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Posts Tagged ‘gratitude’

What It Feels Like for a Mom

Tuesday, September 13th, 2016

OLYMPUS DIGITAL CAMERA

(My mother, Anne King, turns 90 this month. This story is my tribute, and you can hear her story in her own words in the video below.)

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 has proved herself 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 from 2010, 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.

(If your browser has issues with the video below, you can watch it on YouTube here.)

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 »

My Fabulous Disease Wins NLGJA ‘Best Blog’ Award

Wednesday, August 17th, 2016

Mark End Note

Mark S. King on the blogging trail, here in Durban during AIDS2016.

There’s no way of saying this without it sounding like a humble brag, at best, so I’m just going to come right out with it.

My Fabulous Disease has won the prestigious “Excellence in Blogging” award from the National Lesbian and Gay Journalists Association (NLGJA). This is the second time my blog has been honored with this award, having won in 2014, the year the category was created. So if you’re keeping score, that’s two for three.

Evidently I’m too excited to do the humble part of the brag. My apologies!

The award is part of the annual Excellence in Journalism Awards, sponsored by NLGJA. They actually wield enormous influence, with members from outlets as varied as CNN to The New York Times to POZ Magazine and, well, little guys like myself. As stated in their press release this morning, “The NLGJA Excellence in Journalism Awards were established in 1993 to foster, recognize and reward excellence in journalism on issues related to the LGBTQ community.”

One of the judges had this to say in awarding My Fabulous Disease their honor:

Mark S. King is one of the few people still doing blogging in the traditional sense, and he does it quite well. There’s news, there’s context, there’s personal input and it’s compelling and accessible. For example, his coverage of the ways Charlie Sheen was discussing HIV were spot on and unrivaled and I was delighted to revisit it as part of his nominated material. King displays excellence in HIV coverage year after year. 

But ultimately, this is really about you, my readers and those involved in HIV advocacy, because you are usually the topic of my writing. Whereas my blog was almost strictly personality-driven in its early years, I have enjoyed, more and more, shining a spotlight on the work of other people. Yes, I am still capable of an opinionated rant (and how I so love writing those), but it is clear to me that my blog’s success it tied to the work of people just like you.

Just as exciting is the fact that HIV coverage was well represented this year, across the map of categories.

Placing second in the Excellence in Radio award was an important story from Jim Burress of WABE-FM, “Fulton County Doesn’t Spend, Loses HIV Prevention Money,” about the misuse (or non-use) of crucial HIV prevention dollars.

The amazingly prolific Ben Ryan (the “nearly naked AIDS advocate” I profiled a few months ago), was awarded second place for his POZ Magazine piece, “When Can We Expect PrEP 2.0?” It’s a topic that is still very much on his mind.

“PrEP is a fast-moving train in the United States, with use rising dramatically in major cities,” Ben told me about his win. “It’s been exciting to cover the science behind this new prevention tool, from a molecular to a public health and sociological level. The news will likely keep getting better as new forms of PrEP hit the market in the future, offering a long-term injectable form and less toxic oral drugs. A major concern I have, however, is that PrEP is largely being used by white gay men in a select handful of major cities, such as New York, San Francisco, LA and Seattle. I anticipate that PrEP will effectively widen racial disparities in HIV rates in the coming years. If people wind up proclaiming victory due to a collapsed HIV rate among white gay men, what will happen to minorities? Will people lose interest in the HIV fight?”

Bisexual writer Heather Boerner (her sexuality bears mentioning, considering how “invisible” the B in LGBT can be) took top honors in the HIV/AIDS Coverage category, for her “Ongoing HIV Prevention/Treatment Coverage” for The Daily Beast and TheBody.com.

“I started my career in the LGBT press, writing for the now-defunct New York Blade,” Heather told me, “so to win an award from NLGJA is especially meaningful to me. But it’s also meaningful to me because the stories I submitted were all about HIV/AIDS, yes, but they weren’t only about HIV/AIDS from an LGBT perspective. I will say that there’s still so much to say and do and write about HIV–even more so now that more and more research is proving what some couples have known for years, which is that treatment really can prevent transmission, and there’s no reason to be afraid of the virus.”

Following Heather is second place in that category is Daniel Villarreal and Topher Williams for “‘Trust Him?’: Why Are The Images Debating PrEP Use So Consistently Shitty?” for Daniel’s site, UnicornBooty.com.

surviving life artworkAnd in an embarrassment of hardware riches, I also won second place in the Feature/Editorial Writing category, for my POZ Magazine essay, “Surviving Life Itself,” chronicling my life as a long-time HIV survivor. That particular piece was a real high point for me as a writer, and I am grateful as always to editor Oriol Gutierrez for his shepherding of my work.

Let’s just consider this another opportunity for me to thank my literary colleagues, including many sites and editors who have supported the voices of people living with HIV.

Let’s keep speaking up, y’all.

Mark

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 1 Comment »

AIDS2016: The Full Video Collection from My Fabulous Disease

Tuesday, July 26th, 2016

Mark Theo AIDS2016

With my trusty videographer (right), Australian HIV advocate Theo Tsipiras.

The people, the parties, the protests! AIDS2016, the international AIDS conference held in Durban, South Africa from July 16-22, had it all. And it was my privilege to bring you the stunning sights and sounds of the gathering, sponsored by The Global Forum of MSM and HIV. My special thanks, too, to my amazing videographer, Australian HIV advocate Theo Tsipiras.

My coverage was featured on the most comprehensive HIV resource on the net, TheBody.com (you can also view my full set of videos there), as well as on MSMGF.org and even on Queerty.com, the world’s largest pop culture site for gay men.

So here they are, each of the five video blogs I produced at AIDS2016, below.

Allow me to let these videos, and the inspiring people from around the world who populate them, to speak for themselves. Enjoy!

 

The MSMGF Pre-Conference (Gay Day!)

Gay Day pic

Gay men from around the world gathered for sessions and selfies.

The MSMGF pre-conference is uniquely designed to address the issues and needs of men who have sex with men (MSM) around the world.

Included: openly gay International AIDS Society President Chris Beyrer; Truvada drug smuggling (sort of) with German advocate Nicholas Feustel; a chat about the prevalence of chem sex in London; and gay advocates from countries in which their sexuality – and even their services for gay men – are criminalized.

 

The Thrilling Treatment Access March on the Streets of Durban

Treatment March pic PHOTO BOB LEAHY

Interviewing activists during the #Treatment4All March. Photo by Bob Leahy, PositiveLite.com.

The may be no way to adequately describe the intensity of the #Treatment4All march that wound its way through the streets of Durban. Fortunately, my videographer Theo and I dropped ourselves into the middle of the action. The results are amazing.

Included: the thousands of advocates calling out the disparities in the world when it comes to HIV treatment access; the individual activists explaining why they are taking to the streets (including some of the women of the Positive Women’s Network).

BONUS Video: An Interview with PrEP Advocate Jim Pickett

Here is a man who does not mince words. Jim Pickett of AIDS Foundation Chicago explains why AIDS2016 should be known as “the PrEP conference,” and then has some very candid thoughts about the efforts of AIDS Healthcare Foundation (AHF) to block a California bill that would provide PrEP education to those at risk. Included: information on how you can support the bill.

 

An HIV+ Gay Man is Erased by the Military and a Plenary Protest

Anti-criminalization activists took the main stage at an AIDS2016 plenary.

Anti-criminalization activists took the main stage at an AIDS2016 plenary.

The advocacy around HIV criminalization has grown enormously is just the last two years. I take you to the Beyond Blame pre-conference, and then jump into a demonstration by criminalization activists at an AIDS2016 plenary – which included the newly minted activists and grandchildren of icon Elizabeth Taylor, working on behalf of the Elizabeth Taylor AIDS Foundation.

Also: a very candid gay activist from New Zealand confides with me about just how cruisy the conference is for he and his fellow advocates. Hint: activists ready to hook up are less than 20 feet away.

Included: Interviews with LTC Ken Pinkela, who lost his appeals to the military over trumped-up non-disclosure charges; Edwin Bernard of the HIV Justice Network; Joel Goldman of the Elizabeth Taylor AIDS Foundation (and her HIV activist grandchildren), and our first visit to the amazing Global Village.

 

The Eye-Popping Global Village and a Party Without Pants

Tribal Crop MFD

There were glorious sights to behold in the Global Village, like this South African transgender activist. And then: the “No Pants, No Problem” dance party!

In my final report from AIDS2016, we immerse ourselves in the sights and awesome advocates of the Global Village – and then let off some steam at “No Pants, No Problem,” a dance party like nothing else on the planet.

Included: African grandmothers fighting for support, the “Disclosure Sofa,” interviews with international HIV advocates Gus Cairns and Julian Hows, gay teenage HIV advocates from South Africa, Jessica Whitbread, organizer of the pantless dance party, and my final thoughts about this wondrous experience.

 

Mark End Note

Thanks for watching, and for your lovely messages of support throughout this conference. It means the world to me. And now, let the anticipation begin for AIDS2018 in Amsterdam.

Amsterdam, y’all. Can you imagine?

Mark

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

Gay Collective: “The Virus Divides. It Doesn’t Have To.”

Thursday, July 7th, 2016

Gay Men Collective Group Photo crop

The Viral Divide Flash Collective: Mark S. King, Bryson Rose, Damon L. Jacobs, Charles Sanchez, Frederick Weston, Bruce Ward, James Krellenstein, Alex Wilson, Durell Knights, Jordan Eagles, Leo Herrera, Avram Finkelstein, and Jawanza James Williams.

In a cramped meeting room in New York City on May 27, 2016, a dozen gay men, HIV positive and negative alike, came together to answer a vexing question: How do gay men bridge a divide that has been forged through decades of HIV stigma, distrust, and mutual blame? Or, at the very least, what might be done to start a conversation about the divide and begin to heal the wounds?

Convened by Avram Finkelstein, the HIV-negative artist and HIV activist who was part of the collective that created the iconic SILENCE=DEATH artwork in the 1980s, and Mark S. King, the HIV-positive blogger and advocate, the Viral Divide Flash Collective sought to begin a difficult conversation and find a graphic way to present it. The collective was sponsored by Visual AIDS and made possible through funding from Broadway Cares/Equity Fights AIDS and GMHC.

viral

A “flash collective” is an exercise in artistic advocacy involving group facilitation and the common pursuit of a graphic message to communicate a concept for the public sphere. In other words, the gathering of gay men had mere hours to discuss the HIV viral divide, vent their frustrations about their lives and each other, and then find common ground. It was, in a word, intense.

Before the group even finished consuming their breakfast bagels, the walls of the room were covered in reams of butcher paper scrawled with the frustrations and issues viewed as crucial to members of the collective.

Important topics were raised, such as race, privilege, and the science driving the new HIV landscape. Again and again, the group talked through these concerns and then returned to their primary purpose of crafting a message about the viral divide among gay men.

“This message is the first sentence in a conversation,” Avram Finkelstein reminded the collective throughout the day. “It does not have to tell the entire story. It is meant as the starting point for important conversations.”

The result, HIV ÷, features the tagline, “The virus divides. It doesn’t have to. No walls between gay men.” The graphic image includes an animation that outlines the various ways in which the divide affects gay men: age, joy, relationships, sex, race, and love.

Avram Finkelstein facilitates

Avram Finkelstein facilitated the collective with assistance from Mark S. King.

And the graphic image has an impressive coming out party on the way. It will be projected onto the façade of the Bronx Museum on July 13, 2016, as part of the opening of ART AIDS AMERICA, a retrospective of AIDS-related art through the years. The Illuminators, most widely known for their work projecting graphic messages on the New York City skyscape on behalf of Occupy Wall Street, will coordinate the projection. The work of the Viral Divide Flash Collective is viewed by the museum as the very latest in a history of AIDS artwork that dates back more than thirty years.

The Viral Divide Flash Collective has set up a Tumblr page featuring the final artwork and of the collective’s day together. Photos of the projection onto the Bronx Museum will be added after the event on July 13. Anyone is welcome to post their thoughts on the Tumblr page or to share the images on social media.

The HIV ÷ message comes just as gay men are grappling with a host of new scientific realities that are altering the social landscape.

The increased adoption of pre-exposure prophylaxis (PrEP) has re-energized activists and provided a way for HIV negative gay men to participate fully in their own HIV prevention.

Meanwhile, research has definitively shown that people living with HIV who are on treatment and maintain an undetectable viral load are uninfectious. A new group, Prevention Access Campaign, is aggressively promoting the scientific evidence that undetectable people living with HIV cannot pass on the virus.

Online dating apps, where divisions between HIV positive and negative gay men have been most prominently on display, have now incorporated profile choices that include being on PrEP or being HIV positive and undetectable. So there is movement afoot, even as HIV stigma remains a stubborn roadblock to bridging the viral divide.

James Krellenstein, Alex Wilson, Bryson Rose and Charles Sanchez crop

Group members James Krellenstein, Alex Wilson, Bryson Rose and Charles Sanchez.

It would appear that now, more than ever, gay men can relieve themselves of the social walls that have divided them along the lines of their sero status. The HIV ÷ graphic message is only a small part of multiple efforts to repair relationships among two factions of gay men that have often been at odds with one another.

After so many years of mortal fear, irrational and otherwise, bridging the viral divide will surely be easier said than done. The members of the Viral Divide Flash Collective have started an important conversation. It will be up to countless others to continue it.

Mark

PLUS…

MarkTheoI could not be more excited about returning to the international AIDS conference next week. AIDS2016 in Durban, South Africa, is sure to offer exactly the kinds of sights, sounds, and people that I love capturing in my video blog coverage. I am proud to have the sponsorship of MSMGF, the global organization working for the health and rights of gay men (men who have sex with men) around the world. Beginning with pre-conferences that begin on July 16, you will be able to follow my coverage on the MSMGF site or by checking in with TheBody.com, the most comprehensive HIV site anywhere. As with my past conference coverage, I leave the research and panels to others, while my trusty camera man Theodore and I train our sights on the colorful people who make this conference like none other. See my teaser video here, and wish me luck!

 

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

My Muscles, My Disease: The Pitfalls of a Meth Addict

Wednesday, June 15th, 2016

There is a folder, tucked within a folder, buried deep in my computer files. I shouldn’t be looking at its contents, yet I can’t bring myself to delete it altogether. It is labeled MARCUS, and inside the folder is my disease.

During my years of crystal meth addiction I went by the name of Marcus, at least to dealers and tricks and fellow addicts. It helped me determine who was calling my cell phone — those calling for Mark or Marcus usually had very different agendas — and Marcus even became an alternate persona as my drug addiction progressed.

When partying as Marcus, I felt confident and aloof. I took awful chances. I never met a strobe light I didn’t like or a box on a dance floor I wouldn’t jump on. A steroid-crazed gym regimen and the dehydration of drug abuse transformed my body into the low fat, pumped up gay ideal. My body was my currency, traded for sex and drugs.

Pool-ColoredPhotographs of that body, in full, preening strut, are the contents of the MARCUS folder. The pictures were my calling card for drug-fueled pursuits. They suggest nudity but are cropped modestly — although God knows that much more damning images of me surely exist in the dark corners of cyberspace.

In one of the few pictures showing my face, I stand under a running shower — a pitiful Playgirl pose, spray nozzle in hand — with a blank, wet face and shipwrecked eyes. The only emotion on display, just around the edges, is a dull fear.

My life was precisely as pictured. It wouldn’t be long before my drug use trumped my gym schedule, and my status in online chat rooms devolved from intriguing hottie to that crazy mess that doesn’t look like his pictures.

Since then, my recovery from drug addiction has helped me understand that the Gay Strut is key to my disease. It is a sly porthole back to raging insanity.

Explaining all this feels idiotic. What vanity I possess, asking you to gaze upon my former, overwrought beauty as I complain about the consequences. It feels like an invitation to tell me how much healthier I look now, or that recovery is “an inside job.” I know this. I’m just sharing the curious road that got me here.

My recovery depends on healing my mind, body and spirit. At the moment I’m two out of three, even after several years of clean living.

My spirit is happy. My smiles are joyful and plentiful. My mind is clear, although I don’t kid myself, there are remnants of a brain pickled in methamphetamine for many years. But healing is underway, and my mind and spirit are enjoying the process.

Only my body lags behind, injured, resentful, and suspicious of the path to well being. I’m sedentary and stubborn. I relate being physically fit with something traumatic that once hounded and eventually ruined me.

I want to be healthier, and to control my weight and rising cholesterol. I need to fix this, I tell myself, but I’m afraid to fix this. There’s the potential that I’ll go back to a lifestyle more horrible than my expanding waistline.

It’s good to get in shape again, I tell myself with sincere intentions. The treadmill is really taking off the pounds and I should start weight lifting again and hot damn, that muscle recall really works just look at my arms and I should buy new tank tops and work out even harder and get steroids prescribed again and what’s wrong with hanging out at a bar shirtless and shooting pool and sure I’ll do one hit of that, thanks, and man I would look damn hot at a sex party right now and who’s your dealer and do you have needles…?

Getting back in shape is an easy call. Except my mind puts physical fitness on the same crazy train as my drug addiction. The fact I acknowledge my insanity is a good start. Now I can begin the process of teaching my body new tricks. When I’m working out, I try to remain in a state of gratitude for my life, for my physical self, and for the fact I no longer have to live as I once did, using my body as currency.

There are traps on the road to recovery, as anyone getting clean and sober will tell you. The vigilance it requires is a full time job. A dangerous choice might look perfectly innocent. It might be a reasonable part of life. It could even be a healthy choice, at least for you.

That’s the cunning nature of drug addiction. My very reckoning can look as pretty as a picture.

Mark

(The photos above are the only Marcus images that remain, gratefully. This re-post is inspired by my friend Will Armstrong, whom I recently profiled about his addiction and body image. Please note: I always speak generically about my recovery from addiction, and do not publicly promote one model or another. The point is, help is available for the asking.)

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 1 Comment »

My Response to Orlando in One Sublime Performance

Monday, June 13th, 2016

pulse-orlando-shooting-lgbt-community-v3

I can’t watch the news anymore right now. I have it muted, but will admit to glancing in its direction every few minutes. On the screen there are police cars and flashing lights and footage of the injured and there is often someone in tears.

It makes me wince with emotion, and twice this morning I have blurted out a sob for a moment, which surprises me, frankly, because I don’t cry much anymore.

Tears are creeping up on us everywhere. My husband started crying yesterday while we were waiting for a table at a restaurant. He read on his phone about the long lines to donate blood, hundreds of people waiting for hours, and he lost it for a minute. I rubbed his back and said nothing.

No words, as they say.


 
But, being a theatrical queen that returns to performances for emotional touchstones, I want to share this transcendent performance by Fantasia from the 61st Annual Tony Awards. Every single word of this song, “I’m Here” from The Color Purple, speaks to me at this moment and to this tragedy.

We are resilient. We miss those close to us. We are beautiful. And we are here.

“I’m Here.”

I got my children.
I can’t hold them now,
They may not be here, but they still mine.
I hope they know I still love them.

Got my house.
It still keeps the cold out.
Got my chair
When my body can’t hold out.
Got my hands
Doin’ good like they s’pose to,
Showin’ my heart
To the folks that I’m close to.

Got my eyes.
Though they don’t see as far now,
They see more ’bout how things
Really are now . . .

I’m gonna take a deep breath.
Gonna hold my head up.
Gonna put my shoulders back,

And look you straight in the eye.
I’m gonna flirt with somebody
When they walk by.
I’m gonna sing out . . .
Sing out!

I believe I have inside of me
Everything that I need to live a bountiful life.
With all the love alive in me
I’ll stand as tall as the tallest tree.

And I’m
Thankful for each day that I’m given,
Both the easy and hard ones I’m livin’.

But most of all
I’m thankful for
Loving who I really am.

I’m beautiful.
Yes, I’m beautiful,
And I’m here.

 

And please, my dear friends, be well.

Mark

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Posted in Family and Friends, Gay Life, My Fabulous Disease, News | 1 Comment »

There’s More Room in a Broken Heart

Tuesday, June 7th, 2016

Bill Jacuzzi Crop

Will Armstrong (here, in a 2015 photo) acknowledges his losses but has never been happier.

So don’t mind if I fall apart
There’s more room in a broken heart.

— Carly Simon, “Coming Around Again”
When Will Armstrong emerges from heart surgery in just a few days, he will have weeks of hospitalization ahead. He will also have expensive new hardware in his chest and a devoted animal waiting anxiously at home.

What he will not have is a pulse.

Will, a 44-year-old living in Atlanta, is having a Left Ventricular Assist Device (LVAD) implanted, and it will push the blood flow through his heart so smoothly that the throb of a pulse will be virtually nonexistent. Unlike a pacemaker, the LVAD needs electricity to function, provided by a battery pack to be carried by Will at all times. With an extra battery always on hand. And a couple more charging at home.

The last year may have been devastating for Will, but the process has had an unexpected effect on his emotional state.

“I’m happier than I was before I got sick,” Will says now. Allowing himself to receive the love and support of his wide circle of friends has had an enormous impact. “A lot of people will never know that kind of love while they are alive,” Will says. “To be able to know that is an incredible gift.”

The bearded weight-lifter has always cut an imposing figure, and he admits he used his physicality as armor while navigating life as a gay man. “I had to project this image,” Will says. “It was such a fraud.” His intimidating posture kept people at a distance, even as he struggled with life events that called out desperately for support.

Will tested HIV positive twenty years ago. Coming to terms with the stigma attached to the virus is something he managed to resolve some time ago, until he found himself facing another disease that posed a more immediate threat: crystal meth addiction.

The LVAD device Will is having installed.

The LVAD device to be installed.

Once he began a recovery program for meth addicts, populated largely by other gay men, Will was surprised to learn how many of his fellow addicts were also HIV positive but uncomfortable saying so. “That surprised me,” he says, “that people could feel stigmatized for their HIV, even among other gay people in recovery.” Will responded by becoming one of the founders of Pozitively Fabulous, an annual retreat weekend for people in recovery living with HIV, now in its fifth year.

As his years of successful recovery passed, however, Will continued to hold tight to his ultra-masculine persona. His social media pages were littered with gym selfies and bicep measurements. It was an unhealthy fixation on self, Will now admits, and it eventually caught up with him.

In May of 2015, after seven years of clean living, Will relapsed on meth for two full weeks.

“I ended up in the emergency room,” he says. “I thought I was having panic attacks, but I was in kidney failure. I was in total disbelief when they diagnosed my heart failure. I’ve never even had high blood pressure.”

“It could have been anything, HIV, diet pills, steroids, crystal meth, genetics,” Will says. But he knows that, when it comes to addiction, the most obvious answer is usually the right one. “People will sometimes say how ironic it is that I ‘escaped drug addiction’ and then this happened. No. I didn’t escape drug addiction. This is what happened.”

What has followed is a year of medical trial and error, as doctors tried to keep Will’s heart viable while exploring alternatives. He has been denied a heart transplant due to HIV, and his doctors say there are no heart transplants happening in the United States for people with HIV, anyway (the very few organ transplants that are happening, such as liver transplants, are between HIV positive patients and donors).

“I went through a couple months where I didn’t want to live anymore, I was suicidal,” Will says. “I didn’t want to be here anymore.”

12705682_10206402496396600_3613115278995185772_nAnd this is where Addie comes in, the “creature more spiritual than anything in my life,” says Will.

Addie is the pit bull that is glued to Will’s side, constantly vigilant for a hug from him or signs of a treat or a walk. “Addie is the reason I’m still here. I live alone, I’m single, I didn’t have a boyfriend or the fabulous life I thought I would have. But Addie forced me to get up every day and take her out. She’s the reason I stuck around.”

“When I met her at the dog rescue two years ago, they told me she was hard to adopt because she was high strung and not great around kids or dogs.” Being a pit bull probably didn’t help her chances, either.

It was a match made in shelter heaven. Both Will and Addie might have been outwardly intimidating to others, but what they really needed was some unconditional love. “I connected with her and fell in love,” said Will. “When I’m with her, I try to be as happy as she is. She is always right here in the moment, and she believes everything will be okay. She adores me. I’ve never had this type of relationship with anything.”

11149275_10204571033371169_7121808734332170427_nWill has a team of friends at the ready as he mentally prepares for the five-hour LVAD surgery in a few days, but he wants them to be focused on Addie, who will miss him terribly. “She is too big and hyper to sneak into the hospital to see me,” Will said, “but I’ll be doing video calls with her.”

Will has watched YouTube videos of the surgery (“gruesome stuff”) and knows the risks of complications. He understands the LVAD will probably be attached to him for the rest of his life (“batteries are important, but I can plug myself in anywhere, including the car”). Whatever anxiety Will may be experiencing is blanketed by a deep sense of gratitude.

“Today, I look at situations that really should aggravate me, and I’m just not there. All that shit I thought you should think about me doesn’t matter. Things like money and romance aren’t important to me now, or being super macho so people don’t think I have feelings. What is important to me are things I already have.”

“My biggest challenges have been readjusting my expectations,” Will adds. “Sure, I have a lot of uncertainty in my life, but I’ve got so much love the last year from my friends and family. And you know what? I allow people to love me. They want to be helpful, and the biggest thing I can do for them is let them love me.”

As Will considers his close brush with mortality this year and the recovery process ahead, he sounds like a man who is comfortable, at long last, in his own skin.

“I’m grateful I have been given a year to resolve things, let things go, take care of things,” Will says. “If I were to leave this planet, I would be okay with that. I’m okay if it’s my time.” His affairs are in order, including a new home for his beloved Addie, just in case.

“All that said,” Will offers finally, “I don’t want to go.”

Mark

(UPDATE: Great news! Will Armstrong’s friends had created a GoFundMe page to help him with basic living expenses, but after successful LVAD surgery and a robust recovery, Will is walking the dog and taking on small work projects. The GoFundMe project has ended, but Will sincerely thanks everyone who has carried him through this time. “I plan on ‘paying it forward’ for a very long time,” Will said.)

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Surviving Life Itself: Reflections of a Longtime Survivor

Sunday, June 5th, 2016

surviving life artwork

The young woman sitting across from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.

“I know someone who died,” she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. “He was a good friend of my brother,” she goes on. “He was killed in a motorcycle accident a few months ago. It was just awful.” As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.

Just one? You know just one person who died?

By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.

I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.

The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.

***
I didn’t get many chances to do that, living as a young gay man in Los Angeles in the 1980s. There were very few singular deaths. It seemed like everyone was doing it. And among them, a dozen friends close to me, struck down within months of one another, with whom I shared a history of youthful secrets, joys and indiscretions, never to be spoken between us again.

Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.

And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us. I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.

The fluids in Lesley’s dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.

They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a “long-term survivor.” I have misgivings about that unsettling designation because it doesn’t speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.

***
In the decades since those sorrowful days, I have faced a host of perilous circumstances apart from AIDS, including a car crash, drug addiction, serious medical procedures and weapons pointed in my direction. Like everyone else, positive and negative alike, I am a survivor of life itself.

That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.

And it is this prism—one that includes AIDS as only a segment of my life—through which I view the world today. My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.

The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.

***
Many of us remember that new world, when people with AIDS were saved by a miraculous “cocktail” of new medications. Living with HIV before the mid-1990s, when these medications were introduced, has become the popular line of demarcation for entry into the fellowship of long-term survivors.

My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.

By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.

It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.

The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor. Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.

That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.

***
I blinked again and now find myself here, sitting in my home office as a man in his 50s. My workspace is populated with relics of the epidemic, the walls filled with posters from AIDS Walks and photos of protests and triumphant arrests. A vast collection of name badges from AIDS conferences are strung from a single hook in an enormous, colorful bouquet. And everywhere around me are reminders of the missing. Pictures of friends whose faces will not age. Borrowed sweaters in the closet that need never be returned.

They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don’t find the title of “long-term survivor” so unsettling after all. There are worse things.

Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.

What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV non-infectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.

But astoundingly, these developments have been nearly as controversial as they have been celebrated.

There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.

I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, “barebacking,” evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.

I watch the absurd finger-pointing today, the naïve segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.

***
Our hand-wringing over how to engage young people bemuses me, particularly our morbid fascination with aggressively foisting upon them the horrors we once endured, as if clubbing them with fear will somehow make them rethink their youthful transgressions. Our heartbreaking past is important history that should be preserved. It is not a prevention strategy.

Trying to imprint our life lessons on the young is a fool’s errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don’t consider my life experiences relevant.

Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.

Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us. Our bond is vital to finding solutions to the issues we face as an aging population.

As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.

I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.

The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.

Enlightenment awaits. All we have to do is blink.

Mark

(This essay appeared in the June, 2015 issue of POZ Magazine and is shared with their permission. Today is HIV Long-Term Survivor Awareness Day.)

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The Nearly Naked AIDS Advocate

Sunday, May 22nd, 2016

Josh Green and cast, from Broadway Bares 2015 (credit: Benjamin Ryan)

Josh Green and cast, from Broadway Bares 2015 (credit: Benjamin Ryan)

When Benjamin “Ben” Ryan began taking dance classes ten years ago, the personal venture was a complete whim. After all, he was in his late twenties at the time – ancient for a beginning dancer – and by his own admission, was “just awful” for the first few years of classes. And nothing about his vocation as a writer specializing in the science of HIV suggested that Gene Kelly was trapped inside.

Cue the victorious final production number of your favorite musical. Not only did Ben get better – a whole lot better – he was cast in the spectacular HIV fundraiser Broadway Bares seven years ago and each year since, hoofing alongside actual Broadway dancers. Performers can also raise money through the event’s “Stripathon” page, through which Ben has raised more than $80,000 for beneficiary Broadway Cares/Equity Fights AIDS (you can visit Ben’s stripathon page here and add to that impressive tally).

Oh, and Ben Ryan has done all of this while wearing very, very little on stage.

When the curtain rises for “On Demand,” the newest Broadway Bares show to be performed in New York City on June 19th, Ben will be back, appearing for a third time in the opening number. With its generous blend of almost-and-sometimes-totally-naked men and women, celebrity cameos, and risqué burlesque, the show is sure to add significant funds to the $14 million the event has raised to date for people living with HIV and other health initiatives. For Ben, it’s all an unlikely dream come true.

“For the last 15 years,” Ben said, “I’ve written about the HIV epidemic as a reporter.” He currently covers science as editor-at-large for POZ Magazine, and getting his facts straight is incredibly important to him — especially when every detail of each new study is parsed and debated online. “The way I make sure my back is covered is I fact check like crazy,” he said. “Even one word can change the meaning of something. If I do get something wrong, I’m really upset. I’m a perfectionist.”

Those same qualities have served him well as a late-blooming dancer. When he started out, “I was at the rock bottom of my dance class with a bunch of kids,” Ben said. “Even my teacher made fun of me. Until she didn’t.” He still finds it hard to believe he now shares the stage every year with Broadway professionals.

But what must the scene be like backstage, with all that naked flesh running around? “Most of the guys in the show are really friendly,” Ben said coyly. (For more visual information on the scene backstage, check out Ben’s own photography page for images of all the action behind the curtain. You’re welcome.)

IMG_1385

Ben Ryan and Laverne Cox backstage during Broadway Bares 2015.

Ben has nothing but love for special guest performers like Laverne Cox and Judith Light. “The whole room exploded at rehearsal last year when they announced that Laverne would perform,” he said. “She was such a darling, always hanging out with everyone. And Judith will just wander around backstage with this amazing grin on her face. She gives a speech at the end of the show that always gives me goosebumps.”

Star power is great, but nothing beats a volunteer like Ben who knows how to raise money. “Ben is not content to take the stage in bare-bottomed pride,” said Tom Viola, the highly regarded director of Broadway Cares/Equity Fights AIDS. “He raised $17,346 just last year and was named Mr. Stripathon.” Tom also credits Ben with helping to craft HIV prevention and treatment messages that are shared with the entire company each year, “so everyone associated with the production understands how to take care of themselves and each other.”

Ben Ryan is named Mr. Stripathon at Broadways Bares 2015

Ben Ryan is named Mr. Stripathon at Broadways Bares 2015

Amidst all the revealing fun, Ben knows Broadway Bares isn’t simply being titillating for its own sake. “Ultimately, the show is a celebration of the body,” he said. “We harken back to a time when we were afraid to touch each other, so to celebrate our sexuality is a profound thing. That, as opposed to HIV stigma and anxiety about sex and transmitting disease.”

Ben also admits that the show is a nice escape from his more cerebral work in HIV science. “It’s so much fun to be silly and outrageous,” he said. “I wanted to be involved in an event that I thought was the most exciting thing in New York City. And I am!”

Mark

(Ben’s fund raising page for Broadway Bares is here.)

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Mr Gay World Entry Gets Personal on PrEP and Testing Poz

Monday, April 18th, 2016

When Sadiq Ali heard about a clinical trial for pre-exposure prophylaxis (PrEP) happening in the United Kingdom in 2013, the athletic 26-year old hesitated. He worried about what starting PrEP might say to people about his sexual behavior. The stigma he associated with being on the prevention pill was just too much for him.

Sadiq Ali photo“I was ashamed to even be offered this thing, even though I barely knew what it was,” the Londoner says now. “I thought that only highly promiscuous and risky sex practitioners would take this. I went through this process of ‘slut shaming’ myself. I was still very naïve at this point.”

So, Sadiq waited a few more months, had second thoughts, and decided to enroll in the PrEP study after all. Unfortunately, fate had dealt him a crushing blow.

Between the time Sadiq heard about the study and before he actually began taking PrEP, he was infected with HIV. It occurred literally days before he started taking the pill. His first HIV test during the study, in January of 2014, revealed the infection.

“I thought if I took PrEP it would make me all the things I didn’t think were me. Things that I didn’t want to be,” he says, pointing to the promiscuity about which many gay men taking PrEP are accused. “But instead, not taking it resulted in me contracting HIV.”

The irony of Sadiq’s tragic timing forged an advocate who is fighting both HIV stigma and for the adoption of PrEP in the United Kingdom (it is an advocacy issue that was further ignited when the UK National Health Services took action that has delayed the approval of Truvada as PrEP, perhaps for years).

This past year, Sadiq won the title of Mr. Gay Great Britain, and his advocacy platform is something he now understands all too well: HIV stigma among gay men, and why PrEP is such an important new prevention tool.

In his emotional and inspiring video as a contestant for Mr Gay World – the finals are happening this week on the island of Malta — Sadiq courageously shares his story of deciding to join the PrEP trial too late, and what the experience has taught him about internalized stigma.

“Something was lifted from my shoulders when I filmed the video,” Sadiq says. “I can now be in a position to educate.”

British PrEP advocate and gay internet personality Greg Owen understands just how frustrating the unfortunate timing of Sadiq’s HIV diagnosis was. Greg, too, was infected with HIV just as he was to begin participating in a PrEP trial. The two men – one a longtime advocate, the other a newly minted one – filmed an interview for #GregChats that is as good-natured as it is emotional.

As for Sadiq’s week ahead in Malta, he intends to showcase both his advocacy and his eye-popping skill as a gymnast and circus performer. Anyone in the world can vote for Sadiq right here.

“The community support I’m receiving behind me is swelling up” he says. “I am more motivated than I have ever been and I feel proud. I know that I am doing the right thing. I want to tell people that there is a way to protect yourself, and there is no need to judge yourself for that. To take your status into your own hands is something empowering.”

He also has no preconceived expectations about his chances to take home the title of Mr. Gay World. Winning is beside the point, Sadiq believes.

“Of course,” he says, “I have already won.”

Mark

(Photo credit: Josh Auke. Videos produced by Nuno Lopes.)

 

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