Think Positive
Shawn Decker
Positive anything is better than negative thinking.
The second son of a middle-class family, I presented more challenges for my parents than did my big brother, two years my elder. I was born with the bleeding disorder, hemophilia, meaning that each move I made, from crawling to learning how to walk, was closely monitored for fear that the most insignificant fall could result in a serious bleeding issue. In those early years one physician told my parents that I might not survive childhood.
Being born in the mid-1970s meant that I got to sport the latest in red bell-bottoms made specifically for toddlers. More importantly than that, I was the beneficiary of advances in the treatment of hemophilia. If I got a bump, bruise or nosebleed, I could get an injection of concentrated blood plasma that would help control the bleeding. Often times, I was back on the playground with friends within hours of taking a health-related delay of game.
A more normal life for those with hemophilia had started to set in, and I enjoyed all the perks of growing up in small-town America, from neighborhood reenactments of my favorite movies with friends to farm league baseball, playing right alongside my brother.
Over time, the trips to the hospital stopped being stressful and traumatic. Instead of resenting the unexpected bleeds that took me away from the neighborhood games, I grew to enjoy the opportunities to hang out with my "grown-up" friends, the nurses and doctors who patched me up. In the hospital, I'd see people who were really having health problems. My mother made a special point of teaching me about spirituality, that nobody knows for sure what happens after we pass, but that she felt our spirit lives on. Based on the love I received at home and in the care of my grown-up friends at the hospital, I couldn't find a reason to doubt that belief.
That conviction came in handy when, just before I hit puberty, another medical drama rocked my family. At age eleven I tested positive for HIV—infected by tainted blood products used to treat my hemophilia.
Unlike hemophilia, there weren't any treatments for HIV at the time of my diagnosis. Worse still, HIV was viewed much differently than hemophilia. Many of the parents of my best friends wouldn't let their children spend the night with me. I was expelled from my sixth grade class two months before the end of the school year. There was so much fear and misinformation.
Once the initial shock wore off, I went about life as usual by making new friends, dating and worrying about my complexion. In other words, I became a "normal" teenager. Admittedly, I used my HIV status on more than one occasion to stay home from school to sleep in and play video games. (I'm sorry, Mom and Dad. I wasn't sick most of those times!)
Though I enjoyed that particular perk, one thing I didn't like anymore were the trips to the hospital to see my new doctor, an HIV specialist. Though the appointments were only four times a year, I'd argue against them so hard that my mom had to pretend that she was taking me to school—then hop on the interstate for the hour-long drive to the big city. Instead of leaving the hospital with a medical problem fixed, I left with the cruel reminder that I was HIV positive and might have one Chuck Taylor in the grave.
Still, with each year that passed I gained more confidence that I might just survive this thing, and though I slacked on my responsibilities in school, I managed to graduate with my classmates right on schedule. Not only that, my peers gave me the greatest honor of my life up to that point when they anointed me as their Homecoming King. Even though I never openly admitted that I had HIV, most of my peers had heard the rumors. The moment was surreal for my family, who weren't sure I'd live to see graduation, much less a quite literal crowning moment.
Often times when people hear my story, I am the object of sympathy because of how I contracted HIV, or that it happened when I was a child. In actuality, I'm quite fortunate in how the timing played out. Hemophilia taught me that life is to be enjoyed on a daily basis, and that friends could be peers as well as mentors. And with HIV, I learned about discrimination based on fear of someone who is perceived to be different. When I came to terms with the fact that everyone has challenges, and mine happen to be medical, I felt lucky that mine were so painfully obvious to identify.
By the age of twenty I'd lived half my life with HIV, and I was finally comfortable with the idea of not only talking about my status, but doing what I could to help others cope with the virus or stay safe from contracting it to begin with. When I put up a website and started a blog, I was surprised to discover that I had a knack for writing. A word that I made up for those living with HIV—"positoid"—started to get used by people in the HIV/AIDS community. I was totally comfortable with HIV's role in my life, and figured that if others weren't, then that was their problem and not mine.
One of the questions I've been asked over and over is: "Would you trade your life for someone's who didn't have HIV?" For me, the answer is no. Why spend all these years learning the lessons I've been taught to trade in my adversity for a whole new, unknown batch of problems? Plus, if I wasn't born with hemophilia and didn't have HIV, I wouldn't have met Gwenn, an HIV educator who was looking for someone with HIV for an educational project, and ended up finding me.
That was ten years ago, and we've been together ever since.
I strongly believe that the toughest parts of our lives provide us with the best opportunities to grow, and as a result of my medical conditions I have been the recipient of a tremendous amount of love, support and compassion, all of which has outweighed the negativity I've encountered. As a happily married man in my mid-thirties, I take my health very seriously because I know there are a lot of people who have not been as fortunate. Those who didn't live to see the advent of HIV medications, or who currently live where there is no access to such treatment.
To live my life without a deep appreciation for that would be an insult to their memories, and an insult to everyone who provided their help in making my happiness a reality. I love my positoid life.
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