Posts Tagged ‘culture’
Tuesday, December 13th, 2011
My mother’s home here in Shreveport, Louisiana, was fraught with excitement last week. Christmas decorations littered the living room, the almond scent of cookies filled the air, and last minute phone calls and arrangements made it all feel like a major production was underway.
And there was. The event that had everyone scrambling was held on a Sunday afternoon, when siblings and extended family arrived for the taping of The ‘My Fabulous Disease’ Holiday Spectacular.
Now just take that in for a moment. My family was enthusiastically participating in a video about my life with HIV. And they were much more concerned with choosing a fun holiday outfit than being publicly associated with their HIV positive relative. For them, sitting down for an interview about my HIV status, well, that was the easy part. They had no problem being candid about my HIV, as you will see.
I am an extremely blessed and fortunate man.
When I was young, I remember watching “The King Family” on television (right), a big happy bunch that sang really well and wore lots of matching outfits. I was starstruck, and always wondered if that King family might bear some relation to mine. And if they didn’t, would they let me come be on their show anyway?
Well, today, I’m proud of my own family for displaying our dubious talents, and by going a big step further by discussing the importance of supporting those of us living with HIV/AIDS. For far too many, the difficulty in disclosing our status — or the result of doing so — has distanced them from the people they need most during times of challenge.
The Holiday Spectacular includes some family greetings, a cooking segment with Mom (you’ll want that divine almond scent wafting through your home, too), some holiday drag, a surprise here and there, and even an appearance by the big man himself, Santa Claus.
You may remember my mother from “What it Feels Like for a Mom,” a bracingly honest video created for Mother’s Day. You might also remember my gay brother Dick, who made an It Gets Better video with me. He was also one of the main subjects of the award winning “Once, When We Were Heroes” posting I made for World AIDS Day several years ago. But today, you’re also going to meet sisters, nieces and in-laws who have special holiday greetings just for you.
Enjoy the holiday special, my friends. I hope you’ll share it with anyone that could use some holiday cheer, or needs a reminder that they are loved. And as always, please be well.
p.s. As promised in the video, here is the recipe for Mom’s Christmas Cookies. I’m certain they’re fantastic for your t-cells.
(Note: Mother uses a MIRRO Food Press, a device that must have been manufactured during the Eisenhower era, judging from the faded instruction manual she still keeps handy. I found one on E-Bay for you for less than four bucks, or you can use a more modern appliance, if you must. I don’t guarantee the cookies will taste the same!)
Time: 10-12 minutes… Temp: 375F… Yield: 7 dozen
1 cup shortening
3/4 cup sugar
1/8 tspn salt
1/4 tspn baking soda
1 tspn almond extract
2 1/4 cups sifted flour
Green food coloring
1. Cream shortening, adding sugar gradually
2. Add unbeaten egg, dry ingredients, flavoring, and a few drops of food coloring. Mix well.
3. Fill the cookie press and form cookies on ungreased sheet. Sprinkle with sugar and bake.
4. Frost and sprinkle something fabulous on top of them (this is Mom’s provocative departure from the original recipe. That’s just how she rolls.).
Tags: aids, culture, drag, family, gay, gratitude, help others, hiv, recovery, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 21 Comments »
Tuesday, December 6th, 2011
Remember when we were little, and if we wanted something we simply asked for it? It felt easy. It seemed natural. And if there was really something special we had to have, there was a golden opportunity every year to ask the person who made all things possible. Santa Claus.
But then we got older, and life became more complex, and we were told it was better to give than to receive. Asking for what we wanted felt selfish, and many even a sign of weakness.
I wish we could look at this differently. Admitting we want something can be liberating. It acknowledges we are human, and there is grace, beauty even, in revealing our need and being vulnerable and allowing someone to help us.
Just because we don’t ask for toys anymore doesn’t mean we don’t want anything. We want friendship. We want to be accepted. We want our health. Maybe it’s asking a friend to listen, or wanting a medication with fewer side effects.
Just saying, I need this. I want to feel better. Or, I need you.
Wanting is not limited to children, my friends. But we might take a lesson from their transparency. Sometimes the answer, the help we need, the gift waiting for us, will only appear when we take a chance, when we finally have the courage to ask for what we want.
Happy holidays, and please be well.
(I don’t think I’ve ever been more excited about a video blog than the one premiering here next week: The “My Fabulous Disease” Holiday Spectacular! A dozen of my relatives have come together to bring you comedy, Christmas cookies, a little drag, a visit from Santa — and some very candid feelings about loving a family member with HIV/AIDS. I hope you’ll come back next week and meet the family! — Mark)
A word, if I may, about my recent posting “The Long Road Home from Relapse,” which managed to break traffic records on my blog, generate amazingly supportive comments, and also became its own source of concern among some of my fellows in recovery. As a few of the comments suggested, my drug relapse was a serious event that even I may not fully appreciate just yet, much less be able to distill its lessons to my readers. Some felt that writing about it so soon after the fact seemed cavalier. I’d like to say that my actual recovery process — the work I do on a daily basis to rebuild and maintain a clean and sober life — involves many things that are completely unrelated to my writing. It is ongoing and intimate and I take it very seriously. I considered withholding the relapse from my blog, but it just felt dishonest not to talk about it. My point is, there is work ahead for me that I hold dear and will keep to myself, my sponsor and my God. As Tony Kushner writes in the last line of Angels in America, “the great work continues.”
The madness continues of criminalizing those with HIV who do not (allegedly) reveal their HIV status to their partners, and new cases are piling up around the country. These include many prosecutions in which protection was used and no transmission occurred. But only now have we been able to hear the voices of those who have experienced this Kafkaesque nightmare. In his upcoming documentary “HIV is Not a Crime,” AIDS activist and writer Sean Strub gives voice to the “criminals.” Their stories are riveting and heartbreaking, like that of Nick Rhoades, right. You can view a terrific trailer on YouTube, and I dare you not to let it make your blood boil, positive or not. I urge you to take a look and get educated on what is becoming a defining HIV issue for our time.
Did you catch all the media attention last week stating that people with HIV aren’t taking very good care of themselves? Oh yes indeedy, the news reports, with headlines like Few in US with HIV have virus under control, and HIV Out Of Control In US Patients, seemed to suggest that it was people living with HIV who somehow haven’t been doing the right thing to maintain their health. And that’s a load of hooey, as my dad used to say. It turns out that the reports were misrepresenting a new CDC study showing that less than half of HIV patients have access to proper treatment. As in, not their fault. This distinction was made in an eye-opening blog posting by Housing Works, in which the actual study vs. the media reporting is clearly explained. “We are facing major budget cuts in homeless services, housing, testing and prevention,” blogger Kenyon Farrow states. “These all prevent people with HIV from staying healthy and make many more people vulnerable to infection… By focusing media scrutiny on government officials, the public would be better informed about who’s really ‘out of control.’”
The Windy City Times continued a remarkable year-long commitment to covering AIDS this week, which is really a story in itself — a gay paper intent on maintaining visibility of the crisis in commemoration of the 30-year milestone. So I am especially excited that the paper chose to run a profile about My Fabulous Disease as part of their World AIDS Day coverage. Writer Joe Franco, intrepid journalist that he is, took the time to both interview me and actually watch most of my videos, if you can imagine. In his piece he manages to discuss AIDS, community, comedy, drug addiction and drag. In other words, it’s a fair representation of what you get around here on a regular basis. My mom loved it.
Tuesday, November 15th, 2011
It was my distinct privilege to serve as host and M.C. for a second time on The HIV Cruise Retreat, the labor of love by openly HIV positive travel agent Paul Stalbaum of Cruise Designs Travel. Paul has become the go-to man for gay travel groups ” in addition to the HIV cruise he organizes a gay cruise and even a gay bear cruise ” and he says without question that the HIV cruise is nearest and dearest to him.
As Paul and my fellow co-hosts planned the cruise events over the last few months, I was amazed by the level of detail and care with which Paul approached the task. Then again, he’s been actively involved in the HIV community since setting up and facilitating the earliest support groups in Ft Lauderdale nearly 30 years ago. His heart is in this.
It may seem curious that so many people living with HIV would spend their vacation time and money on an vacation alongside over 200 others living with the disease. But our common issue is inspiring and even a source of humor and fun.
The happy vacationers come from all walks of life and across the country, and many of them hail from smaller cities where they don’t have this type of fun social outlet for people with HIV. It’s pure pleasure being in their company.
After an opening cocktail reception (Princess Cruise Lines accommodated our large group by giving us exclusive use of various venues around the ship), hosts Nate Klarfeld and Grover Lawlis moderated an AIDS 101 presentation for the sprinkling of cruisers who were fairly newly diagnosed.
But on to the parties! This year there were two bashes: The Mad Hatter Party, where guests were invited to get creative with their headgear (I wore a crown made entirely of flip-flops), and The Blue Party, which asked the revelers to interpret the color in any way they chose. The creativity at both did not disappoint.
My comic alter ego Anita Mann (near right, in an odd, mutual chest grope with one of the passengers) made her Cruise Retreat debut this year, hosting The Blue Party and ensuring I would never date anyone on the ship, once they witnessed Anita in all her peculiar glory.
All sorts of fun events sprang up throughout the week, such as an improv class led by host Jonathan Goldman, who also provided mud masks for our day on the Aruba beach (a sight in itself I assure you). Paul also arranged our own excursions in each of the ports, so we could snorkel or tour bat caves as a group.
We had so much fun with our own events and yet the ship itself offered nearly nonstop entertainment ” a casino, live shows, games on deck, and one of our group members even won the highly coveted Karaoke contest!
On our last day at sea I facilitated “Mark’s Poz Time Machine,” a multi-media review of the last 30 years of HIV. It featured images and video clips along the timeline, but relied on audience members who fleshed out the years by sharing their experiences. Thanks to their recollections and candid memories, it was a bittersweet and enlightening event. I believe so strongly in the power and importance of telling our stories and sharing our history living with this pandemic. I’m so grateful for the contributions of the attendees.
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.
After all, you don’t really need a cruise ship as an occasion to wear flip-flops on your head.
As always, my friends, please be well.
Thursday, November 3rd, 2011
This is a rather personal blog video, there’s no doubt about that. I’m 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 please allow me to offer you a different Mark than you might be used to, unplugged and exposed.
The last few weeks have been tough, I won’t lie to you. My nine-year relationship came to an end, and I’ve found myself feeling some self pity and fear ” that is, when I slow down long enough to catch up with my own emotions.
My schedule has been fast and furious, and now things are even busier as I make plans related to the breakup. In January, I will return to my beloved Atlanta, where a strong support network of friends awaits me with open arms.
Until then, I’m lucky to have friends like David Fawcett (seated at right, in our silly video opening), who also happens to be a therapist. Everyone should have a friend who’s a mental health counselor, if you ask me. David serves as one of the panel of experts at TheBody.com, as well as writing his own blog with helpful messages related to our emotional well being.
In this, the newest video episode of My Fabulous Disease, David and I sit down for a very candid talk about my fears and even some of my unhealthy thought patterns, some of which have been with me for a very long time.
Thanks for watching, my friends, and please be well.
Can someone be a self-described “sex addict” porn star and also a role model? Well, I won’t be nominating Mason Wyler for a GLAAD award this year, but I do appreciate the fact that he is candidly discussing his sex life as a man living with HIV. In an interview on PositiveLite.com by Bob Leahy, Wyler is casual about his newly acquired HIV status, and doesn’t believe there’s any connection between watching bareback porn and actually doing it (excluding, well, himself I suppose, since he admittedly likes “nasty bareback sex”). “Porn is a form of entertainment,” says Wyler. “It doesn’t and shouldn’t have any more influence on someone’s actions than say… music, movies, or video games. I think most guys participate in bareback sex in some capacity regardless of what porn they watch. We’re only human.”
Frank remarks like that one have won over some people. Writer Michael Burtch, in a July 2011 opinion piece, said this about the porn actor. “Mason Wyler has quickly become one of my favorite, openly HIV+ porn stars. When he writes ‘I don’t need someone to talk to, I need someone to fuck me’ on his blog or summons up the complexities of HIV by succinctly stating ‘it sucks.’ I totally get where he’s coming from and toast his post-AIDS sensibility.”
Thursday, October 27th, 2011
Panama City, Florida, with its sugar sand beaches and busy tourist trade, is affectionately considered the Redneck Riviera. Folks from Alabama and its neighbor states make the trip down Highway 231 and straight into the Florida panhandle, breezing through a stretch known as Watermelon Alley, where locals sell fruit and souvenirs along the asphalt in hopes of sidetracking some of the cash the drivers have saved for their weekend adventures.
But, if you were to turn northeast from Panama City, venturing further into what could be accurately called “the sticks,” you would eventually come upon the town of Vernon, home to the rustic retreat center Dogwood Acres. And it was here, deep in the woods, that I recently spent a weekend with thirty gay men from rural Florida to talk about gay community and men’s health.
The participants taught me a surprising lesson that wasn’t about AIDS or the state of gay rights. As deeply felt as those topics are to me, something else, something completely unexpected, came up during our time together. And it made me re-evaluate life choices of mine that go back more than thirty years.
Sponsored by Okaloosa AIDS Support & Informational Services (OASIS) and
fashioned from the ManReach retreats in Colorado, the weekend asked us all to examine what (community) meant, and how to find it even when living in rural areas, as these men do.
We sat in circles and shared laughs and a few tears. We hiked, ate quiche and slept in cabins of unvarnished plywood. I was invited to the event to lead one of the workshops, and was the only attendee who lives in a large metropolitan area.
I became fascinated by these out, proud, engaged gay men from towns with names like Cottondale and Chipley and Lake City, towns that require several magnifications on Mapquest before you can find them. How could they possibly feel free to be themselves, to be fulfilled, to be happy? Their answers shamed my presumptions.
“I lived in big cities,” said Rick, who left one in 1985 to live on a thirty acre ranch in Altha. “I’d been diagnosed with AIDS and was given 18 months to live, and knew I wanted a different life, out of the city. I would have died there if I stayed too long.” Rick and his partner grow their own vegetables, care for horses and goats, and dote upon their two pigs, Pork Chop and Lily. “It’s a quiet, natural way of life,” he says.
David lives in Fort Walton, and offered a simply reply to my question about feeling alone in such a small community. “Isolation can happen anywhere,” he said plainly. “I’m open about being gay. I don’t hide. It’s those that try to hide and are not honest about themselves that people have problems with, if you ask me.”
But when explaining their choice to live in small towns, one reason trumped all others. “Family is important,” Marcus told me, as if he was surprised anyone could believe otherwise. “Roots are important.” Marcus left his hometown of Bascom long enough to attend college in Pensecola, but returned to live on his family’s peanut farm.
“This was not some kind of tradeoff for me,” Marcus said. Nor was he particularly concerned about his romantic options. “You meet people in other places nearby, larger cities. But having a boyfriend isn’t a priority right now. My family will always be.”
“I live in my father’s house,” said Ken, who lives in Wellborn, “and I take care of my mother.”
Mother. Family. The words sent a low current of guilt through me, bringing back memories of my last, dramatic days of living at home and how very far away my life has taken me ever since.
Did I leave Bossier City, Louisiana because of my life ambitions, or did I flee? The truth is a little of both. After a scandalous year of bursting out of the closet during my senior year of high school in 1978, all the gossip about me was wearing on my family. I knew I was causing some embarrassment. Only days after graduation I moved to New Orleans for college, and subsequent moves — Houston, Los Angeles — pushed me further and further away from them.
Maybe I kept a distance, geographic and otherwise, out of some deep shame, as if it would simply be better for all concerned if I stayed away. Or perhaps it was pre-emptive.
I’ll leave before you tell me to leave.
Through the years I collected a patchwork of close friends, and I even adopted gay catch phrases like “we choose our own families” because maybe it’s true. And then again, maybe I was comforting myself with substitutes.
When I tested HIV positive in the 1980′s, the stretches between visits grew even longer. I couldn’t bear the thought of household dilemmas — Would they watch which drinking glass I used? Should I hold the baby? — so I decided to sit out those years by visiting less, even if it meant dying a thousand miles from my nearest relative.
But make no mistake about it, my exile was self imposed. Never had anyone in my family rejected me or suggested I wasn’t welcome. They received my visits home enthusiastically, and with acceptance and kindness towards whatever boyfriend I brought along.
If anything, my visits were such a happy event that I wondered what my family was like when I wasn’t around. Who really got along with each other, who preferred American Idol over Dancing with the Stars, that sort of thing. But when you’re visiting from across the country only once a year or so, you don’t get a sense of the day by day. No one ever gets annoyed or loses patience with you. And something about that always made me feel a little sad, as if I were company rather than family.
It was the rural gay men at the retreat who gave me a glimpse of what life might have been like, had I stayed. Minus the goats, of course. And the picture they painted looked simply wonderful.
As fate would have it, I left the men’s retreat and flew home to Bossier City for a visit. As I write this, Mother is reading the morning paper. One of my brothers has come by to join us for coffee. I’ve tried to be good about loading the dishwasher and doing chores to keep Mom off her feet.
When I presented Mother with my theory about having abandoned family in order to follow my gay destiny, she dismissed it with a smile. “You had places to go,” she said, “and everyone has a life to lead.” It never occurred to her that her love couldn’t travel whatever miles lay between us.
I haven’t started to annoy her at all, unfortunately. But I do know who she wants to win the mirror ball trophy on Dancing with the Stars.
Wednesday, October 19th, 2011
Last night I kissed a straight guy full on the lips. Then he tenderly put his arms around me and kissed me back. Tonight I’m going to do it again.
It sounds likeâ€¦ conquest. Or breaking a taboo. At the very least it fulfills the fantasies of many a gay man.
And it makes me wonder why.
The object of my affections is a man named Travis, and he plays my lover in a play we’re performing about a gay couple doomed by drug abuse.
Travis is most certainly straight, judging by the dorm room condition of his dressing area, his raunchy jokes and the effortless masculinity he possesses and that I can only approximate.
At an early rehearsal, long before any kissing would ensue, the director motioned me aside to share some surprising words.
“Let’s take our time working up to the kisses,” said the director. He lowered his voice a little. “Travis has never kissed a man. He’s straight.” It sounded like a condition.
And in a way, it was. It immediately colored how I acted around him, on stage and off. The play covers our courtship and as we rehearsed I felt another type of courtship happening. Was he watching me, thinking that’s the guy I have to kiss? Was I masculine enough? Did he think I was cute? Did he even care if I was attractive or not? Was he disgusted at the thought of touching me?
Obviously he was comfortable enough to take the role. But to be honest, he was nervous and it showed. I finally got the nerve to say something about it during a break.
“So Travisâ€¦” I began. “You’re straight and you’ve never kissed a guy I hear.”
“Yeah, yeah,” he said. “Sorry about that.” He was actually apologizing for being straight, and I felt like doing the same thing for being gay. “I guess it’s an issue for me but I’ll get more comfortable. I did a nude scene with a gay guy before, but I wasn’t playing gay and we didn’t kiss or anything.”
This man was on stage naked and found it easier than kissing a guy? I would French kiss the entire cast and crew of “Ugly Betty” before you would find me dangling uncovered on stage.
Bringing it up helped immensely. We not only joked about his “condition,” but we also discussed mine: HIV. It allowed me to engage in some basic HIV prevention education with someone who might not otherwise get candid answers to his concerns. Yes, he knew you couldn’t get it from kissing, but hearing it definitively made him more at ease.
We made a deal that we would start kissing when we no longer needed to hold scripts, and when that time came, I didn’t hesitate. And bless him, neither did he.
It was a brief, perfectly ordinary kiss. And it was done.
Once the occasion had passed I think we both realized it was much ado about nothing. But it got me thinking about why the fact he is straight made the idea of kissing him somehow moreâ€¦ exciting. Why? It may be as simple as wanting what you can not have. And that’s a common desire.
It’s the other implications that bother me. Do I see a straight man as innately more appealing than myself? As better, as a more authentic specimen of Man? That would suggest I think of myself as less than ideal because of my sexuality.
Whatever the reasons, it’s not the only preconceived ideas I had about my straight co-star. I questioned if he could pull off the gay thing. Or would something, like his macho pride or his clueless heterosexuality, prevent his performance from being “authentic.”
But something happens every performance that surprises me and shames my prejudices. This lumbering straight dude who bristles when I call him “sweetheart” offstage becomes an affectionate, giving lover onstage. His eyes smile at me. He pulls me closer in our bedroom scene. He shows a sensitive, willing and playful vulnerability.
It has been an enlightening experience. I now realize how little faith I had in his talent, much less his humanity. I’m not alone. Half the cast is gay, and almost all of us play multiple roles in various sexual combinations. Between our sincere desire to understand our characters and getting to know each other, the backstage chatter runs somewhere between Dr. Phil and Jerry Springer.
We’ve all learned a lot. I learned that if something got in the way of portraying a gay couple on stage, it wasn’t the straight man’s phobias.
It was mine.
(This posting is from the December, 2007 archives, during a theater stint in my beloved Atlanta, where I will return to live in January. On another note, I thank everyone for your messages of concern and support over my recent breakup; they have sustained me during a difficult time. — Mark)
I was familiar with studies showing that attractive people tend to get favorable treatment in our society, but did you know that your likeability can affect the quality of your health care? A new posting on Klick Pharm’s blog “Digital Rx” shares a study which finds this to be true. “As an educated and knowledgeable contributor to the process the e-patient must bring forward what he or she knows,” says writer Brad Einarsen, “but it seems that it is important to do it in a collaborative and, for lack of a better term, friendly way.”
This week in pop sleaze reports, Ashton Kutcher is still fending off rumors of a tryst in a hot tub, while his wife Demi Moore showed up at her latest movie premiere looking ghastly; her stick-thin figure reignited concerns about her health and drug use. But among all the salacious reporting was a terrific article by Jennifer Morton of POZ Magazine that carried a simple question: “Dude, Where’s Your Condom?” wanted to know why Ashton, according to the US Magazine story by his one night stand-er Sara Leal, engaged in what we gays call barebacking. “Quite frankly, whatever happens between Ashton Kutcher and Demi Moore is their business,” writes Morton. “But if Leal’s account is true and he is having unprotected sex with strangers, he’s risking a whole lot more than his marriage.”
Wednesday, October 12th, 2011
“I’m not in love with you anymore.”
He said this at the dinner table as he made the first cut of his steak, a beautiful ribeye he had grilled to perfection. I put down my own knife and fork and stared at him.
“This isn’t new, or else you haven’t been listening,” he said, a bit wary of my gaze. “You knew I wasn’t happy a year ago. And we’ve just ignored it.” He took a bite and I hated him for it, for having the digestion for this.
I had dropped the butter, that’s how this started. I had been setting the table and I dropped the butter and it made a mess and the dogs were licking it up and he got mad. But it was an accident so I got mad too because he always seemed angry and I told him so and then I provided a litany of complaints about his moodiness and then he sat down to start eating his steak and
and if I hadn’t dropped the butter we wouldn’t be having this conversation and I could keep pretending we were still in love with one another.
“Mark. I care about you. You know that. But this isn’t working.”
Twice, I wanted to say. Twice this hasn’t worked. In our nine years together, we had tried this twice. The first breakup was the result of my disastrous drug abuse. During our first four years together, I became an increasingly deceitful, outrageous mess. When at long last my pitiful lies were exposed and I checked myself into a drug treatment program, he ended it.
That time, that was the bang. This steak and baked potato dinner was the whimper.
I could feel the emotion swelling inside me and didn’t feel like being the first to cry, so I left the table for the bedroom. As I began heaving deep, guttural sobs I realized I was watching myself, from a distance, like a performance. I saw the way I held my body, arms wrapped tightly in a hug, knees bent from the force of the sobs. What’s my motivation? I found myself wondering, still in the midst of it. Why am I crying? How do I really feel about this?
No sooner had I asked myself these questions, tears streaming, that I posed another. And it was far more manipulative.
How should I play this, exactly?
There were so many options. The shocked and devoted lover. The vindictive injured party. The delicate, recovering addict, shaken to the core by the breakup.
I indulged in this sick game of posturing for only a moment, but it was long enough for me to spot my disease on display. It was my drug addict mindset, always looking for an angle, always trying to deflect blame or skirt responsibility or come out ahead. Despite three years of sobriety, that mindset still enjoys hijacking my emotions.
Mark, I muttered, my face wet with tears, stop it. You crazy fuck.
After the first breakup, he and I didn’t talk much. I moved back to Atlanta and, after some false starts, I finally got a foothold on my recovery. Life opened up again. I created My Fabulous Disease. I rediscovered my joy.
We began speaking tentatively to one another, then more often, and as I approached my first year of sobriety we finally admitted we still loved each other. It was such an unexpected turn of events, and so achingly romantic, that we both followed our hearts completely. I returned to Florida and we resumed our life together, minus my drug use and the dramatic sideshow that went with it.
And yet. And yet.
Within a year, we knew. We tried counseling, which only reopened old wounds and created new resentments. Something unspoken told us to stop the sessions, to not reach the finish line with so much misplaced anger. Instead, we coasted silently for another year, and we looked away.
The postscript had been written, like a paper holding an obituary for a movie star that will probably die soon. They’re just waiting to print it.
And now, despite my philosophical approach to this, my faith in my sobriety and my gratitude for my friends, I have moments when I am crushed with fear. Being alone. Starting over. Dating. And then there’s the HIV.
HIV likes giving a certain zing to relationships. It makes starting one rather tricky, what with the disclosure and the sexual negotiations and the vague fearfulness on either side. It loves ending them as well, but not always in the way you might think.
When HIV treatment drastically improved fifteen years ago, there were people celebrating the world over about their sudden renewed health and vitality. And they often marked the occasion with surprising pronouncements. “I’m going to live another thirty years,” one would muse to the partner across the breakfast table, “and not with you”
Thankfully, my HIV status had no role in the breakup. But it will surely become an issue as I navigate whatever romantic life awaits me.
I dried my face and walked from the bedroom to face him again. I knew what was true, and I held on to it tightly, unwilling to play this scene for effect or advantage. And I finally grasped what an amazing, unlikely gift had been offered to me.
We should have broken up like this the first time, I realized. It should have been this way, and now it can be.
This time, I can do this gracefully.
He was sitting at the sofa and looked up to me, sadly, hopefully, and I sat down across from him. There was a moment of mutual assessment, and we saw the truce in each other’s eyes. Some of the stress melted.
And we began to talk.
Tuesday, October 4th, 2011
During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be two video episodes that remain a true highlight of My Fabulous Disease.
What might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiringâ€¦ or a complete bore.
I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.
We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.
When “You Gotta Have Friends” was posted on TheBody.com on April 22, 2009, it became my most popular episode to date and received a flurry of comments from across the globe. So many people loved seeing a group of men with HIV supporting one another and having that level of honesty. For many viewers, simply seeing friends with HIV living happily was an inspiration.
They loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. Viewers loved the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team” of physicians and family to combat his disease.
As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.
That would happen a year later, when “The Real Poz Guys of Atlanta” was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,” and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.
There’s no doubt that I will do another episode with my friends again sometime, but I wanted to update you on their lives as they are today.
Eric, who famously declined to discuss his status with most people because “I’m Southern. We don’t talk about such things,” reports that his life is getting even healthier. “I quit smoking after 32 years on tobacco, I joined a gym, I got a trainer, and I have a new consciousness on eating,” he says. “At this rate, I’m going to live forever.”
Eric is also glad that his Mom remains one of his biggest supporters. But that wasn’t meant to be for Craig, who has lost the mother he so lovingly described in our first episode. “I am still recovering from that ongoing blow and the indescribable loss” Craig told me. “She was one of my best friends and it is still hard to really accept life without her in it.” Craig continues his work as a leading voice for gay men of color and HIV prevention.
The grief is something Eric can relate to, considering the loss of his partner Maxwell, about whom he shared in the second episode. “I don’t want to forget him,” Eric says now. “It’s not really sadness, but more a sense of him that stays with me.”
Antron has stopped writing in the black journals he brought to show and tell, and uses his laptop these days. That will come in handy for the young writer, who has a new project consisting of poems, short stories and rumination entitled Ayo: Lost and Found.
The advice that Craig had for Antron to carefully consider “who he lets into his life, and into his bedroom” hasn’t been lost on Antron, who tells me, “I have a deeper responsibility to value myself more and form a beautiful relationship with me first before pursuing any one.” He is planning to move to New York in January, and maintains a blog for his writing.
The dating life that James was negotiating in both video episodes has slowed, and for some challenging reasons. “I seem to have developed a fear of discussing my HIV and HepB status with potential dates,” he says. “I’m back on interferon for another 48 week treatment.”
The grueling treatment hasn’t affected his work as a massage therapist so far, but James is vigilant about the potential effect on his recovery from drug addiction. “Friends are so important right now, making sure I don’t isolate and relapse like I did during the last interferon treatment. I am blessed to have some really great friends.”
And that sentiment is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.
Do you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.
In the meantime, my dear friends, please be well.
Tags: culture, family, gay, help others, hiv, physician, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 4 Comments »
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment ” and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?” that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions ” cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more ” and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values ” sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,” such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,” there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televisedâ€¦ on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,” the sperm bank’s director said. “I do not think you chose a redhead, unless the partner â€” for example, the sterile male â€” has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.” It ain’t easy being orange.
Tuesday, September 20th, 2011
According to family lore, my arrival at birth with a full head of orange hair was met with shock and awe. My five older siblings ran the gamut from blond to dark brown, but they otherwise lacked my peculiar genetic mutation. Although the hospital nursery staff was abuzz with delight, my own family debated whether the color would last while they double checked the identification tags.
It lasted. In fact, the color bloomed like a Van Gogh painting. Before long I would learn the price of being different — and how intense childhood ridicule can be.
Look, it’s Freckle Face Strawberry! Howdy Doody. Bozo. Opie. I didn’t know whether to chop off my hair or hide underneath it. Only little old ladies and a few teachers seemed to appreciate it, but their cooing and stroking — they always needed to touch it, like a lucky charm — never endeared me to the bullies at school.
When puberty hit and the startling orange hue crept further down my torso I was beyond mortified. How could my body play such a cruel joke? Did this adolescent sissy really need another reason to be kicked and taunted? I actually made it through two years of junior high gym class without once taking a shower, usually by fiddling around at my locker — folding and arranging my clothes, feigning trouble with my combination lock — until it was safe to get dressed.
When I came bursting from the closet while in high school, I managed to finally celebrate my red hair along with my sexuality, and reveled in both. I mastered every hair product known to man, blow drying and spraying my head into a Farrah Fawcett extravaganza before a night out at the local gay bar. I discovered the men who loved redheads, and at last, I’d found the ideal purpose for the trait that once humiliated me.
It even became crucial to my vocation, during a brief stint in my twenties in television commercials. Casting directors saw dollar signs on my head, and I became the freckled pitchman for everything from McDonalds to Popeye’s to Barq’s root beer. I treated my hair as a gay Samson might, with the latest gels and shampoos and conditioners, and in return it made me money and got me laid.
Whatever I became through the years, this single aspect of my identity pre-dated everything. Before the writer, before the AIDS activist and the drug addict and the actor and the childhood sissy, I was a redhead. From the very womb.
And then, not quite. Sometime in my thirties, the color began to slowly drain from my scalp. The orange and reds eventually surrendered to a strawberry blond, and even those tones became weaker, like watering down a pitcher of Kool-Aid, as my fiftieth year approached.
It must sound ridiculous, but I felt the loss deeply. We had been through so much together, my red hair and I.
I tried to take heart in having, whatever the color, a full, thick head of healthy hair, guaranteed for life by the family gene pool. That is, until a few months ago, when I stood in the shower and felt strands of hair sliding down my face, in a massive march from my head to the drain. After decades taking HIV medications, I had begun a new treatment regimen and its woeful side effects were ruthless and immediate. Within weeks my hair was thinner, dulled and brittle to the touch.
One of my private, most selfish fears has been realized. I have AIDS Hair.
But while removing clumps from the shower drain is a jolt to my vanity, it isn’t the trauma it might have been. After living with HIV for nearly thirty years, I’ve witnessed how creative it can be in its cruelty, down to the slightest of indignities. The sudden damage to my hair has been worrisome, I’ll admit, but part of me knows that it had long since served its purpose. There is something correct, even poetic, in this twilight of the redhead.
Years ago, as I began rebuilding my life after years of drug addiction, my therapist made a withering observation. “You’ve got no second act, Mark,” he said after one of my self-absorbed ramblings. “You make a nice first impression. But then what? Not much.”
The work that I’ve done in the years since his pronouncement have taught me the value of more important traits, of lending a hand or paying attention to friends or standing up for our community. And this evolution appears to have swept away one of my most stubborn sources of willful pride.
The last decade has given me the gift of other, more meaningful assets. They lie beneath, away from the gaze of strangers and first impressions.
My best features are now visible only to those who really know me. And they are just beautiful.
Sometimes I blurt out a blog posting that belies my supposed serenity and enlightenment, like the rant I posted on The Bilerico Project (“For God’s Sake, Put Your Shirt On”) about gay guys who can’t seem to keep their clothes on when posting pictures on mainstream social media sites like Facebook. Pecs and traps and biceps? On glorious display. The friends who are beside them in the photo? Cropped out. Guys will even chop off their own faces, as not to distract from the wonder that is their abs (and, as we all know, it’s not the friends you keep, but the abs you maintain). Anyway, I had some fun calling them out about it, and the comments have been kind. Well, except for the twenty-something that claimed I was just jealous I wasn’t sleeping with young hotties. Umm, ouch.
My favorite HIV/AIDS online resource, TheBody.com, has just opened a brand new section on the importance of drug adherence and tips on maintaining your regimen. As part of it, I was asked to produce some short “Day in the Life” videos of people living with HIV and how they fit their pills into their schedule. It was terrific to produce a video about Damaries Cruz of south Florida (right), who shares her misgivings about starting therapy at all, and her collaborative relationship with her physician. And the story of Tree Alexander is an inspiration, as he works to maintain his treatment regimen even during a period of homelessness. The reaction of his large family to his HIV diagnosis was wonderful and astounding: they threw him a “stay healthy” party!
Tags: acting, Aging, culture, family, gay, gratitude, help others, hiv, meth, recovery
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 11 Comments »