How HIV Has Shaped My Life
Last updated: September 2023
Hello there! My name is Shawn Decker and I’d like to share a little bit of info on how HIV has shaped my life. I was diagnosed with HIV at age 11 in 1987 before effective treatments were available. It was a pretty scary time filled with a lot of uncertainty for me and my family.
No stranger to medical conditions
Having been born with hemophilia, I was no stranger to medical conditions. A couple of years before my diagnosis I heard my first AIDS joke in the 4th grade. My classmate’s clumsy delivery and kids not even really knowing what AIDS was yet probably accounted for the polite round of laughs before we moved on to the more standard pre-bell kid talk topics.
But my mind stuck with the joke or at least the fact that I knew the joke was centered around a medical condition. I vividly remember thinking: “AIDS… whatever it is, I won’t have to deal with it because I already have a medical condition in hemophilia…”
It turned out that the joke was on me.
Hemophilia and HIV
I didn’t really know much about HIV/AIDS or that, at the time, blood products weren’t screened properly like they are today. I didn’t know how HIV was transmitted or that I was in a high-risk group at the time. At 9, I had bigger fish to fry, like collecting the latest Garbage Pail Kids cards.
My parents, however, kept a closer eye on all of the breaking news where HIV was concerned. During a report one night, as the Deckers were having dinner, my brother’s ears perked up when he heard the word “Hemophiliacs”. Unaware of the tension powder keg he was about to throw a match on, he laughed and pointed at me.
“That’s you, Shawn! Hemophiliac!”
In unison, my parents quickly silenced him in a more defensive tone than the usual sibling refereeing that occurs in a 2 child household.
Acquiring HIV at a young age
The tone for all of our lives changed dramatically when I tested positive for HIV. My parents were pretty sure that I’d been living with HIV for a few years already. Around the same time that I heard my first AIDS joke, I also got shingles, which was a sign that my immune system was compromised.
At the time of my diagnosis, the prognosis was six months to two years to live. I was never told that - but my parents were. Overall, good or even hopeful news about HIV was in short supply. It’s probably why I made the decision to live my life and enjoy it while I had the opportunity.
Not that it was an easy thing to ignore.
Especially since the drama started before my family could even fully get our feet under this new reality that hung over the household. I missed the last couple weeks of 6th grade because of fears of transmission.
My parents had to grovel in order for me to attend the elementary graduation proceedings. The pie-in-the-sky goal of my mom was to see me graduate from high school.
In the beginning
Being diagnosed with HIV months before puberty and junior high school was challenging, to say the least. My decision to ignore it all was made harder on the first day back in school. A flyer was passed out to every student informing them that someone among them was living with HIV.
The flyer also made a special point of connecting the dots between people with hemophilia and how that community was contracting HIV. I was mortified. Hemophilia is a rare disease. And Waynesboro, VA, wasn’t exactly a metropolis. I was relieved at lunch when I overheard two classmates naming a student that wasn’t me as their guess as to who was living with HIV.
Around this difficult time, I remember thinking about my future. Or if I had much of one at all. I figured they’d find a cure for HIV in ten years, but I wouldn’t be around to benefit from it.
Taking the month-to-month approach
Before I carry on, there’s never an easy time to test positive for a medical condition that carries so much stigma and fear as HIV does. Even today. If anything, I credit my survival in large part to having a stable roof over my head and a loving family.
My brother stayed on the path that had been laid out for both us- make good grades and go to college, etc. But with me, it was, understandably, more of a “let’s take it month-to-month” approach.
I missed over a hundred days of school that first year back. I was happy to be alone at home with my Nintendo. I even fell prey to the pull of daytime television, Days of Our Lives in particular. My grandmother was aghast that my favorite character was a devious villain… perhaps I related to the guy that everyone seemed to be piling on for a reason?
Living a regular life
By high school, I’d carved out a pretty standard suburban teenage existence. A garage band had replaced the farm league baseball of my youth. Interest in dating started to dominate interest in toys. Video games? That technology was advancing at such an impressive clip that I had to keep a little room in my life for a console.
I was obsessed with electronic music, too, and trying to figure out all of the complicated features that my synthesizer offered while dreaming of my future life as a famous musician, which seemed like an easy thing if I could just survive the unspeakable.
As my brother studied and did his homework, I slept in and my parents fully supported my ambition to become the next Duran Duran. They encouraged both their sons in the unique ways that each required.
Opening up about living with HIV
The biggest surprise since my diagnosis happened at age 20 when I decided to open up about living with HIV. The year was 1996, and when I went online to find others living openly with HIV I was stunned to find only a handful of people.
That inspired me to put up one of the first sites authored by someone living with HIV, which read more like a zine of interests sprinkled with a few essays about living with “my pet virus"- a Nirvana lyric that I co-opted as the title of my website.
Wearing my status on my sleeve
The decision to wear my status on my sleeve led to a writing gig with POZ Magazine and a ton of educational opportunities. Most importantly, speaking out about HIV is how I met the love of my life, Gwenn, at age 23.
Together we’ve educated about proper condom usage and, more recently, U=U. This year is a special year for us- we’ve now been together for over half of our lives!
It’s been quite a journey thus far. And I look forward to sharing more stories with you soon. In the meantime, the best advice I can impart is: be kind to yourself and others.
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