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Posts Tagged ‘gay’

The Relentless Affections of Amy Ferris

Tuesday, July 7th, 2015

“We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented and fabulous?’ Actually, who are you not to be?” — Marianne Williamson

The first time I met Amy Ferris, several years ago, she cupped my jawline in her hands and gave me a kiss full on the lips. There were none of the usual pleasantries or the polite distance maintained by a new acquaintance. Instead, she kept my face in her grasp and she told me I was incredibly important. And a hero. Those are the words she used.

Amy Ferris Pic 2Her eyes – green, filled with wonder and a thousand miles wide – never released their grip on mine. There was no escape from her relentless affections. It was an entirely unnerving experience.

I responded to that first meeting as any reasonable person would. I doubted her enthusiasm and her strident belief that I am all that special. No one is worthy of so much fuss. And it did cross my mind that Amy Ferris might not be, well, for real.

It turns out that Amy is a perfectly functioning human being who believes that you, and I mean you, you there reading this, are amazing beyond belief and have the potential to change this world. Or, as she might write in one of her morning Facebook postings, “You. CAN. Change. This. Fucking. World.”

She has demonstrated her powerful talents many times over as a celebrated author and screenwriter. Her smashingly successful book, Marrying George Clooney, became a rallying cry for women everywhere who were facing down middle age and needed Amy’s funny, dirty, and emotionally raw chronicle of a “full term in menopause prison.” In her most recent book, Dancing at the Shame Prom, she curates stories from women who unburden themselves of secret, shameful events. Amy may be a loving earth mother, but she isn’t afraid to cut to the bone.

Shades of Blue CoverLast year, Amy asked me to contribute to a new book she was editing. By then she had become an intimate of mine – there is no choice, really, it is part of the social contract when you meet her. Amy believed, fervently of course, that I had something to offer Shades of Blue: Writers on Depression, Suicide, and Feeling Blue, an anthology that would tackle the subject through first-person accounts and help those suffering from depression.

I harbor epic self-doubt, so being included in a batch of well-known writers in a major fall release brought my uncertainty charging forward. Amy convinced me otherwise, of course, and her belief isn’t simply encouraging. Five minutes in her company is intoxicating. You wonder if you should shake it off and then hope you never do.

My essay for Shades of Blue, “Suicide: A Love Story,” is an intimate and explicit glimpse into the saddest, darkest days of AIDS. It recounts the night my brother, Richard, helped his terminally ill lover kill himself, and the destructive grief that haunted Richard for the next several years.

Amy responded to my piece with grateful emails and Facebook posts of high praise, writing that she couldn’t stop “ugly crying” and was as convinced as ever that the book will open hearts and change lives.

I have stopped questioning the sincerity or utter authority of Amy Ferris when it comes to these things. We define visionaries only in retrospect, as if we couldn’t possibly be watching someone extraordinary in real time. What if powerful people don’t all live somewhere beyond our reach but right here, in our circle of friends? What if that person might be you?

Knowing Amy, especially when I revisit our time together and her seductive certainty, helps me believe in myself more. It makes no sense to doubt that Amy Ferris might change the world when she has already changed mine.

At my wedding this year, Amy radiated her usual joy, kissing everyone in sight like a bee pollinating in the height of spring. When Amy kisses me now, I kiss her back, and I hold her embrace for as long as the woman wants.

I caught her attention at the reception and invited her to sit with me so I could make an introduction. “Amy, this is my brother, Richard,” I said. “I wrote about him in my essay for your book.”

The realization of who Richard was, the tortured story from his past and his present day joy and resilience, washed over Amy in a transparent swell of emotion. Her eyes filled with tears.

And then, Amy Ferris reached forward and took my brother’s face in her hands. As she looked at Richard with poignant recognition, her fingers lovingly caressed him in a familiar, healing embrace.

Mark

p.s. Shades of Blue will be released by Seal Press this September. You can pre-order your copy here.

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Posted in Book Review, Family and Friends, Living with HIV/AIDS, My Fabulous Disease, News | 1 Comment »

Five Reasons to Take the HIV Test Right Now

Monday, June 29th, 2015

Sometimes it’s helpful to get back to basics, and there is no more basic, effective tool to fight the HIV epidemic than to encourage testing. How long has it been for you, my friend? Here are five important facts about HIV testing that I hope will convince you to get busy and get tested — again.

1. You could be HIV positive and not even know it.

According to the Centers for Disease Control (CDC), one in eight people with HIV in this country don’t know they have it. Some estimates are higher. With 50,000 brand new infections every year in the United States, it is absolutely crucial that you know your status.

 

2. Knowing your status is one of the very best ways to stop the epidemic from growing.

No matter your HIV test results, taking the test means you are already doing your part to protect yourself and others. If you test negative, you will know you haven’t put anyone at risk – and it will probably encourage you to keep making smart decisions. It might also be the wake-up call you need to re-assess your risks or to consider pre-exposure prophylaxis (PrEP), a medication proven to greatly lower your chances of becoming infected.

If you test positive, you can take advantage of a variety of medications (with fewer pills and side effects than ever) that can reduce the virus in your body to undetectable levels. Science has proven that people with HIV who have an undetectable viral load are not transmitting HIV to their partners. Getting people with HIV to undetectable levels is a huge factor in slowing the epidemic–not to mention keeping your own body healthy and ready for more action.

Yes, getting testing can be scary. But so is having HIV and not treating it. Ask any gay friend who survived the 1980’s, when there weren’t effective medications. It wasn’t pretty.

 

3. An old HIV test result is even worse than an outdated Grindr photo.

When was your last test, and how many risky things – unprotected sex, drug or alcohol use, wild nights out – have you done since then? Being confident of your status is about being consistent.

The CDC recommends an HIV test for everyone between the ages of 13 and 64 as part of routine health care. For those at higher risk – that would be gay men like me and those with drug addiction histories – a test at least twice a year is recommended, especially if your bedroom dance card has been full or you’ve been partying.

4. Getting tested is easier than ever, and you have plenty of choices.

Boys, do you have options. Choose one and get ‘er done:

  • Visit Get Tested and enter your ZIP code.
  • Text your ZIP code to KNOWIT (566948), and you will receive a text back with a testing site near you.
  • Call 800-CDC-INFO (800-232-4636) to ask for free testing sites in your area.
  • Contact your local health department or HIV service agency.
  • Get a home testing kit (the Home Access HIV-1 Test System or the OraQuick In-Home HIV Test) from a drugstore.

5. Everyone can make a difference. We can stop HIV together.

Offer to go with a buddy to support him emotionally as he gets his results. Get tested alongside that sexy beast you’ve been seeing. Ask friends about the last time they took the test.

You could go the extra mile by sharing this article. Or visit the Act Against AIDS page for free materials, ads, videos, and banners you can share online.

Mark

(A version of this article appeared on Queerty for National HIV Testing Day. It is good advice all year long.)

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | No Comments »

The Visual AIDS Web Gallery “Proud to be Positive”

Monday, June 1st, 2015

June is Pride Month in the LGBT community, and I was honored to be asked by Visual AIDS to curate a “web gallery” on the topic. Immediately, I considered a question that I had once posed to readers of my blog.

If living with HIV is nothing to be ashamed of, is it something to be proud of?

Proud to be Positive ImageIt was a really interesting exercise to explore this question, and I hope you will head over to Visual AIDS to check out the exhibit online. Visual AIDS has thousands of images of artwork that represent the artistic expression of hundreds of artists living with HIV.

Of course, including these artists in my exhibit meant that I was assigning meaning to their work in a way they may never have intended. That’s okay. Art is gloriously subjective. In the image Self-Enforced Disclosure (Greg Mitchell, 2007) above, I could help but believe that a man who would tattoo his HIV status on his body did not do it to shame himself. But is it an act of pride?

From my curator statement:

No one should be marked or shamed for living with HIV. But, should someone claim to be proud of being positive, there is a lingering, implicit threat to the statement, as if their pride is untrustworthy, or worse, that having the audacity to feel proud of living with the virus must mean they want to infect everyone else.

We must reject the stigma that labels people with HIV as predatory, irresponsible, and lacking in self-respect. Being proud of all that we are is hardly the same as wishing it on others.

I hope you will check this out and share your thoughts.

Mark

POZ Surviving Life Itself Imagep.s. My writing is my artistic expression, and I really appreciate the response I have received to my essay in the new June issue of POZ Magazine, “Surviving Life Itself.” The piece reflects on my relevance, and lack thereof, as a 30-year survivor of HIV, and what kind of impact others like myself can have in the here and now. I hope you will grab a copy at your local clinic or pharmacy, or read it online here.

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »

The Odds of Love

Monday, May 25th, 2015

This post will never be as romantic as I would like it to be. And it could never be as romantic as the truth.

MarkMichaelAIDS2012On the evening of July 22, 2012, Michael Mitchell went to a mixer at Cobalt, a gay club in Washington, DC. The international AIDS conference was being held in town and Michael, a DC resident who had once served as director of an AIDS agency, decided on a whim to go check it out.

I had been shooting video all day for my conference coverage for TheBody.com, and thought the name of the mixer — Meet the Men of AIDS2012! – had an inviting ring to it.

During the reception Michael and I engaged in some mutual cruising from across the bar before Michael, God bless him, made his move. He walked up and introduced himself. Even with dance music thumping and a boisterous crowd surrounding us, he had an adorable humility about him that came through loud and clear.

So did the remnants of a southern twang, and we quickly established we were both southerners born in Alabama. We talked about his work implementing the Affordable Care Act and I was struck by how proud he was to help provide health insurance to millions of Americans.

“I’m a blogger, I write about HIV,” I said after a while.

“Oh, I know,” Michael answered, and he grinned. “I’ve been reading you for years.” He leaned in closer and flexed his dimples. “And you should get new pictures. You’re much better looking in person.”

I swallowed the line like a cold glass of sweet tea.

For the remaining nights of the conference, I sat at the foot of Michael’s bed and edited video footage into the wee hours while he slept. We toured the Global Village at the conference center and got our picture taken (above). We held hands, casually and almost immediately. When I left a few days later there were tears at the bus stop.

You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That’s hardly been the case. After several false starts and some complete misfires — primarily due to my own deficiencies — I had stopped believing I would ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?

“I am not a very good boyfriend,” I told Michael in a frank conversation early on, the kind that is meant to drive the poor guy away before he is taken hostage. “I’ve either been terribly immature or in active drug addiction. I’ve never been faithful, or even very thoughtful.”

“That doesn’t mean you can’t be,” he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing on the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael’s statement made perfect sense. Why couldn’t I just behave differently, and do it because I love Michael and to hurt him would crush me?

I am going to marry that man.

On June 6, a small group of friends and family will gather in the lush woods of Pennsylvania a few feet away from where I proposed on Christmas Eve (below). During our ceremony I will make promises that I have every intention, at long, long last, of keeping. Our vows will be emotional but a mere formality, because for three years we have adored one another without a single cruel word between us.

Engagement Horizonatal crop

 

When I was growing up I could never find anything in the house; the right socks, my school assignment, my lunch money. I would call downstairs to mother and complain that I just couldn’t find it, whatever it was.

“You haven’t found it yet,” she would reply with the preternatural calm that had mercifully accompanied her through years of raising six children.

My search has continued, for those things misplaced or never claimed to begin with, and I have actually found a few of them. Feeling comfortable in my own skin. Self-esteem. Sobriety. An acceptance of life on its own terms. An unselfish love for another human being.

The search may have been maddening, but the guidance of a good mom usually holds true.

I just hadn’t found them yet.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 5 Comments »

What It Feels Like for a Mom

Saturday, May 9th, 2015

“A boy’s best friend is his mother.”
— Norman Bates, Psycho

I was standing at the ticket counter of the movie theater and couldn’t believe my ears. They were telling me that Theater of Blood, with the great Vincent Price, was rated “R” and they were not letting me in without a parent. I was a horror-movie obsessed boy of 12, and was inconsolable. “I won’t look at any sexy stuff,” I remember pleading, “I just came for the gore!”

MomWith visions of decapitations fading like an old blood stain, I made the long walk back home and exposed my broken heart to Mother, who made one of the grandest gestures of my childhood: she took me back for the late show. On a school night.

It wouldn’t be the last time she had my back. Over the years she proved a trustworthy ally, and this was never more true than in the 1980’s, when gay men often lost their mothers — hell, their entire families – when an AIDS diagnosis was revealed.

Mom never abandoned me or my gay older brother, Dick (is there no gayer name than Dick King? Did my parents consult the Falcon Video Book of Baby Names?). I tested positive in 1985, and Mom immediately went to work educating herself on HIV.

My brother was spared HIV infection but suffered its cruelty nevertheless: his lover of 13 years, Emil, died of AIDS in the early, scorched-earth years of the epidemic.

In this video, I sat Mom down to find out things I’ve never asked before. What did she really feel when she found out I was positive? Did she believe I would die? Do mothers have a right to know? What advice would she offer other families? We also talk about the loss of Emil and the repercussions from it we still feel today.

Mom is no expert. She isn’t an AIDS researcher and she doesn’t march on Washington. She just loves her kids and tries to understand what is happening in their lives and how she can help. If your mother is like mine, we have a lot to celebrate (or remember) this Mother’s Day weekend.

Enjoy the video, and please, stay well.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »

IT’S NOT OVER: Signorile Rejects “Victory Blindness”

Monday, April 20th, 2015

On October 1, 1991, I joined furious LGBT protestors who took to the streets of West Hollywood, California. The newly elected Governor Pete Wilson, who had met with advocates during his campaign and assured them he would support AB101, a state-wide LGBT anti-discrimination statute, had just vetoed the bill.

Mark at Wilson ProtestThousands of us stalked the Governor at appearances he was making that day, burning him in effigy, chanting “LIAR!” and blasting the Governor to the media (right). We thought the State had elected an ally. What we got was a traitor.

But the controversy waned, as these things do. After a few days of raucous protests, I returned to my primary focus of AIDS advocacy. Pete Wilson weathered the storm, eventually signing a watered down version of the bill the following year, and was re-elected in 1994.

That was a lifetime ago, and the contrast between then and now would certainly suggest that things are a whole lot better for LGBT Americans. And yet, just when many gay men like me are making wedding plans and feeling encouraged by the winds of social change, a new book argues we must not settle for anything less than full civil rights and that we must reject the “covering” and “victory blindness” that has characterized our strategy in recent years.

Signorile picIn his book, It’s Not Over: Getting Beyond Tolerance, Defeating Homophobia, & Winning True Equality, award-winning journalist and radio host Michelangelo Signorile (left) makes a compelling argument for accelerating the fight for LGBT rights – and resisting the urge to grow complacent simply because nationwide marriage equality is within our grasp. In his first pages, Signorile offers a serious reality check:

We’re overcome by the heady whirl of a narrative of victory, a kind of bedtime story that tells us we’ve reached the promised land, that can make everything else seem like a blur. Even with the enormously positive developments (…) homophobia rages on in America, as sports stars are practically rewarded after spouting hate, as TV sitcoms still make gay and transgender people the insulting punch line, as the media respects and airs bigoted views of the “other side,” as businesses now flaunt a “no gays allowed” policy, as many workers fear coming out on the job more than ever, as federal civil rights protections seem further away than ever before, and as we are not often well served by a gay establishment that apologizes for and lauds political leaders rather than demanding action. Maybe it’s time to get rid of the bedtime story and wake up from the dream.

Signorile fears a backlash against LGBT people akin to what women experienced when a post-feminist belief that “the battle was over” led to setbacks on abortion rights and other gains women had made. This kind of “victory blindness,” Signorile writes, can crush our progress and debilitate our advocacy efforts.

Signorile is a shrewd social critic. His 1997 book, Life Outside, made quite an impression on me. It was an indictment of “the cult of masculinity” among gay men, examining the post-AIDS culture of circuit parties, steroids and dance floor drugs – in other words, everything I happened to be doing at the time. Recognizing myself on its pages made it more than a trenchant read; it was a shot to the heart.

ITS NOT OVER JACKETIt’s Not Over takes a broader and more political view, pulling back from gay culture to the basic human right of LGBT people to live and love freely in this country. Signorile believes we are complicit in the growing threats to our civil rights because we keep settling for scraps when we should demand the whole banquet. And he isn’t afraid to call out people and organizations (you might want to duck, HRC and GLAAD) who suck up to national leaders like star-struck teens, celebrating incremental change when, Signorile contends, it is time to be bold and uncompromising.

The book overflows with wrenching tales (culled from news reports and guests interviews from Signorile’s SiriusXM radio program) of teenage suicides, unfair workplace firings, the punishing effects of “religious freedom” bills, and violence against LGBT people. The sum of these stories paints an America quite unlike the one we may think marriage equality will create.

Signorile maintains that victory blindness is lowering our guard when strong advocacy is needed most. He applies the notion to nearly every scenario of half-hearted advocacy and it is a compelling argument – including its application to the HIV crisis. The rhetoric of “an end to AIDS,” while new infections mount each year among gay men and an estimated one-third of transgender women are HIV positive, is victory blindness.

Another recurring theme in the book is the concept of “covering,” a term Signorile credits to author Kenji Yoshino (Covering: The Hidden Assault on Our Civil Rights). Signorile writes:

Yoshino defines “covering” as an attempt to downplay difference, making it palatable or at least inoffensive. Prevalent among women, members of sexual and racial minorities, and disabled people, covering becomes particularly strong, Yoshino argues, when people believe they have achieved the rights and recognition they’ve sought, and begin to fear losing them (emphasis mine). It’s an attempt to fit in and be “team players” under the assumption that the playing field is now even (…) I would argue that, by pleading for more magnanimous treatment of our opponents, gay thought leaders were unconsciously applying the covering demand to the LGBT equality movement as a whole.

Throughout his book Signorile calls out the practice of covering and his strong case becomes easy to apply to our own lives. When we try not to rock the boat by not insisting on legislation that might actually protect us once and for all, when Mitchell & Cam engage in a relationship indistinguishable from the other characters on Modern Family, when we describe ourselves as “straight acting,” or when we choose what t-shirt slogan to wear based on where we’re headed, we are covering.

Beyond the litany of personal injustices outlined in the book, I was most angered by Signorile’s painfully accurate depiction of contemporary media, where homophobic crackpots are trotted out during any discussion of LGBT issues and allowed to make ignorant, scientifically disproven statements by virtue of their representing “the other side.” Nowhere in media – with the possible exception of FOX News – would so-called experts be allowed to spout discriminatory and hateful speech about racial minorities, but the same respect isn’t granted to LGBT people. Signorile is fed up with it and his takedown of this media practice is epic.

In his proposed plan of action to address all of this, Signorile aims very high. His path forward includes teaching self-defense (a practical and self-esteem tool that has served women well but has been largely ignored by LGBT people), providing LGBT history courses in public schools to de-stigmatize LGBT people and highlight our accomplishments, and settling for nothing less than full civil rights on the federal level. “Incrementalism is dead,” he writes.

It’s Not Over will get your blood pumping, which is exactly Signorile’s point. We haven’t been mad enough or demanded enough, not in a long time.

Mark

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Posted in Book Review, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »

Spilling My Guts at the ACT UP NYC Long-Term Survivors Forum

Wednesday, April 15th, 2015

ACT UP has always intimidated me. In the 1980’s, while working at LA Shanti to provide emotional support to those dying of AIDS, I doubted my activist cred while watching the dramatic, inspiring actions of ACT UP. Everyone has a role to play, of course, but I so admired the courage and laser-focused anger of ACT UP, as evidenced in the Oscar-nominated documentary How to Survive a Plague.

ACT UP NYCSo it was with excitement, yes, but also a great deal of trepidation that I accepted an invitation to speak at ACT UP NYC’s first town hall forum on AIDS long term survivors last November. I certainly qualified, having tested in 1985. But what could I possibly offer a room filled with activists who had literally defined the word empowerment and had stomped their way across New York City during the most ravaging days of AIDS and beyond?

The forum was held at the NYC LGBT Community Center, in the very room where Larry Kramer had founded ACT UP decades earlier. I bought an ACT UP button at a side table, with tears in my eyes. The sense of history was palpable.

Any doubts about the relevance of addressing long term survivors were answered by a packed room. The program included presentations by Graham Harriman, Director of the HIV/AIDS Bureau, Mark Brennan-Ing of the ACRIA Center on HIV & Aging, and popular local gay therapist Scott A. Kramer.

When it came my time to speak, to offer my personal perspective on a lifetime with HIV, I abandoned my note cards and the story came pouring out of me. My voice quivered the entire time. I cried and told my secrets and my shame and my grief in ways I have never revealed on my blog.

Ed Barron Mark ACT UP NYCThe room responded with warmth and acceptance. Afterwards, iconic ACT UP members whose names I recognized greeted me and thanked me (like Ed Barron, at left). It was one of the most nerve-wracking and proudest days of my life.

OUT FM featured my remarks recently on their weekly radio show on WBAI/NY, and it is through their courtesy that I am able to share this recording of my presentation. It includes a little adult language here and there (sorry, Mom!).

Our most effective tool as people living with HIV, and as long term survivors in particular, is simply telling our story. There is such power in the personal.

My deepest gratitude goes to ACT UP NYC for everything, both then and now. Thanks for listening, and please be well.

Mark

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 8 Comments »

The Night Miss America Met the Biggest Star in the World

Friday, March 20th, 2015

It wasn’t easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.

Daniel Warner hotAt 26 years old, with my red hair and freckles that had not yet faded, I wasn’t used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel, one of legions of people who had abandoned whatever career they had planned and went to work building support programs for the sick and dying, did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.

My new mentor and friend quite literally embodied Shanti’s mission to provide a non-judgmental, compassionate presence to our clients, many of whom were in the final stages of life.

Daniel was also our secret weapon when it came to fund raising. Whether shirtless in a dunking booth, dressed in full leather regalia, or spruced up to meet a major donor, it was tough to resist his charms. He knew his gifts, organizationally and otherwise, and offered them liberally for the benefit of our fledgling agency.

As time went on, Shanti grew enormously but Daniel’s health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.

LilyTomlin Lipsynca Credit Ron GalellaIn 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.

Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, Bruce Vilanch, and AIDS icon Michael Callen were making their way through the gauntlet of cameras in the crowded media room. I had tried to no avail to convince our headliner Bette Midler to make herself available to the expectant press, but as I stood in her dressing room pleading my case, she firmly declined, explaining that she had an early morning call for the filming of the television remake of Gypsy. I had tried to insist until she waved me away and started removing her panty hose right in front of me. I nearly tripped through the doorway during my frantic retreat.

Back up in the media room, one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway. “I didn’t know he was going to be here,” he said with wide eyes. “I mean –“

“Who?” I asked. On my God. Tom Hanks? Richard Gere?

“He’s with Miss America, Mark,” he said. “They’re right behind me.” We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.

Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.

I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.

Daniel Warner Leanza Cornett 93 Karen Ocamb“Ladies and gentlemen,” I said. “Miss America 1993 Leanza Cornett, escorted by Mr. Daniel Warner, co-founder of the Los Angeles Shanti Foundation.”

The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America’s companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.

Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed – glorious, joyful, defiant – in the blazing light of the room.

That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.

And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door. “Just one more, Mr. Warner?” one suddenly called out. “Miss America! Just another?” The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.

Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.

“Boss!” I said to him as they exited the room. “I didn’t know you would be here. It’s just… so great.”

He winked at me. “I’ll be around,” he said. “I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!” The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.

Only months later, I was at my desk in Atlanta in my new position as director of a coalition of people living with HIV when I received a phone call.

“Mark, this is Daniel,” said a weakened voice. “Monday is my birthday, and I thought that might be a good day to leave.” Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.

Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.

Mark

(This story is adapted from my book, A Place Like This. Photo credits: Daniel Warner by Jim Blevins; Lily Tomlin and Lypsinka by Ron Galella; and Leanza Cornett and Daniel Warner by Karen Ocamb.)

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 8 Comments »

The First Man Cured of HIV to Join the HIV Cruise Retreat

Monday, February 23rd, 2015

The annual HIV Cruise Retreat, commonly referred to as “The Poz Cruise,” will set sail this November 8-15 aboard the Ruby Princess, departing Los Angeles and cruising the Mexican Riviera cities of Mazatlan, Puerto Vallarta and Cabo San Lucas.

This year, though, there will be a somewhat ironic special guest on board: Timothy Ray Brown, the first man to be cured of HIV.

Timothy Crop 2“Timothy and his partner will be joining us, and we’re thrilled,” says cruise director Paul Stalbaum, a longtime HIV survivor and travel agent who began organizing the cruise over a decade ago. “He will participate in a presentation and Q&A on cure research and share his story with us. His personal grace and his public education efforts since becoming ‘the Berlin Patient’ are deeply admired. I know our passengers can’t wait to meet him and have some fun on the Mexican Riviera.”

Brown, co-founder of the Cure for AIDS Coalition and Cure Report, maintains that his identity hasn’t really changed since his cure in 2007, the result of a stem cell transplant for the leukemia he was battling at the time. (The transplant donor had the CCR5 gene mutation that blocks HIV from entering human cells.)

While the procedure hasn’t been successfully duplicated in other HIV patients precisely, it has led to advances in gene therapy treatments that incorporate what was learned from Brown’s case.

“Remember, I was HIV positive twice as long as I have been cured,” Brown says about joining the Poz Cruise. “I still consider myself part of the HIV community. I wouldn’t have it any other way.”

“There’s something special that happens when so many people living with HIV are together,” says Stalbaum of the hundreds of cruise articipants. “All the social walls that divide us just fall away. Our happy group of poz cruisers, who are often joined by their negative partners and family members, aren’t concerned with HIV status or age or appearance. It creates an environment where true friendships—and, yes, even some romance—are free to bloom. Our group watches their friend list on social media explode after every cruise.”

OLYMPUS DIGITAL CAMERAThe HIV Cruise Retreat brings together people living with HIV, their loved ones and allies for a week of exclusive theme parties, private excursions and educational events. While not a fully chartered ship like RSVP or Atlantis, the parties, events and even dinner arrangements for participants are exclusive.

Otherwise, says Stalbaum, “we mix with other people, just like in real life. And we’re holding hands and feeling proud. We usually commandeer one of the pools on the first day, and it’s quite a sight to watch the other passengers realize we are a colorful group indeed. A lot of the women on board ditch their husbands to hang out poolside with us instead. We’re a lot more fun.”

This will be the first time in seven years that the cruise has departed from the West Coast, and it’s expected to be a sold-out cruise. Special group cabin rates are available until Feb. 28. More information, including video blogs from past cruises, is available at HIVCruise.com or through Paul Stalbaum at (954) 566-3377.

This article was written by Mark S. King and originally appeared in Frontiers Magazine in Los Angeles. Timothy Ray Brown photo: Scott Taber. Cruise tubing photo: Brian Molenaar.

(Building community among those of us living with HIV is a passion of mine. I realize that although the cruise is reasonably priced it is also out of reach for some of my readers, and I hope you will understand my enthusiasm for supporting this event. This will be my 5th year to volunteer as MC of the cruise — I pay for my expenses like everyone else — and it has become a yearly vacation that I truly look forward to. I hope you will check it out! — Mark)

PLUS…

cloudlandIf you are gay, HIV+ and in recovery, have I got the perfect retreat for you. The POZitively Fabulous weekend retreat is now in its 3rd year and growing by leaps and bounds. Created by and for HIV+ gay men in recovery, it offers fellowship, workshops, speakers, and plenty of time to enjoy the gorgeous Cloudland Canyon State Park in Georgia. I’ve attended and it was terrific. Get all the details at SoberPlus.com.

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Probing My Anal Phobia

Tuesday, February 17th, 2015

My fear of all things anal began when I was an early teen. My older brother David took great delight in bursting into our bathroom to startle me, especially if I was on the john. And, since I was a pubescent redhead, his sudden visits included a lot of laughing and pointing.

I was mortified beyond belief. To this day, I must be sure no one is in the house, and then close and lock the bedroom and bathroom doors before I can properly relax. And I live alone.

But you can’t avoid everything anal if you’re growing up gay. Not if you want to do the really fun stuff.

Thus my conundrum as a youth: exploring the pleasures of my tush while fighting the terror that something stinky might be going on down there. And I suspect I am not alone in this particular anxiety.

I discovered soon enough that if someone had serious intentions in regard to my backside, I couldn’t simply rely upon a bran muffin and a Hail Mary to be properly prepared. God forbid I would, you know, not be… well, you know. This ongoing fear had a habit of wrecking the mood and the evening.

My exclamations during sex were usually panicked calls to turn the lights up, so I could carefully inspect the situation. Or a plea to stop altogether. “Okay, that’s fine, no wait!” I would cry out. “Am I okay down there? I mean, is it… okay go ahead… no hold on! Are you sure I’m…?” I was usually so involved with my protestations that I would hardly notice my date gathering his things to leave.

There are cleansing products meant to address this situation, but they require a certain comfort level with your own body and a little patience, meaning, they were incomprehensible to me. But I tried my best.

Drugstore enemas always felt too clinical, like something a nurse should be administering so you could “move your bowels,” a phrase I hope I never have to hear again, much less type.

But never fear. Leave it to gay men to popularize the “shower shot,” a long hose which screws into your shower head and ends in a narrow nozzle, just right for sliding up your bum for a thorough internal rinse.

The modulation of this instrument, however — and I cannot stress this enough — is of utmost importance. Too little water pressure and you’ve got a dribble with little cleansing effect. Too much, and you’ve just inserted a pressure washer into your ass that could peel the paint off a building.

I was first introduced to this contraption in my early twenties, when my first-time date invited me to visit the bathroom to “rinse out” while he relaxed in bed and waited. I stepped in the shower and surveyed the dangling metal hose. I turned on the water. I considered how it all might operate, and I made my best guess, standing there for God knows how long, hose inserted and whistling a happy tune.

I must say in my defense that no one had ever explained the device to me, much less how to gauge the input versus the output.

That poor, unfortunate man. He had really pretty designer sheets, covered with a gorgeous blue and white pinstripe blanket that I can still see clear as day. Such a lovely bedroom. That is, until a few passionate moments later, when all of it was soaked with a solid gallon of spoiled water that had been percolating in my poopchute, exploding from me in a streaming rush that looked like the wake of an outboard motor hurtling across Lake Erie. The word “apocalyptic” comes to mind.

Only as I matured did I realize I had options (and I will now introduce cute baseball analogies to illustrate my point). I discovered I did not, in fact, always have to play catcher, and I stepped onto the pitcher’s mound with great enthusiasm. But as much as I enjoyed the view from above, I worried still, that maybe I wasn’t holding up my end of the bargain. It was only after pitching a near-perfect game one day that my partner in the dugout helped me make a simple decision.

“Mark,” he said. “Why don’t you just stick to what you do well?” And it was this generous assessment that gave me the confidence to hang up the hiney hose forever.

Yes, that’s right. I’m now a dedicated top. I’ll allow you a few moments of incredulous wonderment.

What’s even more amazing is my having a boyfriend who is not only loving and adorable, but absolutely expert at the exotic mysteries of booty sex preparation. It really is an impressive talent, if you ask me. Like walking on your hands, or spinning plates on sticks.

This is all to tell you, dear reader, that sometimes you must find solutions to your fears in order to take care of yourself. And sometimes you have to face your damn fears head-on. I was reminded of this recently when, at fifty-two years old, I had my first colonoscopy. I don’t think I have to explain my anxiety level going in to this procedure.

Everything checked out fine, thanks. I had heard the anesthesia they give you can produce some odd behavior, but other than proposing to the physician and asking the recovery nurse if they located my pet hamster, I behaved myself quite admirably.

The only side effect of my colonoscopy was a bloated feeling and a case of the gurgles. Well, and a few hours later I had the longest, most continuous release of gas I have ever experienced in all my days. I’m talking a minute plus, people.

I really wish my older brother David had been here. He loves that kind of thing.

Mark

(Artwork courtesy of Andrews’s Anus, via LifeLube. This piece was originally posted on my blog in January of 2013, but for some reason continues to be one of the most popular pages on this site. So don’t say I’m not giving the public what they want!)

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My Friends,
If I can face my deepest fears, so can you. Did you know that studies show people living with HIV have a higher incidence of “colonic neoplasms” (the polyps they are looking for during a colonoscopy), which should be checked out for cancerous cell growth? Anyone aged 50 should get a colonoscopy, and some protocols suggest that people with HIV start this screening at age 45. Please don’t delay. Call your doctor! (At right, a picture of my happy procedure team just prior to my colonoscopy.)

And speaking of rectal douching (and why not? We really should discuss this topic more, considering it is such a common practice among gay men), I cannot say enough about LifeLube, the blog created by the AIDS Foundation of Chicago to help gay men address sexuality and their bodies. They have an entire section devoted to rectal douching (did you know there are new douches that limit the amount of healthy bacteria removed?) and another feature, Andrew’s Anus, that provides engaging answers to the questions you’re afraid to ask. The blog is no longer active – meaning, no new postings – but there is a wealth of information here and you should definitely check it out.

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