Shane began taking a new drug treatment about 18 months ago. Spinraza was approved by the Food and Drug Administration in 2016, and the drug may stop or significantly slow the progression of his disease. On those infrequent occasions when his brain might tell him about his mortality, he changes his focus to the myriad of projects he has ongoing.
“Early on in life, it was harder than it is now,” Shane said. “I basically just do my best to embrace it and live every day as hard as I can. No one knows when their time will be up, so it’s a lesson that all people could benefit from.”
Shane isn’t just blowing smoke, he’s put his thoughts into action in a number of ways. Seven years ago, he started a blog, called Laughing at My Nightmare (laughingatmynightmare.tumblr.com). His writing is part comedy and part reality, with a dose of youthful wisdom.
“I was just bored one day, and I wanted to tell some funny stories,” Shane explained how the blog came about. “I never expected it to take on such a life of its own, but as I continued writing it, I began to realize people connected with my mindset of using humor to cope with adversity.”
He now has hundreds of thousands of followers, and along the way, he earned his bachelor’s degree from Moravian College. Then publishers realized that he had such a large following on his blog, he was asked to write a book based on his blog.
Laughing at My Nightmare was Shane’s first book, and his second was a children’s picture book called Not So Different, in which he wanted to show kids, early on in life, that having a disability is not a bad thing. His first two books have been such large successes that his third book, Strangers Assume My Girlfriend is My Nurse will be coming out soon. It’s all about the misconceptions that people have about disability.
While his writing career was taking off, he and his cousin, Sarah, started a non-profit (Laughing At My Nightmare, Inc.) with the sole mission to provide vital equipment to people living with muscular dystrophy diseases. This has turned into a full-time job for both of them. To date, Laughing At My Nightmare, Inc. has made 45 equipment grants totaling more than $85,000. Shane said that in a few months they will be providing a $50,000 grant to purchase a wheelchair-accessible vehicle for someone in need.
Shane has performed more than 150 speaking engagements across the country, from a Mennonite festival to Harvard and from biotech companies in San Francisco to children battling life-threatening diseases in New York City. They continue to raise money for the non-profit, and June 16 will mark the annual running of the Laughing At My Nightmare 5K.
Shane prepares for that event the same way he does everything else in his life…with a smile and a laugh.
Don’t Say, “I Can’t”