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Posts Tagged ‘recovery’

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 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 »

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 Video Series: The Real Poz Guys of Atlanta

Saturday, March 28th, 2015

Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know. At any rate, you will find all three videos of the series below.

During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be three video episodes that remain among my favorites produced for My Fabulous Disease.

Gotta Have FriendsWhat might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiring — or a complete bore.

I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.

We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.

Viewers loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. They swooned over the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team” of physicians and family to combat his disease.

As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.

That would happen a year later, when “The Real Poz Guys of Atlanta” was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,” and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.

When another year later we met up again, sparks flew. These guys were really getting the hang of this, because we discussed and revealed things like never before. From crystal meth addiction to our mothers, nothing was off limits. There’s even a (NSFW-ish) chat about tops and bottoms, modern gay sexual politics, and which one of us absolutely loves using the female condom. I love hearing my friends talk dirty for a good reason. And about reaching out for help when you really need it.

And having these conversations is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.

Poz Guys PicDo you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.

In the meantime, my dear friends, please be well.

Mark

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

Sean Strub and the Legacy of AIDS

Wednesday, January 28th, 2015

Before my interview with activist Sean Strub, author of Body Counts: A Memoir of Politics, Sex, AIDS, and Survival, let me share a revealing story.

It was late 2011 and my life was in shambles. The breakup of a long term relationship had sent me into a spiral, followed closely by a devastating drug addiction relapse. I had weathered the fallout and taken refuge at my mother’s home in Louisiana.

Sean StrubAnd then came a phone call from Sean Strub, founder of POZ Magazine and lifelong advocate for those of us living with HIV. We were acquainted but not yet close friends and the request he made during the call surprised me. Would I be willing, he wondered, to come visit him for a few weeks and help get his new HIV anti-criminalization effort, The Sero Project, off the ground?

Sean had read a blog posting I had written about my breakup and relapse, and must have known I wasn’t exactly firing on all cylinders. I was a recovering addict with a trail of wreckage in my recent past, and yet he wanted me to come work with him. Like, in his home.

Within days I drove 1,400 miles to his Pennsylvania town. I managed to get some work done but mostly I piddled around his home office, getting my bearings again while we traded war stories and gossip from across our desks. Sean was passionate about every topic and a great teacher on contemporary HIV advocacy issues.

Before long, the real purpose of Sean’s long distance invitation became clear to me. He didn’t really need much help, but he knew that I did. He saw someone with potential who would benefit from a little mentorship, encouragement, and a friend. And God, he was right. Our time together strengthened and refocused me. Since then, I have heard many stories about Sean Strub taking people under his wing and helping to lift them up to a better place.

My admiration makes it nearly impossible to objectively review his remarkable memoir, Body Counts. I am an unapologetic fan and grateful friend. That being said, you must finish reading this article and go directly to Amazon and buy his book.

Body Counts is one of the most wide-ranging and well written remembrances to come out of the AIDS crisis. It seamlessly combines the social, political, and sexual landscape of Sean’s journey. It moved me to tears more than once, and taught me a lot about what happened behind the scenes during the dawn of the century’s greatest public health crisis.

All that, and there’s a ton of great celebrity stories about people like John and Yoko (Sean was there the night Lennon was shot), Andy Warhol, and a host of colorful others.

Sean agreed to a conversation to discuss everything from his memoir to body image, sexual abuse, the legacy of AIDS, and the state of the HIV community today.

Here is that conversation:

Body counts coverBody Counts is such a marvelous achievement, Sean. So much history here, personal and otherwise, and witnessed from such close proximity. Thanks for not holding back the juicy stuff about politicians and celebrities!

For better or worse, politicians and celebrities are intertwined with the history of the epidemic, in ways both bad and good. My perspective at times is unusual–like when I was running the “Senators Only” elevator in the U.S. Capitol–and I tried to present the humanity, good and bad, of those I write about.

Also, in terms of the epidemic, it was a conscious decision and key strategy to exploit celebrities to gain attention and action in response to the epidemic. Elizabeth Taylor knew this better than anyone and she was amazing at getting others to join her in spending their celebrity capital on behalf of something important.

And you’re our tour guide through those years. I think your criticism of President Bill Clinton’s AIDS response might be surprising to people. Aren’t we supposed to love him?

Others have suggested that Clinton’s post-presidency focus on the global epidemic is an effort to atone for his failing in this regard during his presidency. When salon.com published an excerpt from Body Counts that was about the Clinton Administration, it generated a lot of nasty comments. It was the epidemic driving a generation of gay men out of the closet and into activism that ultimately was critical to electing Bill Clinton, yet as soon as he was elected it seems like the air was let out of our activist balloon.

In some ways I think we–as a queer community–are more effective as outsiders, where we had to learn to survive, than we are as insiders, where we haven’t been as welcome or skilled. When Clinton was elected, many of our leaders became insiders and didn’t take everyone with them.

I’m glad you’re not letting people off the hook. Was it important for you to save our AIDS history from those who might revision it?

Initially the impetus for writing Body Counts came from the realization that, as time passed, there were fewer and fewer of us around from the early days who could tell what happened first-hand. It was also a way of validating my own life. I didn’t grow up wanting to be an AIDS activist; I had other plans, but in the early 80’s my life was hijacked by the epidemic. Writing Body Counts gave me some understanding of why I made the choices I made.

But the more I dug into the history I also saw how those years have been misrepresented or misunderstood, particularly the role of people with AIDS and HIV. Grassroots community efforts are often dismissed, minimized or ignored.

Historical truth is always more complex than the simplified–and sometimes manipulated–version of popular history we are led to believe. The epidemic’s history has been, to an extent, commodified, rewritten to serve some agenda.

I think it is important to have as many first-person accounts, especially from people with HIV who were on the frontlines, so our experiences get documented and preserved. And as time passes, there will be more archives available, with documents from those years that will tell an even fuller picture.

As we get more perspective, the epidemic and our response to it, is understood in new ways and that’s a good thing.

The ongoing theme to your AIDS work, in fact, has been a respect and focus on people living with the virus themselves. You carry that banner fiercely.

I don’t think the LGBT community, or people with HIV, have gotten the credit we deserve for what we did in those early years. How we came together to love and care for each other was something remarkable. We should the world our very best face and what we did then should be celebrated and recognized as a model, worthy of emulation in many kinds of situations. I also know that it was other people with HIV who comforted me, educated me and enabled me to survive.

The book is a reclamation on your body — from shame about it, from infection, from the sexual abuse you suffered. Do you think it’s a common challenge for gay men to love their physical selves?

The title, Body Counts, is an intentional double entendre, referring to the loss of life from the epidemic, of course, but also my personal lifelong struggle for control of my body. It has had many enemies: the Catholic church which taught me that they owned my body, sexual abusers who exploited me, a government that sought to control my sexual expression, HIV itself and even the drugs to treat HIV. It has gotten better over time, but shame-shedding doesn’t happen in an instant, it is incremental and I suspect, for me, will be a lifelong process.

I can’t imagine revisiting some of the trauma you describe in the book, such as childhood sexual abuse and a rape by a roommate. Was it brutal to write?

I wouldn’t call revisiting those memories brutal, but it was at times emotionally draining. Ultimately, it was healthy for me to process pain, hurt, guilt and shame that I had carried for years.

You write that it took 20 years to recognize the rape for what it was. Do we have a problem as gay men seeing ourselves as victims of this sort of abuse?

When it happened I didn’t even think of the word rape as having any applicability to men. I was still so ashamed of my sexual desire and also conflicted about the degree of responsibility I bore for what happened. For many years I blocked out the sexual abuse and sexual violence I had experienced; it made me uncomfortable to think about because I didn’t think there was anything constructive I could do with those memories except feel bad about them.

Now I can look back and see that while I may have been precocious in some ways, I was incredibly naive and vulnerable in other ways. In the process, I not only forgave those who hurt me but I ended up, quite unexpectedly, forgiving myself as well.

You were absolutely on death’s door for a few years, and squeaked through in time for new medications to save you. And you were outright defiant about showing the Karposi’s Sarcoma (KS) lesions that covered your body during that time.

I think if more of my identity and self-worth had been found in my body I might have been more likely to pursue cosmetic treatments for the KS. And the objectification of bodies is practically in the DNA of gay culture. Even as I began to accept my own body, it was within a context that clearly told me the body I had wasn’t a gay ideal. I’m skinny, have no chest and am not especially athletic.

On the other hand, not conforming to that ideal, not being as invested in it, made it perhaps a bit easier when my body become so obviously ravaged by AIDS and, especially, Kaposi’s Sarcoma. Less of my self-identity was in my body, so its decline didn’t degrade my self-worth as much as it might have for others.

I didn’t treat the visible KS lesions because I knew there were no treatments that would slow their growth and I already spent too much time in doctors offices. That was almost unimaginable to many people who were horrified that I had visible lesions and took no steps to even disguise them with makeup.

I make the mistake of assuming people know that AIDS advocacy changed the entire patient/physician dynamic, or that our response to what we endured will forever be remembered. Obviously that isn’t necessarily so, and why books like yours are important.

There is an understanding that AIDS has been different, in many ways, and has had a profound impact on the culture, society, the healthcare system, drug development and approval processes, even geopolitics. I don’t think it is widely understood how different the epidemic might have been had it not been for the self-empowerment movement, or how truly radical those early PWA pioneers were.

While ACT UP has been an important part of my life and advocacy, so too has the advocacy that precedes ACT UP, that set the stage for our movement. That earliest history hasn’t been as well studied or understood and I tried to give some attention to those years in Body Counts. Randy Shilts’ And the Band Played On provide an important and detailed view of the early years from his vantage point in San Francisco; the story from those years in New York hasn’t been nearly as thoroughly explored. Also, And the Band Played On was written before ACT UP came on the scene.

When you first arrived at the offices of a coalition of people with AIDS, you write about having found a place you belonged, at last, even after having begun a business career and worked in politics. What about it struck you so deeply?

Total solidarity. I felt so welcome and safe that it enabled me to overcome the fear of stigma. That’s what I’ve tried to do for others ever since.

What are the greatest threats to people living with HIV today, or at least to the kind of empowerment groups for us that have been so important to you?

Lack of respect for the principle of patient autonomy. This is happening across the board, as public health becomes militarized, disease securitized and treatments more complex and costly. The concept of the physician as a healer, providing individualized treatment, has too often given way to the physician as an extension of and agent of the state and the pharmaceutical industry, treating populations instead of individuals.

You are known to be skeptical of pharma and caution that medication side effects are too often ignored. Some people might find that ironic, given that new medications saved your life. Is that fair?

I think skepticism about pharma, when it was pharmaceutical treatments that saved my life, isn’t ironic but common sense. Anti-retrovirals, like many medicines, are powerful treatments. Anything very powerful can be used in a negative or positive way; the more powerful the more important it is to be careful, cautious and skeptical.

Skepticism saved my life. Had I not been so skeptical, I would have taken more treatments that, in hindsight, we now know would have hurt me more than helped me. I am alive because I was lucky or smart or skeptical enough to refuse pharmaceutical treatments at one point, when they were strongly recommended to me by the medical establishment, as well as because they were available to me and I took them at another point, when I needed them.

The irony isn’t found in me. The irony is that a healthcare system that purports to heal and a scientific establishment that purports to be interested in discovery has so often refused to listen to or learn from those living with the disease. Had our voices been valued more highly, the epidemic would never have gotten as big as it has.

I’m a little surprised that your book is the first memoir by a major imprint about those early years in New York City and the early ACT UP era. What do you make of the recent interest on film about AIDS in the 1980’s, such as How to Survive a Plague and Dallas Buyers Club?

Enough time has past since the worst years that those who survived can reflect with greater objectivity. Many survivors feel compelled to remember the dead and bear witness to what we experienced. That has become a sense of obligation, even a compulsion, for many of us, particularly as we age and realize there are fewer and fewer of us around to speak first-hand about those years.

For many it is a delayed grieving; when friends were dying so fast and in such great numbers it wasn’t possible to fully grieve them. But we filed away that pain, to process later. Now it is later.

The explosion in cultural production in the last few years, the films you mention as well as books and exhibitions, is somewhat analogous to the cultural production following the Holocaust. Not so much in the 40’s and 50’s, but by the early 60’s it had started to grow dramatically. Yet 15 or 20 years past the worst of those days, the memories and words and testimonials start to come forth.

But even Dallas Buyers Club and other works of art haven’t done well with their bottom line. We might be taking a look back, but it isn’t exactly a highly commercial enterprise, is it?

No, it isn’t, to many people anything about AIDS is such a downer they aren’t interested. Many gay men have created lives that have protected them, emotionally, from the pain of the epidemic and they don’t want to be reminded of it.

But I’m not sure we would be in any better position in terms of addressing the epidemic if the books and films about its earlier years were enormously profitable. There is an historical record that, in time, will be vastly more important than how many copies or tickets are sold today.

Body Counts seemingly has everything, from Washington politics to brushes with celebrity to your own sex life, and the book had major endorsements. I will admit I thought it would be a bestseller, and rightfully so. Or at least it should have been.

I suspect every author wishes their book sold better and I’m no exception. But while I didn’t make the NY Times bestseller list, Body Counts has gotten excellent reviews — almost across the board — and hundreds of people who read it have contacted me with appreciative comments, which is cool.

The publisher early on told me she expected the book to have a long sale and she has been proven correct. It is getting assigned in college coursework and continues to sell, even though it has been a year since the original publication date.

College kids are studying your book? That has to be gratifying, and it sounds like the perfect use for your account of this history.

Yeah, that’s cool, isn’t it? I spoke at a dozen colleges and universities last year and found student audiences to be engaged, stimulating and helpful for keeping my own thinking fresh.

Strub_Body Counts_TP FINALThe cover artwork and even the subtitle of the book were changed for the paperback. Why?

The hardcover has a picture of me kissing Michael Misove, my partner who died in 1988 and the subtitle was “A Memoir of Politics, Sex, AIDS and Survival.” For the paperback, the photograph was changed to one of a young and cute me looking directly at the camera. The thought was that the picture of Michael and me, while very sweet, may imply the book is about that one relationship between these two men and if someone wasn’t interested in that they may pass on the book. The picture of just me alone wouldn’t be so narrow.

The subtitle for the paperback was changed to “A Memoir of Politics, Activism and Survival” in the belief that the word “AIDS” may turn off some buyers. That was weird, but I think probably true. My point was and remains to get as many people to read the book as possible, so I was supportive of any change that would help achieve that goal.

So what next for you? I know you’ve been doing a book tour and events.

I want to continue working to help people with HIV find greater agency and empowerment, particularly through support of and strengthening of networks of people with HIV. In time, I think the self-empowerment advocacy will start to blur the lines of specific distinctions between diseases and conditions; it will be about a broader movement to take back healthcare and choices about our health and bodies from the corporate grip that has been so damaging to the lives and health of many.

I’m increasingly aware of the march of time. Is it too soon to ask how you want to be remembered?

There’s no question but that time becomes more precious as one ages and for those of us, like you and me, who have been lucky to survive when so many of our peers did not, it only makes that sense more intense.

It is peculiar to think about how one would like to be remembered because, first of all, no one wants to be remembered for spending much time thinking about how they would like to be remembered. What is important is what I am doing today and if I’m doing that well, it won’t matter how I’m remembered.

I think I’m going to start this piece by telling people about your kindness to me after my breakup. Would that embarrass you?

I’m beyond embarrassment, I think. And I could not be more proud of our friendship.

(Thanks for reading, my friends, and please be well. — Mark)

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

About That GLAAD Media Award Nomination

Friday, January 23rd, 2015

 

For twenty-five years I have been writing about living openly as a gay man living with HIV. Along the way I have spilled secrets, opened up about sex and relationships, highlighted the work of those who inspire me, come clean about my history of addiction and recovery, focused my video camera on international conferences and the lives of HIV negative gay men, and have found myself in some hot water once or twice.

Crown Roses PicLiving out, loud and proud is an enormous privilege I don’t take lightly. There are countless people who don’t have supportive families or understanding workplaces or even friends to whom they can rely. And it is those people who are most often on my mind as I write this blog. Your comments and emails inspire and humble me, and that includes the criticism of my admittedly strong opinions. You make me think twice, very often after the fact, and you can be assured that you teach me.

So my nomination for Outstanding Blog as part of the national GLAAD Media Awards has me excited, flummoxed and feeling reflective. I wouldn’t be a good recovering addict if somewhere in my mind I didn’t feel unworthy. Like many of us living with a shame that never truly washes away, there is a part of me that feels like a fraud.

If you only knew me, it whispers, you wouldn’t accept me. You wouldn’t give me an award. Maybe you wouldn’t love me. It is the sad reverberation of growing up gay, of feeling socially damaged by HIV, of the guilt of having once turned to drugs to block my doubts and fears.

Today, I will not be bowed by misgivings and undeserved shame. I will even indulge my dangerous ego and admit that I’m terribly proud and feel like one of the Oscar nominees I track with religious verve. And that is the simple, elegant value of efforts like the GLAAD awards. They remind us that we’re okay, celebrated even, and it chips away at the internal homophobia we carry with us in quiet places.

The fact that the highly visible GLAAD Awards focus most notably on film and television depictions of LGBT people makes this situation all the more unreal. The glamour of it all appeals to every gay bone in my body.

Will there be a red carpet? Can I lose enough weight to walk it? Can I convince openly HIV positive fashion designer Mondo Guerra to lend me a jacket (I’m working on it)? Can I make a statement about how those of us living with HIV are crafting lives of joy and engagement and responsibility?

It might be more productive to shift the focus away from myself and share with you the other nominees in my category. They surely deserve that. GLAAD does us all a great service by bringing art and resources to our attention that may be unfamiliar to us. I’ve been stalking the other nominated blogs below and the inspiration to be found there has transformed a common platitude into a sincere fact: it is, without a doubt, an honor just to be nominated.

The Art of Transliness
The triumph of visible trans advocates like Laverne Cox makes headlines, but this blog provides insight on the ongoing, day-to-day challenges of the trans community.

AutoStraddle
My favorite blog name ever. This site devoted to queer women, or “girl-on-girl culture” as they describe it, is a hip blog mixing pop stories and stigma-bashing commentary.

Box Turtle Bulletin
Anti-gay rhetoric doesn’t stand a chance in the face of this site providing news, analysis, and fact-checking.

Holy Bullies and Headless Monsters
Lies in the name of God are still lies. This site analyzes and refutes the LGBT inaccuracies of religious conservative organizations.

Thank you, my friends. I have said that finding my voice through this blog has saved my life, and those words ring especially true today. And in case I don’t have the opportunity for an acceptance speech, allow me to thank the most important person now.

Michael, I love you. Being engaged to a man like you is the biggest reward of them all.

Mark

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 7 Comments »

The Disguised Blessings of HIV+ Poet Mary Bowman

Monday, November 10th, 2014

When Mary E. Bowman stepped to the stage five years ago at SpitDat, an open mic night in Washington, DC, she was 20 years old and terrified. She was about to perform “Dandelions,” her first poem to reveal a secret that her own family had long kept quiet: that Mary had lived with HIV since birth, the result of a mother addicted to drugs who died when Mary was only three.

MaryBowmanGrab“I had not memorized the poem yet,” Mary told me, “and the paper I held was shaking. It is usually kind of a loud environment, but when I started to read, the room went silent. That made it even more nerve-wracking.”

Mary was nervous about the audience response, about what they would say, and if any of them would even be her friend once her poem was done. She needn’t have worried.

“It was such a loving environment,” she said. “It was so accepting, like a family. When I was done, everyone applauded. I walked to my seat and a young lady was crying, and all she said to me was ‘thank you.’ I realized the poem wasn’t just about me. It was about other people, too.”

“Dandelions” explored her feelings about the mother Mary hardly knew, a loss that Mary has felt deeply her entire life. “I was eventually raised by my biological father,” Mary explained. “He wasn’t married to my mother. He would come to see me when I was a baby and find me on the sofa alone… and my mother out of the house.”

Mary’s father witnessed the scene “far too many times” and took the child home to his wife, who fell in love immediately and raised Mary as her own.

Mary’s talent lies not only in her poetic words, but the sheer passionate force of the emotions behind them. It’s impossible to watch her and not to be moved. She grabs you by the heart and doesn’t let go.

Today, Mary works in policy and advocacy at The Women’s Collective in Washington, DC, but only after spending her younger years without very much social support for her status. “My family was very quiet about HIV,” she said. “Even when I was at the hospital growing up, I didn’t have an outlet to talk about it.”

Things have changed. In addition to her advocacy work, Mary has performed at HIV conferences and for events such as AIDSWatch in Washington. Her work as a performance artist and poet is a unique niche among young advocates, but it is when working with other women that the loss of her own mother sweeps over her.

A lot of the women have drug addiction histories. They have had their children taken away. “They are my support system,” Mary says, “and it reminds me that my mother isn’t here. They tell me stories. I just wish someone had saved my Mom as well. She didn’t have the services available to her that they do now.”

Working with these women has been a melancholy gift to the young artist.

“I’ve been caught up in emotion several times, when performing for women,” she says, and their bond has become her only connection to a woman lost to time and sad circumstance. She pauses to consider the many faces of the women for whom she has recited “Dandelions.”

“They are my mother,” she adds.

Mark

Dandelions

A dandelion in the midst of rose bushes would stick out like a sore thumb to ignorant souls
But I know the road this dandelion endured
This weed that all gardeners want to destroy is more appreciated by God than any seemingly beautiful bush of roses
Though that misunderstood dandelion wont for long last
Let it be known that God gave it the role of the outcast for divine importance
My mother was a dandelion in the midst of roses
Ignorant of her purpose she uprooted her soul and unknowingly left herself for dead
It has been said that my mother when above the influence transmuted broken hearts into smiles
All the while dying on the inside
AIDS didn’t kill my mother
It put her at rest
Now this song bird whistles in the key of silence
And I the latter of five write poems documenting the struggle unknown to my family
The sickness she denied lies in my blood with a lesser value
People speak I don’t know how you can live with knowing nothing but owning the growing disease that your mother for so long fought
But see that’s the difference between a rose and a dandelion
Roses were created with thorns to warn hand approaching without caution
Dandelions were not given that option
But they were created by an all knowing God
And that all knowing God created dandelions with the strength to withstand ignorance and hatred
Dandelions live in this matrix of life understanding the price
Roses live like the world was handed
Dandelions take the world and won’t leave a rose stranded
But my mother died before she got the chance to realize that dandelions are blessings in disguise
She I dare say died before her time
That thought lingers in my mind conflicting my belief in the divine
My mama raised me in the faith that the day God sweeps you away is a day proclaimed way before the manifestation
But I can’t help but experience devastation knowing nothing about the woman who carried me toting guns in the defense of my father
It is even harder knowing nothing about her but knowing the reason the hospital has become my second home is because this dandelion
chose to roam with the buffalo
But I seek serenity in the fact that she just didn’t know
That she a dandelion was just as beautiful as a rose
And I will go forth knowing my purpose as a dandelion
This life is worth all the crying and all the dying I have to do just so someone in my shoes can live
I will gladly give myself as the sacrifice if it means that all the dandelions in the world become viewed as more than the consequence of sins behind closed doors
You can lay me on my back and present me life less to God if it means that dandelions with unseen scares will not be viewed as odd
But as gifts from God to show the world that beauty lies not in the pedals of flowers but in the power of unconditional love
And in the strength of the untouched, un-hugged, sometimes unloved but most important of all un-budged dandelions

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Finding a Pain of My Very Own

Monday, September 29th, 2014

I have twenty staples in my back holding an incision together. It hurts.

Just making that rather gruesome statement leaves me feeling conflicted. Yes, I want sympathy. Yes, this pain has been a constant companion for the last two months, from throwing out my back again to discovering from an MRI that a nerve was being crushed to a serious back surgery and then a slow recovery with more pain than I bargained for.

Mark Hospital BedBut the self-indulgence bothers me. How can we possibly complain, about anything really, in relation to the trials of others?

It reminds me of the 1980’s, when there were so many deaths from AIDS that we couldn’t grieve properly for individuals losses. The problem with living during that time, and seeing such mortality, was that everyone was doing it. There was no room in our aching hearts to feel for them all. And how in the world was I supposed to feel sorry for myself, the one with HIV who was healthy and alive?

Soliciting sympathy is a perilous enterprise. I’m That Funny Guy with HIV. Revealing that I’m hurting and feeling miserable feels like I’m going off-script, that these words don’t belong on this blog, that you’ll see me as self-centered and a whiner, that I’m hurting “my brand” and web traffic will suffer. But mostly, that my selfishness will become apparent, or at least show more than usual.

The self-pity comes and goes, like the muscle spasms, like the ocean of pain that ebbs and flows, like my own attitude toward what has happened to me, or what is yet to come. It’s a kaleidoscope of impatience and gratitude and hope and anger. So I don’t talk about it much or I make light of it and try to keep things in perspective.

During my hospital stays these last weeks, I witnessed true medical emergencies, and saw other patients awaiting care who clearly were more frail, and more afraid, than I was. Meanwhile, I was cracking jokes with the nurses as I was being prepped for surgery and looking forward to the bliss of sedation, as any red-blooded addict in recovery would. I liked the attention, the drama of something serious underway, and how, at least for a few hours, it was all about me.

But then the surgery happened. And it isn’t funny anymore. And I understand the legitimate use of oxycodone. And I can’t put on my own socks.

So, for long periods of time during each day, I don’t care about the suffering of others or the inhumanity of war or the latest HIV infection rates. Because what I am going through right now hurts. And it’s really hard.

And I want a pain of my very own.

It is that very realization, of wanting to hold tight to something shared by no one else, that shatters my selfishness. Because if there’s anything I believe in, it is that we heal and strengthen by sharing our common challenges. Whether it is living with HIV or a death in the family or a breakup, we get stronger when we talk about it.

I have a folder of special emails called my Rainy Day Folder, and in it are messages I have collected over the years. They are from people all over the world thanking me for a posting on my blog or sharing their own stories with me of stigma or fear or loneliness. And during this entire experience of mine, I have neglected to do the very thing for which that folder is intended: when I’m feeling low, read some of the emails and take heart that I’m making a difference by sharing my truth or offering advice.

So, this morning I opened the folder and began to read. And one piece of advice, something I offered repeatedly to others who were experiencing misfortune, stunned me with its precision and irony. “You are going to get through this,” I said, more than once. “And one day you are going to be able to say to someone, ‘I know what you’re going through. I understand. And this is how I got to the other side.'”

Seeing the intersection of hurt and healing in those emails released something in me. The really good cry that followed was about me, and them, and all of us.

And I felt no pain at all.

Mark

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Update: The staples have been removed, and the surgeon was practically gleeful during our appointment that I am walking nearly normally. He said that during surgery he was alarmed by the nerve damage and he feared for my mobility. So I dodged a bullet, thanks to taking fast action, getting good advice, and walking (or limping) through the experience. Thanks for all the kind messages of support. I’m on the mend.

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Posted in Living with HIV/AIDS, My Fabulous Disease, News | 6 Comments »

VIDEO: Methtacular! The Addictive Musical Comedy

Tuesday, September 2nd, 2014

It is no secret that I am a crystal meth addict in recovery. But writing about it, at least in the often humorous style for which my blog is known, escapes me. My process of recovery feels too precious, too personal, and yes, even too delicate.

steven meth 1So it was with some skepticism that I recently attended the Chicago premiere of Methtacular!, an autobiographical one-man show in which the star leads us through his descent into drug addiction through music, comedy, and even a game show segment using audience members as contestants.

I laughed with bittersweet recognition and sat amazed at the talents of writer and performer Steven Strafford. Even more, though, I was impressed by how much the audience as a whole enjoyed the show. I don’t mean to stereotype, but I don’t believe the young straight couples or the elderly subscription holders in attendance were intimately familiar with the bathhouse antics of meth users on a five day binge. But God bless ‘em, they were laughing heartily.

I should have known better than to question their ability to relate to someone overcoming painful adversity and combatting the shame that so often accompanies it with humor. It’s the very reason people without HIV read my blog, or watch films about the difficult lives of others. As much as we may fear revealing our secrets, it is that intimacy, that sharing of ourselves, that we all truly desire and that has such healing properties.

If you are anywhere near Chicago before the show closes September 28, please contact Theater Wit and make your reservations. If you are not in the area, enjoy my video blog about the production and then start bugging the producers to bring the show to your city. You’re going to love it.

Mark

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Speaking of my drug addiction (for someone so reticent on the topic, I won’t seem to shut up about it lately), I would like to share my two minute acceptance speech for the National Lesbian and Gay Journalists Association award for “Excellence in Blogging” that I received last week. First, because I’m proud of it, but actually because it contains a very personal message about crystal meth, and if I’m going to encourage people to talk about it I might as well take my own advice.

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Posted in Gay Life, Meth and Recovery, My Fabulous Disease, News | 3 Comments »