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 community.
For the Better
from “Inspirational: My Big Mechanical Derriere”
— Chapter 4, Part 2—
Right after moving in, I continued grade four in Applecroft Public School. It was relatively new at the time and even had an elevator. I made friends immediately with my noticeable personality, as well as the copper keychain I manipulated at will. To hell with Muscular Dystrophy when I had the ability to bend metal! However, credit probably belonged to one particular incident when I made the hills come alive with the sound of…
On that fateful morning when they had everyone outside, all the students were divided into quarters. Each group had an assigned teacher who helped come up with the lyrics to our new school anthem, not that I paid attention! I was too busy teaching my boys how to impress the ladies, apparently, with that keychain.
When they signaled us with a small countdown, “And a one, and a two, and…”
So maybe it wasn’t a screaming contest, but I yelled at the top of my lungs at the top of the hill. You should have seen the look on the teacher’s face when she asked for my name. She, and Maria, along with hundreds of innocent children, thought I was out of my mind.
There was another embarrassing moment that happened during my first rollercoaster ride in Canada’s Wonderland. I was so excited to be tall enough, and with a huge smile, looked towards the horizon and took in the picturesque view of the orange marmalade sky. Suddenly out of nowhere, I felt a jolt up my butt and screamed as loud as I could. Going down, I forgot… hey, at least the two cute girls in front thought I was hilarious!
In my teenage years, I had a phase where I became highly offended whenever someone stared. I remember one incident when I was being lowered from the van elevator in a parking lot. I saw this jerk from a distance eyeing me down and fumed.
“WHAT ARE YOU LOOKING AT, PUNK?!”
As I continued in defence mode, I saw him waving at Dad. I gulped. He was a friend from church! Sharing a table that afternoon for Vietnamese pho, things were getting awkward, probably because the son heard what I had called his beloved father. The phase had an abrupt ending.
Changes are necessary, though I admit that it took a bit of getting used to when I needed help with the restroom. I handled the urinal with ease, but the fountain sink was out of reach. Fortunately, Daniel was in the same class, so he assisted me. When he and his moved away, the teacher selected a random classmate to help with the “pee bottle”, as it was called. I was constantly made fun of, but couldn’t complain because they were willing to rinse the smelly thing.
Eventually, the main floor of our house was reconstructed with wider doorways, a bathroom with a shower that accommodated my commode chair, etc. I was treated with two living spaces; a bedroom upstairs, and the dining room that I took over with a desk, computer, and television set. A ramp was built within the garage instead of on the front door. Our grounds were tiled, while a deck that I could access was installed, thanks to the construction guys that Uncle Peter introduced. Uncle Yuen and Uncle Bun did a fantastic job.
As I began the path towards maturity, I gained a great deal of knowledge along the way that put me in perspective. Having friends who didn’t know when to be serious was a hard lesson learned when Joel’s toe broke in the elevator. Everyone wanted a ride, and I needed someone to open the door. My mistake was letting too many people join as kids can be rather loud. I had grown accustomed to their behavior, but when poor Joel was screaming in agony, it was already too late to release my finger. He had to be admitted to the hospital. Nevertheless, it was my fault, and my button privileges were taken away.
Resulting from that fiasco, presumably, since I needed an intervention for being a murderer of thumb equivalents, I met Mrs. Moore, my educational assistant. I started using the staff restroom from then on, and it was a significant change as far as independence was concerned. It was a perfect fit, and all she did was open the door.
Sitting on the floor in front of the television with a sketchpad and my little table was a tradition. I did the same in Hong Kong, while mom tried dragging me away for afternoon naps. Cartoons, including Tiny Toon Adventures and Batman: The Animated Series, the way their squiggles and lines swirled in every frame, gave me the inspiration to capture the essence of art. I had a theory that all you needed to be a cartoonist was an imagination and the ability to draw straight lines and circles.
But I was a disciplined little boy. Mom prepared snacks for Jackie and I after school, and whenever we finished eating, I’d do homework before anything else. Why worry about things later and rush like crazy? Getting my priorities straight was one of my better qualities. It was guidance on how to properly deal with the challenges ahead, one step at a time.
Then again, I did say a nasty word to one girl who talked way too much for my own good. Except, my English wasn’t the best and I ended up calling her a “beach” as we passed in the hallway. She had a confused look on her face as if she didn’t know whether to laugh or be offended.
That year, as I recall, had only cloudy days. I remember one particular winter morning when it looked like evening out the windows… All the while, Mrs. Lopata tested out my Santa Claus costume, both on my wheelchair and face. I’ve concluded that it’s an elementary prerequisite for every child on wheels to pretend to be a fat man flying with a piece of red and white cardboard.
Mrs. Lopata was really accommodating when it came to my needs. I loved how she was my teacher for a couple years straight. She had a special prize canister for a job well done, and I’m sure I’ve dug into that thing several times for being a “goodie-goodie”. I was a fairly decent student, and surprisingly, even in French, though I only remember “poulet” and “salle de bain”, the two most important things in life. She did write my name on the chalkboard once for talking during class, but was great, with lots of fun activities and challenging assignments. I’m rather fond of those days.
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