Posts Tagged ‘lipo’
Thursday, May 12th, 2016
Daniel Cardone’s essential but relentlessly grim documentary about longtime AIDS survivors, Desert Migration, is fascinated with the bodies of the gay men it profiles.
The film begins with lingering shots of each of the subjects as they begin their day. It follows them through their routine, some of them naked, as they prepare breakfast, shower, shave, meditate. Their faces peer directly at us — a few of them handsome, all of them weathered — in high definition close-up.
We are being asked to study them closely. Look at the skin, the camera is saying, the muscles, the sags, the piercings, the facial wasting, the extended stomachs, the disfigurement, the open wounds. Desert Migration does not want us to turn away from what the gay plague of 30 years ago has wrought in the here and now.
It’s an almost clinical look at the after-effects of a catastrophe, like the documentaries that examine Hiroshima survivors decades after the bomb.
Desert Migration documents the results of a specific pilgrimage that became popular among gay men who were dying of AIDS decades ago: relocating to Palm Springs from major cities in the west, Los Angeles in particular. Once there, their fates and often their fortunes were reversed with the arrival of new medications in the mid 1990s. They experienced the emotional whiplash of renewed health in a world they had settled on leaving, as well as the unexpected financial burden of an extended lifespan.
The film is a crucial addition to the AIDS artistic catalogue because gay community is only now beginning to process and devote resources, artistic and otherwise, to the long term effects of the early AIDS crisis and the walking wounded who survived. That said, director Cordone doesn’t make it easy for us.
There is an unyielding melancholy that permeates the film. The men profiled are almost uniformly isolated or at least wistful. The languid pace of the storytelling is underscored by Gil Talmi’s ethereal original music, a slow pulse of electronica, like a dry desert breeze.
The men all speak of searching for purpose in the desert after having resigned to die there. They come from various levels of money and privilege, including some who outlived their bank accounts, and they are not without the sociological trappings of gay men, meaning, a fixation on self image and the pursuit of sexual or romantic partners.
“In this town, being 60, I’m chicken,” says one. Several of them are battling the aging process mightily with trips to the gym and a regimen of steroids (“All the best looking guys have HIV,” one of the men advises), all while the Palm Springs gay clothing stores mock them with windows filled with slender mannequins, dressed in tiny and unforgiving speedos.
More than one of them debates whether or not they would have reached their current level of spirituality, of self love, if they had not come face to face with their own mortality so young. “I don’t know if my life would have such richness if I wasn’t positive,” one of them admits.
The real star of the film may be Austin Ahlborg’s sumptuous cinematography, which makes the most of the desert landscape, often contrasting the men’s flesh and blood with endless vistas of withered brush and rock.
Throughout the city of Palm Springs are hundreds of acres of modern, silently whirling windmills. The film focuses on them like a fetish, their propellers turning round and round, and the more Desert Migration returns to these monuments the more they appear to be clocks, ticking away, time always turning, slowing for no one. The image repeats itself, in shots of rotating ceiling fans and mechanical sculptures turning this way and that. Time is always moving, and it is unstoppable. Tick Tock.
There is so much in Desert Migration that will be familiar to gay men of a certain age, from the brutal to the romantic. Living life in five year increments, the sudden loss of friends, the confusion, the great love affairs cut short, the lives hijacked by drug addiction after having survived AIDS. There is comfort in identifying with these men, for those who need to, even if the film limits itself to their shared calamity.
After more than an hour of bleak pronouncements – and exactly one shot of someone laughing in the entire film – it becomes clear that filmmaker Cardone is almost exclusively fixated on the tragic aspects of these men’s stories.
It’s easy, maybe even lazy, to reduce AIDS survivors to their profound loss and a struggle for meaning in their later years (which, come to think of it, is a lifelong riddle everyone must contend with, after all).
Where is the joy? A brief dinner party suggests the good humor these men surely must incorporate into their lives, but otherwise filmmaker Cardone sticks to his theme of isolation and distress. “I just think that I’m very tired,” one of the men says, after unsuccessful attempts at connection and romance. “I just don’t know how much longer I even want to fight.”
“The optimistic ones survive,” one of the more privileged men offers, as night descends and he lowers the drapes of his condo, finely appointed with a leather sofa and a gleaming Judy Garland movie poster. Another subject begins the evening by welcoming a sex partner to warm up his sling. Optimism and escapism have their utilities.
Another man takes comfort in his own loneliness and solitude. “You’re a lot more free when you don’t believe much and you don’t have any hope,” he says, in an existential moment that might depress Sartre. “If you’re holding on to hope, then you’ve still got something in the way of enjoying what is.”
After all this, I wished to God that one of these guys was shown performing in musical theater or binge watching RuPaul’s Drag Race.
The film draws to a close in the darkness of the desert, as our day with these men ends. Throughout the mountain passes surrounding Palm Springs, out there in the dark, those windmills are surely still twirling.
They continue to spin, marking time, without regard for the riddles of life or the trials of gay men.
(Visit the Desert Migration site for information on film festival screenings in your area, or for news about the DVD release.)
Tags: Aging, aids, culture, gay, help others, hiv, lipo, recovery, Recreation, serosorting, Sexuality, stigma
Posted in Book Review, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 2 Comments »
Friday, November 6th, 2015
Some years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He could tell my HIV status by my face.
I had The Look. The sunken, wasted cheeks of someone living with HIV. It became a common manifestation in the 1980’s and persisted until the medications that caused the condition, known as facial lipoatrophy, were changed or abandoned for better treatment. (That’s me, right, in 2008.)
Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4t and ddi more than twenty years ago.
I’m one of those long-term survivors. I am proud of my history advocating and living with HIV. But as uncomfortable as it may be to admit, it’s a lot easier to live openly as a person with HIV when you don’t look like it.
When the symptoms began to appear, it meant that the choice to share my status, as an activist or on a personal level, had been taken away. My HIV was written across my face for all to see.
I felt ashamed, and then conflicted. For someone who has been fighting so hard to reduce HIV stigma, what is there to be ashamed of, exactly? Many of the physical signs of HIV treatment – from weight loss to fat redistribution to facial wasting – are worn as battle scars, if not badges of honor, by thousands of people living with HIV. My disease is mirrored in my physicality. What’s wrong with that?
And so, I began a journey that would include multiple visits to a specialist and more than $20,000 worth of various “facial filler” products injected into my face. My biggest advantage was the physician I chose: Dr. Gerald Pierone, arguably the most experienced person in the country on facial fillers and a contributor to TheBody.com. (That’s me, at right, last week.)
Along the way I chronicled my journey through video blogs. They span more than six years, explicitly show the treatments in Dr. Pierone’s office as well as before and after footage, and include a wealth of information and advice about getting facial lipoatrophy treatment, the products involved, and their relative costs.
Here are three of those videos that are probably the most helpful.
A Facial Wasting Update
In this video, below, I chronicle my third visit to Dr. Pierone, who checks up on my progress with temporary fillers Sculptra and Radiesse, and offers his own perspective on my treatment regimen. It is a good introduction to facial lipoatrophy and the treatment available.
I’m Gonna Wipe That AIDS Right Off My Face
Once again I return to Dr. Pierone for a check-up, but this time I inquire about a new, semi-permanent filler now known as BellaFill (formerly Artefill). This video also includes a lot of information about patient assistance programs for the temporary fillers.
Treating My Facial Wasting with Artefill
Switching to this permanent filler, now known as Bellafill, was the best decision I made. No more disappearance of the temporary fillers over time! Although this semi-permanent filler does not have a patient assistance program and can be quite expensive, I must say that the results have been dramatic and long-lasting.
One thing these videos make clear: facial fillers are not the fountain of youth, no matter what The Real Housewives may think. You can clearly see my own aging process through the years in these videos. What they do show, however, is my face as it would have been: aging naturally as if HIV wasting had never been an issue.
If you have any questions, I would encourage you to direct them to Dr. Gerald Pierone in the Ask the Experts forum at TheBody.com. I cannot recommend his expertise highly enough.
And as always, my friends, please be well.
Sunday, March 24th, 2013
I have some amazing friends for you to meet.
Beginning two years ago, TheBody.com asked me to produce a series of videos (“A Day in the Life: Keeping Up With Your HIV Meds”) that would profile a person living with HIV, what their day looks like, and how their medication regimen fits into their daily routine. It was a great opportunity to highlight the everyday lives of people living with HIV, but also to let their spirit and passions come through, and show we are whole people — not simply the virus.
The profile subjects came from all walks of life, in various cities around the United States, and their personalities and interests — their families, their hobbies, and even how they became HIV positive — were all I needed for inspiration.
Below are the eleven videos that have been produced to date for the series (an ongoing feature on TheBody.com and they also have an entire resource center about keeping up with your meds). You can watch the videos here, or follow the link in the title to view the post as it appeared on TheBody. They are each less than ten minutes long; just scroll through them below and find a story that sounds like yours — or better yet, hear what the journey of someone completely different from you is like! Are you ready?
Damaries is from South Florida and could not have been more lovely; we laughed a lot during our day together. Her strength is what impressed me most: she did not come to the decision to start HIV medications lightly. She really did her research before she began a regimen. Filming her story was also a great excuse to hit the beach, since she loves to find her peace and tranquility on that gorgeous sand.
Well, first of all, Tree is adorable. So there’s that. He also has an equally adorable dog, who tried mightily to extend his few minutes of fame by sneaking into the camera shots and barking woefully from the other room. For his part, Tree does a great job explaining how he kept his medication regimen despite multiple moves and even being homeless for a brief period. I really like the Brooklyn montage of Tree’s neighborhood at the beginning of the video.
What an elegant woman Eva is. She was so gracious during our day together and had an almost regal sense of self. She really impressed me. Not only did she make peace with the man who infected her many years ago, she became an advocate for all women living with HIV and devoted quite a lot of time to volunteer work. She’s also an avid traveler — I’ve never seen so many magnets from exotic places on one fridge in my life.
What a hoot! Robert (Bobby) Darrow and I were childhood friends, when we both performed in community theater together in Shreveport, Louisiana (we were both newsboys in Gypsy, for all you musical theater queens). As we grew, he always got the good parts and I ended up working the spotlight — shining it on him — but I’m not bitter, I swear! Producing this video was a great chance to honor my lifelong friend for the activism he has done since the beginning of the AIDS epidemic. And it also allowed me to honor theater itself, and how Bobby is now back in the very place he and I so loved when we were kids. This one is special to me.
You’re going to be blown away by the strength of this woman’s convictions — and the strength of her marriage. Brooke learned she was HIV positive during her pregnancy, and not only was her husband completely supportive, he stood by proudly as Brooke became a visible advocate for woman’s health, the importance of HIV testing, and their personal struggle to afford HIV medications so that their baby would have a better chance of being born without HIV. And speaking of babies, guess who steals the show in this video?
Khafre was one of the most immediately spiritual people I met during this series. He has a very strong sense of faith and a commitment to his own spiritual principles. He was also in the midst of organizing a fund raising bike ride across the country to benefit HIV/AIDS services for people of color, and I admired his dedication and pure energy. The time he devoted each day to prayer and meditation was really lovely to observe and capture in the video.
Petra & Efrain could give the other couples in the series a real run for their money for the title of Most Romantic. You can’t help but grin, watching Efrain describe seeing his future wife for the first time at an AIDS conference, where both were community advocates and both were living with HIV. They not only lift up one another during the frustrations of HIV life, they know how to take time to love and enjoy one another, as their salsa demonstration clearly shows.
Tales of triumph over adversity don’t come more dramatic than the story of Fortunata. Not only is she the single, proud parent of a gorgeous daughter (the apple doesn’t fall far from the beauty tree), she had a devastating accident when she was hit by a car walking across the street — and then had to manage her HIV meds along with a host of others while she recuperated. The fact that she relates all this with such grace was amazing to me. I had so much footage of her simply looking ethereal and lovely, the video could have been twice as long.
Anyone who follows my blog — or HIV/AIDS advocacy — knows what a gift Nelson is to our community. He’s been our own Jack LaLanne of HIV, teaching the importance of health, exercise and nutrition since the beginning of the epidemic — the video blogs he did with me on nutrition (where he cleans out my fridge) and exercise (where we hit the gym together) are hilarious and very informative. And, of course, he has a hot body. It might come as some surprise, then, that he’s very modest when it comes to showing it. I had all sorts of shots and angles I wanted to do that would have shown of his physique, and he politely demurred. He also was always focused in our interview on what would apply to regular folks living with HIV, rather than the more privileged among us. In other words, the man is a class act, with a humility that speaks volumes about his integrity and commitment.
I’ve been watching Robert grow as an HIV/AIDS advocate for several years now, since he began POZIAM social network and radio show while still in his twenties. I had fun doing the fast cuts that open his video because I thought it captured the sense of motion and vitality he has. When I become disheartened, wondering where are the next generation of activists on the scene, I remind myself there are people like Robert.
I’ve always been open on my blog about being in recovery from drug addiction, and George — who survived 27 years of street drugs — and I had an immediate connection. He devotes his life today to service for others, whether it is at an AIDS agency or through various addiction activities. In fact, something he said about his recovery during our interview really made sense to me, and I stopped the camera and shared some of my own story. For nearly thirty minutes he let me pour out some of my own fears and challenges, and listened with the attention of a man who has been there. I think his spirit is well-represented in this video.
To watch George’s video, just follow this link to TheBody. This video is so hot-off-the-presses that I’m not able to share it here yet. Follow the link and hear his story.
I learned a lot of each of these people, and I know they represent a tiny fraction of the courage and daily fortitude displayed by people living with HIV every single day. I really want to thank this group for taking me into their homes and lives and allowing me to share their stories with you.
Thanks for watching, and please be well.
Tags: aids, gay, help others, hiv, lipo, physician, recovery, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »
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)
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.
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 »
Tuesday, August 2nd, 2011
Several years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He knew my HIV status because of the appearance of my face.
I was crestfallen, and felt something close to shame, certainly embarrassment. Why is it that I can produce this blog, proudly march with HIV POSITIVE on my t-shirt in gay parades, and even write a book about coming of age during the dawn of AIDS — but I get upset if someone can tell I’m positive by how I look?
When I choose to disclose, privately or publicly, it’s on my terms. I choose how and when to tell you. I want you to know.
Facial wasting (known as lipodystrophy) takes that choice away. It’s as if the disease is intruding, is taking the upper hand somehow, and worse, taking away my decision about when and to whom I disclose my status. And as much as I want to claim “Most Out Poz Guy Ever,” I don’t like wearing HIV across my face.
Most of us know “the look.” It’s the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications (right). Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I’ll do what I can to wipe that shit off my face.
A few years ago I visited Dr. Gerald Pierone in Vero Beach, Florida (regarded as the leading expert in fillers and one of the Ask the Experts team at TheBody.com), and I documented that first visit and my facial filler treatments in a video blog, Treating My Facial Wasting (left). In that video I focused on my own attitudes — Was I ashamed? Trying to look younger? Simply vain? — and on the procedure process itself. Nearly a year later I revisited Dr. Pierone and got another treatment and documented it in my video blog, A Facial Wasting Update.
In this video episode of My Fabulous Disease, I revisit Dr. Pierone for a new treatment with the facial filler products Sculptra and Radiesse. While I’m there, I learn enough about Artefill, the only FDA approved permanent facial filler, to make me strongly consider the product the next time my face needs fluffing.
This video also focuses on very specific information about the actual costs of facial filler treatment. Both Sculptra and Radiesse have patient assistance programs that significantly reduce the cost of the medication, but you still need to pay the physician to do the procedure, and that price can vary. TheBody.com has a great article that outlines all the facial filler choices and how much they cost.
Tip: don’t allow any street corner vendor (or gym or even doctor office) to inject stuff into your face. Do some research and above all, find a physician who has done this many, many times (over 500 would be a good start). Be a smart shopper and empowered patient and ask about their experience level first.
I hope you find the video helpful and that you aren’t too afraid of needles!
In the meantime, my friends, please be well.
Compelling, sexy, and courageously paced, the short film “SLOW” by filmmaker Darius Clark Monroe is worth your time. In 13 minutes, the film takes two African-American men on a sexy journey in which one of them discovers that the fast way (to sex, to real intimacy) isn’t the only way. If you are working with MSM outreach, this is a wonderful discussion tool. If you appreciate confident film making with a gay theme, this is it. Director Darius Clark Monroe told me he had nothing to add to the film’s message: “everything I wanted to say is expressed in the work…” and indeed it is. The video is NSFW, due only to brief nudity, but otherwise this flick wants to stimulate you mentally much more than by parading naked men around — a lazy tactic employed by most gay films today. I hope you’ll check it out!
Tuesday, March 8th, 2011
When Mark first started My Fabulous Disease, I was pretty sure it was going to directly result in the destruction of humanity.Â One year later, we’re all still here.
I can’t believe I lost that bet.
Myles Helfand, Editor, The Body, The Complete HIV/AIDS Resource
My father always said, “Raise your hand. Ask the stupid questions. Don’t be afraid to make a fool of yourself.” If he isn’t rolling in his grave today, he’s certainly shifting a little, because if there’s one thing I’ve tried to do with my blog it has been to ask basic questions of others — and reveal everything I can of myself. The result has been a really gratifying experience sharing my life as an HIV positive gay man in recovery from addiction.
One year ago, I launched “My Fabulous Disease,” but the site was birthed and nurtured by the talented staff of TheBody.com. I have been contributing to TheBody for more than a decade as a writer, and producing videos for the last several years. For that I am indebted to Bonnie Goldman, the founding editor of The Body, and to the current Community Manager, Olivia Ford.
In this special video episode, I have some fun answering the most frequently asked questions about my videos — and what it has been like exposing myself, figuratively speaking, to all of cyberspace. The bottom line: it has been an honor to reveal, report, and ruminate on life’s challenges and joys as an HIV positive man.
I realize I’m not exactly an expert in the science of HIV or even a lot of the psycho/social issues involved. What I am, though, is curious. So I’ve tried to trust my own instincts and “ask the stupid questions” my Dad was talking about. Whether it was meeting teens at the AIDS conference in Vienna, exercising with fitness expert Nelson Vergel, or interviewing activists at the recent ADAP summit, I let my curiosity guide me.
Sure, I’ve bombed a few times with my videos. It’s been a learning process, and sometimes I misjudged a topic somehow, or just plain create a boring episode. Trust me ” or ask anyone at TheBody, because they know how I worry ” I keep close tabs on the comments and on the number of hits. And I’m constantly second guessing my choices. As much as I want to trust my instincts alone, I can’t help but want to be popular.
The episodes that mean the most to me have been the ones which were the most personal and didn’t even focus on my HIV (like “Facing Change,” about leaving Atlanta to renew a relationship, or “Taking Care of Hal,” about caring for my dying brother), or the ones that were the most practical and instructive (like “A Facial Wasting Update” about my facial filler process, or helping people select the best physician in “Six Tips for Choosing Your HIV Doctor“).
Along the way I have had the honor to meet people working as activists and elected officials and advocates around the world. How can I not be grateful and happy when I meet such smart and dedicated people? I know our HIV/AIDS crisis isn’t rosy and I know people are suffering. I also know without a doubt that we are in committed, loving hands the world over.
Let me leave you with this: we all have a story to tell. It is the story of how HIV/AIDS has affected our lives. Please, my friend, please tell it. Write an article or speak out on World AIDS Day. If you’re more private, maybe you could just explain to a nephew what it was like when you once lost a friend to AIDS. Maybe it is as simple as asking your friends if they have been tested lately, and why it means something important to you.
There are so many people who write me, and they thank me for giving their experience a voice, because they can not speak out. If you are blessed with the opportunity and ability to share your experience, then please join me. There is so much room, so much loving space in this world, for your voice and your story.
You don’t even have to dress in drag when you tell it. It just helps.
Please be well,
“A year of My Fabulous Disease isn’t nearly enough. You’ve had the courage to address publicly, with your words and videos, the stuff a lot of gay men and people with HIV are accustomed to only thinking about.”
Sean Strub, Founder, POZ Magazine
Your blog provides a limpid stream of good advice and optimism for anyone who stumbles into it. Your take on living with HIV is clearly the only one worth having, because you manage to inspire and annoy exactly the right people.
Gus Cairns, Editor, HIV Treatment Update
Happy Birthday to My Fabulous Disease! You’re just what the doctor ordered.
Robert Breining, Founder, POZIAM Social Network
I feel as if My Fabulous Disease is a sister site to “my glamorous HIV” way of life. More importantly, you’ve been able to create much needed dialogue within the community, and provide information with substance. We love you up here in Canada.
Brian Finch, Founder, PositiveLite
Laughter and lightness of heart have made a comeback in my life, thanks to your nutty taste. I have been reminded often that although our common condition is life (and death), it is no longer life OR death.
Rod Rushing, “On The Ten” Treatment Education Network
If Albert Schweitzer and Joan Rivers had a son, it would be you! Healing and outrageous all at once. Keep “curing” us with “My Fabulous Disease.”
Chris Glaser, author, “The Final Deadline: What Death Has Taught Me about Life”
You and your blog are such an inspiration to others whether they are infected with HIV or someone who is still negative. We are also proud to have you as one of our Dab the AIDS Bear’s Ambassadors of Hope!
Dab Garner, Founder, Dab the AIDS Bear Project
Happy Birthday! You are doing such a great job at portraying the face, humor and humanity behind a terrible disease that will continue to proliferate in our community if people like you don’t continue to remind the rest of us that it still exists.
Zack Rosen, Editor, The New Gay
Tags: Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, Radiesse, recovery, Recreation, research, serosorting, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 14 Comments »
Tuesday, February 22nd, 2011
“The suspense is terrible. I hope it will last.”
— Oscar Wilde, The Importance of Being Ernest
How was this judged, exactly? I was afraid you might ask. Not on the number of hits or any formal voting procedure. I relied purely on feedback received through the year and from posted comments, but mostly, umm, I picked my favorites. So there.
presented in reverse order
#10. The Wisdom of Youth at AIDS2010. My skills (and physical stamina) were sorely tested when TheBody.com sent me to Vienna for the 2010 International AIDS Conference. Every day was a sprint around the massive conference center in search of stories that inspired or amused me. In this episode, I was blown away by a collection of teenage (!) activists from around the globe who gave a press conference and then chatted with me (try being nineteen and an HIV advocate in Afghanistan). Then I interviewed an actual muppet with No Strings, a program that uses puppetry to communicate with African children about AIDS, transmission, and grief. Awesome.
#9. The Real Poz Guys of Atlanta. Nothing has been more important to my long term sanity and well-being than the support of friends, so I decided to let you meet a few of them in this ongoing series of videos. In this, our second get together, my friends Craig, James, Antron and Eric and I (all of us are living with HIV) bake brownies — recipe included in the post! — and dish about our HIV, doctors, families and love lives. To top it off we all engage in some surprisingly moving “show ‘n tell,” by bringing things to our dinner that represent something about life with HIV. If you need to feel the love of friends right now, check this out.
#8. Locker 32, your room is ready… to be hosed and sanitized. Okay, so here’s my bawdy comedy side, in a farewell essay to the gay baths. In my former, youthful and/or drug fueled days, I was a staple in such establishments, and the value of how one looked sauntering about in a towel was a misguided priority that, frankly, I’m still working to shake from my world view. But there’s no such depth in this funny essay, just a final look at the baths on my very last visit, or as the piece begins, “the last time I went to the baths… I stepped in poop.” Hold your nose, and enjoy!
#7. The Price is Right, thirty years after coming on down. “When I was 19 years old, I vacationed to Los Angeles and won a car on The Price is Right.” So begins my book “A Place Like This,” my first-person account of my years in Hollywood in the 1980’s. I use the game show story to reflect on the young man I was and what dreams I had, while AIDS looms in the near distance ready to wreck the plans of a generation. I’ve always liked this as its own essay, though, and thought it would be fun to include the actual footage of my winning the car, so the reader can watch the little story come to life.
#6. My T-cells Could Use a Facelift. I’ve probably posted the heart and soul right out of this poor video, using it more than once this year, but it remains a favorite of mine because it strikes the heart of my issues as a gay man, a man with HIV, and an aging one at that. We’re the guys that can still remember being youthful but we just don’t quite hack it in the cruise clubs anymore. I know I shouldn’t miss it, and yet… The video also lets me show off my butt pads and discuss my not-so-subtle tactics to avoid growing up. Maturity is hard won in my household, my friends.
#5. A Facial Wasting Update. This is when I realized the real potential of my little digital camera: when Dr. Gerald Pierone agreed to let me film our consultation about my facial wasting (lipoatrophy), and the procedure to remedy it. This episode is actually our second video together, when I returned for a follow-up treatment — it reviews footage from the first visit but also gives a more accurate look at the treatment results. At the end of the first episode, I was so pleased with my new face that I shot my closing with such bright light I looked like I was voguing in a Madonna video. I don’t make that mistake again.
#4. I am the man my father built. Why are there passages in our life that we return to, again and again, those milestones that shape us and serve as references points our entire lives? Camping in the woods would seem an unmemorable scenario for a young gay boy like me (behold my pubescent self, right, in repose). Dad wasn’t trying to butch me up, he simply reveled in being different, like pitching a clear plastic tent when all the other fathers and sons on the campout had normal ones. But every time dad instilled in me the value of being different (“that’s the beauty of it,” was his most common exclamation), he was preparing his son for the world in a way he never imagined. A love letter to my dad, and I hope you’ll read it.
#3. Examining death, including the one I caused. To be honest, I thought I was doing my ex-partner Chris Glaser a favor by reviewing his most recent book. But that blithe arrogance evaporated when I read his elegant book about death, “The Final Deadline.” Chris devotes chapters to manners of death and their lessons for the living, and to my surprise includes one about the death of our relationship and there, suddenly and in black and white, was the wreckage of a romance, and the crushing hurt I had caused when I chose my escalating drug addiction over my partner. Reading this book would enlighten anyone, but no one more than me. Chris’ capacity for forgiveness and finding teachable moments is more beautifully rendered in his book than anything I might conjure.
#2. Once, When We Were Heroes. Another one I’ve posted to death — the video version has been on my main page for ages — but it’s as if I’m afraid I’ll never write something quite like it again. It sprang from my observations about so many of us that lived through the horror of the 1980’s and how mundane our lives are today. So many of us were called upon to do courageous things, or withstand terrible grief, and today we’re shopping at Macy’s and planning brunch. Which is a miracle and perfectly allowed, of course. It just makes me realize that you can never know what the man on the treadmill at the gym might have once withstood, or how resilient our own spirits are, when we once thought they might never survive.
#1. The Day Larry Kramer Dissed Me. Pure whimsy, no doubt about it, and the funniest part of this fictional account of a disastrous trip to the mall with Larry Kramer was how many people didn’t know I made the damn thing up. Not until they read the footnote. Reactions were all over the place: how dare I ridicule an icon, they wanted to know. I would be dead if it were not for him, they wailed. And “this is hilarious, please do HRC next!” I have not had the honor of meeting Larry Kramer but idolize him as an activist and as a writer. And if my “six degrees of Larry Kramer” friends are telling the truth, the man himself got the joke and liked it (and even left a posted comment for all to see).
Honorable mentions: My provocative chat with activist and POZ Magazine founder Sean Strub, “Five Things About HIV They’re Not Telling You,” had prevention advocates either impressed or aghast, and that’s a good thing. My favorite little video was the Gay Pride PSA That Will Never Air, which begins with funny stories before it punches you in the gut with a message about drug addiction. And speaking of addiction, there’s a precious vision of recovery is in the simple essay “A Dance to an Atlanta Night,” in which I enjoy some simple pleasures with friends who have seen me at my worst.
I feel like I’m hitting my stride. Thanks to all of you for your words of encouragement, and I mean that. This has been an awesome adventure because of you. As always, please be well.
I hope you will consider “sharing” this via the buttons below with anyone who might enjoy an introduction to the blog. I love reaching new readers. Thanks.
Tags: A Place Like This, acting, Aging, aids, barebacking, culture, drag, family, gay, help others, hiv, lipo, meth, physician, politics, recovery, Recreation, serosorting, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 2 Comments »
Tuesday, February 15th, 2011
Here is a brief description and link to the entire collection of My Fabulous Disease videos, stretching back to the premiere episode in 2008. The videos have been viewed in classrooms, at conferences and in support groups, and you’re welcome to re-post and share with proper credit.
This list is always available to you for browsing — just look under Categories on your right for “A LIST OF ALL “MFD” VIDEOS.”
The 2015 United States Conference on AIDS, September 15, 2015. The video contains three AIDS czars, one stripper pole, a ferocious batch of trans protestors, and more inspirational front-line workers than you can shake a stick at. My congratulations to the National Minority AIDS Council for their famously creative production of the weekend. The spirit shared by the advocates, healthcare providers, and organizations who convened for USCA was electrifying, and just the boost many of us need to keep our energy up and our dedication renewed. Oh, and special thanks to the CDC’s Act Against AIDS campaign for letting me take over their Instagram page during the conference, and to Gilead Sciences for sponsoring the “Mind the Gap” session on social media and inviting me to host it.
Spilling My Guts at the ACT UP NYC Long Term Survivors Forum, April 15, 2015. When it came my time to speak, to offer my personal perspective on a lifetime with HIV, I abandoned my note cards and the story came pouring out of me. My voice quivered the entire time. I cried and told my secrets and my shame and my grief in ways I have never revealed on my blog. The room responded with warmth and acceptance. Afterwards, iconic ACT UP members whose names I recognized greeted me and thanked me (like Jack Mackenroth, at right). It was one of the most nerve-wracking and proudest days of my life.
This Gay Teenage Couple Defies HIV Stereotypes, November 12, 2014. HIV continues to devastate the South with alarming infection rates. One might assume that in the most stubborn of Red States, gay men have lives of rejection and misery, that they are apathetic about HIV, that they are ignorant about seeking treatment or accessing prevention strategies such as pre-exposure prophylaxis (PrEP), or that living as a gay teenager brings so many challenges that HIV falls far down the ladder of priorities. That is clearly not the case for Chanse or for his boyfriend Josh, also 19 years old, who both swept into action when Chanse tested positive and, in another room of the agency, Josh learned he was HIV negative.
Methtacular! The Addictive Musical Comedy, September 2, 2014. It is no secret that I am a crystal meth addict in recovery. But writing about it, at least in the often humorous style for which my blog is known, escapes me. My process of recovery feels too precious, too personal, and yes, even too delicate. So it was with some skepticism that I recently attended the Chicago premiere of Methtacular!, an autobiographical one-man show in which the star leads us through his descent into drug addiction through music, comedy, and even a game show segment using audience members as contestants. I laughed with bittersweet recognition and sat amazed at the talents of writer and performer Steven Strafford.
AIDS2014: The Complete Video Blog Collection. July 29, 2014. What an amazing week! I was commissioned by TheBody.com (where My Fabulous Disease was born) to create video content from the international AIDS conference (AIDS2014) in Melbourne, Australia, and my coverage leaves the more clinical news to those better qualified. Instead, I focused on the sights, people, and issues swirling around the event. Meet a drag superhero promoting prevention, or attend the march and candlelight vigil, or meet a man from Nigeria who risks jail every day simply by providing services to gay men. The videos are stuffed with stories like these, and they certainly put things in perspective in my own life. Check them out, Mate!
The Juicy SILENCE=DEATH Stories You Never Knew. June 29, 2014. How could I attend a conference alongside one of the co-creators of the iconic SILENCE=DEATH artwork and not get all the juicy details from him about the creation of that image, and all the other artwork we know so well? Avram Finkelstein provides some fascinating behind-the-scenes commentary on the personal and activism struggles that were going on in the very center of ACT UP and his own artistic collective, Gran Fury. Required viewing for anyone interested in our history (his story of the gay porn image of two sailors will leave you speechless).
The Powerful ‘HIV is Not a Crime’ Conference. June 11, 2014. This video takes you to the first-ever national conference on HIV criminalization, HIV is Not A Crime, held in Grinnell, Iowa. The conference was definitely work, as advocates from around the country met to strategize how best to reform State laws that have little regard for the modern realities of HIV. In fact, there are people serving sentences right now for “exposing” others to HIV for actions that defy science as we know it, such as biting or spitting. This video review of the conference will introduce you to the issue of HIV criminalization, the advocates fighting it, and some of those who have served jail time under the statutes.
NEGATIVE: HIV Negative Gay Men Speaking for Themselves. I primarily write from the perspective of those of us living with HIV, which is important of course. But sometimes I feel as if negative gay men in particular find it difficult to express their concerns without being immediately attacked or shushed. So, I invited four very different negative guys to “talk to me like you talk to your friends when no one is around.” Their startling honesty paints a picture of a community dealing with fear, confusion, and skepticism over what to believe and what their risks are. This candid video (the language is NSFW) doesn’t speak for everyone, but you’re going to relate to one of these guys — and hopefully feel empathy for them all.
Mark S. King at the International Conference on Stigma. Still riding the wave of notoriety from writing a cover story about HIV stigma for POZ Magazine, I squeezed another drop of selfploitation with this appearance at this important conference in Washington, DC. Seriously, it did give a chance to reflect on the huge response to that article, and say some things about how at least some of my thinking on the topic had changed. That and, as I tell the conference audience, “I’m here to gay up this event a little bit.” Make that a lot.
Aboard The 2013 HIV Cruise Retreat (“The Poz Cruise”). Ah, it’s that time of year again. And for nearly 300 vacationing people with HIV and our friends, that meant a trip on the high seas together. Why would so many people devote time and money to this event? Because a lot of our group come from smaller communities where they have a bigger challenge making friends and disclosing their status. For seven days, WE are in the majority, and there’s such freedom in that. Yes, the event is not cheap (starting around $599 for seven days), but as this video shows, the love of this group for one is another is priceless.
Gay Parade Tips from a Poz Grand Marshal. There’s no way I was going to be honored as Grand Marshal of the Atlanta Pride Parade and not share it with those living with HIV and our allies. So, I invited some along! We had a blast, and you know that while I was waving to the crowd I also had my trusty video camera ready! This one is for you, if you are living with HIV, because as far as I’m concerned, we all deserve a parade. This video is my account of the exciting, validating day in the Atlanta sun.
Two Minutes of Advice for Those Testing Positive. I produced this as part of the “You’ve Got This” campaign, in which people with HIV offer their pearls of wisdom to those who just tested positive. So, of course, I felt the topic could benefit from a little humor and joyfulness (should becoming a drag queen be one of your first tasks after you test?). In the end, just projecting a life of engagement and happiness means a lot to someone facing a new diagnosis, and that was my primary purpose here — but the video does manage to include sound advice.
The Inspiring Advocates of the 2013 U.S. Conference on AIDS September 16, 2013. In my video blog recap of the annual conference sponsored by the National Minority AIDS Council, you’ll meet as lot of people addressing HIV stigma in various ways. You’re also going to meet advocates of both the celebrity variety (Mondo Guerra of Project Runway (right), and photographer Duane Cramer) and those doing the work on the ground in communities large and small. As usual, it was the people and their personal commitment that caught my attention, and this recap is a salute to their efforts.
The Real Poz Guys of Atlanta III Sepotember 2, 2013. Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know. Nearly four years ago, I invited four friends living with HIV over to my place for a night of devouring brownies and sharing secrets, while my friend Charles captured it on video. The result was “You Gotta Have Friends,” the first episode of what would be renamed “The Real Poz Guys of Atlanta.” The second episode was posted more than a year later (you can see a recap and both previous episodes here). And now, episode three.
A Totally Gay Tour of Congressional Cemetery July 16, 2013 You haven’t lived until you have hosted a game show in a cemetery. There I was, laughing and being silly while standing directly over the remains of more than 25,000 of the dearly departed. And I was doing it with the authorities. When I asked the president of Congressional Cemetery, Paul Williams, if he would play a game with me on camera for this blog, he took it all in stride. Because my blog has always been about living joyfully with HIV, perhaps this video brings that philosophy to its logical conclusion: accepting the passing of our lives with gratitude and happiness.
A Cure for AIDS: The HIV Activists Turning Hope into Action June 24, 2013. They are cautiously optimistic. But their faith is contagious, if you’ll pardon the choice of words. And they also know that that we got protease inhibitors because of the same kind of tireless community efforts that they are displaying now. In fact, one can easily connect the dots from the activists shown in the Oscar nominated documentary How to Survive a Plague to this current crop of treatment advocates who are trying to take HIV research across the finish line.
The New National Voice of People with HIV is… May 24, 2013. With the demise of The National Association of People with AIDS (NAPWA) earlier this year, there’s some jockeying for position among other national groups. Who will win the crown of “the new national voice of people with HIV?” A recent public forum in Washington, DC, tried to begin an assessment of the national situation by asking people living with HIV what issues were most important to them. The most compelling minutes of the event were courtesy of the sheer audacity of former administrators from NAPWA who made a pitch for their new HIV advocacy venture, Pozitively Healthy. In this video I take them to task and even provide a wry “dramatic reenactment” of their organizational negotiations.
2013 Marriage Equality Rally at the Supreme Court March 26, 2013. I was stunned by the emotions — pride, sadness, and anger — that spilled out onto the streets of Washington, DC, during this marriage equality rally, from both sides of the issue. And for some reason, the old tune “Classical Gas” kept spinning in my head as I shot the footage. When the anti-gay marriage folks arrived with a marching band — oh, those trumpets! — I knew I had to make a music video of the song and just prayed that YouTube wouldn’t block me from using it. I was in luck, and so are you, because this has become one of my favorite videos to date. Enjoy.
Behind the Scenes of the Video Series “A Day in the Life.” March 24, 2013. Beginning two years ago, TheBody.com asked me to produce a series of videos (“A Day in the Life: Keeping Up With Your HIV Meds”) that would profile a person living with HIV, what their day looks like, and how their medication regimen fits into their daily routine. It was a great opportunity to highlight the everyday lives of people living with HIV, but also to let their spirit and passions come through, and show we are whole people — not simply the virus. They are each less than ten minutes long; just scroll through them below and find a story that sounds like yours — or better yet, hear what the journey of someone completely different from you is like! Are you ready?
HIV and Gay Media: The Vanishing Virus February 27, 2013. What 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 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. I asked them about their own coverage of HIV, and how best to re-engage our community.
Treating My Facial Wasting with Artefill January 24, 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. Facial fillers remain one of the topics about which I receive the most emails, and this video blog should answer most all of your questions.
The Night Don Lemon Hugged Me December 13, 2012. 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. 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. 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.
On Board the 2012 HIV Cruise Retreat November 15, 2012. Sailing from Ft Lauderdale to various islands of the Caribbean, the Cruise Retreat included more than 200 gay men, women and our supporters. 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. 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.
Is There Pride in Being HIV Positive? October 30, 2012. During the Atlanta Gay Pride Parade, it struck me how many contingents there were of people from all segments of the LGBT community celebrating their pride. And then it struck me how absent the HIV/AIDS organizations were, or at least people living with HIV themselves. What, then, is the intersection of HIV and Pride? Is there pride in being HIV positive? I posed this question to various people attending the parade and festival, and came away with some very surprising answers.
AIDS2012: The Complete Video Blog Collection. My adventures at the international AIDS conference in Washington, DC, are all documented here, in a review of the six video blogs (!) I produced during the week. The videos are funny, dramatic (the March to End AIDS may be my favorite), and feature both HIV/AIDS “stars” and the amazing people doing the work on the ground who never can get enough credit. Includes Jack Mackenroth (“Project Runway” and POZ Army), Jamar Rogers (“The Voice”), Daniel Bauer (“Beyond Belief”), Dr. “Johno” Mermin of CDC, Sean Strub (The SERO Project), Edwin Bernard (HIV Justice Network), protesters, drag queens, sex workers, and so much more!
HIV Criminalization Face-Off: One Poz Man and His Accuser. February 7, 2012. What if you could witness a face-to-face confrontation between a man living with HIV and the sex partner accusing him of not revealing his status? Wouldn’t you like to be a fly on that wall? The fireworks could be mighty, as emotions raged between the furious accuser and the positive person trying to defend his actions. What might that meeting look like, exactly? In this video, you’re going to find out. I was proud of how this video turned out, and gratified by advocates who considered it a solid and well balanced look at this controversial issue.
The ‘My Fabulous Disease’ Holiday Spectacular! December 13, 2011. That’s right folks, this is fun for the whole family! In fact, MY whole family gets in the act, as we share holiday cheer, get a lesson on Christmas cookies from Mom, and even get a visit from Santa. When we filmed this video, I told my family that there were people watching my blog who didn’t have a close relationship with their family, and discussing HIV was out of the question. They took this to heart, as you will see, and their compassion shines through. Merry merry!
The Long Road Home from Relapse. November 29, 2011. Okay, this isn’t a video but I didn’t want you to miss it so I’m making an exception. This is a honest account of my drug relapse and it quickly became the most viewed blog posting in the history of this site. While my perception of the reasons and fallout from my relapse continue to evolve, this is how I felt at that time. I hope it might help others — either to give you a sense of addictive thinking, or remind you why you never, ever want to go back to using.
Sailing the 2011 HIV Cruise Retreat. November 15, 2011. I realize how fortunate I am. So many of us are not able to take the time or devote the money for a cruise like this. It’s my hope that this video blog will inspire you to seek community, in whatever way you can, and never forget that a sense of humor sure does help the journey. And what a journey this 7-day Caribbean cruise was! There was plenty of social events, educational workshops, excursions to the shores of various islands, and let us now forget the parties — The Mad Hatter Party was worth the fare alone, but then The Blue Party, hosted by my comic alter ego Anita Mann, reached new levels of madness and joy. You can get more info about the event at www.HIVCruise.com. The event welcomes men and women, gay and straight, and they are a truly inspiring, fun filled group.
Divorce, Stress, HIV… and no jokes. November 3, 2011. This is a rather personal blog video, there’s no doubt about that. I was even a little apprehensive because it doesn’t offer the usual helpful tips or the “entertainment value” of my other videos. But one of my problems has always been trying to be the life of the party when I’m not feeling it. So I was relieved and pleased that there was so much love for this video, in which I sit down with my friend (and a therapist) David Fawcett to discuss divorce, loss, HIV, and what to do when life isn’t all that damn fabulous. This is a different Mark than you might be used to, unplugged and exposed.
Finding Support in an e-Patient World. September 26, 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. In this video blog from the e-Patient Connections conference, you get to meet some of the marvelous people who are leading the charge. And guess what? It turns out that there are people living with a wide variety of conditions who are online and advocating for themselves and others. This moving and funny video will teach you something.
7 Ways to Save Money on Your Meds. August 16, 2011. With all the doctor appointments and wellness activities we engage in, living with HIV/AIDS can be a full-time job. And the truth is, it doesn’t pay very well. We’ve all been feeling the pinch of tough economic times. So I hope you’ll find some savings in this video blog, “7 Ways to Save Money on Meds,” featuring Jason King, a patient advocate for the AIDS Healthcare Foundation. Jason has some tips that your pharmacist may not be telling you.
I’m Gonna Wipe That AIDS Right Off of My Face. August 2, 2011. Most of us know “the look,” and I’ve started to get it. It’s the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications. Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I’ll do what I can to wipe that shit off my face. In this video, I revisit Dr. Gerald Pierone for a treatment of Radiesse and Sculptra, and get information about the more permanent facial filler, Artefill.
The Entire 2011 ADAP Conference in Nine Minutes! July 19, 2011. The 2011 ADAP Advocacy Association (aaa+) conference held July 5-7 in Washington, DC, was bursting with spirit. Dozens of advocates from across the country met for three days of workshops and speakers, and in this video blog, you’ll see the entire conference boiled down to only nine minutes. I’m the cliff notes of HIV/AIDS events! The AIDS Drug Assistance Program waiting list continues to grow on a daily basis, denying patients the very medications that can keep them alive. This national disgrace deserves our attention and our phone calls to our elected officials, urging them not to forget the most vulnerable among us.
Should AIDS Activists and Pharma just get along? July 12, 2011. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a “resource” for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients to “care.” This video on treatment activism mulls over the conflict, provides some historical context, and keeps the red spray paint at hand, in case the activism needs to go “old school.” This became the most “shared” blog posting of mine to date, and very quickly, too. I think people responded to the mix of education and edgy advocacy.
Dab Garner’s 30 Year Story of Survival. June 28, 2011. 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.
Vacations and Retreats for People with HIV/AIDS. April 28, 2011. Summer is approaching and vacation plans are being made ” but have you ever considered a retreat or getaway with other people living with HIV/AIDS? It might sound odd to seek out a vacation event just for people with HIV. For me, my status is only a part of who I am, and I’ve gotten pretty good at disclosing when I need to. But for many of us it’s tough getting past that hurdle. So joining a group of others living with HIV might be a fun solution if you’re looking to make friends with other people living with HIV and build your support network.
The Hard Facts on Erectile Dysfunction: Pills, Pumps and Prosthetics. April 6, 2011. My friend and HIV fitness author Nelson Vergel (“Testosterone: A Man’s Guide”) returns for another visit, this time to discuss erectile dysfunction and HIV, including the treatments available and issues specific to those of us with HIV. He also gives detailed information on the use of testosterone replacement therapy. Quite an informative video.
A Special One-Year Anniversary Posting! March 8, 2011. After weeks of teasing you with announcements and Top Ten listing, I finally put an end to milking the occasion with this, a special video celebrating one year of blogging on my site. This is lightweight, no doubt, but I do answer the most popular questions I get about myself and the blog, and it gives me a great opportunity to thank you, my readers and watchers. It has indeed been a great first year, and this video demonstrates my gratitude.
Touring an HIV+ Gay Sex Club. Plus: The Porn Stars that Got Away. March 1, 2011. I revisit a video tour of a public sex venue from last year and catch up with the host of “Poz4Play,” a monthly gathering of HIV positive gay men. Along the way we discuss serosorting (limiting partners to those who share your HIV status) and if these parties offer real prevention or a false sense of security from other STD’s. Meanwhile, I share what happens when you get “too real” in your line of questioning with porn stars (hint: they stop returning your e-mails).
The Hilarious Idiocy of Anonymous Gay Sex. February 7, 2011. When someone brought this YouTube video to my attention, I laughed out loud at its amazing recreation of an online hookup between two gay men, and the level of stupidity that is often involved when negotiating sex. The person who created this video prefers the anonymity of cyberspace, but I think he deserves a medal for perfectly demonstrating what we’re up against when it comes to making intelligent sexual choices.
Hitting the Gym with HIV Fitness Expert Nelson Vergel. February 3, 2011. Fitness expert and author Nelson Vergel gets my growing waistline to the gym for a lesson in aerobic activity and weight training and the benefits and risks to those with HIV. Part Two in an ongoing series of fitness and nutrition videos with Nelson.
AIDS Activism 101: Steps to end the ADAP crisis. January 31, 2011. An interesting and practical look at the steps to take to have a voice with your elected official, by getting the activists at the 2011 ADAP Summit to cle4arly explain what was happening with the program, and then easy directions to contact your elected official about this (or any!) advocacy issue.
Five Things About HIV (They’re Not Telling You). January 18, 2011. Activist and POZ Magazine Founder Sean Strub stops by for a game of ping pong and then a very provocative discussion of why public health campaigns keep getting it wrong in terms of messages to gay men, and some things that gay men should know that have not been widely reported.
HIV Fitness Stud Nelson Vergel Raids My Fridge. January 11, 2011. The first in a series of fitness and nutrition videos with HIV fitness expert Nelson Vergel. In this video, Nelson raids my fridge and gives simple, practical tips on eating right, mysterious “diet” labels, and the importance of proper pooping!
Recovering Joy. December 14, 2010. Why include a video of my performing in drag at a Christmas benefit for people in recovery from drugs and alcohol? Because it’s funny. And because I wasn’t very funny when i was an active addict, and there are a lot of wise messages contained in this very funny rendition of “Twas the Night Before Christmas,” as read by my alter ego, Ms. Anita Mann.
Once, When We Were Heroes. November 28, 2010. This is an essay that won a 2008 award from the National Lesbian and Gay Journalism Association, for best written piece of the year, but I created this video version because I wanted another way of sharing its message. It potently describes the early days of the AIDS epidemic, and draws a bittersweet line between life than, and now. The best of my work.
My T-cells could use a facelift. November 11, 2010. This is the video that might be my personal favorite because it is funny and speaks to my issues of aging and regret and selfishly trying to hold on to old behaviors. Watch as, through video editing magic, my mature self and my young, selfish self argue about the effects of aging in a gay culture. Funny and wise, I think.
My Video Report aboard the HIV Cruise Retreat. November 1, 2010. During my maiden voyage as M.C. for the HIV Cruise Retreat, I didn’t know what to expect. But as you’ll see in this rollicking video diary, our group bonded and laughed and learned. Absent were so many of the social tensions that usually follow a group of largely gay men around. We all just cared for one another and had a terrific time. I hope I can return every year!
The Price is Right, 30 Years after Coming on Down. October 18, 2010. Would you believe I won a car on the Price is Right, back in 1980 when Bob Barker still had dark hair, and I have the video to prove it? I sure do! You’ll watch the video and get to read an essay about the entire experience, and how it haunted me for years, when the advent of AIDS ruined all those wonderful plans I had told Bob Barker I was making for my life.
In Praise of HIV Negative Gay Men. October 13, 2010. Oh man, did this one ever get me into trouble. Here I thought I had such a great idea, doing a video to praise an encourage HIV negative gay men for staying that way, and acknowledging the fact that, in many ways, their struggles without HIV are harder than mine with it. Oops… this video offended just about everyone, mostly for a perceived sarcasm in my delivery. I’ll let you watch and decide for yourself.
The 2010 HRC Dinner (in under four minutes!). October 10, 2010. I attended this national dinner for the Human Rights Campaign in Washington, DC, and had fun teasing the event by presenting the bloated evening in less than four minutes. My snarkiness was rewarded — it has become my most-watched video because, as it turns out, there appear to be quite a lot of people who like people being snarky about HRC. Just sayin’.
Fighting Back Hard Against Bullying. October 5, 2010. This essay about gay bullying includes the video “It Gets Better with the King Brothers,” the video I made with my (also gay) brother Dick. We had no idea it would become one of the most watched videos for the project, and it now slated to be included in the “It Gets Better” book out in March, 2011. People seemed to like our brotherly love!
Condoms & Bareback Sex at the Gay Summit. (September 20, 2010.) As gay sexual advocates met at the annual Gay Men’s Health Summit in Ft Lauderdale, there was an assortment of workshops and speakers focused on a golden oldie: promoting condom usage among gay men and how to address barebacking. Included is an interview with activist (and one-time bareback poster boy) Tony Valenzuela.
My Forbidden Love for Gay Monsters. September 28, 2010. This essay on my crush on Quentin Collins from Dark Shadows, and love for horror movies, gave me a chance to show off a video I produced for a stage production of Night of the Living Dead. I had such a blast making it!
HIV Stigma (and my lover Jack) at USCA. September 14, 2010. At the United States Conference on AIDS held in Orlando, I learned about a new project to address HIV stigma (which seems to be growing, not shrinking) and the reasons why. I also provide a tour of the conference itself and get some designs lessons from Jack Mackenroth, the Project Runway hunk who is HIV positive and is behind a public awareness campaign.
Sex While HIV Positive: The New Criminals. September 6, 2010. This video was significant to me for two big reasons: making it introduced me to the heroic activist Sean Strub for the first time in person, and it gave Sean a chance to very clearly outline a misunderstood topic. At a time when treatment successes and public acceptance of HIV/AIDS has made strides, why are there horrific laws that not only unfairly fault those with HIV, but are based on bad science?
Does the Gay Men’s Health Summit make me look fat? August 26, 2010. Also while at the Gay Men’s Summit in Ft Lauderdale, I attended a workshop on body image and gay men — and not a moment too soon, since my expanding waistline was threatening what my culture (and I) valued about the perfect body.
AIDS2010 for Dummies: An Entertaining Review. August 3, 2010. This is a collection of ALL the videos I produced while in Vienna for the 2010 International AIDS Conference, and it’s quite a colorful collection. I left the research-oriented reporting to others and followed the people, sights and sounds of this amazing conference — teenagers from around the world teaching about condoms! An AIDS prevention musical featuring sex workers (STAR WHORES)! The rallies and the protests and the celebrities are all here. My thanks to TheBody.com for sending me to this event as their correspondent!
The Gay Pride PSA (that will never air!). June 15, 2010. What begins as a funny reflection of what gay pride has meant to me (organizing a parade starring ME as a drag queen — when I was eleven), becomes something much, much different in this short video. I guess the wreckage of my drug addiction was still haunting me. What results is a sweet message about PRIDE that suddenly punches you in the gut. I’m proud of this one.
Six Tips for Choosing Your HIV Doctor. May 28, 2010. When I began making plans to move from Atlanta back to Ft Lauderdale, the most daunting task was having to find the right doctor in my new city. Luckily, my Atlanta physician, Dr. David Morris, walked me through some practical tips that anyone can use. Watch his advice — and then watch as my cameras capture my very first meeting (really!) with my new doctor in Ft Lauderdale, as I follow the tips and grill him with questions!
What It Feels Like for a Mom. May 4, 2010. How does our HIV status affect the ones who love us most? What fears are they not telling us? I’ve always wondered, so I sat my mother down for an interview about my HIV, what it was like raising two gay sons, and how it affected the family when we experienced our own AIDS tragedy. She never flinched at the questions, and her answers are sincere and revealing.
Has My AIDS Crisis Ended? April 18, 2010. As the annual AIDS Walk strolled through my community, I remembered the crisis mentality of earlier Walks — and how getting myself to a Walk at all no longer seemed so important. Has my “crisis” lifted? As part of this video I sat down with U.S. Congressman Barney Frank and asked him about the difference between the emotional toll to gay men, “then” and now.
Facing Change. March 25, 2010. While packing for my move back to Ft Lauderdale from Atlanta, the chore of separating my belongings (“deciding what to keep and what to throw away…”) brings up some emotions (it also brings up a face in a box, more than ready to tease me for feeling blue). I give the packing a rest long enough to get honest about the reasons for the move, and the beauty of second chances.
The Real Poz Guys of Atlanta. March 11, 2010 (originally posted on TheBody.com on February 23, 2010). Another fun evening of friendship and chocolate and secrets with my supportive group of friends in Atlanta. This time, we bake brownies and talk about everything from our doctors to our love lives, and then have Show ‘n Tell! A great example of the value of strong social support for people living with HIV/AIDS.
Anita Mann’s Infamous TV Set Number. (Filmed in 2008). Set to Nancy Lamott’s “Don’t Get Around Much Anymore,” my drag queen alter ego battles herself locked in a TV set in this, her finest hour on stage. This performance was taped at a fund raiser for gay and lesbians in recovery from drugs an alcohol, since Anita (and I) are in recovery from crystal meth addiction. Laughter isn’t just good for my t-cells, it is also vital to my recovery from addiction!
A Facial Wasting Update. (Originally appeared on TheBody.com on February 2, 2010). In a previous video I took you along to my first appointment with Dr. Gerald Pierone to address my facial wasting, and that video focused on how my wasting affected me personally. This video, told more from the perspective of Dr. Gerald Pierone, takes you along on my third visit for facial fillers to treat my wasting (lipoatrophy) with Sculptra and Radiesse. Hope you’re not afraid of needles.
Serosorting and Sex Clubs. (Originally appeared on TheBody.com on January 4, 2010.) This quickly became my most-viewed video blog to date. Was it the intelligent discussion about serosorting (limited one’s sexual partners to those who share your HIV status), or was it the guided tour of a gay sex club? Hmm. At any rate, Poz4Play sex party host Bill Trimble leads me through the titillating hallways of his monthly sex party “exclusively for HIV positive gay men.” Then we have a seat next to the sling and enjoy an equally interesting conversation about the sexual choices gay men make — and why Bill believes he is providing important HIV prevention.
My Search for Meaning. (Originally appeared on TheBody.com on May 27, 2009.) Such a tiny topic, eh? And yet when you are faced with such tragedy like the AIDS crisis you can find yourself asking, “What’s it all about?” I’ve shared my frustration with the topic and then conduct interviews with psychiatrist Dr. Jesse Peel, AIDS physician Dr. David Morris, and gay theologian Rev. Chris Glaser. Interesting food for thought.
You Gotta Have Friends. (Originally appeared on TheBody.com on April 22, 2009) So many people wrote to express their appreciation of this video and its simple plot: I invited four friends over for dinner and conversation, and all of us are living with HIV. The intimacy of the conversation is real; these are, in fact, good friends of mine. We cover everything from how we disclose our HIV status to friends and dates, to what our mothers think (and which ones are supportive). Antron, Craig, Eric and James demonstrate that in the sometimes stressful world of HIV, friends really matter.
Treating My Facial Wasting. (Originally appeared on TheBody.com on March 25, 2009.) After dealing with facial lipoatrophy (wasting) and seeing it so evident in my videos, I decided to do something about it by visiting Dr. Gerald Pierone in Vero Beach, FL and being treated with injections of facial fillers. Facial wasting and fat displacement are common side effects of both HIV infection and the medications used to treat it. This topic was updated in a later video when I returned to Dr. Pierone, “Facial Wasting Update.”
Mark’s R-Rated Sex Pig Blog. (Originally appeared on TheBody.com on January 28, 2009.) Barebacking, glory holes, casual sex and disclosing my HIV status are all discussed in this bawdy, provocative episode. Aging and negotiating sex as a gay man is as funny as it is frustrating, if you ask me. My favorite part: negotiating safer sex through a glory hole. The video is notable for another, unrelated reason: I was only one month clean from my crystal meth addiction and you can still see the ravages of drugs on my face, which is a lesson all its own.
The Drug Addict Takes a Holiday. (Originally appeared on TheBody.com on January 13, 2009.) Ouch. This one is tough for me to watch. After my former partner Ben ended our relationship when I ended up in drug rehab, I visited him in the home we had shared in Ft Lauderdale and tried to make sense of our past and what may happen in our future. This video is also a visual testament to age, past drug abuse and HIV meds catching up with me, as evidenced by the lipoatrophy (facial wasting) so apparent on my face.
Taking Care of Hal. (Originally appeared on TheBody.com on November 20, 2008.) I never dreamed I would be spending two months in Michigan helping my oldest brother through chemotherapy. But it got me outside of my head, beyond my own HIV diagnosis, and helped me focus on helping someone else. Sometimes, that’s the best medicine of all. (My brother, Harold R. King, Jr., passed away in the Fall of 2010.)
Oprah Comes Calling. (Originally appeared on TheBody.com on November 10, 2008.) In this, only the second episode of my ongoing video series, Oprah reaches out to touch me! It leads to bittersweet memories of Louise Hay (the “Hayrides” of the 1980s in West Hollywood), and of my gay brother Dick and his partner’s struggle with AIDS. Also, I get an annual physical with Dr. David Morris. Interesting in that you can see me trying to find a balance between humor and helpfulness.
The PREMIERE of My Fabulous Disease! (Originally appeared on TheBody.com on September 24, 2008.) In September of 2008, my video series “My Fabulous Disease” debuted on the best HIV resource on the net, TheBody.com. Here is that episode, which introduces me as a gay man in recovery living with HIV/AIDS. Little did I know what video adventures would lie ahead!
Tags: acting, Aging, aids, barebacking, culture, drag, family, gay, gratitude, help others, hiv, lipo, Louise Hay, meth, Oprah, physical, physician, politics, Radiesse, recovery, Recreation, research, Sculptra, serosorting, Sexuality, testing
Posted in A LIST OF ALL "MFD" VIDEOS, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 1 Comment »
Thursday, February 3rd, 2011
I’m as vain as the next guy. And if the next guy happens to be modest, or straight, or comfortable in his own skin, then it’s really no contest. I’m way more vain. Describing my vanity requires making up new words. Vainer. The vainiest. Psychovain.
That must be the old Mark, because the new one is appearing in gym clothes standing next to HIV fitness and nutrition expert Nelson Vergel. There I am, all doughy and smiling, thirty pounds heavier after a year without a cigarette (how long do I get to legitimately use that reasoning?). But anything for you, my friends.
And besides, the meaning of fitness for me has changed, however slowly, from the size of my biceps to the overall health of my body. After a misguided youth devoted to “looking hot” and feeding my drug addiction (a period that stretched into my 40’s, who am I kidding?), standing around in a gym with my gut exposed is real progress for me.
In my first video blog with Nelson (“Fitness Stud Nelson Vergel Raids My Fridge”), he ransacked my kitchen and offered great tips on eating right. In this new video, we hit the gym for a lesson on aerobic activity and weight lifting. With issues like bone density more vital for people with HIV, weight training makes sense.
Still to come: Nelson takes me on an eye-opening tour of the grocery store ” and cautions me about walking down the aisles. And for more great information from Nelson, his new book Testosterone: A Man’s Guide is now available through sellers like Amazon.
I’d like to extend a special thanks to The Poverello Center in Ft Lauderdale. Poverello not only provides food for people with AIDS, they created the Friends Fitness Center (photos above) and graciously allowed Nelson and I to film this video there. And speaking of filming, my friend Kai patiently worked the cameras for several hours and I appreciate it.
Thanks for watching, my friends, and please be well.