Never Forgetting Sean Sasser, 1968-2013
August 8, 2013
Sean Sasser, whom many of us were introduced to through our televisions in 1994 via The Real World, has passed to spirit at the age of 44. My heart goes out to his friends, family and partner, Michael Kaplan.
Sean was one of my heroes. When The Real World: San Francisco aired on MTV in 1994, I had a year’s worth of high school diploma under my belt but no real plan about what I wanted to do with my life, which made me not too much different from most 18-year olds. I was a fan of the reality show, The Real World, and loved the previous season set in Los Angeles. When episode one of San Francisco came on, I quickly realized that I was in for an entirely different experience…
Pedro Zamora, one of the housemates, was HIV positive. He began dating Sean Sasser, who was also HIV positive. Pedro was an activist and educator, and Sean had a quiet, calm demeanor. I fell in love with both of them. They offered a glimpse into a future I desperately wanted- the ability to talk to friends about HIV (something I had not yet done at age 18) and finding a partner that I could share my life with.
That season of the show was a game changer for me. But before I could even process how the show had impacted me, Pedro Zamora passed to spirit. I was devastated. Just as I’d learned about a life that could be possible with HIV, I was also reminded of something that I feared…
When Sean Sasser was introduced to us, there weren’t any truly effective combos. As people with HIV, there was a sense that we were ticking timebombs. Yet, there was Sean Sasser, a year later at a televised Real World Reunion, calmly discussing he dearly departed partner. Stupid producers cut short Sean’s speaking time- hey, he wasn’t a roommate!- but once again I was moved by him. Judd Winick, one of Pedro’s friends and roommates, called for people to do something about HIV…
I sat on my bed, but I wanted to jump out of my skin and do something about HIV- not as me, though, as someone else. A few months later, I finally opened up. The impact of Sean Sasser and his Real World alum has never been lost on me. Before any of us could crack a laptop or iPhone and search “living with HIV”, there was that group of young people dealing with HIV, conveniently bringing the topic into our living rooms.
I needed that. And so did a lot of other people.
So thank you, Sean, for giving me hope that “poz Seans” can find love and comfort in their own skin.
In 2009, I shared a personal story on this blog about meeting Sean Sasser. You can read it here.
Tomorrow Night! LIVE! … More Than Just A Gig
August 2, 2013
Tomorrow night I’ll be playing a Synthetic Division show, opening for my friends in Bella Morte. Another talented musician and friend, Lauren Hoffman, will also be playing. The venue is the 800-capacity venue, The Jefferson. It’s a big gig.
But for me, it’s more than a gig.
When I first moved to Charlottesville in 1998, one of the reasons was to pursue my music. It was just a cooler town than Waynesboro, where I grew up. Plus, Dave Matthews had broken out of Charlottesville, so why not Synthetic Division as well?
Well, the plan changed when I got really sick in 1999. My t-cells crashed, my viral load skyrocketed. I had no energy. I sometimes complain today about waning energy levels- but in ’99, getting off the couch was a chore. Gwenn had just moved in with me- the ruse of my failing health revealed by our newfound proximity- and I remember her coming home from work around 4 pm. And me being proud to tell her, “I got myself some orange juice!”
Around that time, the local paper did a story on us. It would be our first interview as a couple. I was used to being a poster boy for AIDS, having graced the cover of Poz a couple of years earlier, vibrantly smiling out to the world- my dimple on full display. Gwenn was about to compete at Miss Virginia, and the paper asked her to bring her Miss Powhatan crown to the photo shoot in the park.
The writer was a good guy, I hit it off with him and gave him a CD. “Aside from having HIV, I also do music,” I said not-so-slyly. “Think you can put that in the story?” Charlottesville needed to know their next Dave Matthews was in town, it was more of a humble public service announcement than anything else. “Sure,” the writer said. “Have you heard of Bella Morte?” He gave me a CD, and said their bass player worked at a place called the Cosmic Coyote and he was the person who booked local acts like Synthetic Division.
The album was Where Shadows Lie, and I was hooked. I couldn’t believe an electronic goth act was based in Charlottesville. They had a sound that was every bit as capable as my heroes in Depeche Mode…
Before I could pay that bass player a visit to pitch my band, the newspaper article came out. The cover read, “LOVE AND DEATH”. It was a close-up of me, not really smiling. A Mona Lisa expression. I couldn’t really see my face, my eyes were focused on that one word: “DEATH”. The writer apologized profusely, cover text wasn’t his real estate. The article itself was wonderful and full of heart. And even though my t-cells had dipped well below 100 for the first, and I was actively in the process of dying, I was still taken aback by that word.
After I started HIV meds, I decided I better get that music career going. So I paid Gopal of Bella Morte a visit at the Coyote. When I handed him my music, he immediately put it in the CD player. My songs filled the store. I was terrified. After the six songs were over, he handed the CD back. “So, when do you wanna play?” On spot, we picked a date. When the show came 6 weeks later, I was hoping no one would notice that half of the 25-minute set had been written in the previous 6 weeks…
When the show came, Gopal helped me set up. Gwenn carried my gear in, because she was worried I was too weak to carry my keyboards down the steps at the Tokyo Rose. The one thing a hemophiliac wants to avoid before a show is tumbling down the stairs. Ultimately, I made it through the set, and any mistakes made during my set went unnoticed since Gopal and Gwenn were the only people in the room who’d ever heard my music.
That night started a series of live shows, each one getting better as my health returned. I struck up friendships with Andy, the lead singer, whom I’d sent a fan-email to before I went to see my first show at the Tokyo Rose a few months before I played there myself. I remember oversharing in that email, talking about being sick and just moving the C’ville, and of course my band. Which was just me at the time, by the way. He dedicated a song to me- I walked into that first show alone… when I came home, I told Gwenn, “YOU HAVE TO GO NEXT TIME, IT WAS AWESOME!”
A few years later Andy introduced me to Lauren, another local musician. I didn’t know it at the time, but Lauren had a major label deal at 18. Her experiences with the music industry were what I thought I wanted- until I got to know her and she explained what a major label can do to basically ignore/misrepresent you. As I discovered Lauren’s music after becoming friends with her, I stood in awe of her gift as a songwriter. Like Bella Morte, she had a talent for writing music that inspires genuine emotional reactions.
Being friends with Bella Morte and Lauren Hoffman was a good education for me, and my little misinformed fantasies about “making it in music” were laid to rest- I realized that what’s really important is making good music… creating songs you are proud of that properly represent the emotions that come with this shared human experience…
That is making it in music.
Today, I’m still close with everyone playing this show. One of my best friends since high school, Josh, joined me on my first tour with Bella Morte in 2010 and subsequent shows since then. He lives in Los Angeles and flew into town just to play this show. It’s so much better having a friend onstage than standing up there alone, as I did well over ten years ago… and now, I’m strong enough to carry my own equipment..
Tomorrow night is more than a show. I have incredible friends, the best partner I could have ever wished for and my health. Tomorrow night is an acknowledgment that I’ve made it in more than just music.
A Discussion With My Doctor
June 10, 2013
At my last doctor’s appointment, I talked with my doctor about the recent “HIV cure within months!” headlines that were floating around online and also my decision to switch HIV meds. Part of that discussion is in this week’s Shawn and Gwenn video, as well as an exciting new “Paging Doctor Decker” segment…
Which might just be a flash in the bed pan. Time will tell!
Hope this finds you well.
My Poz.Com Exclusive Article, “Adventures in Baby-Making”
April 8, 2013
I had the pleasure of talking with Mark Zatyrka about he and his wife’s decision to have children using sperm washing. (Mark’s been HIV positive since childhood, his partner, Sasha, is HIV negative.)
Read it on Poz.com here:
Adventures in Baby-Making
Don Drake: Fighting the Good Fight
January 3, 2013
I recently had the privilege of interviewing Don Drake of Victory Programs, a Boston-based non-profit dedicated to helping the homeless, those with HIV/HCV and people dealing with substance abuse issues. Don discusses his former life as pro wrestler “DC Drake”, what it was like wrestling at a time when fears about HIV transmission were rampant and also how it felt when several online wrestling websites erroneously posted the news of his death.
I found out that Don Drake is still very much alive- and that is something we should all be very thankful for because he’s fighting the good fight. Read my interview with Don here.
Find out what the incredible Victory Programs is all about and follow them on Twitter at: @VictoryPrograms.
Our visit to Northampton Last Week
October 28, 2012
Last week we were on the road, speaking for the great folks at the AIDS Foundation of Western Massachusetts at the Academy of Music in Northampton. We really had a wonderful time- it was such a diverse group in age and HIV status. We met quite a few youth peer educators, along with some folks who have already dedicated decades to fighting the good fight. A great trip, made even more special because we got a chance to spend some time with our friends, Mark and Sasha. Like us, they are in a sero-diverse relationship (he’s HIV positive, she is not). But unlike us, they are expecting twins next year!
So it was really cool hang out with them before they embark on the next big adventure in their lives.
Hope this finds you all well. Have a great Halloween!
Happy Birthday, Steve Schalchlin!
October 4, 2012
That’s a mug. It’s where I keep my tooth brush and toothpaste in our downstairs bathroom. And that’s me and Steve. We came upon a cubicle in a mall-type situation in 1998, and decided to get our likenesses plastered on a coffee mug and a t-shirt. Steve gave me first choice: I choose the mug.
Today is Steve’s birthday. I posted this photo on his Facebook Wall. I post Happy Birthday messages on there from time to time, but truthfully, I don’t check in every day and I’m sure I miss some key birthdays… for that I am sorry. I am grateful that I caught this one. When I first went online in 1996, armed with a desire to share my HIV status with whomever would listen, Steve was one of the first people that I found. He was one of a literal handful of people blogging who were HIV positive- if there were more than 3 I couldn’t find them.
He encouraged me to join in. I didn’t want to copy him. He assured me that as a young straight man, I wouldn’t step on his older, wiser gay toes. I took his advice. Steve was the first guy with HIV that had a sense of humor that matched my own. (A shout out to Bret Turner, who I met shortly thereafter!) It was a game changer for me. I was in my very early 20s, and Steve gave me advice and friendship and assurance that I had a place in all of this- that I was a relevant voice and that I should keep talking about my reality as someone living with HIV.
When I met Steve, he was very sick. He’d just started on Crixivan, a drug that saved his life. A few years later, when I got sick, he vehemently told me that I needed to switch gears and start meds. It was jolting. He didn’t pull any punches, and it scared me. I started meds, and it saved my life.
I love you Steve. Happy birthday, my friend.
Georgia Arnold, Mark King and Poz Tackle AIDS2012
July 26, 2012
One of the highlights of my DC trip was attending a Board meeting for the MTV Staying Alive Foundation. This week, Executive Director of SAF, Georgia Arnold, wrote a thoughtful piece for the Huffington Post about how we need to frame the fight against HIV moving forward.
“The truth is, there is no simple answer to this problem. And there is no
single solution that will ultimately eradicate this virus from our
lives. But if we truly want, and we truly believe, that the next
generation of young people should be — and could be — the first
AIDS-free generation in our lifetime, then we must do much more than
this conference is promising. And I believe that the only way that will
ever happen, is when the world remembers to care, remembers that the
problem of AIDS they responded to when it first became known, is still
very much here.”
To read the whole article, go here.
One of the best things happening this week in DC is the continued focus on HIV criminalization in the United States. Poz Magazine caught up with Scott A. Schoettes, the HIV project director for Lambda Legal, to find out more about the ever-increasing, under-the-radar problem. Mark King of The Body was also on hand all week, providing video blogs on his experiences and thoughts regarding the International AIDS Conference. Check them out below!
Be sure to check out all the latest updates from the conference at Poz.com. A big tip of the hat to everyone who weighed in, hugged it out and recharged at this year’s conference. Let’s keep the momentum heading forward, in honor of those we have lost, to guide the newly diagnosed on their new paths and to prevent unnecessary new infections.