Before I Die
November 30, 2015
Before I die… before I die I want to experience something I never have: life without hemophilia. I had a decade without HIV, and I’d like to enjoy as many years as possible on the tail end of this journey without it as well.
As I stood in front of this wall in Charlottesville, I recognized and related to the goals written in chalk by teenagers. I was proud to stand in front of that wall, holding an image of myself in the midst of those teenage years, and realize that I have accomplished a lot of those dreams after three decades of life with HIV. From finding love, to seeing the world…
Some of those goals I can’t reach, but I can live without having made a proper dunk in basketball. I guess I’ll just have to settle with those childhood experiences of dunking my cousins in my grandparents’ swimming pool. Living in Tokyo seems unlikely, but that city does seem pretty cool… never say never I guess.
But ultimately, I am just deeply thankful to be here. My friend Steve Schalchlin, who was saved by HIV medications in the mid-90s, has labeled his time from that point on as “The Bonus Round”. Like him, I have a lot of gratitude for the dumb luck/good fortune of having access to medication when I needed it. In 1999, my journey would have surely ended had I not started taking HIV drugs.
And here I am: still dreaming after all these years. If I don’t meet the goals listed at the beginning of this post, then I’ll certainly die as a happy man. I am content in the skin and spirit that was shaped in large part by the challenges presented- and friendships gained- by living, truly LIVING, with these medical conditions.
So get out there and live.
Thanks to Tristan Williams for taking this picture at IX Art Park. If this post inspires you, please consider sharing it. World AIDS Day is December 1st every year.
That pic I’m holding is from a Make-A-Wish Foundation meeting with my favorite band, Depeche Mode, in 1990. This year, to celebrate 25 years since my “dying wish”, I’ve made a cover album called Shaking The Disease: An Unlikely Tribute to Depeche Mode to raise money for my friends at the MTV Staying Alive Foundation.
You can get the album or listen to it here: http://synthetic-division.com/
Shaking the Disease: An Unlikely Tribute to Depeche Mode
November 19, 2015
This month’s issue of POZ Magazine is all about long-term survivors. And this year marks a special occasion in my own long-term journey as a positoid…
25 years ago, I met my favorite band, Depeche Mode, thanks to the Make-A-Wish Foundation. Back in 1990, the prognosis wasn’t good. But I’ve been fortunate- I had access to great medical care when I got really sick in 1999, and HIV medications not only bailed me out of a scary health situation, but they have afforded me a level of health I never thought possible. So I wanted to do something special this year as a way of giving thanks: record a Depeche Mode cover album. And do it to raise money for my friends at the MTV Staying Alive Foundation, who provide grants to youth-based HIV prevention efforts around the world.
Every little bit helps!
If you’re interested in helping out, you can purchase the Limited-Edition CD at my music site (Synthetic-Division.com) for $25. Only 120 will be available for purchase. On December 1st, World AIDS Day, the album will be on iTunes.
Enter the… Blood Mirror!
October 27, 2015
It’s Halloween season- and that means that a lot of fake blood is being used for cheap scares. But what shouldn’t be scary? Blood donations from the gay community.
And that’s exactly why the art exhibit, Blood Mirror, was created. Using nine blood donations from gay, bisexual and transgender men, the interactive art display is a visually stunning protest of the FDA’s ban on blood donations from non-celibate gay and bisexual men.
Presented by the Visual Arts Committee at Trinity Wall Street, the Blood Mirror will be on display at the Trinity Church (75 Broadway, New York, NY 10006) from November 2 through December 1 (World AIDS Day).
Back to the Future Day
October 21, 2015
So today is the day- the infamous day of the future highlighted in Back to the Future. October 21, 2015. I saw the movie in the theater, and just rewatched the film last month. It still holds water!
Now, we don’t have flying cars as predicted by the franchise, but technology has moved at an incredible clip. In ’85, when the movie debuted, I was most certainly living with HIV though I was two years shy of the official test result. Back then, there wasn’t much hope. But these days there are incredible medications and people working hard to get them to the people who don’t have easy access. (That’s when a flying car delivery service would really come in handy…)
While treatment options have advanced, on some basic educational levels there are still some incredible parallels to 1985. We must continue to educate about the basics of HIV transmission, as well as the importance of testing and healthy living. And put it in a way that even a young, awkward George McFly can understand.
Here’s to hoping that, thirty years from now on October 21, 2045, HIV will be a thing of the past.
A Month of Superheroes: Charles Sanchez and Team Merce
September 4, 2015
This week saw the big finale of the 8 episode original HIV comedic web series, Merce. I was so intrigued when I first heard about Merce last year, via an Indiegogo campaign – could a comedic story centered around a guy living in NYC work? I believed. I donated. I blogged about it.
And Charles Sanchez and the incredibly talented team at Merce delivered. Big time.
I sat down with Charles Sanchez, he at his computer in New York and me at mine in Virginia, to see how he was feeling after accomplishing such a lofty goal with style.
Are you happy with the response to Merce? Any surprising reactions (good, bad, indifferent)?
For the most part, we’ve gotten nothing but positive feedback. Even
people that were apprehensive at the idea of an HIV+ musical comedy,
once they watched an episode or two, were hooked, and find the show
charming and hilarious and wonderful.
have only been two negative comments on our videos, and to both of them
I responded as Merce would and just said, “Thanks for watching and have
a super day!”
would love if every episode had a famous HIV+ person in it, like you,
Mark S. King, Peter Staley, Greg Louganis, Mondo Guerro, Jack
Mackenroth, dreamy Andrew Sullivan and the like. And I’m not sure what
I’d have those people do, but I’d hope that they’d be willing to have a
ball and dance sparkly dances with us! I wonder if Magic Johnson can sing?
We’re still reeling from season 1! But my producing partner Tyne Firmin
and I have talked about what season 2 might look like, and it’s a
definite possibility, perhaps next year. Merce‘s message of
living life with joy and humor and love is and important one, and the
more we can get his silliness out into the world, the better. Soon after
my HIV diagnosis almost 12 years ago, I was told that stress and worry
are some of the worst things for the health of us pozzers, as you call
us (I adore that, by the way). The opposite of stress and worry is joy
and lightness, and that’s what I try to convey with Merce. It’s also how I try to live my life, by choosing joy.
Judd Winick: The Hero Who Crashed The Real World
August 31, 2015
I’ve written extensively about how much The Real World San Francisco influenced me- you know, the season of MTV’s reality show that featured Pedro Zamora and his life with HIV. I wasn’t talking about HIV openly when that aired in 1994. I loved seeing Pedro meet new friends and speak so openly about his experiences.
One of those new friends was aspiring cartoonist, Judd Winick. When he defended the comedic merits of The Three Stooges, I took notice. He seemed like a nice, thoughtful, guy. Back then, The Real World would cast people like Judd, who was hustling to get gigs and find love, which he did with housemate Pam. How Judd reacted to Pedro’s HIV status, with warmness, care and gentle curiosity, really made an impression. When I finally opened up and talked to my friends about HIV, they supported me in the same way.
After Pedro’s passing, Judd dedicated his time to step in and fill Pedro’s speaking engagements, educating about HIV and talking about his friendship with Pedro. One of my favorite books is his graphic novel, Pedro and Me- it really showed me what the experience of The Real World was like, behind the scenes. The book brought me to tears.
Judd has used his platform to explore themes that are of interest to the LGBT and HIV/AIDS communities. His graphic novel, Hilo Book 1: The Boy Who Crashed to Earth is out now. Seth Meyers says Hilo is “a perfect book for any kid who ever needed a friend and then had one with superpowers fall from space.” Big thanks and gratitude to Judd for showing me that friends would be there to support me when I was ready to let them in.
A Month of Superheroes: Georgia Arnold/MTV Staying Alive
August 25, 2015
Georgia, Gwenn and me in 2010
Georgia Arnold is the Executive Director of the MTV Staying Alive Foundation, which fights HIV globally by funding youth-led programs. Over the last few years I’ve been fortunate to see what they can accomplish firsthand, since I’m on the SAF Board. (Full disclosure- I help good people help good people!)
Now, Georgia would be quick to say the grantees who put in the grassroots work in their communities are the heroes. And, well, who could argue with her? Meet the heroes of Staying Alive that protect their communities with innovative HIV education efforts tailored to their own communities needs.
The team that keeps things moving at Staying Alive are incredible. And the tireless efforts of Georgia are an integral part of what makes the foundation so effective. I’m proud to call Georgia a hero in the fight against HIV, but most importantly I’m honored to call her a friend, too.
Keep up with Georgia’s travels and MTV Staying Alive by joining their email list. (They won’t bombard you, about one email a month)
A Month of Superheroes: Ryan White
August 18, 2015
Today marks the 25th anniversary of the Ryan White CARE Act. This federal program has provided so many services to the HIV/AIDS community. Much thanks goes to Ryan White, who passed to spirit in 1990, and his mother Jeanne for their role in changing the way people viewed HIV.
Ryan White’s legacy lives on to this day. I still remember the days when I was a scared kid with HIV, intensely secretive about my status. Ryan’s journey was quite public from the beginning of his diagnosis, and my mother had every magazine that interviewed him and would watch his TV appearances, where he did his best to disarm fears of HIV transmission.
Here are some videos I’ve made about Ryan. And a POZ article I wrote a five years ago about the CARE Act.
Ryan White’s bedroom is on display at the Children’s Museum in Indianapolis. Here’s a brief tour, a video by me followed by a video by Andrea, curator of the Museum:
I animated this video for AIDS Healthcare Foundation, which explains The Ryan White CARE Act and a little bit of Ryan’s history: