Yes, that is the actual title of my forthcoming book. I know…it's a bit long. And Jerry Lewis is a dated reference few people under fifty will get. But I went with it because it was true. Mr. Lewis did, in fact, predict my demise. Depending on how you look at things, anyway.
Being in a wheelchair for the past forty years has given me a 'unique perspective' on life. Mostly I see what's up people's noses. Not a pretty sight, let me tell you. Nasal passage hygiene is sadly lacking in the twentieth century. Beyond providing that grotesque view, however, sitting where I do allows me…distance. Even in the midst of a crowd, I remain apart. That 'outsider' status isn't all bad. In fact, it can be beneficial; giving me the time and space I need to think, digest, and silently judge everyone around.
My default has always been to believe the best of people. Optimism is a much saner world view than pessimism and so I choose positivity. This often involves a lot of mental effort on my part, including dreaming up excuses for those who fail to live up to my lofty, glass-is-half-full beliefs. Like when Jerry Lewis betrayed me.
It happened years ago, of course. Back when I religiously watched the Muscular Dystrophy Telethon. Held annually over the Labour Day Weekend, this was 'Must See TV' for most North Americans and virtually mandatory viewing for anyone with a disability like me. Or it was until I heard the host—Jerry Lewis, remember him?—utter a shocking phrase: "Most children with muscular dystrophy don't live past their sixteenth birthday."
As a ten-year-old client of the Muscular Dystrophy Association that sentence came as news to and inspired years of neuroses.
I immediately became convinced I was going to die on my sixteenth birthday. What can I say? It was a more innocent time—back when the average citizen still believed celebrities—and I was young. Young and innocent as only a middle-class small-town Canadian boy can be. Still, it's hard to believe that I once believed that my life would end like a light switch being flicked. But following Jerry Lewis's diagnosis, that's exactly what I thought. Blowing out the candles every birthday I wished, not for presents, but to live past sixteen. Each party brought my predicted end closer. While my friends and family cheered the milestone, I came to dread birthdays.
Then, after three or four years of agonizing over the inevitable, the truth hit me and I discovered my death was not fixed. (You'll have to read the book for a full account of that realization and all it entailed, sorry.) But I still blame Mr. Lewis for terrorizing me. The fear and anger he inspired influenced many of my worst decisions. Until I started writing.
Writing is a creative outlet. It offers both freedom and catharsis. Frustrations can be put down on paper, hopes can be pinned to a page. Many disabled people are drawn to the arts for just that reason. And the story of Jerry Lewis telling me I was going to die kept coming up. I tried and tried to tell it, to make it funny, but the words just wouldn't come. Until the pandemic hit.
Stuck at home and watching the fear of CoVid-19 grow, it hit me: Everyone is feeling their mortality! Having went through that exact same trauma decades earlier meant I was immune (from the emotions, not the virus). Maybe, I thought, the story of my brush with death will connect? So I tried again. And this time it worked. More or less.
I ended up writing something unexpected. It wasn't a story. More of an essay. But humorous. And with a touch of biography in there. I included some irreverence and satire too, because both are a fundamental part of me, then shared it with some friends. They liked the piece and encouraged me to submit it…somewhere.
Which is how I connected with Latitude 46 Publishing. I sent them an unsolicited email, pitching a book with JERRY LEWIS TOLD ME I WAS GOING TO DIE as the potential title, and they wanted to know more. Some back and forth followed and here we are, with that book soon to be published. All because a celebrity spokesman threatened my life.
The moral is simple: Find your motivations where you can. And maybe don't take medical advice from film stars. Not even the well-meaning ones.
[I should note that though his comment was technically true in the early 1980s, medical science has vastly improved in the intervening decades. Life expectancies have grown and, more importantly, so has quality of life for people with all sorts of chronic illnesses. If you or a loved one has muscular dystrophy, or any other serious disease, consult a qualified physician…or better yet several.]
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