Two years ago, I walked into Shenandoah Joe’s on Preston Ave. in Charlottesville. Postured on a tall-legged, wooden barstool, a young man in his early 30′s busily dashed off letters on the keys of his laptop. White steam swayed side to side from the rim of his coffee mug, and then cut capers skyward. The vapors vanished but the rich, warm aroma of the roasting coffee beans lingered.
As I entered the coffee house, I carried a paperback in my hand—My Pet Virus: The True Story of a Rebel Without a Cure by Shawn Decker (Tarcher/Penguin, 2006), a tape recorder, ink pen, and pad. Sent by Dave Smitherman of Palari Publishing whom I had interviewed with weeks earlier at the Omni, I arranged to meet Decker for a magazine assignment (which you can read here) to discuss his book, life, and accompanying activism.
Born with a rare blood clotting disorder known as hemophilia, Shawn Decker had to receive frequent blood transfusions to counter his body’s unresponsive platelet count and clotting factor. In 1987, while in sixth grade at Westwood Hills Elementary School in Waynesboro, Virginia, Decker and his family learned startling news: Shawn, an 11-year-old boy, was HIV positive, a result of a blood transfusion gone wrong.
Having never met Decker before, I glanced down at the cover of the paperback. A Morrissey (of The Smiths) looking character peered through a windowpane. I flipped the book over, scanned the publicity photo on the back to assure myself I was about to approach the correct person. The man turned around, rising from the stool, and offered a smile and his hand.
“Shawn Decker,” he said.
“Nice to meet you,” I responded, shaking his hand. “Working on your next book?”
“Trying to polish it off,” Decker replied.
We conversed for a good hour or so then arranged to meet once again for a follow-up. I can say, without hesitation, meeting Shawn and discussing what drives him in life was one of those rare moments in life I will never forget, that I think about from time to time as a driving force in my own life — how to create a life of meaning and purpose.
Considering the time period of his diagnosis (1980s) and the lack of knowledge within the medical and scientific communities regarding HIV and effective treatments, Decker, like many others, were essentially given a death sentence with their diagnosis, a timeframe yay or so big. Decker was told he wouldn’t make it out of high-school. That was twenty years ago.
Recently, I spoke with Shawn again (and because of Shawn’s sick sense of humor, I have decided to abbreviate my name and his with three initials instead of the normal two).
A lover of music, his dying wish (quite honestly) was to meet Depeche Mode — which he did, through the Make-A-Wish Foundation. Since, music has carried over and on in his life. Now on tour with his band Synthetic Division and friends, Bella Morte, sponsored by MTV, POZ Magazine, and One Condoms, I was curious to see what the frontman of this electronica number had to say about everything from music to the recent passage of health care reform.
JEFFREY PILLOW: Shawn, first thank you for agreeing to this little impromptu interview. I know you’re a busy bee right now with the tour underway.
SHAWN DECKER: No problem. Thanks for having me.
JWP: Tell me a little about the new album and Synthetic Division.
STD: I came up with the name Synthetic Division in 10th grade, the year after I met Depeche Mode through the Make-A-Wish Foundation. Music really was a meditative force in my life, and for the first decade-plus of my diagnosis I didn’t have the aide of HIV medications. Getting into music heavily just after my diagnosis at age 11 had to have had a calming effect — first listening to music then exploring the creation of it beginning in high school.
The new LP, Symptom of Life, was inspired by the desire to commemorate twenty years of survival. In 1990, my prospects weren’t good. I was doing well at the time, but the medical opinion of the day was that I probably wouldn’t live fours year to see high school graduation. I wanted to celebrate the fact that I lived past those expectations, that I found love, discovered how to write a decent tune now and again, and do something I always wanted to do: tour with my music. I tour all the time with Gwenn, my partner of 11 years, talking about HIV prevention and safer sex. Part of what got me excited about the Symptom release was combining an educational message with my music.
JWP: What makes this tour so significant — other than living the dream of a rock ‘n roll tour with fellow friends Bella Morte?
STD: Bella Morte have been such an influence. When I moved to Charlottesville from my hometown of Waynesboro in 1998, I really wanted to pursue my music. They booked my first show in which I’d be singing live.
JWP: Any butterflies in the ole stomach?
STD: Ha, yeah. I was nervous as hell, but had been pouring out intimate details about living with HIV for a few years, so I used that as foundation on which to build up the courage to get on stage.
For quite a few years there’s been an open invitation to go on tour with them. It just happened that this was the right moment and time for me to take them up on the offer. I love the guys in Bella Morte. They are an incredible band and just good people.
Also, for this tour, one of my best friends that I’ve known since high school, Josh D’Elia, is playing these shows with me as a member of Synthetic Division. The whole thing is just awesome. I’m surrounded by friends, playing shows and giving out free condoms along the way.
JWP: Free condoms.
Where were they at when I was in high-school? Those things are expensive when all you’ve got is milk money.
Speaking of that, you have a few sponsors along for the ride, correct?
STD: Yes, One Condoms has provided 2,000 condoms. They are so cool. They come 2 per container, with a Synthetic Division sticker on one side.
JWP: Sweet. Dual purpose. Protect the jimmy one night and introduce random strangers on the highways via sticker on the bumper of your car to a fine band, one Synthetic Division.
STD: Also, POZ magazine and MTV Staying Alive are on board as promoters, getting the word out on Twitter and their web sites. In the midst of all of this, MTV Staying Alive have brought me on board as an official Ambassador for their grant-giving Foundation. What’s funny about that is that I’m joining the ranks of their two celebrity Ambassadors, Kelly Rowland (Destiny’s Child) and Travis McCoy of the Gym Class Heroes. I’m like their bizarro universe ally, they are known for music and care about the issue of HIV/AIDS, and I’m known for having AIDS and happen to care about music quite a bit.
JWP: I was reading on your POZ magazine blog that April marked the 20-year anniversary of your dying wish to meet Brit synth rockers Depeche Mode and the release of Violator. It also coincided with the release of Synthetic Division’s new album, Symptom of Life. Coincidence or?
STD: At the end of last year I ended up in the hospital due to a side effect of a hemophilia medication. My health is generally pretty good, I get a lot of rest and eat decently. I take my HIV meds as prescribed, do what I have to do. But at the end of last year I had a cough and some pesky nosebleeds that went on and off for about a month. The hemophilia medication caused me to retain water, which I was drinking a lot of due to the cough. It was just a cycle that led to disaster. One morning I woke up and felt like I was having the worst panic attack imaginable. It scared the hell out of me and Gwenn, who had to drive on very snowy roads to get me to the hospital.
JWP: And we got pounded with snow here too.
STD: Tell me about it.
I tell that story because it was after that two or three day stay in the hospital that I realized I kind of take life for granted these days. It could have all gone away very easily. It really motivated me to look back to that Wish, and it just made sense that I needed to take some time to focus on one of my loves, music, and start writing some songs again.
JWP: I know you watched the buildup of the health care reform legislation and its passage fairly intently. As someone who would be considered a “walking pre-existing condition” for insurance companies, what did this bill and its passage entail for the millions of Americans like yourself living with HIV/AIDS?
STD: Some of the changes will take some time to go into effect, but one of the biggest is that people with HIV will no longer have to wait for an AIDS diagnosis, which is when your health is really in jeopardy, to be eligible for Medicaid. This is key. It has tremendous potential to improve the health of people with HIV. The passage of health care reform will also make obtaining private insurance a reality for people living with HIV, who aren’t denied the opportunity to purchase, but are basically told to go elsewhere due to ridiculously high premiums based on HIV status.
People with HIV can lead healthy lives if given the chance. And the passage of this new legislation is a huge step in the right direction for the community.
JWP: Considering your intimacy with the disease, prescription drug costs, hospital visits, and the close-knit HIV community you’re a part of and reach out to, how does this bill and its long-term goals make you feel? Pretend I’m Oprah or Dr. Phil; actually scratch that, not Dr. Phil, just Oprah, let’s talk about feelings.
STD: We’ve come a long way. Most people have access to HIV meds through state-run drug assistance programs. But we still have waiting lists in many states, where over 1,000 people can not get HIV medications that will help turn their health around. It’s all about getting away from the mentality that we are a bane on society due to a medical condition. People with HIV can lead happy, healthy and meaningful lives. We can also help against the spread of HIV by sharing our stories, making this real to people who think this stuff “happens to other people.”
We are all “the other people.”
We share this strange existence that is life as a human being in this particular moment in time. And in this particular moment in time, sexual health is very important.
I guess it has always been. But we as a species didn’t learn the lessons of previous sexually transmitted infections–such as syphilis, that killed millions and millions of people before treatments were discovered. Sex doesn’t have to be an uncomfortable topic, yet it still is. We are smart, us humans, but right now we can not afford to remain on such a slow learning curve. Anything that bends that curve in the right direction, such as the morality of passing health care reform, which is a moral issue, a real one; not just the disguised discrimination that usually falls under the tag of “moral issues.”
My feelings are that I’m personally very happy, and I just want everyone to have the opportunity to experience and enjoy life as I have. It’s been a bumpy ride at times, but I think all of these medical situations have made me more compassionate. And in the case of HIV, I’m living with a preventable illness. Being a part of an incredible team of activists and educators, it makes me feel honored, really. I have love in my life, purpose and a healthy respect for my own mortality that keeps me honest.
JWP: Shawn, thank you again. And best of luck with the new album and tour, be it with Synthetic Division or with Gwenn.
Friday, May 21 at 7:00 PM, Shawn Decker’s band Synthetic Division will perform at the Starlight Cafe in Lynchburg, Virginia, and Saturday, May 22 at 10:00 PM at The Southern in Charlottesville with Bella Morte. Decker is the author of the memoir, My Pet Virus: The True Story of a Rebel Without a Cure. The tour is being sponsored by MTV, POZ magazine, and One Condoms. For more information, visit www.synthetic-division.com or www.shawnandgwenn.com.
Photo: Gwenn and Shawn Decker. Credit to Jeffrey Pillow.