Posts Tagged ‘culture’
Did I Abandon Family for Gay Community?
Thursday, October 27th, 2011
Panama City, Florida, with its sugar sand beaches and busy tourist trade, is affectionately considered the Redneck Riviera. Folks from Alabama and its neighbor states make the trip down Highway 231 and straight into the Florida panhandle, breezing through a stretch known as Watermelon Alley, where locals sell fruit and souvenirs along the asphalt in hopes of sidetracking some of the cash the drivers have saved for their weekend adventures.
But, if you were to turn northeast from Panama City, venturing further into what could be accurately called “the sticks,†you would eventually come upon the town of Vernon, home to the rustic retreat center Dogwood Acres. And it was here, deep in the woods, that I recently spent a weekend with thirty gay men from rural Florida to talk about gay community and men‘s health.
The participants taught me a surprising lesson that wasn’t about AIDS or the state of gay rights. As deeply felt as those topics are to me, something else, something completely unexpected, came up during our time together. And it made me re-evaluate life choices of mine that go back more than thirty years.
Sponsored by Okaloosa AIDS Support & Informational Services (OASIS) and
fashioned from the ManReach retreats in Colorado, the weekend asked us all to examine what “community†meant, and how to find it even when living in rural areas, as these men do.
We sat in circles and shared laughs and a few tears. We hiked, ate quiche and slept in cabins of unvarnished plywood. I was invited to the event to lead one of the workshops, and was the only attendee who lives in a large metropolitan area.
I became fascinated by these out, proud, engaged gay men from towns with names like Cottondale and Chipley and Lake City, towns that require several magnifications on Mapquest before you can find them. How could they possibly feel free to be themselves, to be fulfilled, to be happy? Their answers shamed my presumptions.
“I lived in big cities,†said Rick, who left one in 1985 to live on a thirty acre ranch in Altha. “I’d been diagnosed with AIDS and was given 18 months to live, and knew I wanted a different life, out of the city. I would have died there if I stayed too long.†Rick and his partner grow their own vegetables, care for horses and goats, and dote upon their two pigs, Pork Chop and Lily. “It’s a quiet, natural way of life,†he says.
David lives in Fort Walton, and offered a simply reply to my question about feeling alone in such a small community. “Isolation can happen anywhere,†he said plainly. “I’m open about being gay. I don’t hide. It’s those that try to hide and are not honest about themselves that people have problems with, if you ask me.â€
But when explaining their choice to live in small towns, one reason trumped all others. “Family is important,†Marcus told me, as if he was surprised anyone could believe otherwise. “Roots are important.†Marcus left his hometown of Bascom long enough to attend college in Pensecola, but returned to live on his family’s peanut farm.
“This was not some kind of tradeoff for me,†Marcus said. Nor was he particularly concerned about his romantic options. “You meet people in other places nearby, larger cities. But having a boyfriend isn’t a priority right now. My family will always be.â€
“I live in my father’s house,†said Ken, who lives in Wellborn, “and I take care of my mother.â€
Mother. Family. The words sent a low current of guilt through me, bringing back memories of my last, dramatic days of living at home and how very far away my life has taken me ever since.
Did I leave Bossier City, Louisiana because of my life ambitions, or did I flee? The truth is a little of both. After a scandalous year of bursting out of the closet during my senior year of high school in 1978, all the gossip about me was wearing on my family. I knew I was causing some embarrassment. Only days after graduation I moved to New Orleans for college, and subsequent moves — Houston, Los Angeles — pushed me further and further away from them.
Maybe I kept a distance, geographic and otherwise, out of some deep shame, as if it would simply be better for all concerned if I stayed away. Or perhaps it was pre-emptive.
I’ll leave before you tell me to leave.
Through the years I collected a patchwork of close friends, and I even adopted gay catch phrases like “we choose our own families†because maybe it’s true. And then again, maybe I was comforting myself with substitutes.
When I tested HIV positive in the 1980’s, the stretches between visits grew even longer. I couldn’t bear the thought of household dilemmas — Would they watch which drinking glass I used? Should I hold the baby? — so I decided to sit out those years by visiting less, even if it meant dying a thousand miles from my nearest relative.
But make no mistake about it, my exile was self imposed. Never had anyone in my family rejected me or suggested I wasn’t welcome. They received my visits home enthusiastically, and with acceptance and kindness towards whatever boyfriend I brought along.
If anything, my visits were such a happy event that I wondered what my family was like when I wasn‘t around. Who really got along with each other, who preferred American Idol over Dancing with the Stars, that sort of thing. But when you’re visiting from across the country only once a year or so, you don’t get a sense of the day by day. No one ever gets annoyed or loses patience with you. And something about that always made me feel a little sad, as if I were company rather than family.
It was the rural gay men at the retreat who gave me a glimpse of what life might have been like, had I stayed. Minus the goats, of course. And the picture they painted looked simply wonderful.
As fate would have it, I left the men’s retreat and flew home to Bossier City for a visit. As I write this, Mother is reading the morning paper. One of my brothers has come by to join us for coffee. I’ve tried to be good about loading the dishwasher and doing chores to keep Mom off her feet.
When I presented Mother with my theory about having abandoned family in order to follow my gay destiny, she dismissed it with a smile. “You had places to go,†she said, “and everyone has a life to lead.†It never occurred to her that her love couldn’t travel whatever miles lay between us.
I haven‘t started to annoy her at all, unfortunately. But I do know who she wants to win the mirror ball trophy on Dancing with the Stars.
Tags: culture, family, gay, hiv, Recreation, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 16 Comments »
Lessons Learned from Kissing a Straight Boy
Wednesday, October 19th, 2011
Last night I kissed a straight guy full on the lips. Then he tenderly put his arms around me and kissed me back. Tonight I’m going to do it again.
It sounds like… conquest. Or breaking a taboo. At the very least it fulfills the fantasies of many a gay man.
And it makes me wonder why.
The object of my affections is a man named Travis, and he plays my lover in a play we’re performing about a gay couple doomed by drug abuse.
Travis is most certainly straight, judging by the dorm room condition of his dressing area, his raunchy jokes and the effortless masculinity he possesses and that I can only approximate.
At an early rehearsal, long before any kissing would ensue, the director motioned me aside to share some surprising words.
“Let’s take our time working up to the kisses,†said the director. He lowered his voice a little. “Travis has never kissed a man. He’s straight.†It sounded like a condition.
And in a way, it was. It immediately colored how I acted around him, on stage and off. The play covers our courtship and as we rehearsed I felt another type of courtship happening. Was he watching me, thinking that’s the guy I have to kiss? Was I masculine enough? Did he think I was cute? Did he even care if I was attractive or not? Was he disgusted at the thought of touching me?
Obviously he was comfortable enough to take the role. But to be honest, he was nervous and it showed. I finally got the nerve to say something about it during a break.
“So Travis…†I began. “You’re straight and you’ve never kissed a guy I hear.â€
“Yeah, yeah,†he said. “Sorry about that.†He was actually apologizing for being straight, and I felt like doing the same thing for being gay. “I guess it’s an issue for me but I’ll get more comfortable. I did a nude scene with a gay guy before, but I wasn’t playing gay and we didn’t kiss or anything.â€
This man was on stage naked and found it easier than kissing a guy? I would French kiss the entire cast and crew of “Ugly Betty†before you would find me dangling uncovered on stage.
Bringing it up helped immensely. We not only joked about his “condition,” but we also discussed mine: HIV. It allowed me to engage in some basic HIV prevention education with someone who might not otherwise get candid answers to his concerns. Yes, he knew you couldn’t get it from kissing, but hearing it definitively made him more at ease.
We made a deal that we would start kissing when we no longer needed to hold scripts, and when that time came, I didn’t hesitate. And bless him, neither did he.
It was a brief, perfectly ordinary kiss. And it was done.
Once the occasion had passed I think we both realized it was much ado about nothing. But it got me thinking about why the fact he is straight made the idea of kissing him somehow more… exciting. Why? It may be as simple as wanting what you can not have. And that’s a common desire.
It’s the other implications that bother me. Do I see a straight man as innately more appealing than myself? As better, as a more authentic specimen of Man? That would suggest I think of myself as less than ideal because of my sexuality.
Whatever the reasons, it’s not the only preconceived ideas I had about my straight co-star. I questioned if he could pull off the gay thing. Or would something, like his macho pride or his clueless heterosexuality, prevent his performance from being “authentic.â€
But something happens every performance that surprises me and shames my prejudices. This lumbering straight dude who bristles when I call him “sweetheart†offstage becomes an affectionate, giving lover onstage. His eyes smile at me. He pulls me closer in our bedroom scene. He shows a sensitive, willing and playful vulnerability.
It has been an enlightening experience. I now realize how little faith I had in his talent, much less his humanity. I’m not alone. Half the cast is gay, and almost all of us play multiple roles in various sexual combinations. Between our sincere desire to understand our characters and getting to know each other, the backstage chatter runs somewhere between Dr. Phil and Jerry Springer.
We’ve all learned a lot. I learned that if something got in the way of portraying a gay couple on stage, it wasn’t the straight man’s phobias.
It was mine.
(This posting is from the December, 2007 archives, during a theater stint in my beloved Atlanta, where I will return to live in January. On another note, I thank everyone for your messages of concern and support over my recent breakup; they have sustained me during a difficult time. — Mark)
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PLUS…
I was familiar with studies showing that attractive people tend to get favorable treatment in our society, but did you know that your likeability can affect the quality of your health care? A new posting on Klick Pharm’s blog “Digital Rx” shares a study which finds this to be true. “As an educated and knowledgeable contributor to the process the e-patient must bring forward what he or she knows,” says writer Brad Einarsen, “but it seems that it is important to do it in a collaborative and, for lack of a better term, friendly way.”
This week in pop sleaze reports, Ashton Kutcher is still fending off rumors of a tryst in a hot tub, while his wife Demi Moore showed up at her latest movie premiere looking ghastly; her stick-thin figure reignited concerns about her health and drug use. But among all the salacious reporting was a terrific article by Jennifer Morton of POZ Magazine that carried a simple question: “Dude, Where’s Your Condom?” wanted to know why Ashton, according to the US Magazine story by his one night stand-er Sara Leal, engaged in what we gays call barebacking. “Quite frankly, whatever happens between Ashton Kutcher and Demi Moore is their business,” writes Morton. “But if Leal’s account is true and he is having unprotected sex with strangers, he’s risking a whole lot more than his marriage.”
Tags: acting, culture, gay, hiv, recovery, Recreation, Sexuality
Posted in Anita Mann and Acting Gigs, Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 5 Comments »
Playing the Last Scene of a Marriage
Wednesday, October 12th, 2011
“I’m not in love with you anymore.”
He said this at the dinner table as he made the first cut of his steak, a beautiful ribeye he had grilled to perfection. I put down my own knife and fork and stared at him.
“This isn’t new, or else you haven’t been listening,” he said, a bit wary of my gaze. “You knew I wasn’t happy a year ago. And we’ve just ignored it.” He took a bite and I hated him for it, for having the digestion for this.
I had dropped the butter, that’s how this started. I had been setting the table and I dropped the butter and it made a mess and the dogs were licking it up and he got mad. But it was an accident so I got mad too because he always seemed angry and I told him so and then I provided a litany of complaints about his moodiness and then he sat down to start eating his steak and
“Mark?”
and if I hadn’t dropped the butter we wouldn’t be having this conversation and I could keep pretending we were still in love with one another.
“Mark. I care about you. You know that. But this isn’t working.”
Twice, I wanted to say. Twice this hasn’t worked. In our nine years together, we had tried this twice. The first breakup was the result of my disastrous drug abuse. During our first four years together, I became an increasingly deceitful, outrageous mess. When at long last my pitiful lies were exposed and I checked myself into a drug treatment program, he ended it.
That time, that was the bang. This steak and baked potato dinner was the whimper.
I could feel the emotion swelling inside me and didn’t feel like being the first to cry, so I left the table for the bedroom. As I began heaving deep, guttural sobs I realized I was watching myself, from a distance, like a performance. I saw the way I held my body, arms wrapped tightly in a hug, knees bent from the force of the sobs. What’s my motivation? I found myself wondering, still in the midst of it. Why am I crying? How do I really feel about this?
No sooner had I asked myself these questions, tears streaming, that I posed another. And it was far more manipulative.
How should I play this, exactly?
There were so many options. The shocked and devoted lover. The vindictive injured party. The delicate, recovering addict, shaken to the core by the breakup.
I indulged in this sick game of posturing for only a moment, but it was long enough for me to spot my disease on display. It was my drug addict mindset, always looking for an angle, always trying to deflect blame or skirt responsibility or come out ahead. Despite three years of sobriety, that mindset still enjoys hijacking my emotions.
Mark, I muttered, my face wet with tears, stop it. You crazy fuck.
After the first breakup, he and I didn’t talk much. I moved back to Atlanta and, after some false starts, I finally got a foothold on my recovery. Life opened up again. I created My Fabulous Disease. I rediscovered my joy.
We began speaking tentatively to one another, then more often, and as I approached my first year of sobriety we finally admitted we still loved each other. It was such an unexpected turn of events, and so achingly romantic, that we both followed our hearts completely. I returned to Florida and we resumed our life together, minus my drug use and the dramatic sideshow that went with it.
And yet. And yet.
Within a year, we knew. We tried counseling, which only reopened old wounds and created new resentments. Something unspoken told us to stop the sessions, to not reach the finish line with so much misplaced anger. Instead, we coasted silently for another year, and we looked away.
The postscript had been written, like a paper holding an obituary for a movie star that will probably die soon. They’re just waiting to print it.
And now, despite my philosophical approach to this, my faith in my sobriety and my gratitude for my friends, I have moments when I am crushed with fear. Being alone. Starting over. Dating. And then there’s the HIV.
HIV likes giving a certain zing to relationships. It makes starting one rather tricky, what with the disclosure and the sexual negotiations and the vague fearfulness on either side. It loves ending them as well, but not always in the way you might think.
When HIV treatment drastically improved fifteen years ago, there were people celebrating the world over about their sudden renewed health and vitality. And they often marked the occasion with surprising pronouncements. “I’m going to live another thirty years,” one would muse to the partner across the breakfast table, “and not with you”
Thankfully, my HIV status had no role in the breakup. But it will surely become an issue as I navigate whatever romantic life awaits me.
I dried my face and walked from the bedroom to face him again. I knew what was true, and I held on to it tightly, unwilling to play this scene for effect or advantage. And I finally grasped what an amazing, unlikely gift had been offered to me.
We should have broken up like this the first time, I realized. It should have been this way, and now it can be.
This time, I can do this gracefully.
He was sitting at the sofa and looked up to me, sadly, hopefully, and I sat down across from him. There was a moment of mutual assessment, and we saw the truce in each other’s eyes. Some of the stress melted.
And we began to talk.
Tags: culture, family, gratitude, hiv, recovery, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 31 Comments »
Revisiting ‘The Real Poz Guys of Atlanta’
Tuesday, October 4th, 2011
During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be two video episodes that remain a true highlight of My Fabulous Disease.
What might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiring… or a complete bore.
I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.
We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.
When “You Gotta Have Friends†was posted on TheBody.com on April 22, 2009, it became my most popular episode to date and received a flurry of comments from across the globe. So many people loved seeing a group of men with HIV supporting one another and having that level of honesty. For many viewers, simply seeing friends with HIV living happily was an inspiration.
They loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. Viewers loved the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team†of physicians and family to combat his disease.
As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.
That would happen a year later, when “The Real Poz Guys of Atlanta†was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,†and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.
There’s no doubt that I will do another episode with my friends again sometime, but I wanted to update you on their lives as they are today.
Eric, who famously declined to discuss his status with most people because “I’m Southern. We don’t talk about such things,†reports that his life is getting even healthier. “I quit smoking after 32 years on tobacco, I joined a gym, I got a trainer, and I have a new consciousness on eating,†he says. “At this rate, I’m going to live forever.â€
Eric is also glad that his Mom remains one of his biggest supporters. But that wasn’t meant to be for Craig, who has lost the mother he so lovingly described in our first episode. “I am still recovering from that ongoing blow and the indescribable loss†Craig told me. “She was one of my best friends and it is still hard to really accept life without her in it.†Craig continues his work as a leading voice for gay men of color and HIV prevention.
The grief is something Eric can relate to, considering the loss of his partner Maxwell, about whom he shared in the second episode. “I don’t want to forget him,†Eric says now. “It’s not really sadness, but more a sense of him that stays with me.â€
Antron has stopped writing in the black journals he brought to show and tell, and uses his laptop these days. That will come in handy for the young writer, who has a new project consisting of poems, short stories and rumination entitled Ayo: Lost and Found.
The advice that Craig had for Antron to carefully consider “who he lets into his life, and into his bedroom†hasn’t been lost on Antron, who tells me, “I have a deeper responsibility to value myself more and form a beautiful relationship with me first before pursuing any one.†He is planning to move to New York in January, and maintains a blog for his writing.
The dating life that James was negotiating in both video episodes has slowed, and for some challenging reasons. “I seem to have developed a fear of discussing my HIV and HepB status with potential dates,†he says. “I’m back on interferon for another 48 week treatment.â€
The grueling treatment hasn’t affected his work as a massage therapist so far, but James is vigilant about the potential effect on his recovery from drug addiction. “Friends are so important right now, making sure I don’t isolate and relapse like I did during the last interferon treatment. I am blessed to have some really great friends.â€
And that sentiment is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.
Do you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.
In the meantime, my dear friends, please be well.
Mark
Tags: culture, family, gay, help others, hiv, physician, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 4 Comments »
Finding Support in an e-Patient World
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment – and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?†that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions – cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more – and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values – sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,†such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,†there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televised… on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Mark
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PLUS…
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,†the sperm bank’s director said. “I do not think you chose a redhead, unless the partner — for example, the sterile male — has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.†It ain’t easy being orange.
Tags: aids, culture, help others, hiv, physician, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 14 Comments »
The Twilight of the Redhead
Tuesday, September 20th, 2011
According to family lore, my arrival at birth with a full head of orange hair was met with shock and awe. My five older siblings ran the gamut from blond to dark brown, but they otherwise lacked my peculiar genetic mutation. Although the hospital nursery staff was abuzz with delight, my own family debated whether the color would last while they double checked the identification tags.
It lasted. In fact, the color bloomed like a Van Gogh painting. Before long I would learn the price of being different… and how intense childhood ridicule can be.
Look, it’s Freckle Face Strawberry! Howdy Doody. Bozo. Opie. I didn’t know whether to chop off my hair or hide underneath it. Only little old ladies and a few teachers seemed to appreciate it, but their cooing and stroking – they always needed to touch it, like a lucky charm – never endeared me to the bullies at school.
When puberty hit and the startling orange hue crept further down my torso I was beyond mortified. How could my body play such a cruel joke? Did this adolescent sissy really need another reason to be kicked and taunted? I actually made it through two years of junior high gym class without once taking a shower, usually by fiddling around at my locker – folding and arranging my clothes, feigning trouble with my combination lock – until it was safe to get dressed.
When I came bursting from the closet while in high school, I managed to finally celebrate my red hair along with my sexuality, and reveled in both. I mastered every hair product known to man, blow drying and spraying my head into a Farrah Fawcett extravaganza before a night out at the local gay bar. I discovered the men who loved redheads, and at last, I’d found the ideal purpose for the trait that once humiliated me.
It even became crucial to my vocation, during a brief stint in my twenties in television commercials. Casting directors saw dollar signs on my head, and I became the freckled pitchman for everything from McDonalds to Popeye’s to Barq’s root beer. I treated my hair as a gay Samson might, with the latest gels and shampoos and conditioners, and in return it made me money and got me laid.
Whatever I became through the years, this single aspect of my identity pre-dated everything. Before the writer, before the AIDS activist and the drug addict and the actor and the childhood sissy, I was a redhead. From the very womb.
And then, not quite. Sometime in my thirties, the color began to slowly drain from my scalp. The orange and reds eventually surrendered to a strawberry blond, and even those tones became weaker, like watering down a pitcher of Kool-Aid, as my fiftieth year approached.
It must sound ridiculous, but I felt the loss deeply. We had been through so much together, my red hair and I.
I tried to take heart in having, whatever the color, a full, thick head of healthy hair, guaranteed for life by the family gene pool. That is, until a few months ago, when I stood in the shower and felt strands of hair sliding down my face, in a massive march from my head to the drain. After decades taking HIV medications, I had begun a new treatment regimen and its woeful side effects were ruthless and immediate. Within weeks my hair was thinner, dulled and brittle to the touch.
One of my private, most selfish fears has been realized. I have AIDS Hair.
But while removing clumps from the shower drain is a jolt to my vanity, it isn’t the trauma it might have been. After living with HIV for nearly thirty years, I’ve witnessed how creative it can be in its cruelty, down to the slightest of indignities. The sudden damage to my hair has been worrisome, I’ll admit, but part of me knows that it had long since served its purpose. There is something correct, even poetic, in this twilight of the redhead.
Years ago, as I began rebuilding my life after years of drug addiction, my therapist made a withering observation. “You’ve got no second act, Mark,†he said after one of my self-absorbed ramblings. “You make a nice first impression. But then what? Not much.â€
The work that I’ve done in the years since his pronouncement have taught me the value of more important traits, of lending a hand or paying attention to friends or standing up for our community. And this evolution appears to have swept away one of my most stubborn sources of willful pride.
The last decade has given me the gift of other, more meaningful assets. They lie beneath, away from the gaze of strangers and first impressions.
My best features are now visible only to those who really know me. And they are just beautiful.
Mark
(I hope you’ll consider sharing or re-posting this, now or whenever you run across something here you appreciate. This blog has become a wonderful outlet and voice for me, and I must admit, I love new visitors!)
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PLUS…
Sometimes I blurt out a blog posting that belies my supposed serenity and enlightenment, like the rant I posted on The Bilerico Project (“For God’s Sake, Put Your Shirt On”) about gay guys who can’t seem to keep their clothes on when posting pictures on mainstream social media sites like Facebook. Pecs and traps and biceps? On glorious display. The friends who are beside them in the photo? Cropped out. Guys will even chop off their own faces, as not to distract from the wonder that is their abs (and, as we all know, it’s not the friends you keep, but the abs you maintain). Anyway, I had some fun calling them out about it, and the comments have been kind. Well, except for the twenty-something that claimed I was just jealous I wasn’t sleeping with young hotties. Umm, ouch.
My favorite HIV/AIDS online resource, TheBody.com, has just opened a brand new section on the importance of drug adherence and tips on maintaining your regimen. As part of it, I was asked to produce some short “Day in the Life” videos of people living with HIV and how they fit their pills into their schedule. It was terrific to produce a video about Damaries Cruz of south Florida (right), who shares her misgivings about starting therapy at all, and her collaborative relationship with her physician. And the story of Tree Alexander is an inspiration, as he works to maintain his treatment regimen even during a period of homelessness. The reaction of his large family to his HIV diagnosis was wonderful and astounding: they threw him a “stay healthy” party!
Tags: acting, Aging, culture, family, gay, gratitude, help others, hiv, meth, recovery
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 11 Comments »
Those Doggone Days of Summer
Friday, September 9th, 2011
July and August were almost frantically productive for me, and I’ve followed it by the longest period of, well, nothing, since I began producing this blog. Sorry. Sometimes an HIV guy just needs to lay around and catch up on Top Chef and Real Housewives (God bless you, Bravo).
Hopefully you caught my most recent videos, such as the my examination of activism in “Should AIDS Activists and Pharma Just Get Along?” (complete with red paint foisting), or the video update on my facial filler procedure with Dr. Gerald Pierone (very informative but not for the squeamish), or the helpful tips for saving money with the knowledgeable Jason King (right) of AIDS Healthcare Foundation, whom the camera adores, and about whom I am harboring a jealous resentment (I may be petty but my grammar is pristine). And finally, it’s always ironic when hours of video editing can’t compete with one written posting the comes straight from the heart, like my tribute to Facebook putting my life together again.
But moving on.
If anyone deserves being highlighted in the media for his commitment to HIV prevention, it’s Jim Pickett of the AIDS Foundation of Chicago. In a well-written profile of Jim in the Windy City Times, you can follow his journey from waiter to activist to the man touting rectal microbicides as the next best weapon in our HIV prevention toolbox (I keep finding myself wearing a sticker proclaiming “I have Rectal Pride!” after visiting his booth at conferences). I’ve admired Jim’s work for years and this fun profile explains why. “Expecting everyone to use condoms all the time is ridiculous,” said Jim in the article. “People don’t want to use condoms their whole life. As great as they can be, there are a lot of issues with condoms.”
At the recent 2011 HIV Prevention Conference in Atlanta hosted by the CDC, I was thrilled to meet some of the dedicated members of the HIV/AIDS prevention team. What was even more satisfying was seeing their new prevention campaign targeting black MSM’s (“men who have sex with men,” who don’t always identify as gay). To date, there have been limited data about the factors contributing to the high burden of HIV among black MSM, particularly those who are young – and yet the latest CDC data show that new infections among this group are increasing every year. Fortunately, the CDC is focused strongly on this population, and previewed a major new campaign being developed to increase HIV testing among black MSM – called “Testing Makes Us Stronger†– as the next phase of its ongoing Act Against AIDS campaign.
Thank God I’m clean and sober and alive today. If I was still an active crystal meth addict, I would have missed an astounding recovery conference during Labor Day weekend, which introduced me to some amazing people and strengthened my resolve to keep working to restore and rebuild my life. While I’m always coy about which method of recovery I have chosen (I don’t wish to promote one over another), I will tell you that my camp alter ego Anita Mann (left) wasn’t coy at all, and — get this — she actually sang live during one of the evening’s entertainments. Alas, neither she nor I sing very well, but the message of recovery is clear, and she shares some funny, wise words with the audience after her song. Watch the clip here, but be kind.
The emotion of “We Were Here,” the documentary about the darkest days of the AIDS epidemic and its effect on a group of gay men, can be felt just by reading the reviews, like the rave it just received in The New York Times. I’m almost nervous to see it because I know the trauma and grief it could summon, but I also know I absolutely must. If you can’t find it playing at a festival or cinema near you, then for goodness sake, go directly to Netflix or some other DVD rental site and put it on your list. I often speak of honoring the past — in fact, my favorite video on this site, “Once, When We Were Heroes,” recounts those days and is always worth another look.
My (healthy?) fixation on repairing my facial lipoatrophy (also known as facial wasting) continues, and I am pleased to report that I have begun treatments with Artefill, the “permanent facial filler” product, under the continued care of Dr. Gerald Pierone in Vero Beach, Florida. My past treatment with other products is well documented, but I’ve got to say that these results are well beyond those of Sculptra or Radiesse, truly. The bad news: Artefill is not approved specifically for lipoatrophy, so there are no patient assistance programs for those of us with HIV, making the treatment expensive (in the thousands of dollars). While I don’t expect many of my fellow HIVers can afford it, I felt compelled to share with you the very positive results.
I am the MC for the annual HIV Poz Cruise Retreat, set for this November 5-12 to set sail from Ft Lauderdale. There was such an abundance of fellowship and acceptance last year that I had to do it again. There are sometimes last-minute rooms and cancellations, so if you would like to check it out be sure to visit the web site. You can also watch my video blog from last year, which gives you a great feel for the event and the fun people aboard. Kudos to the dedicated Paul, a long time AIDS advocate and man living with HIV, who has shepherded the cruises for the last nine years.
Some of the most progressive events for building gay male community and preventing HIV are being developed in the Florida panhandle, of all places. On Monday October 10, I’m honored to be participating in the “Our Gay Generation” forum for gay men in Pensecola, which will explore what it means to be a healthy, satisfied gay man today by looking at our past and rededicating ourselves to one another. Sponsored by the Oasis Community Center (and Butch McKay, the formidable force behind the annual Positive Living conference), the forum transcends political issues like gay marriage, and focuses instead on personal satisfaction, community, and the value of friends. Later in the month, the same group will host a ManReach retreat for 40 gay men at a remote retreat center. Contact Oasis for more information on either event.
Whew! Okay, I’m caught up. Thanks for your patience, my good friends, and please be well.
Mark
Tags: aids, culture, drag, gay, gratitude, hiv, lipo, physician, recovery, Sculptra
Posted in Anita Mann and Acting Gigs, Family and Friends, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 8 Comments »
Facebook Put My Life Together Again
Tuesday, August 9th, 2011
Today I accepted the Facebook friend request of someone I knew in high school. We haven’t spoken in more than thirty years. She is married with a load of kids, and God knows why she wants to befriend the scandalous queer who wore knee-high platform boots to the junior dance in our home town of Bossier City, Louisiana.
I did what I always do. I accepted her request and included a link to My Fabulous Disease, labeled as a blog chronicling my life “as an HIV positive gay man in recovery from drug addiction.†Based on past experience, I’m unlikely to hear from her again, and that’s okay.
For most of my life, I’ve kept my social circles far away from one another. The family section never mixed with the gay contingent. These segments were then dissected into those who knew my HIV status and those who did not, which were then divided by whether or not they knew I did comedy drag, and then finally separated into those who knew I did (a lot of) drugs, and those who did not.
When I finally put a stop to my exhausting existence of lies and fakery that accompanied my drug addiction, I knew that in order to live a life of integrity I would need to be the same Mark for every person in my life. No more masks or crafting my personality to suit the audience.
Then I joined Facebook, which allowed me to invite all of these segments into one pool of friendship. My nephew would see my posting about my HIV treatments. My AIDS work colleagues would be treated to videos of me in drag. My friends in recovery would post encouraging words about our shared disease of addiction, and all of this would happily exist on my profile page alongside my nephew’s picture of his baby boy.
Facebook has allowed me to tell the truth again. It has shown me how to be authentic and the same person to everyone in the various corners of my life. Becoming a whole person again cannot be understated. After many years of deceit and hiding out from one group or another, Facebook presented an exercise in transparency that has saved me from the counterfeit personas I relied upon for most of my adult life.
With all the excitement and hype about Google+, I know it’s a format I will never embrace, because it promotes a feature that allows you to separate the people in your life into “circles.” They trumpet this as a real innovation, but it would be a huge step back in my personal development.
I need all the positive structure I can get. Overcoming my addictive nature is still a work in progress, and sometimes my insecurities can still find their way into my Facebook life.
I scan every posted update from hundreds of friends, “liking” with consistent generosity. Anyone who wants to be my friend makes the cut, except for the Eastern bloc hoochie mammas that sometimes come calling. Do they knock on your Facebook door, too? They show far too much boob in their photo and love older men and “hanging out.â€
Men on Facebook who show too much boob, well, they mostly get a pass. But beware of those who are always shirtless, and their friends are always shirtless, and so on. We’re not talking “at the beach†pictures, but holding-the-iPhone-aloft-in-front-of-the-bathroom-mirror type pictures. If you can’t ask a friend to take a shirtless picture of you, I figure you must be up to no good.
My OCD still sneaks out, and it adores Facebook. Someone might post a picture and I look at it and then I start browsing their other pictures and one of them has some interesting guy I don’t know and so I click on his profile and check out his pictures and stare at his many friends whom I do not know and carefully scan their photo album of a very nice dinner at a restaurant I have never heard of in a city I’ve never visited, and then notice some fabulous pictures of a birthday party for an adorable complete stranger and decide to look at the pictures of each and every birthday party guest and then I look up and it’s one o’clock in the fucking morning.
These behaviors are sometimes slow to change. I’m working on it. In the meantime, you can always friend me. What you see is exactly who I am.
“Dirty Facebook Logo” design by Hawk Style Design.
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PLUS…
A little sanity may finally be entering the arena of laws and prosecution of people living with HIV for not disclosing their HIV status to partners (even though, in many cases in which people are in jail, there was no transmission and protection was often used). A blog posting at Housing Works reports that Rep. Barbara Lee (D-CA) is introducing a bill that would require a review of all federal and state laws and policies regarding criminalizing people with HIV. This maddening issue was the topic of my conversation with Sean Strub last year, and it’s about damn time that legislative action (of the sensible variety) is being taken. “Thirty-four states and two U.S. territories have statutes that penalize HIV exposure” says the Housing Works piece. “While their supporters claim these policies protect the public health, evidence shows they do more harm than good.”
Tags: Aging, aids, culture, family, gay, help others, recovery
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 15 Comments »
Dab Garner’s 30 year story of survival.
Tuesday, June 28th, 2011
Storytelling is a crucial part of our culture, and not simply for entertainment value. Sharing our stories can heal our pain, educate others, and help us relive our happiest triumphs.
This video is quite simple, really. One man explains to you what happened to him, from becoming one of the first AIDS patients in San Francisco to his life today in the service of others with HIV. Dab Garner has clearly put things into perspective, and his calm manner shows a man at peace with his fate, his survival, and the ghosts around him.
It’s an amazing story, actually. And considering the importance of passing our history down to younger people, it might not be a bad idea to share this video with someone you know, maybe even someone under 35 years old.
But for now, let’s allow Dab Garner to simply speak for himself.
Thanks for watching, and please be well.
Mark
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PLUS…
The latest volley in the debate among prevention advocates regarding “test and treat” is an interesting article by AIDS Healthcare Foundation consultant James Driscoll. His Washington Post piece, “HIV Treatment can be HIV prevention,” urges more access to medications and better funding for programs like the AIDS Drug Assistance Program. Driscoll is convinced that we can get a handle on the epidemic through increased testing and by treating those who test positive. As he writes: “Science has proven what many at the people doing primary care and others at the forefront of the epidemic have long suspected: HIV treatment is remarkably effective HIV prevention. A recent study from the National Institutes of Health has shown that treating HIV patients with antiviral drugs makes them 96 percent less likely to pass on the virus.”
Tags: aids, culture
Posted in All Other Video Postings, Living with HIV/AIDS, My Fabulous Disease, News | 8 Comments »
Why Are We Still Haunted by the Boys in the Band?
Tuesday, June 21st, 2011
When I was 15 years old, I couldn’t wait to attend a local community theater production of The Boys in the Band. I was intrigued by the play’s dark and mysterious reputation, and had heard that it included a lot of homosexuality (funny how that word isn’t used much anymore). It sounded like exactly what this budding young queer needed: some lessons about the yellow brick road ahead.
I didn’t like what I saw. The characters, a group of gay men celebrating a birthday, were mean and sad and angry with one another. And they were all presented like weird, exotic animals, bitching and crying for the lascivious thrill of a very shocked audience in Shreveport, Louisiana. I left the show feeling terribly disenchanted, fearing my life was destined to be drunken and pathetic.
It was the theatrical opposite of an It Gets Better video.
In the insightful and appropriately melancholy new documentary Making the Boys, the remarkable journey of the groundbreaking play and movie adaptation is discussed by playwright Mart Crowley and a host of gay cultural voices, old and new.
When The Boys in the Band opened off-Broadway in 1968, homosexuality was still classified as a mental illness. The play’s behind-the-scenes peek at gay men in their natural habitat was fascinating to audiences and greeted with enthusiasm from the gay community. Yes, they were maladjusted, self hating fags, but they were our maladjusted, self hating fags.
But in 1969, as the movie version was being filmed only blocks from the Stonewall bar, a riot occurred at the club in response to constant police harassment. The modern gay rights movement was born. Seemingly overnight, New York gays stood up for themselves and demanded some respect – from others and, more importantly, themselves. By the time the film version of The Boys in the Band opened in 1970, the story and its sad characters felt like a politically incorrect relic. We wanted nothing to do with these old, bitter friends anymore. They didn’t reflect our “pride.â€
Opinions about the show vary wildly, as evidenced by the interviews in the documentary. Gay playwright Edward Albee (“Who’s Afraid of Virginia Wolfe?â€) always hated the show and still does. The surviving actors (the theatrical cast all recreated their roles for the film) staunchly defend the humanity of their characters. And younger gays interviewed about the show have no idea what the hell we’re talking about. “I don’t really know about any boys in the band,†states perplexed fashion star Christian Siriano. “Honey, I’ve got dresses to make!â€
The Boys in the Band has become a litmus test for how you view our ability to love ourselves. And those boys continue to reverberate and reflect our attitudes and tribulations as gay men, and that includes the AIDS crisis.
Watching the film today, I’m struck with an odd compulsion. I see these characters laughing and bitching, and I want to reach through the screen and shake them and warn them, to tell them about something coming, something too awful to describe, of a plague they can’t possibly comprehend that is coming to kill them all.
Indeed, at one point in Making the Boys, we are shown photos of the actors, of the men who played these iconic characters we loved and then hated and then, finally, simply accepted. And listed under each of the actors’ names is the year he died of AIDS. 1984. 1985. 1988. On and on it goes, through what appears to be a majority of the cast.
The moment brings about such emotional confusion, of regret and interrupted affections. It’s like hearing of a death of a long lost friend with whom you had a troubled relationship.
Our boys continue to live on through the film, performing their roles on that screen exactly the same way, defiant in their stereotypes, no matter how many times we revisit the movie.
What has changed, for better and for worse, is us.
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PLUS…
You know who would probably have had some choice words to say about this blog posting if he were still alive? Vito Russo, author of the milestone book on gays in film, The Celluloid Closet. On the occasion of the 30th anniversary of the book’s publication, writer Mark Adnum provides a provocative re-examination of the book and the attitude of its author. And to hear Adnum tell it, Russo was a hard-to-please bitch who happened to address the topic of gays in the movies at the right time (although others were there first, according to Adnum). This, from Adnum’s piece: The Celluloid Closet is saturated with frustrated references to “tortured little gay boys,†“homosexual fools,†and “sad-eyed queens.†Russo couldn’t stand “screaming queens†or “doe-eyed, timid faggots,†yet oddly “self-hating gays†really rubbed him the wrong way also. Ouch. So, was Russo a gay activism icon, or just another bitter boy in the band?
HVTN 505, also known as the HIV vaccine clinical trial, continues to struggle to find study participants, and that’s a shame. You know I never miss an opportunity to encourage HIV negative gay men and engage them in the HIV/AIDS arena, and this is the best possible way in which they can make a difference to public health. But… maybe they just aren’t sure what is involved. Well, Kyle Bella outlines his experience as a trial participant in great detail in a recent Bilerico Project posting — from the criteria to the risks to his physical exam — and it’s great information for anyone who might be interested. And be sure to visit Hope Takes Action to browse the list of trial sites.
The ADAP Advocacy Association (aaa+) has a new petition that is easy to access and sign — and it adds your voice to all of us who are horrified about this national disgrace. Most recently, Sir Elton John joined the chorus of advocates demanding that Gov. Rick Scott of Florida do something to alleviate the waiting list (there are more than 3500 patients in Florida alone who are waiting to participate in this program). So… just click here to sign a petition at the Elton John AIDS Foundation, asking that ADAP get the funding it desperately needs.
Tags: acting, Aging, aids, culture, gay, Recreation, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 10 Comments »