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.
A New Wish?
March 25, 2015
25 years ago I met Depeche Mode. I was 14. Diagnosed with HIV for three years- but living with it for at least five years at that point- I was already past my expiration date according to my initial prognosis.
When Ryan White passed in 1990, my mom was confronted with her own fears of losing me. She contacted the Make-A-Wish Foundation, and I was an eligible candidate. For about a year, Depeche Mode had provided the soundtrack to my life, so the decision on what to do was easy. Along with my best friend, I was granted backstage access before a show on the World Violation Tour (in support of Violator, the album that birthed Personal Jesus AND Enjoy the Silence).
It was awesome.
25 years later, and my life with HIV bears little resemblance to then. Today I speak openly about living with HIV with my partner, Gwenn. I take my HIV meds, eat well and drink lots of water. Back in 1990, there weren’t any effective treatments, and I’d never brought up HIV with my friends, not even the one whom I invited to meet Depeche Mode with me…
So, my question is: in outlasting HIV and my prognosis, should I be eligible for another wish? Even though I am pushing 40?
If so, my wish is that a cure for HIV is found. Larry Kramer recently spoke out, calling for the push for a cure and railing against the status quo of what is the living-with-HIV experience for those with access to treatment. I agree with Larry, and it seems like hardly a month goes by without a promising article on new research that- if properly funded and executed- could lead to an end to this viral reign of terror.
But it can only happen if we speak out for its need. Treating HIV is great- I’m all for better treatments with fewer side effects and access to HIV drugs for everyone living with HIV. But the endgame should be complete eradication.
Until There’s a Cure… There’s The Cure
February 16, 2015
This year Friday the 13th and Valentine’s Day ended up back-to-back. Which, considering how masochistic the emotion of love can be, seems quite appropriate. But, without love, I’m pretty sure I wouldn’t be here. I’m going to write a list of a few of my Loves and, if mine inspires, then take a moment to reflect on your own.
In some particular order….
From meeting Depeche Mode through the Make-A-Wish Foundation in 1990, to learning how to write my own songs as Synthetic Division, music has been a pillar in my life. Last year, I started playing keyboards for my friend, Alethea, in her band Ships in the Night. Most recently, I had the chance to sing on Friday the 13th, when my friends in Bella Morte and The Secret Storm played a show. The opening band, A University of Whales, invited me up to sing “Close to Me” by The Cure. “Until there’s a cure… there’s The Cure!” (Garth McMurray’s brilliant phrasing.)
I’ve always had a sweet tooth. These days it manifests in my daily iced mocha, but the love has been there as long as I can remember. I get the argument that sugar is a drug and we consume far too much of it, even unknowingly. I’m more conscious of that the older I get. And I’m not certain, but before HIV meds were an option, I’m pretty sure that massive Slurpee consumption helped stave off my pet virus…
I still remember my first system, the Atari 2600. And my first game, Berkerk. And I still play to this day. A few years ago, me and my friends even designed little red ribbons for emblems on World AIDS Day…. before going into Halo and mock-killing everything in our path. But it was the thought that counts. And I think about videogames a lot.
They call it sports entertainment. But it’s pro wrestling, and it has been my soap opera for a long time. These days I lament that I’m not writing the storylines. It’s an imaginative world, and when it’s fun, there’s nothing like it. Now that I’m older, I do worry about the head trauma and future health of the performers… at times that does take away a bit of the fun. Ah, why does the real world have to invade our fantasy realms? (Read my POZ column about interviewing my all-time fave, Ric Flair.)
I’ve been fortunate- I haven’t had a relationship end badly. Well, in high school it’s the only way they can end sometimes. But I’ve never had any real lingering resentment for someone who I’ve had a relationship with. Now, I’m glad for every step along the way, from the first peck on the lips in the 6th on… you grow with each experience, and learn a lot about yourself through the eyes of someone who loves you.
My family has always been supportive. I know a lot of people don’t have the luxury of this, and how heavy that can weigh… my medical experiences (and smartass attitude) really put my mom, dad and brother to the test. And they’ve always passed with flying colors.
I’m lucky to have such a loving partner. We’ve been together 16 years, and in that time we’ve dealt with a lot of highs and lows. But the lows are just the things that life throws at you- and it’s so much easier to deal with that when you have someone to lean on. And a shoulder to offer in return.
Of course, there are many more things that I consider loves- but I hope you enjoyed this little peek into some of things that make me tick.
Post-Show Attack of the Hemophilia!
August 12, 2013
Me with Andy, Tony and Gopal of Bella Morte moments after the show (photo by Angel Miranda)
At the Infusion Center at UVA, about a week after the show. (photo by Gwenn)
So the big show on August 3 with my friends went well… very well! It was unbelievable how many people showed up- close to 400. There was such a great energy, it was by far the best show I’ve ever played or have been involved with.
The venue was very surprised by the turnout, too- we are all local (Synthetic Division, Lauren Hoffman and Bella Morte), but had quite a few in attendance who traveled great distances for the show. One couple drove from Massachusetts to Virginia. So many friends and strangers, from far and wide, made the night an unforgettable one. Included were my good friends from AIDS Services Group, who were kindly on hand to give out free condoms at the Synthetic Division merch table.
I got choked up a couple of times during the night- once on stage. The third song of our set, “Borrowed Time”, is about the notion of not knowing how long you have left… I wrote it about ten years ago, and as it started I thought about friends I’ve lost… and how lucky I was to be standing on that stage. There have been a lot of times in my life where things could have gone the other way.
The next time was during Bella Morte’s set. I scrambled up close to the stage and stood on the right side with my shoulder resting against the wall. This was Gopal’s first show in seven years with the band he helped found. As I watched him play, a memory came back of one of the first times I saw them play in the basement of Tokyo Rose. I went there sick, by myself, in my pajama bottoms… and leaned against the right-side wall. When that memory hit, tears just started to flow, and I let them.
Another unforgettable moment- the last song in my set was “Close To Me”, a cover of the Cure’s song. My goddaughter, who is almost 5, loves my version. Whenever the original comes on and Robert Smith starts singing, she asks. “Who’s that? Where’s Shawn???” It’s too cute. She was in attendance at the show, and I dedicated the song to her- which I kind of botched. After we were done, I heard that when the Cure song started my goddaughter- who was wearing protective headphones- tore off her headphones and listened to the whole song without them.
There are so many moments that were great, but those are just a few and I have to get to the aftermath at some point, so….
About five days before the show I bumped my side. It’s embarrassing, as many hemophilia-related injuries can be… I was out to eat with friends, there were five of us, and I got to the booth first and slid in… I didn’t see that there was a steel beam coming down from the wall into the booth and I slid right into it. It hurt like hell, but only momentarily. I knew it would leave a mark, and the next day a small bruise appeared.
After a couple of days I forgot about it.
A few days later was the day of the show, which includes hauling equipment out of your house, into the car, and into the venue. Then the show itself- which I hopped around onstage for and even engaged in a pratfall where I gingerly fell to the ground before leaping to my feet just in time for the last chorus. Later that night, when my goddaughter was ready to go, I helped carry her to the car…
Anyway, the day after the show my side was killing me. And that little bruise? Now it was huge. I ended up treating it with clotting factor at home- which I quickly ran out of. Then when I went into the hemo clinic to show my hematologist, she kind of freaked out over it. It’s been quite the adventure, not only treating this wound but also trying to get the mail order pharmacy to actually send me more clotting factor. So, this week I have more treatments lined up…
Which begs the question: was it worth it?
Abso-fucking-lutely. A little reality check after an unreal night seems cosmically appropriate, and I’m okay with that… the only thing I’d change is how the injury started. Sliding into a booth is pretty damn lame.
The night before our big show, Josh and I pose with Lauren before taking in some Yacht Rock
The view from the Infusion Center. I turned my bleed into a skyscape.
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.
C’ville’s First Pride Festival a Success
September 17, 2012
photo by Vannathan Hugh L S
Last Saturday, my beloved hometown of Charlottesville hosted its first ever Pride Festival. I heard about it a month or so ago, when my good friends in Bella Morte contacted me about singing a song during their 30-minute acoustic set. Of course, I couldn’t resist being a part of this event to show my support for a community that has shown me so much support since I decided to speak out about being HIV positive.
More on that in a moment. Here’s me singing The Cure’s “Close to Me”, with Bella Morte’s Tony Lechmanski on guitar. He worked up such a great version of a song that is primarily keyboards and bass.
The energy at this event was wonderful. The Facebook Event page blew up with people RSVPing “Yes”, close to 1,000 by the time the event rolled around. Of course, there was the usual Failbook posts about not being able to get a free t-shirt at the event, or wondering if there were going to be too many couples there. Some people really struggle to see what an event like this is truly about- I’m thankful that I got exactly what this event was, and was happy to see a real turnout of support in a packed park full of great energy.
Tony, Andy and Marshall of Bella Morte (photo by Vannathan Hugh L S)
Performing Earth Angel. Love this photo, another one by Vannathan Hugh L S!
Before their set, Bella Morte’s singer Andy Deane had a funny line. “If we seem nervous we apologize- we just didn’t realize there’d be so many gay people here.” Everyone laughed. After they played four songs and Andy invited me up, I said: “If I seem nervous, I’m sorry- I didn’t realize Bella Morte would be here.” Everyone from vendors, to performers to attendees just had a huge smile on their face. Undoubtedly the result of this past weekend’s Festival will make this an annual event, one I look forward to attending every year.
Why? Because my life today wouldn’t be possible without my “gay allies”, AKA friends. When I was just a confused, 20-year old straight kid in Waynesboro, Virginia with a web site, it was a group of gay men at Poz Magazine that opened my handwritten letter and invited to me New York City. It really was a portion of the gay community that gave me confidence in knowing that, as a positoid, I was a catch as a single man. And, when I wrote My Pet Virus, once again it was the gay community that pulled the strings to get that book published.
I am forever indebted, and forever grateful.
My New Music Video, “Stay Awake My Precious Child”
August 1, 2012
One of the highlights of my summer has definitely been doing music. July was the culmination of months of work and it included two live shows, one in Charlottesville on July 5 and one in DC on July 6. While my bandmate Josh D’Elia was in town for those, we shot a music video with the aide of our good buddy, Jeremi Rimel of Miscreation Toys.
The song is called “Stay Awake My Precious Child” and the video is most certainly inspired by the 80s, the decade that gave me both my love for Depeche Mode and the Cure as well as HIV. Of all of the songs on my band’s new CD, Numb to the Numbers, this is the one I am most proud of. The lyrics are below.
Stay Awake My Precious Child
(Synthetic Division, 2012)
you won’t find your place
searching with a guilty look
so misplaced is gathered rage
an anger that’s misunderstood
sadness goes around
stays until it’s been replaced
i hold hope, you’ve let yours slide
it’s easy, here is your plan
stay awake my precious child
some may act their age
some may turn the other page
some may crack another’s book
some will earn another look
i know where you want to hide
just reach out
help is at hand
i hold hope, you let yours slide
it’s easy here is your plan
stay awake my precious child