In an exclusive sneak peek at his hilarious new memoir, a self-described “positoid” relives his very first meeting with his “pet virus”
Shawn Decker, who has hemophilia, was diagnosed with HIV in 1987—and was promptly expelled from his Waynesboro, Virginia, sixth-grade class. Sound familiar? Two years earlier, another positive schoolkid with hemophilia, the late Ryan White, had been dumped from his Indiana classroom. Unlike the outspoken White, Decker, now 31, dummied up about the event and his status. Decker’s mother, however, would not. She complained to the school, which eventually relented in time for Decker to start the seventh grade. Still, he navigated his entire adolescence—including his first, tentative romantic relationships and long sick leaves from school—without ever uttering the letters H-I-V. But soon after graduating from high school, he not only disclosed his status but he went national with the news, launching a sarcastic and upbeat blog about HIV called “My Pet Virus” (now on POZ.com) and contributing a regular column to POZ. Decker didn’t just say AIDS, he devised a whole new lingo for it and hemophilia, coining terms like ”positoids,” “negatoids,” “thin bloods” (those with hemophilia) and “thick bloods” (those without). He soon embarked on a career as an HIV educator, traveling the country at the side of negative HIV educator and “wife partner” Gwenn—whom he met while waiting in line to meet Ryan White’s mother. Decker’s boisterous new memoir, My Pet Virus (Jeremy P. Tarcher/Penguin; $9.95), hits stores in late September. Here’s a preview of his outrageous chronicle of growing up thin-blooded in a thick-blooded world.
The year I came out of my AIDS closet—1996—I decided that the World Wide Web would be a good place to share my story and viewpoints, so I launched a website called “My Pet Virus.” I lifted the title from a Nirvana lyric during a brief affair (Nirvana temporarily displaced my beloved Depeche Mode) that ended tragically when Kurt Cobain blew his head off. On “My Pet Virus,” I could say whatever I wanted, and anyone with a computer and an Internet connection had the potential to see and read my thoughts. I was fascinated by the concept. Before I created the site, I wanted to see what was out there already, assuming there would be hundreds if not thousands of websites that featured the personal stories of my fellow positoids.
After an hour or two of searching, using keywords like “people with AIDS” and “I have AIDS” and “nude XXX,” I couldn’t find one person who was sharing his experiences living with his own pet virus. Just as I was about to give up, I stumbled on a page posted by a Gulf War vet who’d tested positive. Happy that someone was putting it out there, I searched his posting for an e-mail address so I could drop him a line, but I couldn’t find one. Then I came upon this disclaimer: “I’d advise against putting your life story online, as there are some heartless people out there who will try to make your life a living hell.”
I’m not so sure if it was altruism or just complete boredom that led me to want to educate others about HIV, but whatever the motivation, “a living hell” sounded pretty damn exciting. With that, I launched the website “My Pet Virus.” Packed with short stories about living with HIV, it was also home to a sharp-tongued alien named Altog, who answered questions about outer space (a good way to make fun of people without having my name attached), and a list of celebrity crushes that included Katarina Witt and Drew Barrymore.
Though the virus was omnipresent, I wanted my homepage to be about me—all of me—and I wasn’t going to let AIDS steal my thunder. In fact, I made him, my pet virus, the butt of a lot of my jokes because I wanted to be comfortable writing about HIV. My e-mail address was plastered all over the site, with links that read: “HIV can’t be transmitted through e-mail, so drop me a line!” I wanted people to ask questions, share their stories and have access to me. Who knows who might stumble upon the site? Maybe even Katarina Witt.
As I was learning how to navigate the Web, I started to find some people who shared not only my HIV status but the ability to laugh at themselves as well. A positoid named Misfit—a kindred geek from Topeka, Kansas, sent me a movie, The Crippled Masters, a little-known masterpiece that features a kung fu duo consisting of a man without legs and another without arms. It’s tricky, but the guy with legs carries the legless guy in a little baby knapsack. The guy with arms does all the punching, and the guy with legs does all the kicking.
But the first positoid I actually befriended online was Steve Schalchlin. In his photos, he was a dead ringer for Ted Danson, and he had put up his diary about living with AIDS earlier that year. “You should start one,” he typed to me one night in a chat room. “I think this public journaling stuff is going to be HUGE!”
Ironically, while I started my site to show that you could live with HIV, Steve had started to document his death from AIDS. By the time I met him, however, HIV meds had turned things around, and a site that was meant to give updates on declining health to family members caught on with strangers, who had become enthralled with Steve’s “return from the grave,” as well as his ability to tell his story as it was unfolding. And the best part of his story is that he’s still alive and writing it today. (Unless, of course, you’ve stumbled upon this in some used bookstore and the year is 2062. In which case, I’m dead too.)
Steve not only welcomed my friendship, he encouraged me to reach out to as many people as possible. The son of a preacher, he knew the power of testifying, and his own “calling” was to spread the gospel of living with AIDS without shame. When I worried that I was treating the subject of AIDS too lightly, Steve dispelled my doubts about my new positoid persona. “You have a real message of hope,” he told me. “You just deliver it with laughs.”
Dr. Lyman offered a message of his own. Impressed by my openness, he mailed me some issues of POZ, a national HIV/AIDS magazine that, I soon discovered, bums out some cat enthusiasts, who hear it as “Paws magazine.” He wanted me to have access to up-to-date information; but when the magazines arrived, I thought, “Ugh, I really don’t want to read this depressing shit.” Yet soon I was sucked in by page after page of life stories, some uplifting, others not so; but everything about the magazine was real, and it struck a chord. I put down the magazine, which featured a smiling positoid face on the cover, long enough to write and mail a fan letter to the editor in chief.
Now that I’d made friends with AIDS through the computer—a personal triumph—I took it one step further: the AIDS support group. Dr. Lyman had suggested this all throughout my teen years, but I wouldn’t be caught dead at one of those and found the idea of getting together with people who have one thing in common—a virus!—absurd.
But now it was a dare I made to myself. I wanted to see if I possessed the cojones to man up with my fellow positoids in person, so I went to Charlottesville, Virginia, the site of my failed move attempt, where the nearest support group meetings were held.
A funny thing happened on the drive over the mountain. As I was approaching my exit, a curious thought entered my mind: “Turn back while you can. What on earth do you have in common with these people? And will they be sick?” I’m somewhat impressionable, and I really liked showing off how cool I was about my pet virus. I knew I didn’t really want to hear about how terrible life with HIV was. Instead of retreating, though, I figured: “OK, if I blow it, I’ll just never go back.”
As everyone introduced themselves—a formality, since they obviously knew one another—I chose my words carefully. With the time to speak drawing near, another strange thing occurred: A feeling of fear rushed through my body as I realized that I was in a room full of people with HIV and AIDS. I couldn’t control all the thoughts in my head, but they went away quickly as members of the group—which ranged widely in age, ethnicity and attitude—started talking about their pets, home-improvement projects gone awry and the other day-to-day stuff. “I just bought a dog,” I sheepishly said. “Oh, really? What kind?”
Sure, they talked about doctor’s appointments and health problems, as well as interpersonal issues concerning family and loved ones, but it wasn’t scary, and soon I looked forward to the twice-a-month drive over the mountain to be in a room full of positoids.
One of the interesting dynamics at the support group was that there was a dividing line. Not the usual suspects of age, race or sex, but whether you were on HIV drugs or not. At one meeting, I was getting grilled on why I wouldn’t start treatment, and my answer of “I don’t want to” wasn’t good enough. Sure, I was dragging ass from fatigue, but anything short of dying seemed better than swallowing 20 pills a day and dealing with all the side effects—diarrhea, rashes, upset stomach, numbness in the legs—the meds crew always complained about. To fend off the pressure, I found a perfect job for my dormant pet virus, hep C, trotting him out as my scapegoat for not going on HIV meds. “I’m not sure how the meds would affect my liver,” became my go-to excuse. But I understood why the “HIV druggies” wanted me on meds: They cared. Plus, some of them remembered when meds weren’t an option and wished that some of their departed friends had had the option. “If things get bad,” I promised, “I’ll go on meds.”
After the meetings, Bart, Anne and I would go out for coffee and hot chocolate, which gave us a chance to get to know one another outside of the group, in a less “AIDS” environment. Bart, a man in his early forties, had the occasional outburst in group, like the time he called a couple of attendees “stupid” for no apparent reason before cooling down and apologizing. But overall, I thought he was funny and good-hearted. Anne, a mom, was around my age, recently diagnosed and supersecret about her status, though she wasn’t lucky enough to have hepatitis C to fall back on when she was being cornered at group about going on meds. I’d step in to defend her. So would Bart, even though he was on the pills.
Besides making new friends—online and off—I reconnected with my old friends Mark and Josh, speaking with them for the first time about HIV. I apologized for not confiding sooner, but they didn’t take my unwillingness to speak about my pet virus in high school as a personal slight. Their main concern was that I was feeling well—which I was—and in going public I had their full support. Not that I was ever worried about that.
I felt like my life was on track: I’d put my virus to work, discovered my love for writing, and my parents, always proud of me even when I was doing nothing, were thrilled that I’d found a niche. One night, after I’d been watching wrestling with Dad in the basement, the phone rang. It was around 10 p.m.
“May I speak to Shawn Decker?” the mysterious voice asked.
It was Sean Strub, the founder of POZ.
He wanted to know if I’d be willing to go to New York to be interviewed for the magazine. I’d never been to New York before, nor had I ever been interviewed. This was New York City. A national magazine. About AIDS. I couldn’t exactly go off spouting Altog the Alien or some other crazy bullshit I put on my website. I needed credentials, something of consequence to say. I studied some issues of POZ as a refresher but ultimately decided that I’d just have to wing it.