Health as Freedom
Written by Graeme Melcher
I have severe hemophilia A, which means that my blood doesn’t clot. At all. If I get cut, it won’t stop bleeding. If I pull a muscle, it will keep swelling until my skin can’t stretch any more.
When I was younger, kids with hemophilia didn’t go outside, or play sports. They sat; they read; they played video games, and swimming was the extent of their physical activity. Fine china enjoyed a more high-risk existence. I had the good fortune to have parents who favoured common sense over hand wringing. Since there was medication available to treat my condition, they decided that there was no reason I shouldn’t be able to lead an almost normal life.
Since there was medication available to treat my condition, they decided that there was no reason I shouldn’t be able to lead an almost normal life.
So while other kids with hemophilia tried not to get hurt, I was crashing through the forests on a mountain bike, or scrambling along rocky trails in some provincial park. In the summers I played soccer and went camping all across Canada; in the winters I would snowboard, cross-country ski, and play shinny with other neighbourhood kids.
Parents of other kids with hemophilia thought my parents were reckless. They couldn’t understand how my parents could let me do things where I might hurt myself, or how they could take me so far away from our local hospital. My parents shrugged it off, believing it was better to let me be as normal as possible than to protect me from every possible bump or scrape that came my way.
We don’t advise you do this, but if you’re going to, here’s how you keep yourself safe.
My doctor and nurse at Sick Kids in Toronto were tremendously supportive of my parents’ radical philosophy. Rather than telling me I couldn’t do something, they would say, “We don’t advise you do this, but if you’re going to, here’s how you keep yourself safe.” When another family in my hometown had a child diagnosed with hemophilia, the doctor put them in touch with my parents, using my family as an example of how normal life could be.
The tradeoff for being allowed to live like a normal kid was that I had to be responsible for my health.
The tradeoff for being allowed to live like a normal kid was that I had to be responsible for my health. If I got hurt I had to know right away whether it was serious or not. I learned how to explain to teachers, lunch supervisors, and other adults what was wrong with me. I figured out how to explain to them what I needed them to do to help me. Most importantly, I learned how to impress upon them how imperative it was that they listen to me. I learned how to prepare my medication at a very young age, and I was comfortable managing my regular intravenous injections by the time I was 11.
Today, except for the telltale needle marks on my right arm from those injections, you would never know I have hemophilia. I’ve got 19 tattoos, I go to punk shows, and I’ve worked construction and been a mechanic and done almost every type of manual labour job you can think of. I can build a house, chop wood, move heavy sound equipment, and do a thousand other things that put a strain on my body. That may not sound like much, but it’s virtually unheard of amongst people of my age with hemophilia.
To me, my health is equal parts freedom and responsibility, permission to be reckless and the knowledge that I’m fortunate to do so.
To me, my health is equal parts freedom and responsibility, permission to be reckless and the knowledge that I’m fortunate to do so. I compulsively plan ahead, always making sure that I have enough medicine on hand. I’ve learned that rules are all well and good, but sometimes you have to ask yourself if they’re worth following. Above all, I listen to what my body tells me: if my ankle twinges, I know whether it’s just normal stiffness, or the onset of something more serious.
Health is the Chairs and Tables theme for 2015. We pick a theme for at least four seasons and s-l-o-w-l-y release a report on it. For a full list of writers, the editorial team, and more on the subject and themes for previous years, hit open sesame.