“Home” by Ricky Tsang

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 1, Part 6—

Returning to Hong Kong after those trips, we didn’t stay long before moving to Canada. I will say that I am grateful to my parents for taking us to so many different places. It becomes much harder, if not impossible, to travel outside the country in a wheelchair and on a ventilator. I’ll cherish those memories for a lifetime.

The days leading up to our final goodbyes are a blur to me, but I think I remembered enough of a child of a half a decade. I recollect eating Jackie’s fruity Chap-Stick and decapitating her two barbie dolls, ripping off their legs. I did make a grievous mistake in not listening to her once… or more! She warned me not to step on that piece of paper on the floor, and I did so purposely. As it turned out, it really was a dead moth! I bawled hard, and with tears streaming down my face, she immediately took me to the bathroom and washed my foot in the shower.

I have what’s unofficially known as “Lepidopterophobia”, the fear (disgust) or general dislike of moths and butterflies, but particularly butterflies for me. It didn’t help that I was on a tropical island with gigantic flying monsters. I shudder at the thought of airborne cockroaches and ants.

There was one incident when I foolishly visited the Amazon exhibit at the Toronto metro zoo, inside, there were millions of butterflies waiting to attack me. When a certain one came out of nowhere and landed on my shoulder, I quickly soaked in cold sweat. I was so mortified that I couldn’t even scream. Dad, fortunately, noticed the assault of said evil creature and smacked it with the informational brochure. Let’s just say I never wore that Mighty Ducks of Anaheim T-shirt ever again.

My family didn’t realize that I had problems walking because, at that time, Muscular Dystrophy wasn’t familiarized in the oriental medical world. There were a few symptoms that my family noticed, including enlarged calves, never jumping, and how I’d fall from time to time, but they didn’t seem too alarming. I do recall having difficulties walking up a steep hill after getting my first pair of glasses, but that was pretty much it.

Before leaving for North America, I had the pleasure of seeing my newborn twin cousins, Manman and Lamlam (Alan’s sisters). I had so much trouble looking in the large window pane because I was so short, but when I finally saw those tiny angels, I was in awe. I had never seen such beautiful, sweet innocence in my life. I missed them and their brother already, and the times we shared in the resort in Lantao Island from my father’s work.

Many tears were shed at the airport, mainly because most of Mom’s family were not in Canada. It was incredibly difficult for her, but through sacrifice, my parents gave my sister and me the opportunity for a better tomorrow, in education and healthcare, as well as getting away from political oppression, since communist China was about to seize control in the 1997 handover.

Another life awaited us on the other side of the planet…

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