I met Simon Fitzmaurice's nurse at Mac's Tavern in Philadelphia over a Felony IPA.
His name was Adam, and he was a Dublin native traveling the United States in an orange Honda Shadow. I was backpacking the country on the Amtrak. We were both thirsty for beer.
A few IPAs later, we were on the fire escape of our hostel with a sloppy brown paper bag of barbecue seitan and more beer. We talked about past and future travels, filtered with the basics of my life back in Tennessee and his in Ireland.
“I work at an elementary school,” I said, wiping barbecue sauce off my cheek.
“I’m a nurse.” Adam rubbed sauce off his chin with the back of his hand.
Adam’s primary patient, Simon Fitzmaurice, was given four years to live when he was diagnosed with Motor Neuron Disease (also known as A.L.S.) back in 2008. Motor Neuron Disease (MND) attacks the nerves in the brain and spinal cord, cutting off messages being sent to the muscles. Paralyzed, he is mostly confined to a wheelchair. But his mind is not confined by MND. He is a writer, director, and poet. Above all, he is an artist.
“I believe in the power of people’s ability to wake up to the fact that they are alive, simply because it occurs in my own life,” Simon said in an interview with Irish Times.
Since his diagnosis, not only has he gone on to father twins with his wife Ruth, he’s also published It's Not Yet Dark — a memoir written with eye-gaze technology, which allows him to use eye movements to operate a computer and type out words. Additionally, he’s directed the new film My Name is Emily, which hit Irish cinemas on April 8th after premiering at the Toronto Film Festival in 2015. So far, the film has won awards at the Galway Film Fleadh and the Victoria TX Indie Film Fest. My Name is Emily is a poetic story about a teenage girl (Evanna Lynch) who runs away from a foster home to find her father who has been locked away in a psychiatric institution.
In an interview with Screen Daily, Simon says, “When my life fell apart, my writing was there for me. I became a writer through my darkest days. And, like writing, the passion of film has never left me.”
“The film wasn’t proving anything to anyone,” Adam explained, tipsy and proud. “It wasn’t for selfish reasons. He has a love for film, a genuine and deep love.”
My Name is Emily is not Simon’s first film. Before his feature debut, he directed two award-winning shorts, The Sound of People and Full Circle. The former was screened at the Sundance where he met the late Alan Rickman, who would later become a friend and supporter of Simon.
“I haven’t met anyone who didn’t cry reading his memoir It's Not Yet Dark,” Adam said. “It’s abundant with love and life whilst on the cusp of death. He’s a hero.”
We tossed the barbecue-soaked bag in the trash can below us.
“He's full of life, huh?” I said, dangling my feet off the fire escape.
Adam smiled. “More than most. He’s brilliant — an absolute genius.”
We took a break to sip our beers.
“I like these,” Adam said, crushing his empty can. “Should we get another?”
Photo by Wikimedia Commons
Originally from Chattanooga, Shannon now spends her time gallivanting around Colorado, writing about everything from flattened fauna to spiritual midwifery. She likes food that makes her sweat, towns with grit, and the occasional shenanigan. Follow her adventures at The Strange and New.