Posts Tagged ‘gratitude’
The ‘My Fabulous Disease’ Holiday Spectacular!
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.
Mark
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 egg
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.).
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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 »
The Value of Asking for What You Want
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.
Mark
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(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)
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PLUS…
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.’â€
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.
Tags: culture, family, gratitude, help others, hiv, politics, recovery, Sexuality
Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 6 Comments »
The Long Road Home from Relapse
Tuesday, November 29th, 2011
Florida highways have lovely rest stops. You would expect that from the Turnpike, where toll booths charge a premium every so often, but the manicured picnic areas continue even as you drive further north and onto I-75.
I’m on a cement bench in a concession area, chomping down corn chips and a Mountain Dew, away from the dog walkers and the families gathered at picnic tables, when I notice that my jeans are gathered sloppily around my waistline, cinched so much tighter than before. How much smaller has my waist become in such short a time? I wonder. One inch? Two?
People sometimes stroll near me on their way to the restrooms, and I keep my eyes down, afraid I might look too disheveled for their comfort, or worse, that my shame might be clearly written across my face. That they might see what I’ve done, and return a glance of judgment or pull their children closer.
The self pitying tone of these words doesn’t suit me. Pity is such a useless emotion at a time like this. Let me start again.
The drug relapse came over me like a sickness, as if I was coming down with something, slowly, over weeks. The breakup with my former partner last month in Ft Lauderdale had been cordial, and he and I continued living together while I made plans to relocate back to Atlanta. First, though, Thanksgiving would be spent with his family, as a final goodbye and a chance to show our unity — and of what remained of our broken love — during this trying time.
But my disease of addiction had already begun rearranging my thoughts, shuffling my priorities in a bid for dominance over the vigilant recovery I had practiced, proudly and successfully, for nearly three years. Small changes crept into my behavior, not about drugs precisely, but other, vaguely related habits that had once accompanied my drug use.
A return to the gym and a shallow fixation on my body. Smoking, a habit broken for two years, returned in secretive fits and starts. A feeling of entitlement — to do as I pleased, to eat junk or get laid — swept over me like a declaration of freedom that hid its true intentions in the fine print.
And then the clarion call became more explicit, as involuntary images of using drugs bombarded me, plaguing my sleep and my daydreams. But while my memories of life as an active addict had previously been reduced, finally, to dark and sinister snapshots of a pitiful existence, these new images were more seductive, promising euphoria, fast sex and most of all, a lurid escape from my own feelings.
When my former partner left town on business the week before Thanksgiving, the drug addict inside me made a break for it.
It’s startling, really, the speed at which a recovered crystal meth addict, filled with a sense of purpose and a devotion to helping others dealing with this disease, can be transformed into a selfish liar. About as long as it takes the first, transformative rush of the drug to enter your body.
But the images that promised everything delivered nothing. Or that is, they delivered the usual package of misery that I should have expected, from my own past experiences and the many, many stories of woe I have heard from other addicts.
Those images — the real ones I witnessed during my relapse rather than the counterfeit promises with which my disease had baited me — haunt me now. I don’t want to conjure them, the lesson has been received, but they roll on. Images of desperation, of blood and jeopardy and strangers with my fate in their hands.
The street crack dealer, with whom I am pleading to please return the keys he has taken from my pocket, who tells me he is going to “rent” my car for errands, who threatens me through a manic grin and all the while I am trying to convince him to please, please just give back the
You don’t need to hear this. This is mine to endure and overcome. Let me start again.
There are many motels sprinkled along the exits in Orlando, and I scouted out several before choosing one that allowed me to park directly in front of my room. With the car piled high with my belongings, I had to be sure no one would steal it. Despite the exhaustion of the previous week I slept fitfully, waking to peer out the window and survey any disturbance, fearful that my despair could multiply. The rolling stone of misfortune can gather plenty.
This long drive was unplanned, of course, the consequence of my relapse, when after days of not being where I was supposed to be and phone calls piled high with deceit, my former partner pegged my insanity and sent me a text from his business trip, asking me to leave before he returned. My disregard for our home, the dogs, and my personal safety was simply too much. A mutual friend arrived to care for the house. I would pack and leave within a day, to sit out the holidays with family in Shreveport, Louisiana, a thousand miles from Ft Lauderdale.
Even before his discovery, the awful realization of what I had done, how I had taken our gracious final days together and twisted them into something horrific, had actually spurred my relapse further, as I sought escape from my own wreckage. By the time his text appeared on my phone, the smoke was clearing, the fever had broken, but it was far too late.
The comfortable highways of Florida eventually gave way to the ruined roads of Alabama and Mississippi, badly spackled with tar, and my car rumbled with the thumpa-THUMPA-thumpa of their scarred surfaces. I wondered if the framed pictures in the trunk might break, if the towels I had wrapped them in might not be enough to
The towels. The guest room towels. They didn‘t really belong to me. It set off another round of worry, and I wondered if a new label might be added to my sadly recycled identity.
Drug addict. Liar. Thief.
I had turned back once already, when I had first driven onto the freeway before realizing I had his watch on my wrist, a watch I had always worn but wasn’t mine. I drove back to return it, and in the hour or so I had been gone, the quiet house had abandoned any welcome for me. I placed the watch on a table and locked up again. It felt like trespassing.
In Mobile, Alabama, I stopped again for the night and this time managed a full twelve hours of dreamless sleep. In the morning at the Waffle House, I ordered steak, eggs and hash browns, smothered and covered, and dismissed thoughts of what my trainer might think about my diet on the road.
Explaining my relapse is beyond me, beyond logic, and yet here I sit, trying to understand and explain. It maddens me, the choices I have made, and reminds me that the disease most capable of killing me isn’t HIV, it is drug addiction.
But this chronicle reeks of defeat, and I am not feeling defeated today. Let me start again.
The miles upon miles of endless highway give way to Louisiana, and Shreveport finally appears on a freeway sign. I relax into the anticipated embrace of family.
My tired car pulls into Mom’s driveway, and my brother — also gay and also an addict in recovery for more than a decade — greets me with an extended hug, and we begin the business of unloading the car immediately, as if to shoo away the evidence of my drive and the depressing reason for it. A guest room has been prepared, a closet cleared. For the next month, as I deal honestly with my tender wounds, this will be home.
Mother arrives from the hair salon, and her cheerful And how is my favorite redhead doing..? tells me that everything is going to be fine. She knows why I’ve come home, and she doesn’t require a single detail.
I’ve already begun the business of rededicating myself to my program of recovery, and there is pride in that. There is joy, in fact, once the truth has been told and the work to rebuild can begin. Not regretting the past, even the recent past, is a difficult job, but too much time spent looking in the rear view mirror hardly bolsters me for the road ahead.
I am grateful, to have regained my footing after a few terrible days, to have survived it, to have my freedom to make better choices. And I am filled with gratitude for the friends and family who have given me a precious gift.
They let me start again.
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(My best wishes and deepest gratitude go out to you, my friends. Thank you for your encouragement and your many kind comments. If you know someone who might benefit from this posting, who might think there isn’t a solution, then please share it. Love, Mark)
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PLUS…
I always have strange emotions about World AIDS Day, the annual commemoration on December 1st. It makes me feel a little like a professional drag queen having to contend with Halloween. Such a torrent of voices and contributors on “my” turf! But of course, that may be the point: to be re-energized and inspired by the many voices and news stories of others who might not be speaking up otherwise, and for me to realize that HIV isn’t mine alone, not by a long shot. The challenges it presents affects all of us, and calls out for the best in science, the best in our sense of community, the best of humanity itself. You’ll surely find many things online that resonate with you this World AIDS Day, so let me show you something you might miss. Love Light Romania provides support to people with HIV/AIDS in one of the toughest places on earth, but they have somehow found something beautiful in the tragic story of Alex, one of their clients who shares his life in a four minutes video filled with gorgeous photography of his journey. The simplicity of this video and his matter-of-fact telling of his story captures a beautiful sadness, and I hope you’ll take a look.
Tags: family, gratitude, help others, meth, recovery
Posted in Books and Writings, Family and Friends, Meth and Recovery, My Fabulous Disease | 56 Comments »
Sailing on the 2011 HIV Cruise Retreat
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.
Mark
Tags: aids, culture, drag, gay, gratitude, hiv, Recreation
Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 12 Comments »
Divorce, Stress, HIV… and no jokes.
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.
Mark
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PLUS…
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.â€
Tags: Aging, culture, family, gay, gratitude, hiv, recovery
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 19 Comments »
Playing the Last Scene of a Marriage
Wednesday, October 12th, 2011
“I’m not in love with you anymore.â€
He said this at the dinner table as he made the first cut of his steak, a beautiful ribeye he had grilled to perfection. I put down my own knife and fork and stared at him.
“This isn’t new, or else you haven’t been listening,†he said, a bit wary of my gaze. “You knew I wasn’t happy a year ago. And we’ve just ignored it.†He took a bite and I hated him for it, for having the digestion for this.
I had dropped the butter, that’s how this started. I had been setting the table and I dropped the butter and it made a mess and the dogs were licking it up and he got mad. But it was an accident so I got mad too because he always seemed angry and I told him so and then I provided a litany of complaints about his moodiness and then he sat down to start eating his steak and
“Mark?â€
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.â€
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…â€
Thankfully, my HIV status had no role in the breakup. But it will surely become an issue as I navigate whatever romantic life awaits me.
I dried my face and walked from the bedroom to face him again. I knew what was true, and I held on to it tightly, unwilling to play this scene for effect or advantage. And I finally grasped what an amazing, unlikely gift had been offered to me.
We should have broken up like this the first time, I realized. It should have been this way, and now it can be.
This time, I can do this gracefully.
He was sitting at the sofa and looked up to me, sadly, hopefully, and I sat down across from him. There was a moment of mutual assessment, and we saw the truce in each other’s eyes. Some of the stress melted.
And we began to talk.
Tags: culture, family, gratitude, hiv, recovery, Sexuality
Posted in Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 31 Comments »
The Twilight of the Redhead
Tuesday, September 20th, 2011
According to family lore, my arrival at birth with a full head of orange hair was met with shock and awe. My five older siblings ran the gamut from blond to dark brown, but they otherwise lacked my peculiar genetic mutation. Although the hospital nursery staff was abuzz with delight, my own family debated whether the color would last while they double checked the identification tags.
It lasted. In fact, the color bloomed like a Van Gogh painting. Before long I would learn the price of being different… and how intense childhood ridicule can be.
Look, it’s Freckle Face Strawberry! Howdy Doody. Bozo. Opie. I didn’t know whether to chop off my hair or hide underneath it. Only little old ladies and a few teachers seemed to appreciate it, but their cooing and stroking – they always needed to touch it, like a lucky charm – never endeared me to the bullies at school.
When puberty hit and the startling orange hue crept further down my torso I was beyond mortified. How could my body play such a cruel joke? Did this adolescent sissy really need another reason to be kicked and taunted? I actually made it through two years of junior high gym class without once taking a shower, usually by fiddling around at my locker – folding and arranging my clothes, feigning trouble with my combination lock – until it was safe to get dressed.
When I came bursting from the closet while in high school, I managed to finally celebrate my red hair along with my sexuality, and reveled in both. I mastered every hair product known to man, blow drying and spraying my head into a Farrah Fawcett extravaganza before a night out at the local gay bar. I discovered the men who loved redheads, and at last, I’d found the ideal purpose for the trait that once humiliated me.
It even became crucial to my vocation, during a brief stint in my twenties in television commercials. Casting directors saw dollar signs on my head, and I became the freckled pitchman for everything from McDonalds to Popeye’s to Barq’s root beer. I treated my hair as a gay Samson might, with the latest gels and shampoos and conditioners, and in return it made me money and got me laid.
Whatever I became through the years, this single aspect of my identity pre-dated everything. Before the writer, before the AIDS activist and the drug addict and the actor and the childhood sissy, I was a redhead. From the very womb.
And then, not quite. Sometime in my thirties, the color began to slowly drain from my scalp. The orange and reds eventually surrendered to a strawberry blond, and even those tones became weaker, like watering down a pitcher of Kool-Aid, as my fiftieth year approached.
It must sound ridiculous, but I felt the loss deeply. We had been through so much together, my red hair and I.
I tried to take heart in having, whatever the color, a full, thick head of healthy hair, guaranteed for life by the family gene pool. That is, until a few months ago, when I stood in the shower and felt strands of hair sliding down my face, in a massive march from my head to the drain. After decades taking HIV medications, I had begun a new treatment regimen and its woeful side effects were ruthless and immediate. Within weeks my hair was thinner, dulled and brittle to the touch.
One of my private, most selfish fears has been realized. I have AIDS Hair.
But while removing clumps from the shower drain is a jolt to my vanity, it isn’t the trauma it might have been. After living with HIV for nearly thirty years, I’ve witnessed how creative it can be in its cruelty, down to the slightest of indignities. The sudden damage to my hair has been worrisome, I’ll admit, but part of me knows that it had long since served its purpose. There is something correct, even poetic, in this twilight of the redhead.
Years ago, as I began rebuilding my life after years of drug addiction, my therapist made a withering observation. “You’ve got no second act, Mark,†he said after one of my self-absorbed ramblings. “You make a nice first impression. But then what? Not much.â€
The work that I’ve done in the years since his pronouncement have taught me the value of more important traits, of lending a hand or paying attention to friends or standing up for our community. And this evolution appears to have swept away one of my most stubborn sources of willful pride.
The last decade has given me the gift of other, more meaningful assets. They lie beneath, away from the gaze of strangers and first impressions.
My best features are now visible only to those who really know me. And they are just beautiful.
Mark
(I hope you’ll consider sharing or re-posting this, now or whenever you run across something here you appreciate. This blog has become a wonderful outlet and voice for me, and I must admit, I love new visitors!)
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PLUS…
Sometimes I blurt out a blog posting that belies my supposed serenity and enlightenment, like the rant I posted on The Bilerico Project (”For God’s Sake, Put Your Shirt On”) about gay guys who can’t seem to keep their clothes on when posting pictures on mainstream social media sites like Facebook. Pecs and traps and biceps? On glorious display. The friends who are beside them in the photo? Cropped out. Guys will even chop off their own faces, as not to distract from the wonder that is their abs (and, as we all know, it’s not the friends you keep, but the abs you maintain). Anyway, I had some fun calling them out about it, and the comments have been kind. Well, except for the twenty-something that claimed I was just jealous I wasn’t sleeping with young hotties. Umm, ouch.
My favorite HIV/AIDS online resource, TheBody.com, has just opened a brand new section on the importance of drug adherence and tips on maintaining your regimen. As part of it, I was asked to produce some short “Day in the Life” videos of people living with HIV and how they fit their pills into their schedule. It was terrific to produce a video about Damaries Cruz of south Florida (right), who shares her misgivings about starting therapy at all, and her collaborative relationship with her physician. And the story of Tree Alexander is an inspiration, as he works to maintain his treatment regimen even during a period of homelessness. The reaction of his large family to his HIV diagnosis was wonderful and astounding: they threw him a “stay healthy” party!
Tags: acting, Aging, culture, family, gay, gratitude, help others, hiv, meth, recovery
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 11 Comments »
How the Denver Principles changed AIDS (and health care) forever.
Wednesday, September 14th, 2011
You must know this, because it matters. Because it has already changed your life and you may not even realize it.
It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. (And among their number, the inspirational Michael Callen of New York City, pictured at right, and Bobbi Campbell of San Francisco.) They were about to do something that would change our response to AIDS — and health care in general — forever.
As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment†hadn’t yet been a part of the health care lexicon, it was about to be.
The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’â€
The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.†Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.
They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.
They demanded that physicians see their patients as “whole people,†and provide “accurate information.†They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.
They asked “all people†to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.
Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else†for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.
While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.â€
A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.
Longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event last year. He devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That work continues today, with a planned meeting of activists underway to map the criteria of the Index.
Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980’s and 90’s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.â€)
The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.
So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.
(When I was invited to participate in an “e-Patient Bill of Rights Roundtable” at a conference for internet-based health bloggers and web sites next week, The Denver Principles immediately sprang to mind. So why not revisit this part of our history as people living HIV/AIDS and their advocates? This is a revised version of my posting from May 4, 2010. — Mark)
Tags: aids, gratitude, hiv, physician, politics
Posted in Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 7 Comments »
Those Doggone Days of Summer
Friday, September 9th, 2011
July and August were almost frantically productive for me, and I’ve followed it by the longest period of, well, nothing, since I began producing this blog. Sorry. Sometimes an HIV guy just needs to lay around and catch up on Top Chef and Real Housewives (God bless you, Bravo).
Hopefully you caught my most recent videos, such as the my examination of activism in “Should AIDS Activists and Pharma Just Get Along?” (complete with red paint foisting), or the video update on my facial filler procedure with Dr. Gerald Pierone (very informative but not for the squeamish), or the helpful tips for saving money with the knowledgeable Jason King (right) of AIDS Healthcare Foundation, whom the camera adores, and about whom I am harboring a jealous resentment (I may be petty but my grammar is pristine). And finally, it’s always ironic when hours of video editing can’t compete with one written posting the comes straight from the heart, like my tribute to Facebook putting my life together again.
But moving on.
If anyone deserves being highlighted in the media for his commitment to HIV prevention, it’s Jim Pickett of the AIDS Foundation of Chicago. In a well-written profile of Jim in the Windy City Times, you can follow his journey from waiter to activist to the man touting rectal microbicides as the next best weapon in our HIV prevention toolbox (I keep finding myself wearing a sticker proclaiming “I have Rectal Pride!” after visiting his booth at conferences). I’ve admired Jim’s work for years and this fun profile explains why. “Expecting everyone to use condoms all the time is ridiculous,” said Jim in the article. “People don’t want to use condoms their whole life. As great as they can be, there are a lot of issues with condoms.”
At the recent 2011 HIV Prevention Conference in Atlanta hosted by the CDC, I was thrilled to meet some of the dedicated members of the HIV/AIDS prevention team. What was even more satisfying was seeing their new prevention campaign targeting black MSM’s (”men who have sex with men,” who don’t always identify as gay). To date, there have been limited data about the factors contributing to the high burden of HIV among black MSM, particularly those who are young – and yet the latest CDC data show that new infections among this group are increasing every year. Fortunately, the CDC is focused strongly on this population, and previewed a major new campaign being developed to increase HIV testing among black MSM – called “Testing Makes Us Stronger†– as the next phase of its ongoing Act Against AIDS campaign.
Thank God I’m clean and sober and alive today. If I was still an active crystal meth addict, I would have missed an astounding recovery conference during Labor Day weekend, which introduced me to some amazing people and strengthened my resolve to keep working to restore and rebuild my life. While I’m always coy about which method of recovery I have chosen (I don’t wish to promote one over another), I will tell you that my camp alter ego Anita Mann (left) wasn’t coy at all, and — get this — she actually sang live during one of the evening’s entertainments. Alas, neither she nor I sing very well, but the message of recovery is clear, and she shares some funny, wise words with the audience after her song. Watch the clip here, but be kind.
The emotion of “We Were Here,” the documentary about the darkest days of the AIDS epidemic and its effect on a group of gay men, can be felt just by reading the reviews, like the rave it just received in The New York Times. I’m almost nervous to see it because I know the trauma and grief it could summon, but I also know I absolutely must. If you can’t find it playing at a festival or cinema near you, then for goodness sake, go directly to Netflix or some other DVD rental site and put it on your list. I often speak of honoring the past — in fact, my favorite video on this site, “Once, When We Were Heroes,” recounts those days and is always worth another look.
My (healthy?) fixation on repairing my facial lipoatrophy (also known as facial wasting) continues, and I am pleased to report that I have begun treatments with Artefill, the “permanent facial filler” product, under the continued care of Dr. Gerald Pierone in Vero Beach, Florida. My past treatment with other products is well documented, but I’ve got to say that these results are well beyond those of Sculptra or Radiesse, truly. The bad news: Artefill is not approved specifically for lipoatrophy, so there are no patient assistance programs for those of us with HIV, making the treatment expensive (in the thousands of dollars). While I don’t expect many of my fellow HIVers can afford it, I felt compelled to share with you the very positive results.
I am the MC for the annual HIV Poz Cruise Retreat, set for this November 5-12 to set sail from Ft Lauderdale. There was such an abundance of fellowship and acceptance last year that I had to do it again. There are sometimes last-minute rooms and cancellations, so if you would like to check it out be sure to visit the web site. You can also watch my video blog from last year, which gives you a great feel for the event and the fun people aboard. Kudos to the dedicated Paul, a long time AIDS advocate and man living with HIV, who has shepherded the cruises for the last nine years.
Some of the most progressive events for building gay male community and preventing HIV are being developed in the Florida panhandle, of all places. On Monday October 10, I’m honored to be participating in the “Our Gay Generation” forum for gay men in Pensecola, which will explore what it means to be a healthy, satisfied gay man today by looking at our past and rededicating ourselves to one another. Sponsored by the Oasis Community Center (and Butch McKay, the formidable force behind the annual Positive Living conference), the forum transcends political issues like gay marriage, and focuses instead on personal satisfaction, community, and the value of friends. Later in the month, the same group will host a ManReach retreat for 40 gay men at a remote retreat center. Contact Oasis for more information on either event.
Whew! Okay, I’m caught up. Thanks for your patience, my good friends, and please be well.
Mark
Tags: aids, culture, drag, gay, gratitude, hiv, lipo, physician, recovery, Sculptra
Posted in Anita Mann and Acting Gigs, Family and Friends, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 8 Comments »
Outliving My Father
Tuesday, July 26th, 2011
The descriptions of his decline, in whispered calls from back home, had a dreadfully familiar feel to them. Weight loss at a frightful pace. Losing interest in the world. Suddenly looking very old indeed. Most gay men of a certain age have heard those words, have seen the patient, have buried the friend. This case was different, though. It wasn’t AIDS, it was cancer.
And the patient was Dad.
The disease had swept rapidly through my father since his initial diagnosis. The inevitable was approaching, but the territory was completely unfamiliar to my family, who hadn’t seen a death in more than 30 years. They were about to get a tour through hell. I have traveled it many times.
“Well, he’s lost a lot of weight,†Mom said on the phone, “and sometimes, he will say the same thing more than once. That does scare me a bit.†You think you’re scared now, I thought.
“Have you checked into hospice care?†I asked. It’s exhausting for a man in his thirties to care for a dying lover. Mom was 75.
“Well no, honey, I thought we could wait on that…†Her voice drifted.
Something inside me went on AIDS auto pilot.
“Call the doctor and ask about hospice care,†I practically ordered. “They can help avoid another hospital stay, Mom.†The family would do anything to prevent that scene again.
I flew home within days. Still no hospice care. My family was stunned into inaction, it seemed. Had anyone spoken to dad about getting nursing help, about his illness, about how everyone was dazed into speechlessness? Heads shook slowly, eyes looked downward.
After 15 years living with my own HIV infection, my medical choices — powers of attorney, “no resuscitation†instructions — had long been settled. Mom was uncomfortable with the decisions, much less the reality.
On my second day home, I found myself alone with Dad. He was bundled on the sofa, and whatever his thoughts, they seldom found words. His condition looked hauntingly familiar, leading me to a nonsensical conclusion. “Dad has AIDS,†my mind insisted.
“Can I talk to you about what’s going on?†I asked him.
“Yeah..?†he said weakly.
“This is really horrible Dad, and everyone is freaked out and doesn’t know how to act.†His eyes never left me. “Mom is afraid to ask for help. You need a nurse. Do you think that’s okay?â€
“Well… yes. I do.†He meant it. “Your mother… your mother works very hard.†I took his hand. “This is hard for your mother, I think…†he continued. “Your mother and I, we are one mind, together. One mind.â€
I had never heard anything so romantic from my father. He saw it in my face, and he found the sadness, too.
“Don’t worry,†he said, and his hand tightened around mine. “It’s okay. I’m all right. This is all right…â€
I wanted to say everything at once. Every declaration of love I had for my father, the retired Colonel who loved his family fiercely, laughed heartily, and equated only happiness with success.
“I will talk about you my whole life,†I said. “All the stories, all the things you’ve done for us… but how do I explain you to anyone?†My voice choked, and my attempt to properly organize my father’s last days was awash in unexpected tears.
I looked up and was stunned to see damp eyes staring back at my own. A tear escaped and rolled tentatively down and across his cheek, as if unsure of the path, so alien was the terrain.
We began words and abandoned them, floating silently in a moment I hoped could delay the inevitable. I thanked God for a gift that, in the distorted world of AIDS, I had wanted so badly over the years. I would outlive my father.
Only after having collected the courage before to say goodbye, to realize the fear and talk about it anyway, did I have the strength to address it with my dad.
This is not a story about AIDS. But it is a story because of it.
(This was originally published in The Advocate on May 22, 2001, but has never been posted to my blog. Thanks for letting me share it with you now.)
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PLUS…
In 2000, when Jo Jowett found five children dying of AIDS in a bare room in Romania, she knew she had found her life’s mission. She established Love Light Romania, providing services and end-of-life care to people living with AIDS throughout the area, and if this sounds like dire work, wait until you see the stark beauty of the brief videos created to highlight their services. Told through gorgeous photography and voice over, the first video is Jo with one young man in his last days, as she expresses her devotion to him and explains how the program began. My other favorite is of Marius, a Romanian man very much alive today as a result of loving care (he’s even friended me on Facebook!). The images of his life in Romania as a man with HIV are beautiful and unforgettable.
Do you ever wonder what exactly all that blood is for, when the draw it for your lab work? The dizzying assortment of tests and numbers give me a headache. Lucky for us, D. Gregory Smith has sorted it all out for us in a terrific piece on the Bilerico Project about all the most common labs tests for HIV patients (and trust me, it’s an exhaustive list). It’s a simple primer, printable and ready to take along to your next appointment, and staying informed like this has all sorts of benefits, according to Gregory: “…a proactive stance by a patient is more likely to decrease feelings of depression, helplessness and fear, and increase feelings of strength, health and well-being.” Check out his excellent guide.
For those of you keeping score of the Pre-Exposure Prophylaxis (PrEP) debate (whether or not we should embrace the notion of people taking meds prior to risk behavior, as a prevention tool) the latest points go to the pro-PrEP camp. Last week, Regan Hofmann’s searing blog post on Poz.com dismissed PrEP as an overly expensive pipe dream. But this week, Project Inform’s Director of Research Advocacy, David Evans (right), made his inaugural post on Poz.com by countering that, although he agrees with much of Hofmann’s thinking, there may be ways to make PrEP affordable and widely available, and these avenues are worth exploring. Among his many compelling arguments for PrEP, David took offense at Hofmann referring to PrEP as “a profit-driven sex toy for rick Westerners.” He responds, “Whether intended or not, this statement implies that some people in whom PrEP might actually be appropriate (can she possibly mean gay white party boys?) are somehow less deserving of this tool than others.”
Tags: family, gratitude, help others
Posted in Books and Writings, Family and Friends, My Fabulous Disease, Prevention and Policy | 12 Comments »