Growing up was quite the experience; a struggle perhaps, but I had the time of my life that provided many opportunities. The story begins in my toddler days when my enlarged calves were noticed. It’s one of the symptoms of Duchenne muscular dystrophy, a genetic disease that deteriorates voluntary muscle strength and mass. The weakness starts from below, affecting limb and trunk muscles. I used to have immense leg cramps that kept me up through the night, reducing me to tears every time.
1987, grade one: Strength wasn’t greatly affected until the age of six, the time my family and I moved to Canada. We stayed at my grandparents’ place after our arrival. I remember in school during story time, it was so difficult returning to my feet. It looked awkward, using hands to push myself upright. I couldn’t understand why such an easy task would take that much effort, but when other children laughed, I simply followed through with the humour.
There was a time in the restroom when I slipped and fell in the corner. The wet floor made it impossible to stand. My prayers were answered as soon as I heard the back door open with two older classmates seemingly coming in for the rescue. I even shared what happened at church.
As my progression became more apparent, I was examined at the Hospital for Sick Children. While the muscle biopsy revealed my diagnosis, I only cared about the ice cream my parents had promised. I didn’t know how hard those moments were for them. I just wanted to leave and continue being a kid.
By that time, we had already moved into our own townhouse. The stairs leading to the front door troubled my steps, while exhaustion forced me to be lifted for longer trips, even several metres. My walking was affected to a tolerable degree, but bothersome nonetheless. Visiting the dinosaur exhibit at the Royal Ontario Museum in grade two had me incredibly tired, but I was thankful for the elevator, which Mom and I were allowed to facilitate.
Within a year, things were at their toughest. Mom painstakingly carried me to the school building every morning. I could still walk, but the stress and frustration were overwhelming. I used walls, handles, and anything I could get a hold of for support. I’d go outside for recess without hesitation, foolishly thinking that nothing was wrong, but retreated back to the walls that slowly led me inside. The searing hot bricks in the summer killed my little hands, and I was always late. I’d walk by the classroom window, but refused assistance whenever Mr. Passell offered. Each afternoon, my knees were bloodied by the time I got home. I never cried once.
Eventually, seeing me in the middle of the hallway became a rarity. I was provided with a projector cart whenever nature called, and a bunch of friends wheeled me away. Following the third grade when I could no longer stand, I received my first wheelchair, and as a result, we moved again.
1990, grade four: The main floor of our new home was reconstructed with wider doorways, etc. for convenience. I started off with two rooms; one upstairs, and the dining room. We also had a ramp built within the garage for easier entry. At Applecroft Public School, there was an elevator. I didn’t require much help in the restroom, but couldn’t reach the fountain sink, so a student was selected to help me.
A year later, I met with my assistant, Mrs. Moore. I used the staff restroom, which was an improvement as far as independence was concerned. Once she opened the door, I was able to do everything myself. However, because I couldn’t wheel myself anymore, I received a powered chair instead. It was pretty much insanity, the first time I drove. If I pushed too hard on the joystick and jolted backwards, it caused me to go forward immediately and continue the vicious cycle. I crashed everywhere and ran over a variety of toes!
The most memorable moment during that time had to be my private tour at the Toronto Star building. I met with the lead cartoonist and drew a comic strip that was featured in the Sunday edition. It was an incredible feeling, thinking about my potential future. He even drew my caricature.
Soon, I started having accidents with the urinal, spilling all over, and embarrassed, I returned home “sick”. I bit on my index finger to yank my arm up, anchoring my elbow on the handle to fix my hair or scratch my face. I literally walked my fingers to the desired destination to reach for objects on my desk. Taking notes proved to be too difficult, so Mrs. Moore did it for me.
My spine twisted more resulting from Scoliosis in ‘94, which led to my spinal fusion surgery in July. I returned for the eighth grade without much delay. It took a couple months to recover and I lost more than ten pounds, becoming significantly taller as well. 1995 was perfection because nothing much changed (no loss of strength), almost like vacation.
High school greeted me with Keith, my new assistant, but by second semester, I met Anne. The Board of Education discontinued my full-time care due to budget cuts, so she and Keith alternated on occasion. It caused much stress as they could only prepare me for class, picking me up afterwards.
I spent my lunch hour alone with a cafeteria table to myself, a routine of finishing fast and heading straight to the library. Unlike the comfort of home, I couldn’t lean on my tray. The shorter distance made it easier to feed myself. In the end, Mom brought hot meals, and in a deserted parking lot, fed me.
As I grew even weaker, I could no longer feed myself. When it would take fifteen minutes, it took half an hour, only to become a full hour. The clock continued ticking as my food became colder. It soon took more than two hours to finish. Using every ounce of strength to bring the spoon to my mouth, I realized there was no dignity. I shut the door so nobody could see the useless mess I had become.
I ultimately dropped out of high school. I still remember the final day of my favourite class. As I looked upon the disaster of a painting I created, my dream of becoming a cartoonist shattered before my eyes. A part of me died on that fateful afternoon when I realized my plans were over, but little did I know that it was the beginning of something else; something… more.