with Planned Parenthood, you stand with a scared, terminally ill, uninsured kid who’s miles from home but finally ready to fight for his life.
Back in Montreal
If the details of that Montreal trip remain fuzzy, it’s because I basically slept the whole time.
There were no Champagne- and poutine-fueled brunches and definitely no strip club shenanigans.
“You gotta rally! Strippers show everything here,” my travel mate cajoled.
But things were on fumes by that point. There would be no rally. There was no energy for all that. I was so depleted on the way home to Philly that I got off the plane and headed straight to the doctor.
I didn’t even make a marijuana pitstop first, that’s how bad it was.
“Let’s do the test one more time,” Dr. A said, sounding slightly concerned but with an African lilt that made it seem not so bad.
But is was bad.
Another test confirmed a shockingly low red blood cell count, a hallmark of severe anemia caused by AZT, one of the meds I took for HIV. In a cruel twist, the same pills which saved me from AIDS ravaged and destroyed my bone marrow’s ability to produce red blood cells and hemoglobin.
Red blood cells basically oxygenate every cell and every organ in your body.
The Doc said he rarely saw a result so abnormal then summoned an ambulance (!) to send me straight to the hospital, carryon bag and all.
I (finally) realized shit was deep when they had me in bed without proof of insurance. The blizzard of paperwork came later but first they were like “Stat! Stat!” getting that IV in my arm as quickly as possible, just like on TV.
I desperately needed blood transfusions, six bags in all, spread over 3 days spent in the hospital.
I’ve spent the past hour contemplating the strangers whose healthy blood mingled with mine to slowly trickle me back. We usually can’t thank the people whose blood saves our lives and so the best I can do is say please donate if you can.
Unless of course you’re an (HIV negative) gay man, in which case your blood’s not welcome, per CDC. That maybe made sense 30 years ago before we had a handle on HIV/AIDS, but nowadays, those retrograde policies give succor to a stigma that should be long dead.
“The Red Cross recognizes the hurt this policy has caused to many in the LGBTQ+ community and believes blood donation eligibility should not be determined by methods that are based upon sexual orientation. We are committed to working with partners toward achieving this goal.”
So yeah, stigma.
And yeah, we still have work to do.
I was probably doom-scrolling when Facebook advertised a research study to cure HIV taking place at Jefferson Hospital close to my home in the Jersey burbs.
“Are you a longterm HIV survivor?”
“Are you healthy with an undetectable viral load?”
“Are you on medication and non-contagious?”
Yes! And yes it still blows my mind!
“Do you want to help cure AIDS?”
DAMN RIGHT I DO!!!!!!!
Whether it’s the third spring of COVID or this remarkable HIV milestone or my 50th birthday in May, I’ve been extra eager to fill my life with meaning and to find something special to be part of. So I called the number and met their criteria and now Big Pharma pays me (peanuts) to study my blood and my immune system.
There’s also a $6 cafeteria voucher after each visit, an offer I declined until learning the research trial was sponsored by Merck, a pharmaceutical company that raked in $56 billion last year. Companies like Merck make billions peddling overpriced drugs developed with taxpayer dollars. It the trial goes well, shareholders get paid and people get cured. If it goes south, taxpayers assume the risk so Big Pharma won’t have to.
Hospital food is nobody’s first choice but as a matter of principle, I’m happy let Big Pharma buy me lunch.
And I’m happy to collaborate with anyone on AIDS research, even multibillion dollar drug companies who are surely getting more out of this than I am.
But before I went downstairs to spend Merck’s money, I was grateful the intake nurse laid out my role in the study.
“Even when your viral load is undetectable, HIV still lurks in your system” the Nurse explained. “So we’re gonna take 6 liters of your blood, remove some white blood cells and then return your blood into the other arm. Each visit takes about 3 hours. We wanna find out where the disease hides out and then kill it.”
“Six liters of blood,” I deja vu’d to myself. “Why does that sound so familiar?”
When the nurse asked if ever lived on 13th street, there was a long and very conspicuous pause while my mind reeled.
Can you guess why she knew my previous address?
Turns out, I already had a medical record at Jefferson Hospital because this was the same hospital, indeed the same building, where the ambulance took a very anemic Jay Lassiter half a lifetime ago.
I woulda figured it out eventually but connecting those dots took breath way.
There I was, a physically fit and medically-coveted specimen, sharing the secrets of my bionic immune system with healthcare professionals whose job is to cure, indeed to kill, the disease that nearly snatched my longevity. You’re hard pressed to find a starker contrast between that moment and the 25 years old kid who needed 6 liters of blood just to get back to normal half a lifetime ago.
My parents are deceased and it sucks they can’t share my excitement and gratitude about this research project. They came quickly when anemia took me down so the Jefferson coincidence would have charmed and truly delighted them, especially my mother who might have seen the hand of god all over the place.
When I shared the news about the research trial, the response was exceedingly kind and supportive.
A lot of people texted some version of “you’re so brave to do this,” a generous interpretation but one that kinda missed the point. It wasn’t courage that led me here, rather the basic human desire give life meaning and to contribute to something important while I’m still here.
Something important like a cure for AIDS.
Even if a cure is years away, I’m the lucky one who bet the house on longevity and, thanks mostly to the activism of others, I won. So if I do life with house money, now you know why.
That’s the silver lining of cheating death.
More than silver linings, being HIV+ gave my entire adult life a mission statement. This disease made me tough and resilient and lent my voice so much extra credence in the fight for things I care about like free weed, queer liberation, and clean needles to protect IV drug users from HIV.
Somewhere along the way, cannabis and gay rights became sympathetic causes. Not so for needle exchange which remains my toughest public policy battle yet.
If protecting a heavily stigmatized population from harm sounds too liberal for you, consider this: I don’t wanna pay for other people’s preventable cooties any more than you do.
In case you’re wondering, The Handsome Guy from the beginning of the story, he of consequential tryst, he’s still around and apparently doing well.
I’m not sure how much Pink Floyd he listens to nowadays because we’re not close like that. But I’m grateful he’s thriving because our fates remain inextricably linked. He’s alive for the same reason I am: a loving family, lots of luck, and an immune system that held out just long enough for a treatment to emerge.
During the course of this essay, I reached out to my Montreal travel buddy to ask did he remember how sick I was on that trip and indeed he did.
“You may have been the first person I really cared about who got HIV,” he texted back.
I told him it was “radical thing” to care for someone with HIV back then and we agreed it shouldn’t seem radical support your HIV+ friends.
But let’s be honest, sticking up for anyone on the margins will always be radical in this world.
Culturally, medically, and socially we’ve come a long way since those days. But the stigma that caused America to turn its back on a generation of dead queers persists.
And stigma means fewer people getting tested and treated. And so they became sicker and more contagious.
The Hollywood ending to this story comes when AIDS is cured.
In the meantime, consider this:
- Undetectable viral load = not contagious. I am NOT contagious.
- Two tiny tablets manage my HIV, a far cry from the old days when 30 huge pills was typical. A once-a-month dosing regimen might roll out this year or next.
- In addition to research for a cure at Jefferson Hospital (and elsewhere) promising HIV vaccine research is happening as we speak.
- Anyone at risk for HIV can take PrEP, a drug to prevent HIV infection. PrEP is free to access in New Jersey.
- It’s free and easy to get tested and treated for HIV in New Jersey.
- Pharmaceutical and dental coverage for HIV+ people is free thanks to the Ryan White CARE Act, which earmarks federal funds for HIV prevention, treatment, and care.
They say what doesn’t kill you makes you stronger and I reckon that’s true here.
And looking back, the AIDS crisis surely turbocharged a generation of battle-tested queer activists. Marriage equality, legal weed, gays in the military, adoptions laws, etc. quickly followed the AIDS pandemic, evidence of hard-won political mojo.
Despite the trauma, there was fun and joy along the way. And several memories still empower me all these years later, like the AIDS funeral that morphed into a weekend-long block party.
We’re here, we’re queer. And after paying our last respects, we’ll be dancing in the streets.
It was an act of defiance and persistence that gives me chills just thinking about it.
Is it crazy to miss the ride-or-die solidarity we so easily conjured when it was us against the world?
Because I miss the solidarity part.
I miss that part a lot.
Jay Lassiter in an award-winning journalist and podcaster based in Cherry Hill, NJ. His favorite dish at the Jefferson Hospital cafeteria is reuben with pickles. He’s never been back to Montreal.