Despite being born with mild hemophilia, Shawn Decker enjoyed a pretty normal childhood.
At the age of 11, he was infected with HIV through the use of tainted blood products and expelled from public school. He was re-admiitted “because his mother would eventuallyhave killed someone had they not let him back in.”
For the next ten years, Shawn kept his HIV status to himself, barely talking to his parents or doctors and never mentioning his pet virus by name, though he did jump at the chance to meet his favourite band, Depeche Mode, through the Make-A-Wish Foundation in high school. In 1996, at age 20, a change of heart led to the creation of “My Pet Virus”, a web site devoted to Shawn's favourite pastimes as well as a sounding board for his feeling about living with HIV. He invented a word, "positoid", to properly represent people living with the virus, and his humorous and informative take on life with HIV caught the eye of POZ Magazine, who invited the blogger to be a regular columnist for the magazine. The next year, he was invited to the White House on World AIDS Day.
At age 23, he met a fellow HIV educator, Gwenn Barringer- who is HIV negative. After they fell in love, friends encouraged them to speak together as a couple. Since 2000, Shawn and Gwenn have spoken to over 75,000 students on college campuses, traveling nationally to share how they keep Gwenn HIV negative in their program, “A Boy, A Girl, A Virus & The Relationship That Happened Anyway.” In 2004, Shawn and Gwenn were married.
Shawn Decker's story has been heard and read by millions of people. He has been featured on MTV, the BBC, CNN.com and has appeared in an HBO documentary as well as in Cosmopolitan Magazine. Shawn's memoir, MY PET VIRUS: The True Story of a Rebel Without A Cure, is published by Tarcher/Penguin. A screenplay for the book is currently being written.
He lives in Charlottesville, Virginia.
Bob Leahy: Thank your for agreeing to talk to us Shawn. Now you tested positive in 1987 when you were just eleven, I think.Your school kicked you out, but you didn’t know why because your parents were reluctant to tell you that you had tested HIV positive, right?Would you have preferred they come clean with you?
Shawn Decker I’ve never really thought about that aspect of things, Bob. Now that over two-thirds of my life has been lived with HIV, those pre-HIV memories are few and far between.I relate so much to their perspective since I’m now 36, about the age my parents were when they tested positive. I now understand that my diagnosis was probably much harder on them emotionally than it was on me, because they bore the brunt of that initial act of discrimination perpetrated by the higher ups at the school.I’m thankful I was shielded from that drama.
That was an incredibly early age, though, when they did tell you (later that year?) that you were HIV positive. I can’t imagine how someone so young would process that. Do you remember what the diagnosis meant to you at the time?
I was told a couple of months after the diagnosis, I believe. At first I was just really worried about dying - and how painful that would be. I’d seen the made-for-TV AIDS movies; the HIV-positive characters never outlasted the credits.
You eventually got reinstated at school.How difficult was that?
I was asked if I’d like to go back to school by my parents. I wanted to see my friends and be as normal as possible, so I said “Yes.”The hard part was when a flyer was distributed to everyone in junior high school stating that someone in the school was HIV-positive. The flyer also discussed the link between hemophilia and HIV. That day, I wouldn’t have complained if the intercom informed us that the Soviets had launched a nuclear attack and we were required to get under our desks. I probably would have stood on top of mine and used every curse word at my disposal on my way out.
You never went public while you were still at school.How difficult was it to keep your status a secret?
It was easy on my end. The rest of the world made it much more difficult. When I started dating, people would out me to my girlfriends. One time in high school I walked a girl to class. She was more than happy to share my company in the morning, but by the end of the day I may as well have been dead to her. I later found out that one of my classmates gave her my medical resume.
I wish I had gotten comfortable with my status sooner. In the 10th grade, I got serious with the first love of my life. Not disclosing my status led to a lot of problems that could have been averted, because we were engaging in oral sex and I thought I was being safe by not ejaculating. In retrospect, I had to learn the biggest lesson of my life the hard way - that HIV doesn’t just affect me. It also affects those who love me.
Fast forward to the mid 90’s. Your teens were difficult but you got to make a wish with the Make a Wish Foundation, you met Depeche Mode. I guess at the time you really thought you were going to kick the bucket.
I didn’t think I was on borrowed time, but I guess my mom did. She paid more attention to my lab work than I did, so she was acutely aware of my fluctuations in t-cell counts. For me a doctor’s visit meant that I had political capitol that would allow for the purchase of a new Nintendo game. What sparked mom’s concerns was the passing of Ryan White. When he died, she felt like God could take any of us. Ryan truly was an inspiration to the hemophilia community - he spoke out when so many, including myself, remained silent on the sidelines.
So you came out really wanting to tell you story when?1996? What prompted that decision?
A couple of years before I did so in 1996, I was a big fan of The Real World, in particular, the San Francisco season that featured Pedro Zamora. I secretly watched the episodes that delved into his dealings with HIV. He was and remains a hero. I was a bit shell-shocked when he passed in 1994, but his courage was never lost on me. Two years later, when I had my first inkling of wanting to disclose my status, I ran with it. I didn’t want to wait for the moment to pass, and I knew my life would never be the same.I wanted to help people understand HIV on an informal basis.I wanted to educate those who weren’t HIV positive without scaring those who already are.
You know, Shawn, I’ve always had this naive assumption that things were different for people who contracted HIV through blood products, that the stigma just wasn’t the same.Do you want to talk about it?
The topics of drug use and sex make people nervous, so certainly contracting HIV through those means adds another level of complexity for someone who is HIV positive. But when it’s an irrational fear of contracting HIV, the person who is scared really doesn’t care how you got HIV - they just want you to stay away, regardless of that detail. And for me, I was kicked out of school, had friends who’s parents wouldn’t let me come over to their house anymore… the works.I’ve interacted with people who’ve contracted HIV via all means, and the root fear of rejection is exactly the same.
Many people living with HIV seem to despair of meeting a soul-mate. But you met Gwenn, she’s negative of course, in 1999 and five years later were married.What would you say to HIV-positive folks who would love something like that to happen in their own lives?
I wouldn’t have met Gwenn had I not went with my instinct to just put my status out there. I know for many people, there are concerns with doing that - very real concerns of losing a job, losing friends and contact with family members. My take on rejection shifted from fear to a mantra of: “If someone can’t handle my status, it’s their problem not mine. And I don’t want to waste my time on them.”
The real key to finding comfort with someone else is finding comfort with yourself. Often times we project our own fears onto others. When I first realized I was okay with my status and no longer feared rejection, it was like breathing fresh mountain air after sitting in traffic with the windows down. Every day from diagnosis on is like a little walk up that mountain, to continue the analogy. It’s important not to backtrack, and not to rush the process of becoming comfortable with yourself. Only then is it time to invite someone into your life - your beautiful, meaningful life.
You started blogging for POZ magazine in 2006. But you were on the cover long before that, so you’re a bit of an HIV superstar.Is that something you had to work at or did it just happen?
It all happened very fast. In 1996 I wanted to disclose my status publicly, so I put up a web site called “My Pet Virus” (had a book of the same name published ten years later in 2006, cheap plug). I wrote a fan letter to POZ magazine, and directed them to my site. Sean Strub, then Editor-in-chief, thought I was a funny straight boy trapped in the sticks, so he invited me to NYC to be interviewed for the magazine… I was elated!Two months after putting up the site, I was getting on that plane.
After the issue came out, I pitched an idea for a column to the magazine. What I loved most about the magazine was the unique characters they had writing for them.When they said, “Sure, submit something!”, I worked very hard on a piece entitled “Sex and the Single Positoid”.They printed it and called the column “Positoid” after the word I’d created to describe myself as someone living with HIV. In 2006, I got into blogging again after a brief hiatus and thought that Poz.com would be the perfect home for it.
How has social media and the ability to communicate with a lot of people changed your life? Or look at it another way, Shawn. Remove social media and what would your life look like?
Oh man, without it there’s just no way I could have reached people the way I did, Bob. I mean, I had a great boost from POZ, but how would they have gotten a real sense for my writing and who I was if my web site hadn’t have been there?It would have just been my chicken-scratch handwritten letter. The ability to make a home on the internet and reach strangers within hours of logging on inspired my decision to move forward.Without social media, that spark in the early days may not have been there.
Today? I’ve stepped back just a touch from social media. I still blog and tweet and all of that, but it’s just exploded so I don’t feel the pressure to be on there all the time. I love that others are engaged and sharing their stories, and it’s so much more streamlined these days.Back when I started blogging, it was me and about four other people with HIV.When I logged online in 1996, I was expecting hundreds of people with HIV-positive perspective web sites.Log on today, and that’s what you get. It’s an awesome resource for the newly diagnosed, and shortens the aftershock period of an HIV diagnosis to see that others have made it.
I want to talk about your speaking career.You and Gwenn have talked to a lot of kids about HIV, and I’m sure your message has been well received.But as a society are we getting through to them and if not, why not?
As a society we have failed in regard to sex education in schools. Somehow that issue was conceded, and I do not understand why. Teenagers shouldn’t have to go onto YouTube for sex education. It should be taught in junior high schools. In my home state, sex education isn’t mandatory. HIV is preventable - so is teen pregnancy. We are expecting young people to just learn on their own, and it isn’t right. As for the work that Gwenn and I do, I am proud of it. I know young people are desperate for the message. They laugh at the sex jokes, and ask the important questions. It’s just rare when we get to speak to the under 18 crowd, the ones who most need to hear about proper condom usage.
You’ve talked about condom use in the context of sero-discordant couples and how it’s kept Gwenn from becoming infected.Have you felt the need to change that message in any way, given what we know about the low risk associated with undetectable viral load?
The lower risk with undetectable viral load is great news for couples like us. Gwenn and I still use condoms, but it’s nice to know that my low viral load as a result of taking HIV medications is another safeguard. We haven’t changed our message, because our audience isn’t in the same position - they don’t know their partner's status. In many cases, their partner doesn’t know their own status! So we’re educating about taking your sexual health into your own hands.
I ask this question a lot.Some people rate becoming HIV+ a big fat zero, the worst thing that ever happened to them.Others give it a perfect ten.Where does HIV stand on your personal favo-meter?
I’m happy with my life. There’s been a lot of pain and a lot of triumph directly related to my HIV status. These days, I fantasize for a cure. It’s my motivation in taking the meds, in feeling sluggish. There is an endgame, and it is a life without HIV. It’s many, many years away, but I do believe that in my lifetime it will happen.Having said that, I’m a more compassionate and open-minded person for having HIV and the challenges it’s presented. Positoid Shawn is laidback, who knows what Negatoid Shawn at 36 would be like?Maybe I’d have become a massive dickhead?
You said just this summer “Lately I’ve felt so burnt out on AIDS.I receive so much encouragement about the work that Gwenn and I do, but I would be lying if I didn’t say that 24 years of being diagnosed with HIV - and spending the last 15 years talking and writing about it - is wearing on me.”Are you in some Post-AIDS place that some of us are now and just want to move on?
I got my HIV routine figured out - I know what I need to do to stay healthy. I used to see HIV education and being out there as my only purpose in life. Do I feel of value doing this work? Yes. People disclose their status to me who have never told a soul before. It is deeply saddening, but at the same time that trust is a validation that I have succeeded in not scaring away people with HIV in how I present my life and message to the world.
What keeps me out there is knowing that the message is still needed. The burden of HIV education is spread out amongst an incredible worldwide community of positoids and negatoids who just get it on a human level.I am deeply honoured to be one voice in such an inspiring group of people.
You also said recently "I am becoming increasingly convinced that I will be cured of HIV someday... perhaps in 20 years or so. It would be nice to bid farewell to my pet virus in my 50's. I believe in science."Your life is so wrapped up in HIV – blogging, speaking, etc . – that life without HIV would be a huge adjustment.Have you ever thought about what that life would look like?
I love the idea. I enjoy writing, and would love to transition from the real-life monsters like AIDS to fictional ones such as vampires and werewolves. I’ve actually written a second book about a vampire and his best friend, who was born HIV positive. I’d love to master the craft of writing.I also have my band, Synthetic Division, and a goddaughter who is three that looks up to me for just the general knowledge of what it is to be a human.
There would be no problem filling my days without HIV in my system, that’s for sure. It’s bags are packed. They’re by the door. My pet virus knows that when the time comes, he’s outta here for good.
Great!Shawn, thank you so much for speaking to PositiveLite.com.
Shawn and Gwenn blog http://www.shawnandgwenn.com/category/blog/
Shawn POZ blog http://blogs.poz.com/shawn/
My Pet Virus website http://www.mypetvirus.com/
On Facebook http://www.facebook.com/shawndecker
On Twitter @shawndecker
Shawn’s music: http://synthetic-division.com