Posts Tagged ‘Recreation’
Tuesday, September 27th, 2016
The Centers for Disease Control and Prevention (CDC) has produced a music video that joyfully educates gay men about HIV prevention options. And it is foot-stomping fabulous.
The song, “Collect My Love,” was released by The Knocks and it features vocals by Alex Newell, the young gender-bending singer who rose to fame by stealing season three of the television series, Glee (his rendition of “Boogie Shoes” on that show is a one-way ticket to my happy place).
In the CDC music video released today, Newell performs the song in a crowded, gay-friendly dance club. The atmosphere is ebullient and cruisy, with gay men making connections left and right. That’s where HIV prevention comes in.
Gay couples meeting at the club are shown later, as their relationships develop. There is a condom negotiation, a man shown taking PrEP, and even a character who discloses he is HIV positive and undetectable. The CDC has filled the video with every prevention method available, and they do it in a sex-positive, non-judgmental atmosphere. The video was created as part of the “Start Talking. Stop HIV.” campaign that reaches out to men who have sex with men (MSM), particularly African-American and Latino gay men.
In an exclusive interview with Alberto Santana of the CDC’s Division of HIV/AIDS Prevention and Manny Rodriguez, part of the creative team at agency FHI360, both men made clear that solid research was their guide.
“This is an authentic campaign,” said Rodriguez, “with gay men involved in both the campaign staff and creative team. Our goal was to marry CDC research with something that is accessible and enjoyable to watch.”
“We know that having conversations about HIV can increase good health outcomes and strengthen relationships,” said Santana. “We also wanted to playfully connect to pop culture. We are putting out important information, and doing it outside the normal means.”
The CDC is exceedingly careful to provide scientifically accurate messages, but has certainly never delivered these messages in such an innovative and entertaining way. The video incorporates both PrEP and the fact people with HIV can become undetectable — two important and often misunderstood issues being heavily discussed among the gay community right this minute.
The men featured in the video are youthful and attractive, but blessedly, they look like young men you might actually meet in a club, not unattainable icons from the pages of Men’s Fitness. In fact, there’s a plus-sized bear seen tearing up the dance floor who walks away with the video during his few seconds on camera. In my mind’s eye, that jubilant, self-possessed man is not going home alone.
Sure, the world conjured in the CDC video may not reflect all interactions among gay men as we know them to be. Stigma and judgment still exist and are practiced nightly in clubs throughout the country. But I wholeheartedly support this alternative, aspirational world, where gay men live joyfully and play responsibly. That’s the world I want to live in.
The video will be shared on social media and through CDC’s community partners. But why wait? Check it out, and share it with your networks. Discuss it. Start a conversation about the ways we can protect ourselves and our community.
And put on your dancing shoes.
Tags: acting, advocacy, culture, gay, hiv, physician, PrEP, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Monday, September 19th, 2016
When this blogger chose to join protesters at Chase Brexton’s annual “Charm Ball” to voice concern over the direction of Baltimore’s largest healthcare provider to the LGBT community, there was little doubt there would be some tension at the elegant affair.
Sure enough, urgent concerns were ignored and belongings were policed. There were stern warnings from security and more than one intimidating confrontation.
And that’s only what happened between Chase Brexton and their own guests. Really. The organization can’t seem to make a gracious move these days, even on their most elegant night of the year.
About thirty protesters, most of them patients of Chase Brexton, gathered outside Baltimore’s Railroad Museum on Saturday night, waving signs to cars as they entered a private parking area. As guests made their way toward the entrance, protesters called out “Rehire! Reform! Replace!” in reference to rehiring the five managers who were fired in an effort to intimidate remaining staff out of joining a union, and to replace CEO Richard Larison for creating an atmosphere of embarrassment and distrust at the health center.
Soon, event organizers installed a black paneled curtain to partially block the guests’ view of protesters. It was a terribly ironic sight, watching Chase Brexton’s attempt to literally blot out their own patients from view, but we’re dealing with an agency that has been tone deaf to community concerns for many months now.
Itta Englander, a Baltimore City resident who attended the event with her wife, had donned a lovely black gown for the Charm Ball, and even indulged in high heels, despite her pregnancy. She wanted to look great for her wife and for others at their table, all of whom were associated with a company that donates to Chase Brexton.
“I’ve been reading about what has been going on with the firings of managers there,” Englander said in an exclusive interview. “We saw the protesters when we were driving in, and I wanted to talk to them. I know the situation has been really, really tough.”
So, after being seated at her table and enjoying some of the program, Englander strolled out of the venue to have a chat with protesters. She listened to the concerns of several patients and met the wife of fired nurse practitioner Jill Crank, who spoke emotionally about the personal toll of the firings. Englander accepted a few printed flyers about the controversy and took some baked cookies to share with her table.
Those few minutes, and her sympathetic chat, would have harsh consequences.
When she attempted to re-enter the Charm Ball, Englander was stopped by organizers. “They wanted to know my name and my table number and see my ticket, all of which I produced. Then they said I was a ‘disruptive influence’ and they would not let me back in.”
Itta Englander was treated as if her time with protesters had exposed her to something terrible, a fast-spreading stomach virus perhaps, and nothing short of immediate quarantine would protect the other guests from heaving their soup course onto reams of black taffeta.
Without her phone or car keys, Englander asked that word be sent to her wife that she had been barred from coming back inside. That’s when event security decided to intimidate a second Charm Ball guest.
According to Englander’s wife, who asked not to be identified, security came to her table and removed her from her seat for a tense chat. She was told that Englander had attempted to re-enter the Charm Ball “with contraband,” and that she had “gone with the protesters.”
Englander’s wife could not have been more flabbergasted if she had been told that her partner had left the Charm Ball to join the traveling circus. But security wasn’t done with her. “They wanted to know if I was going to cause a scene,” Englander’s wife said, “and they wanted assurance I would not be disruptive before they would allow me to return to my seat. They never told me Itta was waiting for me outside.”
And yet she was. For more than thirty minutes, Englander uncomfortably stood in her heels on the sidewalk outside, waiting anxiously for her wife and finding nowhere to sit in her gown and rest. When she attempted to speak to Charm Ball organizers about her plight, they found her presence so noxious they literally turned their backs and walked away.
She eventually received help from the protesters, one of whom lent Englander a cell phone to contact her wife, who promptly came outside. The two of them left immediately.
“I know there are always two sides to an issue,” Englander said about her charmless evening, “but when one side is so guarded and paranoid, they just come off as unwilling to listen, and even uncivil — even to their own donors or people who are part of your core group. There were a number of ways the whole situation could have been handled better.”
There are few sights this blogger has witnessed in 30 years of HIV activism as outrageous as an organization literally constructing a curtain to hide their own, already marginalized patients from the view of donors. Or the smug smiles on their faces as they did it. I will not soon forget it, and neither should you.
It brings back memories of a generation ago, when HIV was new and ignorance was king, when fear and self-protection prevented the self-serving from hearing the facts of the matter, when the diseased unfortunates were hidden and ignored, when small-minded people simply turned their backs on needful voices.
But as has been clearly established, that kind of irony is lost on the leadership of Chase Brexton Health Services.
Tuesday, August 2nd, 2016
The International Olympic Committee (IOC) is a very touchy organization, most especially when it comes to the Olympic rings. They guard their trademark jealously and litigiously, commonly suing anyone who dares to approximate the iconic rings for their own purposes. Even local street vendors during the Games have been shut down for violating copyright.
Anthony Braswell wasn’t thinking about that when he and a co-worker came up with a dangerous idea. It was 1995, and Atlanta was in the height of Olympic fever as the city prepared to host the 1996 Summer Games.
Braswell served as Director of the Grady Health System Infectious Disease Program (IDP), Atlanta’s new HIV clinic. One day he and his medical director, Dr. Jeff Lennox, were chatting about the enormous HIV education opportunity the Games presented. If only they could garner the attention of the worldwide media that would soon be streaming into the city for a two-week stay.
“A basket of condoms was sitting on the conference table,” Braswell said in an interview with My Fabulous Disease. “Jeff took five condoms out and starting arranging them on the table, and joked that we should make the Olympic rings out of them. I remember looking at him and saying, ‘yeah. Play safe.’ And that is how it started.”
At the time, they didn’t burden themselves with whether or not creating such a campaign was legal, or what the response of the mighty IOC might be. Or exactly how it might be done. They just started working.
“We didn’t think about next steps,” said Braswell. “We were just enjoying the simplicity of the message. There was no budget, no money at all for this idea.” That problem solved itself when people began offering free services to design, photograph, print, and distribute a full-color poster of the fledgling idea.
A marketing company in Los Angeles stepped in with a photographer and studio time. “They took great care in matching the color of the condoms to the Olympic ring colors,” said Braswell. “They also learned that the lubricated condoms caused damage to their camera lens, so they had to scrap those and find unlubricated ones.”
When the drafts of the poster arrived from a volunteer marketing company, Braswell couldn’t believe that “our crazy idea came to life. But it was missing something.”
Meeting with others on his clinic staff, the group realized the “Play Safe” message simply would not translate to scores of international Olympic visitors. “To be effective we needed to communicate with many different nationalities, many different cultures,” Braswell recalled, “so we contacted all sorts of international groups to determine how the ‘play safe’ message would translate.”
They added a border to the central image that spells out the “play safe” message in eighteen languages. “The hardest one was Chinese,” said Braswell. “There were no symbols that delivered the message of safe sex, and we wound up saying ‘have good sex.’ But they did not have a symbol for ‘sex,’ either, so in the text we actually had to spell out the word in English.”
A final graphic detail was adding the phone number for the Georgia AIDS Information Line, a number that still operates today. “We didn’t ask their permission,” Braswell said, because he wanted to protect them.
By then, a growing array of Atlanta HIV advocates, from gay men to the staff of AIDS service agencies to health department employees, had heard of the campaign plans and stood ready to accomplish the most daunting task of all: distributing the 750,000 copies of the poster, which a Los Angeles movie studio had paid to print and shipped directly to Braswell’s home.
“The weekend before the Olympics, several large trucks pulled up in front of my house,” Braswell said. “Over one thousand boxes were on them. I was horrified. We filled every inch of my house, floor to ceiling with boxes, and there were still more to go. We took one truck to the clinic and hid about 400 boxes in the storeroom. Even my neighbor put a hundred boxes in her living room.”
Braswell, and the army of volunteers ready to unleash the campaign, knew full well how much the poster would infuriate the IOC. Any potential fallout very likely emboldened them, as much for the publicity as for the fact there was no love lost between the citizens of Atlanta and the IOC. The aloof and arrogant president of the IOC, Juan Antonio Samaranch, had actually asked locals to address him as “your excellency,” a request that went over like stale cornbread in a Southern city so unpretentious it featured a fleet of pickup trucks in its opening ceremonies.
On the opening weekend of the Atlanta Olympic Games, the plan was executed. “It was all very covert,” said Braswell. “Friends working in the Olympic Village helped us sneak the posters in.” Meanwhile, other volunteers had jobs at the hotels, including those where media was staying, so under every door they slipped press packets that included the poster and a statement about the need for AIDS awareness and safer sex materials. The poster was wall-papered on light posts, in store windows and in restaurants throughout the city.
Figures differ about the availability and number of condoms distributed in Olympic villages over the years. In a recent Slate article, Atlanta in 1996 shows a significant dip from the number of condoms distributed in previous Olympic villages – and even these figures are disputed.
Braswell doesn’t believe many condoms were distributed in Atlanta’s Olympic village. “When we asked about making condoms available, the Atlanta Olympic Committee said no, telling us that there would be no sex in the village. Oh my God.” The attitude contrasts sharply with the 450,000 condoms that will be made available to athletes in Rio. “What a different world we live in now,” said Braswell.
The 1996 poster effort, once the Games began and the materials got out, yielded… not much. At first.
“For a couple of days we heard nothing,” said Braswell. “And then the press began. Officials from the IOC and the Atlanta committee were looking for the people ‘who had done this to the Olympic rings.’”
In a city containing more press than any place on earth during that time, the Olympic condom rings gained traction, leading to officials having to answer questions about whether or not there was an “official condom of the 1996 Olympic Games.” Reporters gleefully reported the answer that no, there was not.
The attention was glorious but short-lived. During the second weekend of the Games, a bomb was detonated in Centennial Olympic Park, an act of homegrown terrorism that stole the headlines and broke the hearts of the good people of Atlanta.
The tragedy took the heat off of the condom poster controversy and shifted attention to the very serious business of security and the bomb’s aftermath. The poster disappeared from media reports as quickly as it had appeared.
As with most acts of activism, whether a flash mob or a protest, the Olympic condom ring poster found an audience, made its point, and was gone.
“In the end, the campaign worked,” Braswell said. “I am so proud of the people who believed in this effort. And this was twenty years ago, before the power of social media!”
“No matter,” Braswell concludes. “It worked. And we pulled it off.”
(Condom distribution chart: Holly Allen, Slate.)
Tuesday, July 26th, 2016
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!)
The MSMGF pre-conference is uniquely designed to address the issues and needs of men who have sex with men (MSM) around the world.
The Thrilling Treatment Access March on the Streets of Durban
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.
BONUS Video: An Interview with PrEP Advocate Jim Pickett
An HIV+ Gay Man is Erased by the Military and a Plenary Protest
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.
The Eye-Popping Global Village and a Party Without Pants
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.
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?
Tags: advocacy, Aging, aids, barebacking, conferences, criminalization, culture, gay, gratitude, help others, hiv, meth, physical, physician, politics, PrEP, recovery, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Thursday, July 7th, 2016
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.
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.
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.
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.
I 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!
Tags: advocacy, aids, criminalization, culture, gay, gratitude, help others, hiv, politics, PrEP, Recreation, serosorting, Sexuality, stigma, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »
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.
Photographs 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.
(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.)
Monday, June 13th, 2016
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 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 . . .
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.
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.
Yes, I’m beautiful,
And I’m here.
And please, my dear friends, be well.
Tuesday, June 7th, 2016
There’s more room in a broken heart.
— Carly Simon, “Coming Around Again”
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.
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.”
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.”
Will 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.”
(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.)
Tags: advocacy, Aging, gay, gratitude, help others, hiv, meth, physical, physician, recovery, Recreation, Sexuality, stigma
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 2 Comments »
Sunday, June 5th, 2016
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.
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.
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.
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.
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.
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.
(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.)
Tags: advocacy, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, PrEP, recovery, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Sunday, May 22nd, 2016
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.)
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.”
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!”