Friday, May 24th, 2013
At a recent town hall forum in Washington, DC for people living with HIV, the very idea of what it means to be positive — and who is our national voice of advocacy — was questioned. With the demise of The National Association of People with AIDS (NAPWA) earlier this year, it’s an important conversation to have.
The forum, sponsored by the Federal AIDS Policy Partnership, a coalition of AIDS-related organizations and interests, didn’t bear much fruit in terms of hearing the feedback of people living with the disease. The event was lightly attended in person, with most of those living with HIV present representing some organization or another, and the online viewers had technical problems and, presumably as a result, contributed very little.
The most compelling minutes of the event, to me at least, were courtesy of the sheer audacity of former administrators from NAPWA (like Frank Oldham, pictured above), who made a pitch for their new HIV advocacy venture. After bankrupting a multi-million dollar agency and charges of financial malfeasance, you’d think they would opt for a lower profile. In this video episode of My Fabulous Disease, I take them to task and even provide a dramatic reenactment of some of their organizational negotiations. I can’t wait for you to see it.
The day following the forum I attended a scheduled meeting of the the Federal AIDS Policy Partnership (FAPP), and heard excellent presentations on the state of Ryan White during healthcare reform (iffy but hopeful), and how we as people with HIV can best navigate Obamacare (tip: go directly to www.HIVHealthReform.org and get educated).
In light of the town forum they hosted, I also strongly encouraged FAPP to add seats on their body specifically for people with HIV — or for representatives from coalitions for people with HIV — so there would be voices of people with HIV that wore no other hats or were tied to other agencies or agendas. I look forward to giving you an update on whatever steps they might take in this regard.
Thanks for watching, and please be well.
p.s. Frank Oldham has resigned from his position with Pozitively Healthy. Should other NAPWA officials involved in the new endeavor follow suit?
Wednesday, February 27th, 2013
The turning point could be traced to August of 1998. It was the month that, for the first time in well over a decade, the Bay Area Reporter did not have a single AIDS obituary submitted for publication. The promise of protease inhibitor medications had been realized, and it felt for many that our long community nightmare was coming to a close.
The milestone in the life of San Francisco’s LGBT newspaper was celebrated around the country and became a media story unto itself. “AIDS Deaths Take Holiday,” trumpeted the Pittsburgh Post-Gazette. “For Once, No AIDS,” said the Wilmington Morning Star. The headline in the Spokesman Review assured us that “No News is Good News.” The Bay Area Reporter’s own front page carried two words in enormous type: “No Obits.”
That could be seen as the moment in which coverage of HIV in gay media began to fade.
Today, the LGBT community is celebrating other milestones with joyful regularity. The right to serve openly in the military. Marriage. Growing acceptance and political muscle.
HIV/AIDS has largely moved off the front page and out of public consciousness. Despite newsworthy data such as increased HIV transmission among gay men and the ongoing slaughter of gay black men in particular, those stories feel stale. It has all been said so many times before. Even new storylines, such as Pre- and Post-Exposure Prophylaxis, cure research advocacy, and tools on the horizon such as rectal microbicides, it’s become harder to capture the imagination or interest of the gay community. When new data was reported recently showing that half of the 20-year-old gay men today will have HIV by the time they’re 50 (and if they’re black, that figure rises to a whopping 70 percent), the news barely rated a tweet or newspaper item.
What, then, is the responsibility of LGBT media in this climate of rising infection rates and a bored readership? Are they simply reflecting the community’s waning interest, or do they have a responsibility to keep HIV in the headlines, to serve as advocates for better public awareness?
I was just in the perfect place to ask these questions: The 2013 LGBT Media Journalists Convening, held in Philadelphia and sponsored by the National Lesbian and Gay Journalists Association. About 100 media professionals, including a healthy dose of bloggers like myself, attended the event, which educates LGBT journalists on various issues so they we might report on them with more authority. Those issues this year were transgenders, immigration, aging, labor, and international rights.
The absence of HIV/AIDS wasn’t lost on me, I assure you (AIDS activists called them out about this in real time in the event’s Twitter feed at #LGBTmedia13) and it became the topic of my interviews with various people in attendance. Their very personal answers – and undeniable passion for the cause of HIV in many cases – sure made it a little easier to understand the tough choices they are making every day. I will be very interested in your reaction.
Aside from my griping over HIV coverage, it really was terrific to be in the company of a lot of dedicated journalists, and I appreciate very much the work done to mount the event, including the contributions of Bil Browning of The Bilerico Project (pictured with me above, at right).
Is sparse HIV coverage just a sign of the times? Is it progress? And what can we do to increase visibility again?
The journalists in my video provide some answers, but I especially liked the observation by gay political activist David Mixner, who reminded me that coming out, whether as gay men or as someone living with HIV, is the greatest tool in fighting stigma and helping people see the importance of the issue. I’m glad I have some company in the poz blogosphere, but we can always use more voices. Anyone who has the ability to share their story, online or across the dinner table, can make an awesome contribution.
Meanwhile, I’m going to keep nudging my LGBT media colleagues, and I encourage you to do the same.
Thanks for watching, and please be well.
Tags: aids, barebacking, criminalization, culture, gay, hiv, politics, research, serosorting, Sexuality, testing
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 7 Comments »
Monday, February 18th, 2013
In the course of a few short months, Lee Thompson (“Uncle Poodle” to reality TV watchers) has managed to personify a variety of hot button issues among gay men today. He has come out as gay and HIV positive. He has sent an ex-lover to jail and sent nude pictures via Grindr.
Or not. Depending on whom you believe. Let’s break down the strange case of Uncle Poodle.
In what we can all agree was a positive development, Thompson publicly came out as gay last year and evidently has the love and support of much of his family, the colorful clan of the TLC reality show “Here Comes Honey Boo Boo.” He instantly became an ally and friend of gays everywhere. So far, so good.
Then, in a recent interview with the Atlanta gay magazine Fenuxe, Thompson made the announcement that he tested HIV positive in May of 2012. What was startling, though, was his explanation of his infection. Thompson claimed that not only had an ex-lover knowingly infected him, but that the man is currently serving a five-year sentence for non-disclosure of his HIV status (an example of what is known as HIV Criminalization).
Almost immediately the details of the story were questioned (by everyone except Fenuxe magazine, which did not delve into the prosecution in their piece; the writer simply “applauded” Thompson’s bravery). Journalist Todd Heywood posed serious questions about the case, including the timeline between Thompson’s infection and the reported prosecution, which would have happened in mere months. Heywood also scoured court records from Georgia to Alabama and could find no evidence of any such case. Requests for more information from Thompson’s people have garnered no response. The defendant has never been identified.
Did Uncle Poodle lie about sending the ex-lover to jail? And why the hell would he do that?
It is my opinion that Thompson made up the prosecution story. And in doing so, he behaved in much the same way that most everyone does who tests HIV positive these days. He looked for someone else to blame. He played the innocent victim. He released himself from personal responsibility.
Because everybody knows that when you test HIV positive, you don’t call your doctor to start treatment. You call the police to press charges.
Stigma is driving these actions, of course. People who become positive today are judged for being “bad,” for not following the rules, for failing the community and becoming one of the great unwashed. It makes no difference that they were simply caught being human, that they let down their guard for a moment or got drunk or didn’t care or stupidly fell in love. Their friends will furrow their brows. Their dating life will wither.
And so, someone must pay for these indignities. That is one reason HIV criminalization laws have prospered – they appeal to our sense of vengeance. They are also vessels of homophobia, sexism and racism, considering how badly the laws are applied and how often prosecutions run counter to public health or even common sense (some convictions have imposed jail time for decades even when condoms were used and no one was infected, and advocates believe people forgo HIV testing in fear of being prosecuted). Conservative lawmakers and prosecutors — who don’t believe people with HIV should be having sex at all — are more than willing to exploit our feelings of revenge when testing positive so they can lock up some diseased fags.
I empathize with those who test positive today. They suddenly find themselves on my side of the viral divide, and for some, their hearts and minds may not have made the crossing yet. Perhaps they have unresolved issues about becoming infected. Whatever their circumstances, testing positive is a major life event and I can understand if some have an impulse to lash out.
And I believe that Lee Thompson did exactly that when he reported sending the man who infected him to jail. The man who no one can identify. The case that no one can locate.
Things have just gotten a little more complicated for our Uncle Poodle. Now, someone who claims to have communicated with Thompson on Grindr is trying to sell naked photos that Thompson supposedly sent him (isn’t humanity grand?). Thompson being linked to Grindr — the app about which controversy recently arose when a survey indicated half of its users were engaging in bareback sex — presents a delicate situation indeed.
People living with HIV have every right to “full and satisfying sexual and emotional lives,” as the Denver Principles stated thirty years ago. There is no evidence or details about Thompson’s sexual life or choices, so let’s simply hope he is conducting himself as someone with intimate knowledge of HIV non-disclosure laws, considering his contention that he sent someone to jail for withholding their status. The sword cuts both ways, and I worry for him.
Lee Thompson certainly has faced his share of scrutiny, living as an HIV positive gay man in the rural South, much less someone connected to a wildly popular reality series. But he should consider his moves, both public and private, very, very carefully. Because we don’t simply like to tear down celebrities, or save our judgment and revenge for those with the thickest skin.
As we prove time and again, we can do it to the very best of friends.
Thank you for your stunning readership in recent weeks, my friends. In particular, the recent post “Your Mother Liked It Bareback” broke all traffic records on this site. I will admit to being precociously provocative with that one, and especially appreciate the comments you left, which proved far more interesting than the post itself. I do believe, as Gus Cairns remarked, that much of this passionate debate is driven by the pure grief so many of us experienced — and that is nothing to be taken lightly. My point remains that our emotions have little to no effect on the fact that nearly half of gay men don’t use condoms at least some of the time; validating other prevention tools isn’t a threat to condom use; and finally, what are we doing for the 50% of gay men not using condoms — or are they expendable?
Monday, January 28th, 2013
Whenever a new study of gay men is released showing that we are having bareback sex, the arbiters of sexual conduct among us clutch their pearls and decry this shameful, shocking, murderous behavior. So you can just imagine runaway pearls showering the floor when a recent survey showed that nearly half the users of the gay phone app Grindr engage in unprotected sex.
I really wish that people would put down their smelling salts and try to understand the reasons why. Instead, every time some half-assed study demonstrates what we already know, they stand there in stunned outrage, frozen in their outdated indignation like they’ve been caught baking bread in Pompeii.
There’s nothing new here, except our seemingly endless fascination with gay men behaving in exactly the same way as nearly every other man on this planet.
Maybe those who find bareback sex distasteful believe they are being politically correct, that their strident judgments about the sex lives of others are in the service of HIV prevention, that criticizing other gay men for acting like human beings will somehow alter instincts that evolution built over millions of years.
Perhaps this is part of our new gay agenda, to demonstrate to straight society that we’re just as good at shaming gay men as they are, that we’ll gladly be neutered for equal rights and be denied the same pleasures they take for granted, that if they only give us gay marriage we won’t talk about the unprotected butt fucking that will happen on the wedding night.
Somehow, we have come to the homophobic conclusion that when gay men engage in the romantic, emotional, spiritual act of intercourse without a barrier we label it psychotic barebacking, but when straight people do it we call it sex.
This double standard is ludicrous. Your mother barebacked. It is a natural and precious act that has been going on, quite literally, since the beginning of mankind. Abraham (barebacked and) begat Isaac; and Isaac (barebacked and) begat Jacob; and Jacob (barebacked and) begat Judas and his brethren (Matthew 1:2).
Maybe you have the uncanny ability to enjoy sex while your penis is wrapped in latex. That is terrific, really. Please continue. You are using a classic prevention tool, a real golden oldie. Or maybe you and your boyfriend are HIV negative and have the good fortune to be in a committed, monogamous relationship in which you are having sex without condoms. Or perhaps, by whatever Olympian discipline you possess, you are capable of using a condom each and every time you have sex, no matter what. You are to be commended, and you are, regrettably, in the minority.
All of these scenarios are valid and worth replicating whenever possible. They do not, however, represent a superior high ground from which to make pronouncements about someone else’s choices.
There was an unspoken agreement that gay men made amongst ourselves during the AIDS crisis of the 1980’s. We accepted that we would use condoms – at the time it was the only “safer sex” option that existed – until whatever time the crisis abated. Many of us believed this contract would be in effect for the rest of lives, if only because we thought we would be dead within a few short years. But none of us could have fathomed that, thirty years later, we would still be held to these strict and oppressive guidelines.
Even then, some of us didn’t follow them. One might assume that the cascade of death we experienced would have led to long term behavioral change. In fact, many of us responded to the crisis in a profoundly human way: we found comfort by making love with one another, often without a condom. It was a life affirming gesture, and an enormous “fuck you” to AIDS.
In fact, a 1988 study of gay men showed that almost half of them never used condoms, and most did not use them all of the time. These figures are strikingly similar to the recent Grindr results. Everything old is new again. Or it never went out of style in the first place.
The 1988 study is particularly interesting when you consider how many gay men consider that period a time of great sexual austerity — and some of them are wishing for a return to those times a bit too ardently. Gay men who witnessed the early AIDS carnage will sometimes say, “If only younger men knew what we went through. If they had seen it, they wouldn’t be behaving this way.”
That’s sick. I do not wish young gay men could witness the soul crushing things that I did. I worked in the trenches very, very hard so that they might have the option of being apathetic. I prefer their blissful ignorance to burying them.
And make no mistake about it, the number of gay men in the United States dying from AIDS is a small fraction of what it once was. Cigarettes are now killing more people with HIV than the virus itself. HIV/AIDS has become a dangerous but largely manageable disease, and fear tactics that suggest otherwise are being ignored because they simply are not true. Sex is sex, it is affirming and natural, and anyone who wishes to equate unprotected sex to death and disease really needs to get some therapy.
Condom usage will almost certainly continue to decrease in the future because of new tools that have joined the growing list of HIV prevention options. Pre-exposure prophylaxis (PrEP) – taking medication in advance of sex with an infected person – has been shown to significantly reduce the risk of transmission (and some insurance plans in the United States are covering the cost). Many people living with HIV are limiting sex partners to those who share their HIV status, known as serosorting. Positive gay men have largely dismissed scary fireside stories of the ultimate boogeyman, the reinfection SuperVirus, who has never materialized.
We also know that when those with HIV have an undetectable viral load the risk of transmission is negligible, so “treatment as prevention” efforts have increased (a new British study of straight couples showed that an undetectable viral load is more effective in preventing transmission than condoms, and those researchers believe the same will hold true for gay men).
Gleaming on the horizon are rectal microbicides. These products, currently in development, will come in the form of lubricants or douches that will prevent HIV infection, and they could make the endless debate and judgments about condoms moot, once and for all.
We don’t have to do this anymore. We don’t have to clobber each other with condom fascism, discredit the value of our sex lives, or promote a singular strategy that doesn’t work for everyone. We can accept that gay men are making educated choices to engage in a variety of risk reduction techniques. We can acknowledge that all of these techniques reduce the risk of HIV infection and all of them constitute “safer sex.”
And finally, we can stop pretending that those who remain fixated on condom usage have the moral upper hand.
The emperor has no clothes. And he isn’t wearing a rubber, either.
“Is ‘Dawson’s 20 Load Weekend’ the Most Important Gay Porn Film Ever Made?” This posting dissects the sexual choreography of modern bareback porn, and puts it into historical context with gay porn of the last several decades.
Thursday, January 24th, 2013
For several years now, I’ve made the occasional pilgrimage to Vero Beach, Florida, to be treated by Dr. Gerald Pierone for facial wasting, or lipoatrophy. And for all of these years, we have battled The Look: the sunken cheeks and sagging face of someone who has been on HIV medications for a long time. In my latest video blog below, you’re going to see our progress, step by step.
It was all well and good to be front-and-center as an HIV-positive man during the first years of the AIDS crisis. It’s easier being a role model when your face looks good on the poster. But my dismay over the telltale wasting that began to appear on my face surprised me, and it pitted two strong emotions against one another: my pride in being a longtime HIV/AIDS survivor, and my shame for looking like one. I’m only human.
There is an emotional component to facial wasting, because it forces us to address our own vanity, as well as the very real, physical results of HIV medications, which often affect people who have had no other manifestations of the disease. I’ve tried to address these issues in past blogs, but to be honest, I have put more time and effort into just trying to wipe the AIDS right off of my face.
For my earlier treatments, Dr. Pierone used Sculptra and Radiesse, both effective but temporary solutions to facial wasting (results vary, but typically last somewhere between six months and two years).
Beginning with my last appointment a year ago (shown in a previous video blog), Dr. Pierone began using Artefill, a more permanent filler product (Dr. Pierone wisely does these treatments in careful stages). But, because Artefill is not FDA approved specifically for facial wasting (it is approved for cosmetic use), it cannot offer the same kind of patient assistance programs as the ones offered by Sculptra and Radiesse. New studies are underway now to show what we already know: Artefill is safe and effective for facial wasting. Once approved for this purpose, one can assume the manufacturer will join the patient assistance bandwagon.
Thanks for watching, and please be well.
(It’s worth mentioning that I do not receive promotional consideration from the makers of any of these products. I’m simply sharing my experience with facial wasting, and I’m sure that “results may vary,” as they say. — Mark)
Thursday, January 17th, 2013
This is the story of how one AIDS activist sold his soul for sixty bucks.
Living with HIV can be expensive — you never know when you may need to dash to the pharmacy for some damn thing. Or renew your subscription to Vanity Fair. So I was happy to get on a list for a marketing company that would pay me to be interviewed about various subjects.
If there’s anything I like discussing, it’s my opinion.
Recently they called and asked if I drank scotch. Of course, I responded. Love the stuff. Okay, it doesn’t precisely jive with the fact I’m a recovering addict and alcoholic, but it was the right answer. I was invited to join a focus group on one of the vilest alcoholic beverages known to man. No actual drinking would be involved. And they paid cash.
A few days later I was escorted into the focus group room with seven other men. I looked closely at the group and it dawned on me — the Wrangler jeans, the scuffed work boots, the indifference to hair products — that I was dealing with decidedly straight men who lived outside my safe haven of Atlanta. As the saying goes, the only thing wrong with Atlanta is that it’s surrounded by Georgia.
The facilitator began by asking us to describe the sensations of drinking scotch. “It’s got a smooth feel to it, yep,” one man offered. I agreed. “Smooth” would become my default answer for most of the evening. What followed was a litany of the pleasures of drinking a dozen different brands.
“That J&B has a peaty taste,” said one, to several heads nodding in agreement. “Yup,” said another, “but ‘course, your single malts usually have that. I prefer the bite of Dewars, m’self.”
What the hell were these men talking about? Was “peaty” actually a word?
“And you, Mark?” asked the facilitator. “What about the Famous Grouse?”
I couldn’t remember if Famous Grouse was a bird or a Dr. Seuss character. I was sinking fast.
“It’s smooth,” I replied a little nervously. Thankfully, a head or two nodded, and they returned to their debate over double malts and peatiosity.
The facilitator then produced magazines and asked us to cut out pictures that reminded us of scotch. Well, you can just imagine my relief. I had no idea there was a talent portion to the evening. I snatched up Rolling Stone, pulled myself away from the movie reviews, and artistically cut out pictures of pouting women and buff men. Whereas the others in the group carelessly ripped out whole pages with no sense of composition whatsoever, I requested glue and produced a dramatic collage entitled “Shake Me, Stir Me: My Scotch Experience.”
When asked at what times we enjoyed the drink, I listened to accounts of fly-fishing trips with the boys, drinking scotch fireside, and imbibing with “the little lady” after a grilled sirloin. I might as well have unearthed some lost army of terra cotta rednecks in the Georgia mountains.
Uncomfortable emotions began to stir inside me. I resented the authenticity they took for granted – and the effortless masculinity I had always viewed as a threat to my own. But truth be told, they were simply sharing stories of their friends and their wives, while I had offered nothing real about myself.
They were guilty only of being themselves, and my selfish defenses were ridiculing them for it. But I was too threatened to see it at the time. My bombast remained securely hidden.
“I enjoy it best when I lick it off my gay lover’s balls,” I wanted to say. How could I march in a gay pride parade with “No One Knows I’m HIV positive” emblazoned on my t-shirt, I begrudgingly wondered, but I couldn’t come out in a room of eight men?
“Let’s say a bottle of scotch came to life as a man,” the facilitator queried — a bit too conceptually for the room, in my opinion. “What would he be like?”
“Oh, he’d be a friendly, boisterous man!” one said. “Yeah,” said another, “with mud on his boots. A real outdoors man. Definitely not a dandy man.” It was hard to know if you were being insulted when they used good ‘ol boy euphemisms.
“Interesting,” said the facilitator. “What’s a ‘dandy man?’”
“Well,” he replied, “he definitely wouldn’t kiss boys, if ya know what I mean!” This piece of striking wit was greeted with guffaws all around. Pot bellies and hair pieces wiggled with laughter.
I now have a moral obligation to start yelling, I thought. I must climb on top of this table, begin stomping my Cole Haans, and scream “You know what I like about scotch? It keeps my AIDS in check!” I wanted to rip my shirt wide open and wiggle my nipple rings at them. If only I had a tattoo the size of a Cutty Sark bottle that read “FISTING DADDY.”
“And what would this scotch man, come to life, look like to you, Mark?” the facilitator asked. All eyes turned to me. The time was now.
“Well…” I began. “He’d be, ah… smooth.” Everyone nodded with approval.
I left after the two hour interview with sixty dollars in cash and a nagging sense of an opportunity missed.
My God, what would Larry Kramer think?
When I initially wrote this more than ten years ago, I was comfortable with my stereotyping of straight men — and Georgians in particular — for comic effect. There was zero self-awareness in the essay. Re-reading it this week, I realized it had a mean spiritedness that bothered me. I revised it in an attempt to reflect my own insecurities during the focus group, which clearly colored my attitude toward the other men in the room. Alas, the piece may be beyond repair.
And what an artifact this is, considering that anyone watching the redneck television vehicle Here Comes Honey Boo Boo knows that her “Uncle Poodle” (Lee Thompson) has come out publicly as a gay man. What’s more, Lee also disclosed recently he is HIV positive. You should definitely check out Sean Strub’s article about this, because Thompson claims to have pressed charges against his former partner for not disclosing his status, and that the partner is now serving a five year jail sentence. HIV criminalization meets trash TV!
Wednesday, January 2nd, 2013
“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… I miss the man I was forced to become.”
– “Once, When We Were Heroes,” 2007
AIDS did not kill Spencer Cox in the first, bloodiest battles of the 1980’s. It spared him that.
The reprieve allowed Spencer’s brilliance as co-founder of the Treatment Action Group (TAG) to forge new FDA guidelines for drug approval and help make effective HIV medications a reality, saving an untold number of lives.
Such triumph by a man still in his twenties might have signaled even greater achievements ahead. Instead, Spencer found himself adrift in the same personal crisis as many of his contemporaries, who struggled for a meaningful existence after years of combating the most frightening public health crisis of modern times.
Gay activists like Spencer were consumed by AIDS for so many gruesome years that many of them were shocked, once the war abated, to see how little around them had changed. Climbing from the trenches, they saw a gay culture that must have seemed ludicrous, packed with the same drug addictions, sexual compulsions and soulless shenanigans that AIDS, in its singular act of goodwill, had arrested for a decade or so.
They found themselves in a world in which no one wants to see battle scars, where intimacy is manufactured on keyboards and web sites, where any sense of community had long since faded from the AIDS organizations and now only makes brief appearances in 12-step meetings, or as likely, in the fraternity of active crystal meth addicts chasing deliverance in a dangerous shell game of bliss and desolation.
The dark allure of meth, a drug so devoured and fetished by gay men today that it is now a leading indicator of new HIV infections, enticed Spencer at some point along the way. The drug is known to whisper empty promises about limitless power and sexual escape, while calming the addict’s ghosts and sorrows for miserably brief periods of time.
When Spencer Cox died on December 18, 2012, in New York City, the official cause of death was AIDS-related complications, which is understandable if post-traumatic stress, despair and drug addiction are complications related to AIDS.
Spencer believed that this connection exists. His own writings for the Medius Institute for Gay Men’s Health (an organization he co-founded after his work with TAG) focus on exactly the issues that were distressing him personally: Crystal meth abuse. Loneliness. Risk taking. Feelings of confusion after years of accomplishment and purpose.
In retrospect you can read his work and break the private code written between the lines. It spells out “HELP ME.”
Spencer’s life during this period and beyond was difficult, by many accounts. The Medius Institute failed due to a lack of funding, defeating Spencer’s effort to address mental health issues among gay men. His drug addiction spiraled and ebbed and raged again, until he finally retreated to Georgia to live with family for a few years.
When Spencer returned to New York City last September, many of his closest friends had lost track of him. There is uncertainty about his last months, and no evidence that his addiction was active, but what little medication compliance he managed had been abandoned completely, setting the stage for his final hospitalization.
Spencer Cox died without the benefit of the very drugs he had helped make available to the world. He perished from pneumonia, in an ironic clinical time warp that transported him back to 1985. It was as if, having survived the deadliest years of AIDS, having come so close to complete escape, Spencer was snatched up by the Fates in a vengeful piece of unfinished business.
AIDS has always been creative in its cruelty. And it has learned to reach through the decades with the second-hand tools of disillusionment and depression and heart-numbing traumas. Or, perhaps, using the simple weapon of crystal meth, with all of its seductions and deceits.
Yes. There are many complications related to AIDS.
To consider “survivor’s guilt” the culprit behind the death of Spencer Cox is a popular explanation but not necessarily an accurate one. That condition suggests surviving when other, presumably worthier people, did not. Sometimes guilt has nothing to do with it.
For many of our AIDS war veterans, the real challenge today is living with the horror of having survived at all.
(PHOTO CREDIT: Walter Kurtz)
Tags: aids, culture, hiv, meth, physician, politics, recovery, research, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 50 Comments »
Thursday, December 13th, 2012
Our first meeting on-camera was six years ago. The memory of it pains me still, despite my enthusiasm for appearing on national television for any reason whatsoever.
“And how long have you been off drugs?” he asked. The look in his eyes carried a journalist’s skepticism. The intense lights of the CNN studio seemed to brighten at the question.
“Six months,” I answered. The idea of appearing at the anchor desk with Don Lemon was losing its allure. Granted, I wanted to help promote the documentary Meth, and discuss gay men, drug abuse, and my own crystal meth addiction. But the interview had become too real, too well lit, and far too direct for me to escape the truth with my usual manipulations.
“And where are you living now?” Don asked me. I felt flush, reddened by shame and by the pitiful answer I was now obligated to give.
“I live in a halfway house with other men recovering from addiction, Don.”
My mother is watching, I thought. My friends. And people who know me who will be far too polite to ever mention they saw this.
Don Lemon’s news story was insightful and illuminated a very real health threat to gay men. And it featured an actual gay drug addict on camera. A well-spoken one, but an addict just the same.
In the six years since those uncomfortable few minutes, I published a book about living in Los Angeles during the dawn of AIDS. I embraced my HIV status by launching my blog, My Fabulous Disease. And despite relapses and lessons along the way, I have faced my addiction and loosened its grip on my life and productivity.
And so, as fate would have it, I found myself back at Don Lemon’s desk recently, live on the air, to talk about living with HIV and how I was combating stigma with weapons of joy and good humor (pictured above, with video below).
I have no explanation why I should be so lucky as to appear twice on CNN, the second serving to wash away the discomfort of the first. There’s no reason except the unimaginable grace that has carried me through the last six years.
Don’s studio is much larger now, and both his command of the newscast and his popularity have grown accordingly. During the few minutes of commercial break before our segment, he welcomed me to the desk like an old friend.
The lighting was just as intense as my first visit, revealing my bright grin, lined with age and survival and experience. I didn’t complain. I even asked if it could be brighter in the studio. “Madonna lighting, please,” I joked to the crew as I took my seat.
There was no mention of crystal meth. No doubting glances or talk of halfway houses. Instead, Don smiled as he introduced me, assuring his viewers this story about AIDS was a little bit different, and then pronounced me “a trip.” I beamed with pride, more grateful to be there, discussing this topic, than anyone watching could ever know.
I wasn’t the only one who had a newfound lightness of being. Since our first meeting, Don had published Transparent, a book about his life and career that included coming out publicly as a gay man. He’s familiar with being an “other,” and with fighting shame in order to reveal who you are. We had both found a path to freedom paved with rigorous honesty.
We talked about HIV stigma and Madonna lighting. He shared a story of seeing an AIDS patient on a New York City street years ago. I interjected my new favorite topic, the injustice of HIV criminalization. We were two very different men comfortable in our own skin, who refused to allow shame a place at the table.
At the end of our interview I began to shake his hand and something remarkable happened. Don stood and reached out for a hug. It was surprising for an anchor, maybe even awkward for a brief second, and then the sweetness of the gesture won out as we embraced.
The humanity – and perhaps even bravery – of his simple act wasn’t lost on viewers, many of whom wrote to tell me how moving it was.
But for me, it was something more. Don Lemon, who remembered our first visit and never mentioned the circumstances, who knew this interview meant growth for me, a sort of redemption perhaps, and who even knew a little about overcoming shame himself, reached out in a gesture of support.
Thursday, November 15th, 2012
Richard is handsome and adorably shy. His sister began emailing me a few months ago, wondering if her brother might enjoy the HIV Cruise Retreat, because he isn’t able to disclose his status comfortably in his fairly small town.
On the last night of the cruise I gave him an award for “Sweetest Backstory,” explaining to the crowd that his cruise ticket was a Christmas gift from his sister, who clearly loves him very much (the awards are really just a silly way to acknowledge various people on the ship). He accepted the award with tears streaming down his face, while dozens upon dozens of new friends applauded heartily.
It is that fellowship, that embrace of our lives and all that we are, that best describes the week-long event on the high seas.
For seven days, I lived in a state of enhanced gratitude. For my life, my health, and for the people who organize the retreat.
Sailing from Ft Lauderdale to various islands of the Caribbean, the Cruise Retreat included more than 200 gay men, women and our supporters. We feasted on non-stop food and the loving embrace of friends old and new.
Along the way, there were games, shore excursions and even budding romances. The protective walls that often surround those of us living with HIV came crumbling down, replaced with new relationships, email addresses and phone numbers. By the time we docked back in Ft Lauderdale, hugs were long and new confidants had been established.
I don’t expect that everyone has the ability to afford the trip, but the message of the event – reach out for support and friendships where ever you might find them – echoes in my mind and heart today.
Thanks for watching, and please be well.
The amazingly prolific HIV advocate and criminalization expert Edwin Bernard has announced the launch of the new web site for the HIV Justice Network, and it is the most comprehensive internet site devoted to the global issue of criminalization. Please join their site for updates or “like” their Facebook page. If you have any doubt that criminalization is the defining HIV issue of our time, then please read (and share!) the recent Huffington Post article by Sean Strub (founder of The SERO Project, which also has a Facebook page). Sean succinctly lays out the insanity of non-disclosure laws and why they should make us all nervous (and how we can participate in advocacy efforts).
Thursday, November 8th, 2012
Recently I got a pop-up message on Facebook from a name I didn’t recognize. “Hi Mark,” it said. “We went to high school together in Bossier City, Louisiana, and I remember you very distinctly.”
“Uh oh,” I replied. Statements like that always make me nervous. Whatever popularity I had in high school evaporated when I revealed in my senior year that I had a boyfriend. Only my defiantly gay posturing kept the bullies at bay; they didn’t know what the hell to do with me.
“It was apparent you were gay,” the messenger went on, instantly winning Facebook’s Biggest Understatement of 2012, “and that helped me deal with my own sexuality. So I wanted to thank you. You helped me and you didn’t even know it.”
I melted. More than thirty years later, someone I couldn’t pick out of a lineup thanked me for making his life’s journey a little easier. Because I chose to reveal, without shame, a basic fact about myself.
There are rewards for revealing our truths, my friends. They come in the form of instant messages decades after the fact, or can be seen in the face of someone to whom you have just revealed something intimate and real about yourself.
And sometimes, as ridiculous as it feels for me to mention, Instinct Magazine names you as one of their “Leading Men of 2012.” The acknowledgement has floored me, and did something else that’s rare for a self-obsessed, anxiety-ridden man such as myself: it humbled me. Because this recognition is really about all of us who are living with HIV and doing it openly.
There are examples of us everywhere. People like Nick Rhoades and Robert Suttle, who recently testified before the Presidential AIDS Advisory Council and shared their stories of being sent to jail for not disclosing their HIV status (check out the links of their moving testimony). They exhibit a courage that I doubt I could muster. Robert Breining has devoted his time and modest livelihood to creating and maintaining POZIAM, an online poz community. And then there are scores of people with HIV, perhaps like you, that speak out in their communities, write blogs, give interviews, and otherwise speak their truth in ways that affect more people than they can ever know.
If you have the privilege and ability to share your story of life with HIV – or as a gay or lesbian person, or as someone living with disability or hardship – I urge you to do it. The rewards may not be immediate but are nevertheless held in life’s cache.
Until the day, when you least expect it, that an instant message on Facebook appears.
If you are living with HIV and in recovery from drug or alcohol addiction, I’d like to plug an amazing weekend retreat, Pozitively Fabulous, coming this Spring from April 4-7, 2013 (don’t be fooled by the dates; it’s closer than you realize and they are already nearing capacity) at Cloudland Canyon, a gorgeous retreat center in the majestic Blue Ridge mountains. The retreat is designed for anyone who is HIV+ and dealing with recovery, and is 12-step based. I know and deeply respect the dedicated people organizing this event and plan to be there myself. Check it out!