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.
“Inspirational: My Big Mechanical Derriere”
—Chapter 3, Part 2—
Nevertheless, I was blessed with a fantastic childhood. Grandpa, a well-respected schoolteacher who lived by manners and etiquette, was neither an extremely strict nor frightening person, only disciplined in how he conducted himself. He was a survivor of the World Wars, including the Japanese invasion during the thirties. He was a grateful man that appreciated all that he earned.
Having that outlook, he taught my sister and me to remain polite at all times, saying “thank you”, “please”, and “ you’re welcome”. Good behavior was a must, and along with the loving atmosphere, his lessons added to the foundation of who I was becoming, while my parents taught us to always greet our elders. Letting go of my “faith”, so-called, motivated the desire to find myself more.
Hong Kong might have provided for many beautiful memories, but Canada adorned my life with countless others. I learned to play the violin from the son of Jackie’s piano teacher, Ms. Yeung. I didn’t finish my lessons because of the progression, and the fact that they hurt my neck. I’ll never forget the chocolate stamps that Sam rewarded me with. I never had the urge to lick paper until he came along.
My family and I spent a lot of time together, and I had a close relationship with my sister. We often played in the basement and recorded audio commercials on our parents’ hi-fi that were absolutely hilarious. When it rained, we listened to Dad’s cassette tapes filled with infinite oldies and had raindrop races on the window. We loved that guessing game involving clouds. I remember tobogganing in the tiny backyard of our first Canadian house and crashing into the deck. Hot chocolate awaited us under the fake Christmas tree from Canadian Tire.
Throughout our childhood, Dad took us on fishing trips, and sometimes late into the night, as in the morning. I had my own blue fishing rod too. He took us with his long-time friend, Peter, almost every time, and it was a good excuse for staying up during weekends. Car rides home included McDonald’s fries and tons of free salt that made us jump in our seats. We loved dipping them in ice cream.
Reflecting upon those memories, I remember my big catch of the day that nearly pulled me down the river. Jackie saved me that afternoon, only to redeem herself and hook me in the head as she matured. Dad also rescued me when I almost fell into the lake while fishing outside the safety fence. Mom always knew how to make me feel better on sick days away from school. I’ll never forget the macaroni in chicken broth with slivers of pork and ham. She boiled apples that could be eaten with a spoon.
So how could I feel sorry for myself? How could I not want to help myself when so many were willing to help me? Remembering the people who loved and supported me throughout the years, I don’t have the heart to wave the white flag. It’s all about having an appreciative mindset.
This gave me reason to continue fighting for my right of hope, and acknowledge that giving up wasn’t an option. I had to learn a sense of ownership in order to fully comprehend the necessity of accepting both my abilities and inabilities. Without acceptance, the existence of possibility becomes impossible.
When you have a chronic illness as challenging as Duchenne, one that forces complete physical dependence on those around, the development of emotional independence is a matter of life or death. If you don’t possess the capacity or willingness for self-reliance for the things within, it becomes dangerously easy to lose yourself.