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 away in 2016, Ricky shared the manuscript for his second book with me. It was never published and we would like to share it now with our DMD community.
Inspirational: My Giant Mechanical Derriere
Whenever someone calls me inspirational, I feel like strangling them. Maybe it’s a good thing that I have Duchenne Muscular Dystrophy – for the sake of everyone else.
The “I” word has become one of the biggest cliches anyone with a physical defect, even a misplaced freckle, is considered as such because they faced something out of their control. Having this genetic disease doesn’t make me better when all of us are in our own obstacle course. While society might admire the inspirational, it also feels sorry for them. I’m not looking for sympathy.
During the marketing research for my first book, I was disappointed to find that many of the memoirs from the disabled were not only negative but depressing. I wrote this one to uplift with the focus on my abilities, because dealing just isn’t good enough. Sometimes you have to get past the baby steps and live.
As one of the oldest living individuals diagnosed with DMD, I feel responsible for the things I write and how they’re expressed. Though I wouldn’t presume to speak on behalf of those afflicted, I realize that my voice still has an impact on others. For that reason, it is essential to be mindful of their optimism – especially young families. For that reason, among many, I’ve decided to remain positive and keep on wheeling.
In the span of over a year and a half, I wrote this autobiography with one finger via a computer mouse, setting out to tell my story with a realistic sense of hope. There were smiles, tears and laughter that surrounded my words and a constant reminder to never give up despite being hospitalized on more than a few occasions, even the staring death in the eye. It was an adventurous journey that included a triumphant destination. I was humbled to have been given the privilege of sharing my life.
Why does the title of this book refer to my robot bum? One, I didn’t think anyone would get behind picking up something with the word “ass” on the cover. Two, I got your attention. And three, automated butts are inspirational and making fun of myself is nothing short of awesome.
Inspirational: My Giant Mechanical Derriere is an effort to help raise awareness. But more than that, it’s about hope, gratitude and bringing human beings together – able bodied or not – full circle. Duchenne muscular dystrophy is only a part of me and not who I am. I don’t inspire. We inspire.
Well, what are you waiting for? Climb on the back and program me to road speed. “Sometimes I drive so fast that I break wind.”
– Who Else?