Posts Tagged ‘gratitude’
For Dad: “I am the man my father built.”
Thursday, June 16th, 2011
Never in my short life had I been camping. I hated the grit of dirt and leaves, bugs, peeing outdoors, and the looming prospect of sleeping amongst it all. The woods looked like the terrarium for my pet alligator, and from what I could tell, Wally didn’t sleep all that great either.
Dad thought it was just terrific (“Want to make a fire with two sticks, Mark?†“Did you count the worms in the bait can?â€) and he was getting along well with the other dads at this father/son campout with my Cub Scout troop. For that I was grateful.
At school they were calling me a queer and at church the jocks were chasing me down the halls for wearing platforms. But Cubs was populated with other misfits like me. I wondered if the Scouts was a club that parents paid to give their kid friends.
The dusk air was filled with the sounds of mallets thumping, as duos of fathers and sons pitched their tents. Dad was nearly giddy as he carried a long bag from the car. I’ll bet he bought us a brand new one, I thought, since we never went camping before.
Dad unrolled the bag at our feet. There, stretched across the ground, was clear plastic and some twine. Nothing more.
“Somebody stole our tent!†I said, shocked.
Dad laughed. He was one of those men who began most sentences with a laugh or a “heh heh†sound. It was endearing but not at the moment.
“Nope, sport, that’s our tent,†he said, “let’s get it going.†He started to unfold it. I stared and stared. It looked like the largest plastic leftover baggie I’d ever seen. My face felt flush with embarrassment.
Dad was strange. He always had projects going on in the shop or downstairs, like building a grand piano from cardboard (no special reason) or learning about geodesic domes and making one the size of a Starbucks in the back yard. Out of clear plastic. Getting a splinter removed from my foot became a lesson in physiology, not little piggies.
His obsession for years was box kites, the bigger the better. He started with a six-foot prototype, flying it in a cotton field near home. Then we worked all summer on a box kite the size of a Winnebago that we transported to the field on a flatbed truck. It crashed after a few glorious minutes and Dad, predictably, laughed. “Wow!†he gleefully shouted. “Did you see that crash? Spectacular!â€
On weekends you always heard his low, rumbling laugh in the basement when he “had an idea.†Mom hated it when he had an idea.
Dad was now pitching a plastic baggie, and the others were noticing. The mallet thumping slowed and heads turned. Why did we have to be so different? I liked fitting in with this group of Scouts. Dad was ruining everything.
“Dad,†I offered, speaking in the calm manner of a hostage negotiator, “why don’t we borrow a tent?†I looked around and didn’t see anyone who felt like interacting, much less lending. I wondered how long a K-Mart run might take.
He paused and twirled his wooden mallet. I was surprised it wasn’t made from clear plastic. “Heh heh,“ he replied. “Nobody has one like this. I made it for us! Nobody makes one like this.†He draped the plastic sheet across a clothesline contraption he’d made and then it struck me.
The stares. The withering, judgmental stares of the others. Once inside our leftover baggie, they could still stare as much as they liked. There was no place to hide. I wanted to throw myself on the campfire.
“But Dad,†I tried, a bit more desperately, “everyone can see us. You can see through this…â€
“That’s the beauty of it!†and he bellowed a laugh that produced more squinty glances from around camp. “Look up, Mark! We’ll be able to see the stars!â€
Those days, and that moment, are lost to time now, and so is my father. Not long after camping out under the stars, our personas traded places. I embraced my sexuality and my misfit charms, while Dad’s struggle to understand my life made him just another parent who didn’t get it. Worst of all, he was made to contend with a teenager who saw him as something abhorrent: typical.
We had many years, later, when our outlooks merged again and we reveled in his various projects and my work as an outspoken gay man. Dad raised exactly what he valued, a man who steps up and asks stupid questions and knows that to soar you must risk the occasional, spectacular crash.
On my best days I live happily in a clear plastic tent of my own design, writing and living as an HIV positive queer for all to see. And on the worst of days, my mind’s eye conjures up a hearty laugh coming from nearby, maybe the basement, where something is being built that will solve absolutely everything.
Usually it’s a box kite, crafted from unlikely supplies and fatherly magic, that carries me far, far away.
(This originally posted in August of last year, but my late father is very much on my mind during this Father’s Day weekend. Thanks for giving this another look.)
Tags: family, gay, gratitude
Posted in Books and Writings, Family and Friends, My Fabulous Disease | 15 Comments »
My Surprising Lack of Gay Pride
Tuesday, June 7th, 2011
For most of my life I’ve been judgmental and a little impatient with gay people who didn’t just come out. Are the risks really that dire? I suspected they were just chicken shit, or unwilling to stand up to their family or to whatever screwed up religious upbringing they had.
Growing up on Air Force bases wasn’t exactly the Castro, but I didn’t know any better than to walk and talk however I pleased (I was in full sashay mode by the age of twelve). I was sexually active soon thereafter, and stunned my Louisiana high school with an older boyfriend in my senior year.
Yes, I grappled with my Methodist teachings and suffered through some brutal rounds of dodge ball (affectionately known as “Smear the Queer†where I come from), but making it though my teens was mercifully uneventful.
The bullies were too freaked out by my jumpsuits and platform shoes to approach me, though I must credit my perpetually embarrassed, varsity jock brother for helping keep them at bay. The result of this rather fortunate gay adolescence was my ignorance of the perils of being out, and that arrogance suited me just fine for most of my young adulthood.
And then, years after my own coming of age, Matthew Shepard tried to live openly as a young gay man, too — until he was beaten and left to die tied to a fence in Wyoming. The images and details of his horrific final hours were like blunt force trauma directly to my heart. How could I have been so cavalier about what the real costs of coming out could be?
Today, I never downplay the societal risks of being gay, but I focus my writing on two things that added shameful layers to my identity: HIV and drug addiction. How ironic that the kid who believed there were no dangers to growing up gay would fall victim to two of the most common health risks among gay men: being infected with HIV and using drugs.
I’m still a sashaying, gay stereotype representing the most fabulous social ills, it would appear.
My sense of pride emerged not in response to being gay, but in my response to HIV and my drug addiction, in that order. I found personal self worth by helping my community face AIDS in the 1980’s, and I have rediscovered my self esteem while on the treacherous road back from crystal meth addiction.
Being gay isn’t something I have been proud of, in and of itself. But I take pride in how I have handled what I consider the fallout of being gay.
During this gay pride month of June, I hope we’ll all take some time to assess what we’re so damn proud of. I’ve made that list, and “being gay†isn’t anywhere on it. Do I take my sexuality for granted, or am I ungrateful?
I’m proud of Mark, the man as he is today. I’m proud of my brother for keeping the bullies away. And I’m proud at my success, day by day, of recovering from addiction and having a purpose.
With that, I’ll sashay out of here.
Mark
(The video above is a gay pride message I produced last year, and I would encourage you to watch it. What begins as a funny take on public service announcements becomes something surprisingly different and emotional. As always, my friends, feel free to share my content, and please be well.)
Tags: Aging, aids, culture, gay, gratitude, help others, hiv, meth, recovery, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 12 Comments »
Calling HIV Negative Gay Men: This is Your Time
Tuesday, May 31st, 2011
This is directed to HIV negative gay men. Listen carefully. This is your time.
I’ve lived with HIV more than half my life, and people often praise me far more than I deserve, simply for surviving. They use words like brave and courageous.
You know what takes courage? Getting an HIV test every few months. You, waiting nervously while your most personal sexual choices are literally being tested, waiting to find out if you’ve been good – or if you’re going to pay for a single lapse in judgment by testing positive, when the look on the faces of your friends will say you should have known better.
I have no idea what that must be like. I took the test over 25 years ago. The positive result was traumatic, no doubt about it, and I soldiered on during some awfully frightening times. But I have a significant psychological advantage over my HIV negative friends: I only took that damn test once.
During all these years, I’ve acted irresponsibly at times or taken chances I hadn’t intended. But there has been no further judgment from a blood test. That reckoning was faced long ago.
But you – whether you have been sexually active for a year or a decade – have very likely faced some tough choices and behaved wisely. You keep doing the right thing.
This is your time. The word courageous is for you.
If you don’t define yourself, in large part, by the fact you are HIV negative, start now. It is your accomplishment. It says you are taking care. And it says you are eligible to participate in vaccine trials or mentor someone else trying to remain negative.
There is ongoing research now that is focused on HIV negative men like you. Exciting new studies are investigating drugs to prevent infection after something risky has occurred, while other studies have shown promise for a drug regimen that might block infection before it happens.
And right now there are vaccine trials waiting for men like you to help find the ultimate weapon against HIV. They need volunteers, badly.
This is your time. This research is about you. This call to action is for you.
I can already hear the rumblings on both sides of the viral divide. People are so quick to take offense, so afraid of being misunderstood, of being labeled or blamed or ostracized.
My fellow positive brothers are so bruised by stigma that it can be hard for them to lift you up. They’ve been rejected by you. They don’t like hearing “maybe we should just be friends†and they don’t like seeing “UB2†in your online profile. They might be positive as a result of one heated mistake, or due to sexual assault, or by trusting (or loving) the wrong person — and they deeply resent feeling judged.
Maybe they think your negative status is the result of pure luck, or that you don’t like anal intercourse, or you’re lying.
Meanwhile, your sacrifices go unrecognized. You’ve seen some positive friends take early disability, hang out at the gym and get help with the rent. They receive so much support and empathy that it must feel like there isn’t much left for you. Every year we all swarm the streets for the AIDS Walk, and you can’t help but wonder if your parade will ever arrive.
These grievances and resentments give me a headache. It doesn’t matter much to me who is most injured. How infinite is our compassion for one another? I don’t care anymore who gets what. What matters most is who does what.
This is your time. This truce, this call to a higher purpose, is for you.
You are fully human, like everyone else, my friend. You are courageous, afraid, selfish and compassionate. You make difficult choices and you make mistakes. And we need you so very badly.
Thank God for you. This is your time.
(This piece was written as part of the GA Voice commemoration of 30 years of HIV/AIDS. I was honored to contribute to their special issue. — Mark)
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If you haven’t caught up with the blog from gay theologian the Rev. Chris Glaser, his thoughtful posting about the rapture, and what it means to be left behind, is a great introduction. Chris has a way of bringing Christian teachings back to their essential meanings (in other words, without the hateful language and intent we have come to expect from fundamentalists). As a child he didn’t want to go to hell, but he was afraid of the rapture because of his fear of heights. And who in their right mind would leave this poor doggie behind?
Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous “pet projects” – including such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation. These facts, from the ADAP Advocacy Association’s (aaa+) newest blog posting, paint a dire picture of our national healthcare priorities. The blog also begs the question, “Where is the leadership?” I would urge urge you follow aaa+ and stay tuned for ways in which you can advocate to solve this national disgrace.
A New York Times article on the scientific history of AIDS does a great job of showing how naive researchers were in the beginning of the epidemic (a 1981 New England Journal of Medicine editorial didn’t even allow for the existence of a new microbe), but, more importantly, it highlights the ways in which AIDS activism and research has rewarded all of mankind with swifter drug approval and better patient advocacy:
“The relative speed with which the therapies were developed owes much to the efforts of cadres of activists who demanded that the Food and Drug Administration loosen the rules for clinical trials and speed its drug approval process. Efforts to develop anti-H.I.V. drugs have paid handsome dividends by leading to development of other drugs to treat other viral infections, like the liver diseases hepatitis B and C and certain types of herpes viruses. Also, AIDS advocacy has spurred leaders of campaigns against breast cancer and other diseases to adopt similar strategies.”
As always, my friends, please be well. And I hope you will “share” this posting with your friends and colleagues. Here’s to a wonderful summer!
Mark
Tags: aids, culture, gay, gratitude, help others, hiv, research, Sexuality, testing
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
How one Mom handles HIV/AIDS in the family.
Thursday, May 5th, 2011
God could not be everywhere, so he created mothers.
~Jewish Proverb
My mother raised six children, topping off this great achievement with yours truly. Yes, I’m the youngest, which explains a lot, but not all. To understand the rest, you’d have to know the woman. Or, perhaps, simply be a mother yourself.
Mom was there for her kids during the years my father spent in far flung corners of the world flying B-52′s as a pilot in the Air Force for more than thirty years. Mom had to be all things: nurturer, disciplinarian, confessor, judge and jury. She was the parental constant, and she performed it all admirably (and stylishly, if you ask me).
Once I was old enough to safely get home from school on my own, Mom went back to school herself. To everyone’s surprise but hers, she got a Master’s Degree — even spending a semester at Oxford — before starting a prestigious career as head of Louisiana State University’s library. She has since retired but could easily keep a smirk on her face for the rest of her life for all of those poor fools who, like me, thought her talents stretched as far as PTA meetings but not much further.
In 1985, she approached the news of my HIV status with the same pragmatic resolve as her career. She studied up, listened when I needed to talk about it, and traveled to Los Angeles to join me for a weekend educational retreat for people with HIV/AIDS and their allies. I’ll never forget her attending a breakout session on safer sex and then catching up with me to say, “Mark, explain rimming.”
Her life has been the kind of roller coaster you might expect for a woman who has raised six kids, seen a few wars, and watched two gay sons negotiate the AIDS epidemic.
There are questions I have always wanted to ask Mom about finding out about my HIV status during the darkest years of the pandemic, and how it felt for her to go through a family AIDS tragedy. In my video interview with her (above) from last year, she never flinches at the questions.
This Mother’s Day, I hope you are fortunate to have a supportive mother to call or remember fondly. Thank God, mine is not unique in her capacity to empathize or love unconditionally.
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PLUS…
Exactly 21 years ago today, my friend Jonny Wood (right) tested HIV positive. Like many of us, he has channeled his gratitude for his good health by giving back to his community, and next weekend Jonny will participate in the grueling AIDS Ride to raise funds for the Emory Vaccine Center. You know I never hit you up for donations, but if you can afford even a modest contribution, his official web page for his AIDS Ride makes it really easy and secure to donate. No donation is too small, my friends. Isn’t it amazing that so many of us who lived through the dawn of this epidemic are not only still walking and talking, but riding their bikes for hundreds of miles in hopes of finding an effective vaccine? You go, Jonny.
Larry Kramer‘s searing indictment of society’s response to AIDS in its early years, The Normal Heart, is back on Broadway and just racked up five Tony Award nominations, including for Ellen Barkin (right). “Powerful” hardly describes this primal scream of a play, and its fitting that this 1985 masterpiece has been remounted as we commemorate 30 years of the epidemic and as our community commitment to AIDS continues to be diluted by time and treatment advances.
As always, my friends, please be well.
Tags: aids, family, gay, gratitude, help others, recovery, research
Posted in All Other Video Postings, Family and Friends, Living with HIV/AIDS, My Fabulous Disease | 6 Comments »
The Book with a Promise: It Gets Better
Tuesday, March 15th, 2011
There were moments while reading It Gets Better, the new book inspired by the YouTube video project to help bullied youth, when my heart leapt to my throat and hovered there. It happened a few times, quite unexpectedly, usually while in the middle of some essay from an author I’d never heard of. In an instant, I found myself fighting back tears over the pain of someone who was once convinced they would never be happy or accepted in this world.
These emotional bombshells are the secret weapon in this collection of essays: moments of aching truth that pierce the sometimes distracting hype associated with the “It Gets Better†project and deliver an emotional wallop.
In case you don’t know (really?), the It Gets Better Project is the brainchild of writer Dan Savage and his partner Terry Miller. In response to a rash of gay teen suicides due to bullying, the couple realized they didn’t “need permission from parents or an invitation from a school†to reach troubled LGBT teens. All they needed was YouTube to talk to them directly, telling kids to hang on, that “it gets better.â€
Months before social media helped topple governments across the globe, this simple idea led a revolution of its own. It reached millions of kids and made The Trevor Project, a crisis hotline for LGBT or questioning youth, a household name. As the YouTube channel exploded, celebrities and elected officials joined the chorus of messages from everyday folks.
And now, the book. It Gets Better: Coming Out, Overcoming Bullying, and Creating a Life Worth Living (released on March 22) is “inspired†by the video project, meaning some of the essays are original written pieces while others are edited transcripts directly from videos. It’s an earnest, uneven, truly inspirational collection, with enough of those heart-in-your-throat moments to keep you reading.
Interestingly, the most famous names in the book have the least impact. Barack Obama, Hillary Clinton, Al Franken, Suze Orman (left), and even Ellen Degeneres are all here, but their pieces feel about as passionate as thumbing through their cue cards. Maybe fame leads to caution.
You’ll have to settle for celebrity twice-removed to tap a wellspring of real emotion. Randy Roberts Potts is the grandson of the late, ultra-homophobic televangelist Oral Roberts, and Randy shares a family secret more salacious than his own homosexuality: his uncle, Ronald David Roberts, was also gay, and he was so despondent after coming out to his famous father that he killed himself with a gunshot to his heart.
Randy’s own story is filled with religious and social trials, but there is victory. “I had to fight hard for it, but it finally happened,†he writes, “the freedom to just be myself.†And then he can’t resist this: “My grandfather was famous for telling people, ‘Something good is going to happen to you!’ And, it’s strange to admit it, but he was right.â€
I still have the voice of lesbian Gabrielle Rivera ringing in my ears. Gabrielle appears on page 45 and not a moment too soon, bursting with truth and anger and passion. “It kind of doesn’t get better,†she proclaims. “…but what happens is this: You get stronger. You learn how to love yourself. You learn that other people are just crazy and caught up in their own crap.â€
I’ve never been more moved by a dinner menu then I was reading the entry of food blogger Adam Roberts, who shares exactly what he prepared the night his parents came for dinner to meet the parents of his partner, Craig. Adam intersperses his coming out story with details of the night’s short rib and polenta, and the care, the sheer detail and love, with which he prepares the meal touched me deeply. By the time he served the flourless chocolate cake I was a complete mess.
Krissy Mahan from upstate New York (why are so many of my favorites from lesbians?) assures her readers that “not all gay people are urban… I’ve been really happy being a big rural dyke.†She loves country living but says “I’m sure there are some things that are kind of frustrating to you, and you’re probably rockin’ the flannel shirt every now and then, but that is going to be totally hot to somebody someday. It’s gonna get real better.â€
And even an actual reformed bully makes an appearance in the book. Joseph Odysseus Mastro is a straight 29-year-old from Oakland, California, and he has a confession to make. During high school, Joseph “was belligerent toward kids I recognized as being in the theater group, screaming ‘Fag! Faggot!’ at them.â€
Beyond apologizing to them, Joseph turned to community service. At 19, he began handing out condoms and lube outside gay clubs on behalf of an AIDS agency. “Some of my straight friends would ask ‘why are you helping out the gays?’ which is a reprehensible question in the first place, but I respond that… there are gay men who have HIV, and they’re who I want to help.†Joseph wins the Reformed Bully of the Year Award, hands down.
The real excitement of this book is imagining where it will end up – a public library in South Dakota, the reading room of a youth center on an Air Force base — and how, because we must, we get this book on the shelves on every junior high and high school in the country.
Last year, my (also gay) brother Dick and I sat down at our Mom’s house and turned on the camera. For the next few minutes we traded stories about growing up gay in the same family – about 15 years apart – and even brought out photos from our youth. We teased each other like brothers do, and it was apparent we love one another, because we do.
Our It Gets Better video became a popular entry, and we were honored to be included in this book. There we are on page 300, near the back, in a transcript of our chat that reads like a sassy play with two very gay characters. It is neither the best nor the most moving essay in the book, but it does show an easy love between us, and that alone may be of value to a LGBT youth out there. I couldn’t be more proud.
Like many people who grew up gay and afraid, my soul may have survived those years but I have a few scars left behind. It Gets Better gently strokes these wounds — the toughened and the still-tender ones — so that young people today might take heart and make the journey to adulthood a little more safely.
There’s no denying the power of this project, and what could easily be the most important book of the year.
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Word from the organizers of the annual HIV Cruise Retreat is that there are now more registrants for the November cruise to the Caribbean than ever before! I was honored to be the M.C. for the cruise last year, and honestly I had more fun than I could have imagined (nope, I’m not getting paid to participate or to promote this event). Take a look at the web site for video from last year’s event and consider joining us. It’s a largely gay group with straight allies, but without barriers or attitude, just sincere support and a lot of fun.
Tags: acting, culture, family, gay, gratitude, help others, politics, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, My Fabulous Disease, News | 4 Comments »
A Very Special One-Year Anniversary Posting!
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. 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 Doctorâ€).
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,
Mark
“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
Here’s to many more years of Mark’s disarmingly honest, charmingly sincere, frequently bittersweet, and, above all, community empowering video blog.
Edwin J Bernard, journalist and blogger
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, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 14 Comments »
My Fabulous Disease: The Complete Video Collection
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.”
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.â€
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, My Fabulous Disease | 1 Comment »
Recovering Joy
Tuesday, December 14th, 2010
“Joy to the fishes in the deep blue sea. Joy to you and me.†– Hoyt Axton
If you have spent any time wandering around this blog or watching my videos, you know I have an almost stubbornly positive view of things. I like to smile, I love to laugh, and if someone is rude to me I figure they must be having a bad day.
Kinda sickening, isn’t it? There’s nothing worse than someone like me standing around when you’re pissed off about something. And I realize that my insistence on being happy can be my own, clever sense of denial. It could actually prevent me from seeing things clearly in times of real trouble.
Life has a way of foiling attitudes like mine, of course. Between watching AIDS emerge twenty-five years ago and then my drug addiction during the last decade, I’ve known pain and hopelessness. So, when my first sponsor in recovery asked what I wanted for myself, I said “I want to have joy again.†It seemed like such a distant goal at the time.
Thank God for you – yes you, sitting there reading this – because this blog has helped me regain a sense of purpose that I never thought I would get back. Your support and comments since I launched this blog just ten months ago have encouraged me more than you will know. I feel like I have my voice again, that I am making a contribution. I am filled with joy today.
Let me share some of that joy with you. Above, you’ll find a special reading of “Twas the Night Before Christmas†by my alter ego Anita Mann (her rendition takes you places you never thought this story could go, trust me).
The video was recorded at a fundraiser for GLBT folks recovering from addiction. It has a message that applies to us all, and it’s pretty funny. And come on, now… when was the last time someone read you this classic tale? Now is the time, so relax and enjoy.
As Anita says during her reading, “…we all have gifts in our bag.†Thanks for the gifts you have given me this year, my friends, and here’s to a wondrous, healthy year ahead.
Joy to you, to me, and to the world,
Mark
(I have added a new “share†feature†below, so you may now share this post with your friends via Facebook or Twitter, etc. with one click. I hope you will!)
Tags: culture, drag, gay, gratitude, help others, recovery
Posted in All Other Video Postings, Anita Mann and Acting Gigs, Gay Life, Meth and Recovery, My Fabulous Disease | 8 Comments »
Once, When We Were Heroes.
Sunday, November 28th, 2010
My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,†over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.
There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.
There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye†they meant forever. When all of us had a file folder marked “Memorial†that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,†I offered, “I’m from the future, and I can tell you anything you would like to know.â€
“OK then, what happens to my parents?†he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,†I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When …†he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?†There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,†I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.†He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, which has been revised to commemorate World AIDS Day. I produced the accompanying video a few days ago — think of it as a “DVD Extra.” Feel free to share this with friends (I’m trying to introduce my blog to new people, if you can help with that). Here’s to a joyous and healthy holiday season for us all. — Mark)
Tags: aids, culture, gratitude, hiv, politics
Posted in All Other Video Postings, Books and Writings, Family and Friends, Living with HIV/AIDS, My Fabulous Disease, News | 33 Comments »
(Not exactly) Like a Prayer
Thursday, November 18th, 2010
Soon, as many families take a seat at their Thanksgiving table, after the food is set but just before the feasting begins, a paralyzing moment will occur. What now? They’ll wonder, glancing left and right. Should we pray? Uncomfortable seconds will tick by. Finally, someone will ask to be passed something and people will dig in, grateful to get on with it.
We used to pray, when I was little, when the family was young and the occasion was important and we were forced into this odd intimacy, with the mystical tones of something like church but at home. As a child the ritual was like a magic show, waiting spellbound as the secretive words were spoken.
My oldest brother Hal would pray at the dinner table with his head weighed heavily in his hands, as if he had a massive migraine or was avoiding the paparazzi. Maybe he was just embarrassed, since the act seemed so foreign and mortifying, like peeing in front of one another.
Once, Mom asked Dad to recite the Lord’s Prayer at the Thanksgiving table. He started strong and then the words came more slowly, until his memory of the prayer – recited every Sunday in church services he wouldn’t attend – failed him. Everyone just sat there in awkward silence, staring at our dad the heathen, until my mother finally prompted him, utilizing a Nancy Reagan whisper into his shirtsleeve.
It was about that time that prayer was discontinued at our dinner table. For a few Thanksgivings someone would suggest we all say what we were thankful for, but the practice faded. It seemed like some sort of consolation anyway. All the magic had long since been revealed.
Today, my recovery from being a drug addict includes many suggestions about prayer. It’s encouraged, primarily for me to exercise enough humility to acknowledge there are powers greater than myself. After years of selfish using and living on my wits alone, it’s an important reminder. But that doesn’t mean I do it. Pray, that is.
I’ve been getting by with the claim that I meditate. Just the word “meditation” has less of the religious baggage than “prayer.” It feels less embarrassing, more reasonable. Maybe I’m remembering Hal, with his head buried in his hands.
I do believe that an awesome power, a god out there somewhere, is responsible for my existence and good fortune. I’m just not in the habit of chatting him up to express my appreciation or even for a passing hello. Which means, if I believe something created me, I must be one ungrateful son of a bitch.
Interesting. I’ll have to meditate about this.
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My week as a guest host for The Bilerico Project is ending. Here’s a wrap-up of my posts on current events and pop culture:
In The Beginning, there was Sam Elliott. Long before Tom Selleck and before the Baldwin brothers, there was only Sam. Here’s my appreciation for a man who not only set the gold standard, but had class. And I offer proof, in relating the story of the night the lights went out at an AIDS Quilt event in Los Angeles years ago, and his graceful response.
Is William the next King of England? Can’t we skip Charles and make this graceful young man King? I just can’t bear the thought of Camilla sleeping anywhere near Buckingham Palace. Meanwhile, young Kate Middleton has been screaming “crazy like a fox, bitches!” into her cell phone for the last three days.
Every girl in the UK is singing this song! If you don’t know who Alice Ghostley or Kaye Ballard is, please turn in your gay card, if you carry one. As the stepsisters in the original production of Roger & Hammerstein’s “Cinderella,” they stole our hearts (and twisted our arms) with the hilarious “Why Would a Fellow Want a Girl Like Her?” Here’s a look at their magical, snarky rendition.
Curses! Hollywood Meddles with the Magic of ‘Oz.’ Some day I’ll wish upon a star and ask that they never, ever try to remake The Wizard of Oz. Or, for that matter, any one of the truly awful sounding projects currently underway with ridiculous storylines like the early days of the wizard or Dorothy’s great-great-granddaughter. Wasn’t The Wiz bad enough?
The Great Chinese State Circus. Ballet isn’t my thing, but this is beyond anything I’ve ever seen. Is it gymnastics? Cirque du Soleil? Whatever it is, your jaw will drop… and stay there for three minutes. (Now I’m even more excited about the soon-to-be-released The Black Swan, featuring a total freakout performance by Natalie Portman. Director Darren Aronofsky hasn’t been this twisted since Requiem for a Dream.)
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Tags: Aging, culture, family, gratitude, help others, politics, recovery
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