about the author:
Ricky Tsang was a pillar in our Duchenne community for years. From his website DearRicky.com to his Facebook group We Are Dystrophin, to his first book, Ridiculous: The Mindful Nonsense of Ricky’s Brain, Ricky’s priority was helping and advocating for our community – well, that and romancing women.
Shortly before passing in 2016, Ricky shared the manuscript of his second book with me. It was never published, but now we would like to share it with our Duchenne Muscular Dystrophy community.
“Life Goes On”
from Inspirational: My Big Mechanical Derriere
—Chapter 2, Part 4—
We eventually moved into our home, in Scarborough, freeing my grandparents’ basement from boxes upon boxes of furniture and other necessary and unnecessary items. I missed hiding in some of the empty ones but was content to have my own room upstairs that was painted sky blue. It was nice to have my bed again. Those were the days when my sister obsessed about New Kids on the Block, while I couldn’t get the Ghostbusters audio cassette out of my Walkman.
Upon returning for the second grade, the exhaustion started to manifest. It was tolerable, but I had a very difficult time walking here and there, while my ability to run was completely lost. I usually just stood outside on the pavement, hanging out with Tina and her bag of Cheetos. Our mothers became close acquaintances from picking us up after school, and I always thought I’d marry that girl with the scar above her upper lip. She was my best friend.
Mom would tag along every time we had a school trip, including the apple orchard and the maple syrup farm. It was a huge blessing. I was a momma’s boy from the get-go. I cried watching The Land Before Time when Little Foot’s mother fell down the cliff, but she was there to wipe my tears. I remember going to a dinosaur exhibit at the Royal Ontario Museum. Walking around was incredibly tiring, but having her there, we were allowed to escape from the rest of the group to use the elevator. There were stairs, but thankfully, only a few.
Dinosaurs were a fad in the late eighties, and I owe it all to Mrs. Segal for getting my juices flowing. She was the kind-hearted teacher with a serious demeanor who walked around the class, keeping a close eye on us all. If it hadn’t been for her, I’d still be making crayon drawings with the caption “The Tyrannosaurus Rex ate grass.”
Chartland was good to me. That year, I was taken to Variety Village every week, a sort of training centre for people with special needs. I was there, mainly for swimming, among other sports, to prolong the use of my muscles. I never looked forward to going there because of the intense labour it entailed but kept it to myself because it had to be done. Though the journeys back to school were long and dreary with graffiti on every wall, they were entertaining bus rides, nonetheless. I impressed the mentally challenged crowd when I told them I had eaten a cow for dinner. Hey, I didn’t know the word “beef” could be used for consumption purposes!
Food always had a place in my heart – though Mother did warn us about the crazy berries that grew in the bushes. They apparently caused insanity. When we entered the doors of Pizza Hut, it was pretty much heaven. I probably had pizza back in Hong Kong at Chuck E. Cheese, but there was no comparison, that pie still sizzling in a cast iron pan, topped with pepperoni, mushrooms, bacon, and a load of melted, gooey cheese. On one occasion, Jackie ate a whole one, if you can believe it. She was in her growing phase.
Grade three was tough. Within a year, I could no longer climb the stairs to the front door of our townhouse. The exhaustion got so bad that I had to be lifted for several metres. Every morning, Mom painstakingly carried me from our car across the street, dropping me off at the school doorway because I didn’t want anyone to see. I was embarrassed of myself.
The stress and frustration were overwhelming. I had to use walls, handles… anything I could get a hold of for support. I’d go outside for recess without hesitation, foolishly thinking my weakness would disappear. I could only walk a couple of metres, but that felt like miles. When tired, I retreated to the brick walls that slowly led me back inside. As I walked by the class window and realized how sluggish I was, it gave me motivation to move quicker.
Support became mandatory, and you’d never see me in the middle of the hallway. It was only when I saw Janine walking by that I pushed myself to rise again for center stage. I had to, for her. I didn’t want to break her heart by letting her see me fall. You wouldn’t imagine a child having such emotions, but girls gave me the motivation to fight and endure for a little while longer.
Crap, it makes me feel so old saying this, but back in the day, there was never really a bullying epidemic. Kids used to be nice, or at least the ones I knew. I had a bunch of friends who took care of me because they witnessed the fight I continued without giving in. Mr. Passel even gave me a projector cart because I couldn’t walk much, so whenever nature called, some of my classmates wheeled me away.
My strength continued to decline as the year progressed. I had more of a difficult time returning to my feet than ever before. There was one incident when my family and I were singing hymns and I needed to pee. Having my hands on the carpet and petite rear end pointed upwards, I pushed with all my might but suddenly heard a thundering sound that shook the entire living room. I turned around to see what was going on, only to find my father’s angry countenance, while hysterical laughter filled our surroundings. I farted… in his face.
Despite the obstacles, 1989 was a wonderful year that rewarded me with many good memories to never forget. That era was spectacular. Writing these words, it’s incredible how much I remember.
But let’s backtrack a little, shall we?