Living with HIV/AIDS
Will HIV Ever Be Safe Enough for You?
Tuesday, March 11th, 2014
There is a classic episode of Oprah from 1987 that can still raise my blood pressure. That year, the tiny town of Williamson, West Virginia, became part of a national discussion about AIDS when Mike Sisco, who had returned to his home town to die of the disease, dared to step into a public pool.
The community freakout was immediate. Sisco was quickly labeled a psychopath (rumors emerged accusing him of spitting into food at the grocery store), and the town pool was closed the next day to begin a Silkwood-style pressurized cleaning.
Soon thereafter, Oprah Winfrey arrived with cameras for a town hall forum about the incident. Fear was the order of the day. “If there’s just one chance in a million that somebody could catch that virus from a swimming pool,” the town’s mayor told Winfrey’s worldwide audience, “I think I did the right thing.”
Sure. Why not react in the most extreme way possible, if there is a chance in a million?
Williamson citizens were not swayed by health officials who calmly explained the established routes of HIV transmission and the impossibility of infection from a pool. “The doctors can say you can’t get it this way,” a woman countered, “but what if they come back someday and say, ‘We were wrong?’”
Indeed. What if? If there’s a chance in a million…?
That broadcast might have remained a sad footnote in HIV/AIDS history, an instructive example of people ignoring scientific fact to protect a satisfying fear, if history didn’t enjoy repeating itself so much. Today, though, the willful ignorance isn’t coming from uneducated residents of a southern town you can barely find on a map.
It’s coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago.
Recently, research known as The PARTNER Study was presented at the prestigious Conference on Retroviruses and Opportunistic Infections (CROI). PARTNER proved something HIV advocates have long suspected: people with HIV with an undetectable viral load are not transmitting the virus to their partners. The study included nearly 800 couples, all involved in an HIV positive/negative relationship, gay and straight, with the positive partner maintaining an undetectable viral load. Over the course of two years, more than 30,000 sex acts were reported and documented (couples were chosen based on their tendency to have sex without condoms).
Not a single HIV transmission occurred during the study from someone with an undetectable viral load. If PARTNER had been researching a new medication, they would have stopped the trial and dispensed the drug immediately.
The PARTNER results bolster the prevention strategy known as “Treatment as Prevention” (TasP), meaning, a positive person on successful treatment prevents new infections. To date, there is not a single confirmed report of someone with an undetectable viral load infecting someone else, in studies or in real life.
Just don’t tell that to a sizable contingent of skeptical gay men, many of whom took to their keyboards to dismiss the PARTNER findings. Phrases like “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” appeared on Facebook postings and in web site comment sections. The people of Williamson must be slowly nodding their heads.
Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP.
Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on in the minds of gay men. What is it?
Our collective memories of AIDS horror are hard to shake, and that’s a good place to start. On a gut level, any study suggesting that HIV could be neutralized is met with a weary doubt. Good news is no match for the enduring grief that has shadowed us for 30 years.
The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community.
It’s tough to do that when fear creeps in and “what if?” fantasy scenarios take hold. What if my partner missed a dose yesterday and, even though HIV meds stay in the bloodstream for extended periods, his viral load has inexplicably shot up? What if he isn’t being truthful about his viral load? What if he doesn’t know?
The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative but are not. But we’d rather stay focused on the positive person being at fault, because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim.
I have some “what if?” questions of my own. What if these unrealistic fears were meant to stigmatize and isolate HIV positive people? What if I am undetectable and feel no responsibility to discuss my status with a sex partner because I don’t care to engage in a science lesson? What if everyone availed themselves to prevention options that worked best for them? What if my HIV status were none of your damn business?
These risks could be alleviated, of course, if everyone simply protected their own bodies when having sex with people they don’t know or trust. But that would place an equal burden on negative men, and what a bother that is. Better to leave that discomfort to those with HIV, vectors of disease that we are. Just consider us criminals, lying to you about our viral loads and spitting in the food in Williamson, just waiting to infect you when we get the chance.
As long as we’re giving undue attention to fantasy scenarios we’re not focused on the real threats. The rates of STD’s are up. Young gay black men in the United States don’t have proper access to healthcare and have infection rates worse than any developed country. Our community is plagued by alcoholism, addiction, and mental illness. Do we want to debate established science or should we devote that energy to other challenges to gay men’s health?
If you still have the arrogance to believe you could win the HIV Powerball Lottery and be the one person who gets infected in ways science has disproven, you’re perfectly entitled to that point of view.
Here are some helpful instructions, however. Carefully step away from your computer and don’t touch the cords because 50 people die of product related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Once there, refuse food or water because, well, you never know. Now slip into your bed of willful ignorance and try to make yourself comfortable.
The good people of Williamson are keeping a spot warm just for you.
Mark
p.s. In the time it took you to read this article, the number of people who were infected by someone with HIV who had no viral load was zero.
Tags: barebacking, criminalization, gay, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »
Our Problem with Being ‘CURED’ of HIV
Friday, February 28th, 2014
In the late 1980′s, I let this odd, fussy man into my office at LA Shanti, my first AIDS agency job. He seemed earnest and harmless and he just wanted a few minutes of my time. “I have the cure for AIDS,” he politely announced. Sadly, he wasn’t the first person to say that to me, but we practiced more suspension of disbelief during that wretched decade so making such a statement wasn’t immediate cause for removal from my office.
He set a wooden box on my desk, the size of a breadbox and with unfinished wood, like something you had just started building in shop class. He opened it to reveal a jumble of wires and what appeared to be a very large battery of some kind. It looked like a bomb.
“Electromagnetics,” he said, with his index finger up, like a teacher. I was so entranced by the device that I didn’t notice him attaching one of the wires to my finger with a clip. I felt it softly bite my skin and looked down, horrified.
His scholarly tone didn’t change at all. “When I attach this to your other hand,” he said, reaching for it, “the magnetic field will purge your body and your blood.” I saw him taking my other hand. “This is science,” he added proudly. He was smiling.
I sprang from his grasp and shook the clip from my finger. I suddenly remembered I had a staff meeting. An extremely important staff meeting. I thanked him and excused myself to get to my very important, life saving staff meeting.
It’s tricky in the HIV community, using the “C” word. Long term survivors like me have had our hopes raised so many times, only for the rug to be pulled out from under us, again and again. The list of miracles-in-waiting goes as far back as the dawn of the AIDS crisis itself. Herbal remedies. Rare fish guts. Tribal potions from exotic locales.
And so picking up a new book with that word right in the title, well, you can imagine the skepticism.
CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science is exactly as advertised and a little more. Nathalia Holt‘s (below) engaging new book is quite a pleasant surprise, taking a user-friendly approach to its complicated subject. Not only does it provide the timeline of the advancements to date in HIV cure research, it gives us juicy, humanizing details about all of the players involved.
Much of Holt’s book has the characterizations and forward motion of a good novel. We meet “Christian” (not his real name), the first Berlin patient who has achieved a functional cure to date. We find out exactly what happened in that Berlin clinic when he received his HIV tests results, what he was feeling, how it affected his relationships. We learn that it was Christian, not doctors or scientists, who elected to end treatment after several months (beginning very soon after his infection), leading to the discovery that his virus was under control and has not flared up since.
The same goes for Timothy Brown, who achieved even more notoriety as the later “Berlin Patient” because of the drama of his curative process (he had two bone marrow transplants and nearly died more than once) and because he has been willing to be public about it.
Timothy is the real heart of CURED. His endearing humility draws you to him as the book follows everything from his medical journey to his love life to his surprisingly modest existence today.
(In both Christian and Timothy, minute amounts of HIV virus have been located in their bodies since their treatment, but these reservoirs have not caused health problems. This is known as a “functional cure.”)
All the principle players evidently cooperated with Holt, an HIV researcher herself, and the level of access shows. We not only learn who each of the major researchers are, but what brought them here, what their families are like, and what personal sacrifices they faced along the way. Particularly juicy are the stories of egos and competition among the scientists — and how people who made no contribution at all to various studies scrambled to get their names attached because of the cutthroat world known as academic publications.
Science has never been my thing. I’m not confident writing about it, and intimidated by reading about it. But, except in its last chapters when Holt hurriedly catches us up on the latest research, CURED is easy to follow and has engaging insight into the very real people behind the headlines.
And hey, how cool is it that no one was electrocuted as part of this research?
Mark
Tags: aids, physical, research
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News | 5 Comments »
What Donna Summer Still Means to Gay Men
Tuesday, February 25th, 2014
The music my friends liked when I was a teenager intimidated me. It was the head-banging rock of the early seventies, and it felt alien and unappetizing. Most of all, it just felt… straight, in a way I knew I could never be. Alone in my room, I listened to my beloved Broadway musicals, and resigned myself to the fact that popular music would never really speak to me.
And then in 1977, when I was sixteen years old, I began sneaking into the only gay bar in Shreveport, Louisiana. Inside I found joy and liberty, fashioned with bell bottomed pants and handsome smiles and the dance floor – oh my God the dance floor – centering the nightclub was a glorious explosion of colored light and swinging hips and arms reaching up, up to the sky as if we could clutch it in our hands. The music was an entrancing bombardment of sound, and one song, one mesmerizing invitation to touch the heavens, was played again and again.
It was Donna Summer. And she was singing “I Feel Love.”
The track was really the triumph of producer Giorgio Moroder, who created the driving, synthesized beat that would define Donna Summer’s music for years to come. But I knew I had to own this amazing song, and soon I stood proudly at the record store cashier to buy my very first popular album, Donna Summer’s I Remember Yesterday.
I had found my music, my voice, and my lifelong muse.
The following year I had come out as a senior in high school, and Donna Summer was still in her “whisper period.” It was never my favorite sound from her – it felt like playing chopsticks on a grand piano – and I knew from her other album tracks that she could let it rip. As I was graduating she did just that, with the release of her iconic “Last Dance.” Her full-throttle pipes were on stunning display. Dance parties would never be the same.
By the time I left home for college in New Orleans, the music of Donna Summer had exploded into popular culture. I felt so proud of her, as if I had discovered her myself. My nights in the French Quarter were spent in the Parade disco on Bourbon Street, dancing to “Hot Stuff” and “Bad Girls.”
The feeling of joyous exuberance that surrounded that disco is hard to describe. It was a sea of shirtless men, staking claim to our sexuality and the promise of infinite possibilities ahead. The incessant thump! thump! thump! of the beat was our clarion call, and it shouted Here! Here! Your tribe is here! We were so beautiful, in ways we were much too young to know.
And then soon, of course, the lights began to dim.
By 1982, I was struggling in Los Angeles as an aspiring actor, and Donna Summer was having a musical identity crisis. Record executives wanted a new sound for her to accompany the changing times, and her longtime producer Giorgio Moroder had been replaced by a succession of others. The red-hot Quincy Jones produced her Donna Summer album that year and their studio clashes became legendary. The album floundered and produced no significant hits.
At the Los Angeles gay pride festival the next year, I was thrilled to hear Donna’s voice again, sounding gorgeous and almighty, singing “She Works Hard for the Money.” I took to the dance floor but was somehow unable to muster the joy I had known only a few years before. Life had intervened. And it had brutal plans for the men under the dance floor tent.
Donna Summer produced dance floor singles, if not hits, in the years that followed, but we weren’t paying attention. The night club crowds dissipated, as a silent killer plucked men away one by one. AIDS had begun its murderous march through the gay community.
The villain wasn’t simply the disease in those darkest of days. It was ignorance, and the judgment that rose up from social conservatives who saw Godly retribution in the horrific deaths of our friends. And so, when Donna Summer became a born-again Christian during this period and announced she would no longer perform her early, erotically charged hit “Love to Love You, Baby,” her gay audience viewed her with immediate suspicion.
An ugly rumor began. Someone claimed to have heard her make a homophobic remark during a concert appearance. Depending on who was repeating the story, she had either said AIDS was God’s judgment, or that God made Adam and Eve, not Adam and Steve. The unsubstantiated rumor swirled and grew, in an environment in which gay men were particularly sensitive to ignorance and hatred. By the time Donna Summer took it all seriously enough to set the record straight, it was too late. What was left of her popularity fell victim to the social maelstrom of AIDS.
I never believed the story, and defiantly continued buying her albums, though they appeared with less regularity. Donna Summer would have only one more true hit, “This Time I Know It’s for Real,” which I chose to perform for my maiden appearance in drag at an AIDS benefit. The fact that during this time Donna Summer was raising money for AIDS research gained little traction among emotionally bruised and unforgiving gay men.
Today, disco may be dead, but Donna Summer’s music laid the groundwork for everyone from Madonna to Lady GaGa, even if my body has found it harder to approximate the dance floor moves of my youth. But in my mind, as I blast “Dim All the Lights” in the privacy of my living room, I am young and powerful and life is making promises that are wonderful and possible.
Donna Summer is among the spirits now, joining the legions of ghosts haunting brightly colored discos from another era. She is still cooing to them, to these throngs of boisterous men, inviting them to the dance, where there is everything to celebrate and nothing to forgive.
The men are moving to the beat and laughing and holding one another. They are all beautiful, and they know it.
And they feel love.
Mark
(This originally appeared on this blog in May of 2012, shortly after her death. I continue to play Donna’s music, or at least hear it playing in my memories, every single day.)
Tags: aids, culture, gay, Recreation
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease | 7 Comments »
The Fog of a Thousand Years
Monday, February 17th, 2014
“Remember when Billy Perry gave you a black eye?” David asked me. He stood on a ladder with a screwdriver in his hand. I was holding up Mom’s new light fixture while David attached it to the ceiling. We took on the project during a visit I made back home a few weeks ago.
“Of course I remember, David.” My response had the weary, patronizing tone I reserve for my older brother.
I’ve been speaking to him that way since we were kids, I suppose. The strategy is to act like I’m completely bored with him so, if he tries to make fun of me, it will look like I don’t care. I always thought I needed the mechanism, since I came of age as a pimply-faced pansy who was an easy target. That, as opposed to David, who was only one year older and a blond, blue-eyed star athlete. No one ever believed we were brothers.
“So what do you remember, then?” he asked.
I rolled my eyes. “I was eight or nine,” I began. “Billy and I were goofing around in the back yard, and I pissed him off somehow and he punched me right in the eye.” My arms were getting tired from holding up the fixture and I shifted my feet.
“That’s all?” he asked, still focused on his work. “Stop moving.”
“Pretty much. I went inside and I was upset –”
“You were crying, man,” he corrected. He laughed under his breath.
“I was very upset. Mom was getting me ice and stuff. So after a while, Billy rang the bell and Mom made me come to the door so he could give some fake apology. Billy’s mom obviously made him do it. I’m sure he loved seeing how bad my black eye looked.”
“And that’s all you remember? Seriously?”
I wasn’t enjoying reminiscing about Billy Perry. “Yes, David. That’s all that happened.”
“No, it’s not,” he said, and he stopped his work to look down at me. “You walked in the house. You were crying. I asked who hit you and you said Billy. So I left and found him down the block and I kicked his ass.”
David watched my jaw drop. “Billy’s mother didn’t tell him to apologize, Mark,” he added. “I did.”
“Oh c’mon, no way,” I replied, a little weakly, feeling something like frustration. How could I not have known this? And besides, this was my black eye story. I’m the one who got punched.
“Hold the light up higher,” David said, and he tugged on the fixture. “Do you even know how many times you would have been beaten up if it wasn’t for me?”
Recasting David as my protector seemed ludicrous. He was frustrated all the time when we were growing up, unsure how to handle a brother who wasn’t the companion he might have expected. I loved Broadway musical albums. He loved the noisy drum set that dominated our shared bedroom.
And yet, the most antipathy he could muster was to ridicule me as I made my way through the confusion of gay adolescence. I resented his effortless masculinity and the fact I had to watch this annoyingly handsome straight dude grow up right beside me, reminding me on a daily basis of all I would never be.
My shoulders ached from holding up the fixture but now I barely noticed, too busy trying to get a handle on a lifelong resentment that suddenly wasn’t holding up under close scrutiny.
Brothers fight. But I only got one black eye in my whole life. And it wasn’t from David.
“What do you mean I would have gotten beaten up?” I asked him, finally. “I was so gay those guys were scared to get near me. I freaked them out too much.” I honestly believed that my late 1970′s fashion choices of jumpsuits, platforms and elaborate jewelry kept the straight boys of Bossier City, Louisiana too off balance to bash my face in.
“Mark, I had guys on my football team who wanted to crush you,” David said. “All the time. But they knew I would never let them. That’s how you made it out of high school alive.”
He finished with the installation and stepped down. I finally let go of the fixture and shook the numbness from my arms.
David was changing the narrative of my adolescence and I didn’t like it. I wanted to count him among the high school jocks and hayseeds who taunted me. Those bullies are gone, lost to time or floating around in alumni Facebook groups that I never join. David remains, so he became the default stand-in for the injustices of my youth.
I was sweeping bits of wire and drywall from the room when David spoke up again. “Did you ever think about what it was like for me, Mark? When we were in high school?”
I narrowed my eyes at him, amazed the popular varsity quarterback would dare take any childhood sympathy for himself. “Oh, please, David. Really?” He stood there. “Fine. What was it like for you?” I dripped sarcasm. “How did my struggle coming to terms with my gay identity in a hostile environment affect you, pray tell?”
He considered his words, mentally editing them down to a single remark. “It was just hard, Mark,” he said. “That’s all.”
And somehow, in that moment, my selfishness abated. I allowed the possibility that it could be tough growing up with a gay pride parade float as a brother.
Once you change the lens, other things come into view. Like the openness of David’s emotions, and his guilelessness when facing our family tragedies. He was the one who said he could never handle it if Dad died, even as our father’s fate was sealed, even as the rest of us had the same thoughts but couldn’t express them.
David tells me he loves me, even if I stare back wordlessly. He asks blunt questions.
“Are you going to die?” David had asked in a crackly long distance phone call nearly thirty years ago, when I told the family I was HIV positive. “Are you sure you’re not going to die?” he repeated. It was what everyone in the family wanted to know, of course, only no one dared to pose the question. It never occurred to David not to. If I had been able to peer over the wall I had constructed between us, I might have loved him for asking.
We are the storytellers of our own lives. We select the bits and pieces to remember, and the truth fades. It becomes lost in the fog of a thousand years.
Mom returned home to the sight of her two youngest sons standing beside their afternoon installation. While I displayed the fixture like I was a model from The Price is Right, David explained the details of his electrical prowess.
“But I vacuumed,” I jumped in. I clicked off my contributions as if they were a checklist for Mom’s affections. “I took all the parts out of the box. I cleaned up the mess. I held the light fixture!”
“You didn’t need to hold the fixture,” David said, and his smile gained wattage. “I just liked seeing you squirm.”
I threw up my arms. “What do you mean? It could have fallen on my head!”
“Not a chance,” David said. “I was actually holding it up at the ceiling.” He punched me in the arm. “I had you the whole time, little brother.”
And with casual amusement and affection, David grinned again.
Mark
———————————————————–
PLUS…
Two upcoming events for people with HIV are selling out fast, and I’m a big fan of both of them. The 10th Anniversary HIV Cruise Retreat (“The Poz Cruise”) will set sail this November 1-8, and special incentives are being offered until the end of February. This is an amazing week of fun and fellowship for people with HIV of all stripes and our allies. Meanwhile, if you are an HIV positive gay man and in recovery, the 2nd annual Positively Fabulous retreat is being held this April 10-13 and they are nearing their capacity as well. Check the web links for more information!
Tags: Aging, family, gay, hiv
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 7 Comments »
Designing and Disclosing on Project Runway
Sunday, January 19th, 2014
If you’re considering how to best disclose your HIV positive status to everyone you know, here’s one suggestion: learn to sew. Television’s long-running reality hit Project Runway could be holding a spot just for you.
Over the course of a dozen seasons, the fashion competition series has tackled everything from drug addiction to racism to gender reassignment among contestants, and it has hosted more HIV disclosures than any other reality show. The latest addition to the trend is designer Viktor Luna, the contestant who sported the fluttering handheld fan on this year’s Project Runway: All Stars.
Exactly how these disclosures have come about over the years is a study in contrasts, as different as the three HIV positive contestants themselves – and the whims of show producers.
In 1998, season four of Project Runway introduced the world to designer Jack Mackenroth (pictured right), the competitive swimmer, model, and all-around sex symbol who had already been living openly with HIV for 17 years. His casual disclosure during an early direct camera interview during his season showed a man comfortable with himself and his status.
“The producers knew I was positive because we fill out a stack of background information,” Mackenroth told HIV Plus. “They had my entire medical history, like every other contestant on the show.”
Already an HIV advocate at the time, Mackenroth knew the producers would eventually use his HIV as a dramatic device, but “that was fine with me,” he said, “because I saw it as an important tool as well, for HIV visibility and as a chance to fight stigma.”
That opportunity was lost when fate intervened. Before he could disclose to his fellow contestants on camera, Mackenroth developed a serious infection unrelated to HIV that forced him to withdraw from the show five episodes into the season.
“Tim Gunn sat me down and reassured me,” said Mackenroth. “He told me that everything happens for a reason, and in that moment I was like, Yeah, right. I was exhausted and emotional. But the truth is, that show gave me my platform. It worked out great.”
It would be years later until an HIV positive contestant would actually disclose their status to the cast on camera, but when it finally happened it brought all the drama and emotion the famously controlling Project Runway producers could ever imagine.
In 2010, season eight of the series included Mondo Guerra (pictured left), an insanely talented young designer who was as guarded as he was endearing. Although one should be mindful that footage is carefully edited to create characters and increase drama, Guerra certainly seemed like an artist with a painful secret or two.
During a challenge to create an original textile, Guerra designed a graphic print with a conspicuous “plus” sign throughout it. In direct camera segments, he revealed that the design reflected his HIV-positive status but otherwise kept his inspiration to himself, having not disclosed to even his own family at that point.
When pressed on the runway later to explain his design, Guerra demurred again. The judges stared in wonder. The music swelled. Filled with nervous emotion, Mondo haltingly revealed his HIV status as the inspiration for his textile. Viewers saw not only his tears but something more: a humble sort of triumph.
“I feel free,” Guerra said plainly.
Guerra’s disclosure was given generous air time during the episode and was the dramatic centerpiece of the entire season. The moment has been replayed endlessly on YouTube and was shown to a packed ballroom at the 2013 United States Conference on AIDS. It was undeniably inspiring, seemingly spontaneous, and brilliant television.
“Knowing Mondo, I think that happened organically,” said Mackenroth. “Of course, everyone is working nonstop, producing a full season in 35 days. When these vulnerable situations come up, we hardly have time to think it through.”
“When the judges genuinely wanted to know the story behind my print and design, that felt like the right moment,” Guerra told HIV Plus. “So I told them what it really represented and that moment was a turning point in my life.”
If Mondo provided the pinnacle of televised disclosures, the current season of Project Runway: All Stars has given us the most curious presentation of The Big Reveal.
In one episode, designer Viktor Luna (pictured right) and the cast were scampering about, hard at work, and suddenly Luna begins speaking of his great anxiety in voice-over. Something is weighing heavily on him. He takes two designer pals aside and quickly shares his HIV-positive status. His friends say supportive things, they hug, and then they all dash back to their sewing machines as if they’d just had a quick smoke break. Luna’s status is never mentioned again.
Luna’s disclosure, as edited, felt like an afterthought, as if the producers noticed a lull in the excitement and cued Luna to bring on the drama. Producers might have hoped for something touching, but the hurried editing actually minimized the complicated nature of HIV disclosure. Everything about it felt false.
You know we are living in a more fortunate time when the merits of one televised HIV disclosure over another are being argued.
“Regardless of how it’s produced, it’s all a win,” says Mackenroth. “Whenever this or any show combats stigma, the HIV community benefits from it.”
Guerra sees a personal benefit too.
“Personally, it wasn’t until I was open about my status that I started to take better care of myself,” Mondo told us. “For that reason, I applaud Jack’s openness about his status.”
Today, Mackenroth continues his advocacy as one of the creators of the HIV=Equal campaign. Guerra has entered the fashion design stratosphere and is a key player in the Project iDesign Campaign, which encourages doctor/patient partnership. Luna wrote about his HIV disclosure on Huffington Post, sharing the details of his HIV journey that were not included in his Project Runway: All Stars episode.
Nothing is assured, in fame or fashion. Project Runway contestants are often struggling designers who leave whatever jobs they have to compete on the show. For any of them to put their personal lives on the line, to take the sometimes frightening step of revealing their HIV status to the world, takes a special kind of courage.
Many people with HIV may not be fashion designers, but they can certainly relate to that.
Mark
(This is a slightly edited version of my essay that originally appeared on the site of HIV Plus Magazine. Jack Mackenroth photo by Stan Madden. Viktor Luna photographed at Mercedes Benz Fashion Week by Fernanda Calfat/Getty Images.)
Tags: aids, culture, gay, hiv, Recreation, Sexuality
Posted in Living with HIV/AIDS, My Fabulous Disease, News | 2 Comments »
HIV Treatment Activist Nelson Vergel Faces Down Cancer
Thursday, January 9th, 2014
In the summer of 2013, thousands of subscribers to Nelson Vergel’s “PozHealth” listserv received a startling email from the HIV positive fitness and nutrition expert.
“You are probably wondering why I have been so quiet the last few weeks…” the message began. Vergel, a trained chemical engineer who devoted himself to HIV treatment advocacy after testing positive in 1985, had a troubling explanation for his online absence. A diagnosis of cancer.
“It took me months to come out to the poz group,” Vergel said about revealing his diagnosis to his listerv. “It was a struggle for me.”
Vergel had begun the group in 1999 when lipodystrophy was a hot topic among people with HIV/AIDS and they needed a place to compare notes, and it has since become the largest treatment information listerv for people living with HIV. It still thrives at a time when the exchange of HIV treatment information among peers has waned.
The success of the group perfectly reflects the dedication of its host, a gay bodybuilder whose own serious struggle with AIDS over the years belies his appearance of physical strength. Group members clearly admire Vergel and see themselves in his medical challenges and triumphs.
So it was with some trepidation that Vergel revealed a new health crisis to the group, one that forced his HIV to the back burner. “I was very concerned that people might panic, not about me, but themselves. I didn’t want them to think this applied to them,” Vergel said. “I really was more concerned with them projecting my challenge onto themselves.”
He had little choice, however. His condition was serious.
In June, Vergel was experiencing stomach problems that doctors initially believed to be ulcers. Then came a diagnosis of H Pilori, a stomach bacteria. Vergel requested an upper GI endoscopy, during which ulcers were found and biopsied. While treatment with antibiotics killed the bacteria, the news from the biopsies was grave: Vergel had a aggressive brand of cancer known as non-Hodgkins lymphoma.
“I was shocked,” said Vergel. It wasn’t the feeling of impending death he had experienced when he tested HIV positive in 1985, but something more incredulous. “It hit me really hard. I had been preparing for heart attacks, or anal cancers, which I have checked every year. I was controlling those high risk situations. But this…?”
Despite the cruel irony of battling mightily against one disease and then facing another, it didn’t take long for Vergel’s instincts as a treatment advocate to take hold. “After I got the news, I got into my car and cried a little,” he said. “And then, before I called my partner, I got on the phone and did a Google search.”
His research confirmed the treatment plan of chemotherapy that his doctor recommended, but he soon discovered that cancer healthcare isn’t nearly as accustomed to empowered, involved patients as is the world of HIV.
“I realized how behind oncology is from HIV,” Vergel said, “because there are fewer online resources for patients. It felt like early HIV. They don’t discuss side effects until they happen to you. I kept finding out things randomly. It made me realize how good we have it in HIV. In oncology all they care about is killing the cancer. But part of the goal should be protecting the patient from side effects.”
His treatment as a patient was often the antithesis of what he has advocated for HIV patients for decades. That advocacy, and Vergel’s influence in crafting programs to empower HIV patients, is considerable.
Vergel educated himself on HIV pathology and medications after his HIV diagnosis, and became involved in several national health commissions, leading to his founding of the Program for Wellness Restoration in 1994. Because of his interest in physical fitness, he pushed for federal funding for studies of anabolic steroids and promoted results of earlier studies that showed that once you reach 55% of lean body mass, your chances of survival drop precipitously.
He was convinced that resistance training, nutrition and supplements are a key weapon against HIV. His 1998 book, Built to Survive, found a place on the shelf of nearly every gay man who had HIV and a gym membership.
For better or worse, the image of muscled gay men with HIV that emerged in the 1990′s, pumped up from weight training and anabolic steroids, can be directly attributed to the seminal work of Nelson Vergel, who trumpeted the importance of lean body mass in fighting HIV infection and maintaining a healthy immune system.
Unfortunately, his own HIV has been multi-drug resistant, and Vergel is currently on the last available regimen to treat his disease. The clinical expression for patients like him is “treatment failure.” Vergel hates the term.
“Being called a failure sends the wrong message to patients,” he said. “and I have been trying to change that language in the treatment world. It’s demeaning to patients who are adherent.”
As his cancer treatment progressed, other differences between his two health crisis emerged.
“A good friend of mine was diagnosed with cancer the week before me. He said, ‘I have neighbors cooking for me. Doing my laundry. Isn’t it sad that I could never disclose my HIV, but I can disclose this and everyone rushes to help? This is a diagnosis that my community can get behind. Isn’t it sad that HIV isn’t the same way?’”
The good news is that, unlike Vergel’s history with HIV medication, the cancer treatment seems to have worked.
“There is no cancer based on my last biopsy,” Vergel said. True to form, Vergel made the decision himself to stop the rounds of chemo early because he was concerned with its effect on his immune system. But he remains vigilant. “You are never cured of cancer. Like HIV, you have to keep an eye on it.”
The last six months have been “the most intense of my life,” he said, but it has also included signs that life, and joy, can go on. Vergel and his longtime partner were married in Washington, DC, on September 21.
“Always enjoy the moment,” Vergel said. And then he adds an observation for those living with HIV. “Apply what you have learned in HIV and take control of your own health, no matter what the diagnosis. Oncologists are not used to seeing patients like us. Long time HIV survivors have many years of experience dealing with the healthcare environment, we have gathered lessons on second opinions, questioning our doctors, we’re relatively young and healthy and have learned a lot of skills.”
Today, Vergel is again busy posting to his POZHealth listserv, offering advice in TheBody.com’s “Ask the Experts” forum, and he just founded a new men’s health program, ExcelMale . Even the hair he lost during chemo is growing back.
“I didn’t know how resilient I was until I went through this,” Vergel says, and then there is a thoughtful pause. “Resilience. I like that word.”
Mark
Some of the most popular My Fabulous Disease videos have shown Nelson trying to whip me into shape. “Fitness Stud Nelson Vergel Raids My Fridge” is hilarious and informative, “Hitting the Gym with Fitness Expert Nelson Vergel” benefits from his tight tank top, and “The Hard Facts on Erectile Dysfunction” offers advice on, well, you know (and opens with us in bed together). Check them out!
Tags: aids, culture, help others, hiv, physical, physician, research
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 6 Comments »
The Top Ten ‘Fabulous’ Posts of 2013
Monday, December 30th, 2013
The year 2013 was a game changer for My Fabulous Disease, and I want to thank you for your clicks, comments, and shares. I have more confidence as an advocate and a writer, thanks to you, and traffic for this blog more than doubled over last year!
I’m bad at predicting which posts might resonate with readers. My philosophy has always been, “if you build it they will come,” and the rest is up to you. Apparently you have very eclectic tastes, my friends.
In ascending order, the Top Ten Postings of 2013 are…
10. The Inspiring Advocates of the 2013 United States Conference on AIDS. This is a rollicking video recap of the annual event, produced by the National Minority AIDS Council, that brings together the very best our HIV/AIDS service community has to offer. Public health and pharma are there, of course, but I’m always thrilled to meet those who are doing the work on the ground, for local community-based organization working with scant budgets but tons of heart. This video includes a discussion about the generational divide among people with HIV, interviews with multiple movers and shakers, marching bands, and Mardi Gras pageantry.
9. An AIDS Death in the Family. Drawing from my book, A Place Like This, I have revisited the night my brothers’ longtime partner died from AIDS, and the surreal haze that surrounded the occasion. It is about loss, yes, but also about how we cling to social habits during the darkest of times to attempt to normalize things that feel anything but normal. A dying man offering a “parting gift” to me, conversing as if he won’t be gone in a few days, and the dreadful phone calls that a grieving lover must undertake. Yes, it’s rough. But it’s life… and death.
8. Two Minutes of Advice on Testing HIV Positive. This is a clever social media campaign: Healthline, an online health community, has asked people who have been living with HIV to create videos for those who have recently tested positive, known as “You’ve Got This.” Think of it as “It Gets Better” for those with HIV. Of course, I had to create a video in my own peculiar way — something that demonstrates the sense of humor that has served me well over the course of 30 years living with HIV. There are now quite a few videos in this campaign with a variety of messages, and I encourage you to visit the Healthline site; you might find the message you or someone you know really needs to hear.
7. Probing My Anal Phobia. I cannot believe I told you these things, which might be one reason this essay is a personal favorite of mine. Maybe this is about facing your fears, because I hate talking about… anal things. So what did I write about? Anal sex, cleanliness, colonoscopies, and the most outrageous douching disaster I have ever experienced. Yes, that’s right, I went there. And the results will either have you laughing or finding out how to unsubscribe. Sometimes, I just need to write things that are on my mind and try to block out the fact that my Mom follows my blog. Enjoy!
6. The Increasingly Strange Case of Uncle Poodle. Long before the Duck Dynasty controversy blew up, another popular reality show had an off-camera moment that caused quite a stir. Uncle Poodle, the gay uncle from the reality show Here Comes Honey Boo Boo, came out in a printed interview as HIV positive, and further claimed that he had been infected by someone who did not disclose his status — and who went to jail as a result. The details, however, are murky, and say as much about shame and HIV stigma as they do about criminalization laws.
5. HIV and Gay Media: The Vanishing Virus. I suppose I have a lot of nerve. After having the honor of being included in an invitation-only summit of LGBT media representatives, I spend much of my time at the event hounding them, on video, about why they don’t write about HIV more than they do. Fortunately, the participants were honest, thoughtful, and quite candid in their responses. The event was co-sponsored by the National Lesbian and Gay Journalists Association and the video was featured on the main page of their site, so I suppose all is forgiven!
4. Surviving Two Epidemics: AIDS and Meth. My history of crystal meth addiction and recovery isn’t something I am ashamed of, but I don’t write about it as much as I once did. The whole recovery process feels almost too precious to share. But when I was asked to share my story for an ongoing feature in Positive Frontiers about gay men in recovery, it just felt right. This essay is my truth, and maybe it will speak to someone at a time when they are ready to make a change. For information on crystal meth recovery, visit http://crystalmeth.org/.
3. The Beautiful Sadness of Dallas Buyers Club. If anyone has a chance of stealing away an Oscar from Chiwetel Ejiofor of 12 Years a Slave this year, it is Matthew McConaughey, who is transcendent in this illuminating look at one straight man’s response to the lack of FDA approved HIV medications. Some have criticized the film for not showing the impact of gay activists, but that’s part of the point of the film: this is the story of this terribly damaged straight man, and how his prejudices were (somewhat) overcome through his own advocacy, as self serving as it may have been. You can count on one thing: Jared Leto, who played a transgendered friend, will be taking home an Oscar for Best Supporting Actor.
2 (tie). Stop Bludgeoning Young Gay Men with Our AIDS Tragedy. I thought I could say these things that other folks — HIV negative or young gay men themselves — would be crucified for saying. I was wrong. I got crucified, too. Fortunately for my sensitive ego (yes, angry comments still hurt my feelings), many others understood that our history is important and vital to preserve, but it’s not a prevention strategy for the landscape of today. This was more primal scream than writing for me. Perhaps I should learn to count to ten?
2 (tie). The Private War That Killed Spencer Cox. It’s kind of amazing to realize that Spencer, an early activist with ACT UP New York that went on to found Treatment Action Group, died only last December. So much has been written and done in his honor, including ongoing public forums on either coast that address PTSD among people with HIV/AIDS, and how we as a community can best address their (our) needs. This essay, posted soon after Spencer died, explores some of those issues, including trauma, loss, and addiction, all of which Spencer himself wrote about before his untimely death at the age of 44.
1. Your Mother Liked It Bareback. I had the title before I wrote the piece, and that’s probably a terrible thing to admit, because the title alone incensed people (The Huffington Post, which carries my content regularly, refused to post it at all). Another primal scream put on paper, an outgrowth of complete frustration over our refusal to admit that there are other “protections” against HIV that do not include condoms. Despite applauding those who do use condoms more than once in the piece, I was accused of “promoting” barebacking and received my favorite name-calling moment of the year, as a “vile merchant of death.” Even when faced with the facts about undetectable viral loads, or PrEP, some who read this article fell back on 40-year-old worries: “you could get an STD!” Honey, if the worst we have to fear these days is the clap, then sign me up. That just makes me feel nostalgic.
But wait! The Real Winner of 2013: “The Sound of Stigma.” When POZ Magazine asked me to contribute a cover story on HIV stigma among gay men, I had no idea it would become my most widely read essay of the year, by far, without even appearing on my own site. Even more surprising, to me, because the piece is such an indictment of how gay community turns against its own (“We are AIDS itself.”). The posting of the story on Poz.com has been shared 2,500 times and has more than 150 comments, ranging from emotional to angry to heartbreaking. I am proud and yes, humbled, that the article contributed to such an important conversation.
Have a bright, joyful, and healthy 2014, my friends.
Mark
Tags: A Place Like This, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, meth, physician, politics, recovery, serosorting, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
The My Fabulous Disease Holiday Spectacular!
Friday, December 20th, 2013
(I can’t resist posting this each Holiday Season. The video below is my very favorite, of the more than 60 I have produced over the years. Enjoy!)
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
Mark
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1 egg
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).
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Tags: acting, culture, drag, family, gay, gratitude, help others, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | No Comments »
Once, When We Were Heroes
Thursday, November 28th, 2013
My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.
There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.
There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”
“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)
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PLUS…
“Know Stigma” (I hereby pronounce “stigma” the Word of the Year) is a terrific site devotes to photos and video that challenge our attitudes towards one another as gay, straight, femme, old, poz guys, etc. There are some really intimate, honest videos with people discussing the impact of stigma on all aspects of their lives. “We want to create a conversation around how we treat each other as gay, queer, bi, trans, and straight men,” says their site. “Like everyone, we have our biases and prejudices. Many of us are made to feel invisible because of age, body type or skin color. How can we say what we want without hurting others? How do we imagine our actions and words might make someone else feel?” Check it out.
After a lot of talk about HIV stigma, there is now a project in the United States that wants to actually quantify it and address it through leadership by people with HIV. “The People Living with HIV Stigma Index” has been launched in dozens of countries but only now has received funding to implement it in the U.S. It measures HIV stigma in the lives of people with the virus, and does so by training and employing people with HIV themselves to conduct the surveys. Watch a video of Laurel Sprague of the Global Network of People Living with HIV discussing stigma and this project with Eric Sawyer of UNAIDS.
Tags: Aging, aids, culture, gay, help others, hiv, physician, politics, research, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 3 Comments »
Stop Bludgeoning Young Gay Men with Our AIDS Tragedy
Thursday, November 21st, 2013
Lesley was my closest friend to become sick in the 1980′s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.
But there’s something I will not do. I will not dig up Lesley’s body and beat young gay men with his corpse. Lesley didn’t perish so I could use him as a scare tactic. He wasn’t a cautionary tale. He wasn’t a martyr. He was a man with the same passions and faults as anyone else, and I won’t use his death as a blunt instrument.
Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.
“If their friends all died like mine did, maybe they would think twice before having sex without a condom,” goes a typical remark, drenched in self pity and tenuous logic.
This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.
So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform “duck and cover” drills in case Russia drops the bomb.
To view these young men and say, in effect, “if only you saw all the death that I saw…” is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.
I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet — and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn’t going to win the respect or investment of younger men. It makes us as relevant as old men on the front lawn waving a rake at youngsters.
I take our community history very seriously. I’ve written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can’t wait for the release of Sean Strub’s upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history — and in recognizing that many of us still carry trauma born of that time.
Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the “Let’s Kick (ASS) AIDS Survivor Syndrome” project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.
That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, “people think you only have to take a few pills and that’s it,” we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I’m not going to deny all that in order to advance a fright-show storyline that isn’t my experience.
There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don’t include burying friends or serious health concerns, wasn’t that our goal all along?
Nowhere has our AIDS tragedy mindset done more damage than in the rollout of the unfairly maligned Pre-Exposure Prophylaxis (PrEP), the prevention breakthrough that allows HIV negative people to take anti-HIV medication to avoid infection. It is largely viewed as an alternative to condoms, which has quickly labeled HIV negative men taking PrEP as “barebacking sluts” by people coming unhinged at the very idea of unprotected sex. (Note: I remember when gay sex never involved condoms. It was glorious. I always thought getting back to a place where we had a real choice in the matter was kind of the point.)
There is something about the simplicity of PrEP (a pill a day! no condom negotiation! no guilt or judgment!) that is driving older gay men up the wall, considering their resistance to it and spurious claims of inefficacy, cost, and side effects. Tellingly, younger gay men have voiced fewer objections.
The facts are these: PrEP is at least as effective as condoms when used properly. The drug currently used for PrEP, Truvada, is well tolerated with few side effects. And despite fears and misinformation, it is being covered by insurance providers (do you know of even one claimant that has been denied?). For those without insurance, Gilead, the maker of Truvada, has a generous patient assistance program that allows you to earn a sizeable income and still get the medication.
Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of what we once knew to be true.
The 1980′s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.
May they rest in peace.
Mark
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PLUS…
My friend and early mentor, Eric Rofes, was an out, gay, kinky, deep thinking anthropologist that wrote the important book Reviving the Tribe, about building community among gay men during the AIDS epidemic, and Dry Bones Breathe, his follow-up work. He was one of the first to write about the value and even spiritual importance of anal sex for gay men and even exchanging bodily fluids (when he said as much at a forum for gay men in Atlanta I organized in 1995, it was as if a bomb went off, such was the hysteria). For a thoughtful overview of Eric’s work and influence, check out a piece from Charles Stephens about the Rofes legacy — and where his worked wasn’t fully realized. Whenever I fear my writing might seem provocative, I think of Eric Rofes, his bravery, and his lasting influence on the work of many of our leaders. Eric died far too early in 2006 of a heart attack. (Photo credit: Markichester.com)
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 33 Comments »
