Capreol author Matthew Del Papa has recently come out with his memoir, a collection of humorous essays about living with a disability.
Born with the degenerative condition spinal muscular atrophy, Matthew Del Papa has been using a wheelchair since the early 1980s, when he was still just a kid.
His memoir is called “Jerry Lewis Told Me I Was Going to Die,” hearkening back to an unfortunate misunderstanding when he was around nine years old, and watching a muscular dystrophy telethon, with Jerry Lewis as the host.
“He basically said that children with muscular dystrophy seldom live past their 16th birthday,” and Del Papa misconstrued this to mean that he was going to die when he turned 16.
“And so for years, I lived in terror of my 16th birthday, with the understanding that when I blew out the candles, my life would be extinguished,” he said.
While this incident traumatized him for years, Del Papa said he later realized that he doesn’t actually have muscular dystrophy, and people who have his condition, spinal muscular atrophy, can live regular lifespans.
Del Papa also gets into the “meet-cutes” with celebrities he’s had in elevators, including “Weird Al” Yankovic and baseball players Ernie Whitt and Bob Uecker.
Speaking of elevators, Del Papa describes them as his “nemesis.”
“One day at Laurentian (University), when I was waiting to get on the elevator, running late for my class, and all the other able-bodied kids are jamming in front of me and they're looking at me like, what are you going to do?” he said.
“So I said ‘Don't worry, but I'll take the stairs.’ They looked at me like I was crazy, but I’m like, what do you want me to say? I'm not gonna start screaming at you. So I just made a joke and waited my turn, and if I was late, I was late.”
Del Papa, a graduate of Laurentian University’s MA in Humanities program, has been writing seriously since 2005. He’s past-president of the Sudbury Writers’ Guild and is on the board of the Wordstock Sudbury Literary Festival.
An amateur local historian and part-time columnist, his work has been published in newspapers and magazines, as well as anthologies such as “Spooky Sudbury” (Dundurn Press, 2013) and “Nothing Without Us Too” (Renaissance Press, 2022).
Del Papa’s memoir has been published by local press Latitude 46 Publishing.
He explains that in 2020, in the midst of the pandemic, he decided to send a book pitch to Latitude 46 based on his humorous newspaper columns over the years about living with a disability.
Del Papa had heard at the previous year’s Wordstock festival that the publisher was looking for disabled authors. To his delight, the local publisher accepted his pitch.
“It was never my intent to write a memoir, or even a book of essays,” he said. “It's just that I wanted to be honest. Sometimes I'm far too honest. I'm sure my family members are horrified, especially by the sex chapter. That's maybe going to be going a little far for them.
“But I wanted to kind of explain things as I experienced them, the good and the bad, the warts-and-all kind of approach. Most of the time the people in the book that come off the worst are me. I don’t mind being the butt of jokes.”
Asked what he wants people to know about what it’s like to live with a disability, Del Papa said “it’s not the end of the world.”
“People look at a wheelchair user like myself, and they just see sadness, or a waste of space, or a life of misery,” Del Papa said.
“It's not like that at all. I mean, I have my happiness, my joys and my hobbies, and my friends and my family. My town of Capreol has been supportive of me since I was a little kid.”
A book launch for “Jerry Lewis Told Me I Was Going to Die” was held at the Capreol Curling Club this past weekend.
However, Del Papa said he is also holding a book talk at the Valley East Library May 17 at 6 p.m., as well as a signing at Sudbury Chapters at 1 p.m. June 10.
Books can be purchased through your favourite bookseller or through Latitude 46 Publishing at Latitude46publishing.com.
Heidi Ulrichsen is Sudbury.com’s associate content editor. She also covers education and the arts scene.