If you think there's nothing funny about hemophilia or HIV, Shawn Decker thinks you're probably not much fun yourself. If he can find the...
CHICAGO — If you think there’s nothing funny about hemophilia or HIV, Shawn Decker thinks you’re probably not much fun yourself. If he can find the humor in either disease then, frankly, so can you.
“I know a lot of people think things that have happened to me have been tragic,” he said while in Chicago to promote “My Pet Virus: The True Story of a Rebel Without a Cure,” his wry, self-deprecating book about growing up during the early AIDS era as a “thinblood” and “positoid” — terms he coined to replace labels he dislikes, such as “hemophiliac” and “HIV positive.”
“But I think there are some funny aspects to it — and people laugh about aspects of it when you’re not around.”
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Growing up viral
At 31, Decker has outlived his original prognosis by almost 20 years, and he feels well enough, in spite of bouts of fatigue, to race around the country with his wife, Gwenn Barringer, promoting his book and, on this day, downing a cheeseburger and a glass of wine. He passed when offered a green salad. “It’s part of my longevity,” he joked.
But back in 1987, at age 11, Decker says he was kicked out of sixth grade in his rural Virginia hometown when he was diagnosed with the then-relatively unfamiliar HIV, the result of tainted blood-product treatment for his hemophilia, which had already turned his childhood into a hothouse life of trips to the doctor’s office and dangerous nosebleeds.
When he was finally allowed back on the premises, to start seventh grade, police were parked out front, for some reason, and a flier was distributed announcing that a student with the AIDS virus was enrolled.
As if junior high weren’t excruciating enough.
“Everyone thinks HIV is going to change you, you’re going to look in the mirror and see it. But no,” Decker said. “When I went through puberty, though, that freaked me out. … I hated that much more than the HIV thing.”
Also, he adds, “I had Nintendo. I was well taken care of.”
Preparing to live
Decker vowed the day he returned to school that he would never talk about HIV again — a 12-year-old’s heartbreaking attempt to protect himself. Which didn’t stop him from wondering “how painful is this … you know … death going to be for me,” he said. During those early years, “they didn’t show people with HIV riding bikes and climbing mountains, the way they do now. Anytime they showed people with HIV, they were in the hospital, dying from AIDS.”
The vow of silence lasted a full 10 years — eight years longer, he notes in the book, than anyone thought he would live, and much longer than a huge percentage of HIV-positive “thinbloods” of his generation, who died as a result of tainted blood long before treatments were available, in 1996 (Decker wasn’t diagnosed with AIDS until 1999).
But when he finally opened up about his condition, at age 20, his life opened up, too.
“It was totally bizarre,” he said of the turnaround, which hit him like a death sentence in reverse: He had to prepare for the fact he was going to live.
“I’d realized that one-day-at-a-time, one-week-at-a-time, wasn’t appealing to me anymore — that I had a lot of one-days and one-weeks left in my life,” he said. “So I was like: Wait … What do I do with all this time?”
Once he started talking …
He put his virus to work.
In 1996, he started mypetvirus.com, which was one of extremely few sites back then to discuss life as “positoid” — much less an irreverent heterosexual thinblood positoid from rural Virginia who also writes about his love of pro wrestling, the band Depeche Mode and Drew Barrymore.
“I was trying to put up this straight-laced, educational Web site, but I remember stopping and saying, ‘If I’m going to do this, I’m going to do it my way. I’m going to do it the way I wish I’d seen somebody do it when I wasn’t speaking about it,” he said.
He’s a funny guy (who wears a vampire wristwatch), but his intent was dead serious: “It was important to me to have people who are [HIV] positive stumble upon the site not to get the message that their life is over and there isn’t any hope,” he said. “And it’s a fine line. Because you want to do that, but you also want to get the message across to people who are [HIV] negative: You don’t want to get this.”
A partner in passion
Decker and mypetvirus.com got the attention of the AIDS culture magazine “Poz,” which published a cover story on him then promptly offered him his own column; today, he blogs for the online publication at www.poz.com. He met Vice President Al Gore. He met Depeche Mode. But most important, he soon met Barringer and fell in love.
“Gwenn is really the person who made me see I’m a writer,” said Decker.
You could easily mistake them for the All-American Couple if it weren’t for the facts that she’s HIV-negative and that they’ve made AIDS education their life’s work, traveling the country to speak about safe sex, and using their relationship as an example.
“Clearly there are not a ton of couples like us out there … but there are going to be more. And just because people have HIV doesn’t mean they can’t have a relationship, that they should be celibate and alone,” said Barringer, who was working in graduate school as an HIV/AIDS case manager when the two met.
Lots of luck
Luckily, she says, “I was educated [about HIV/AIDS]. Most people are not.” In fact, judging from their experience, they agree that HIV education has been declining.
Which alarms them both. Barringer pointed out: “Basically, if you don’t have HIV, you’re just lucky.”
But her husband clearly feels like a very lucky man, with a relatively normal life that keeps getting better.
“I’ve found the niche for my existence that includes my pet virus…. “
Plus, “Now if somebody tells me, ‘Hey, we want you to come here and talk about HIV,’ I can just say, ‘Here’s the book, send me $10.’ “
But seriously folks: “I’m going to write more,” he said. “I’m planning on being around for a while.”