Burcaw touts his lighthearted approach
Living with Spinal Muscular Atrophy Type II has taught Shane Burcaw a thing or two about life, perhaps the most important of which is not to take it too seriously.
He shared the wisdom – and the pitfalls – of his unique experiences with students at The Kingswood School at the Children’s Home, where his uncle, Ted Burcaw is principal, Tuesday afternoon as part of his 2013 Laugh Tour.
“I know you’re probably thinking, holy crap! What is wrong with that kid? And I don’t really blame you… my arms are about as big as a hot dog,” joked Burcaw. “…My disease has been causing my muscles to waste away since I was a baby. I’ve been in a wheelchair since I was two years old.”
Burcaw’s quirky, upbeat attitude and determination to find the humor in the suffering caused by his disease have gained him national attention and acclaim. Despite the gravity of his situation, the Bethlehem, Penn. resident has made a point of living his life with a singular purpose, finding reasons to smile at every turn. Burcaw’s message is catching on. His blog, “Laughing at My Nightmare,” has thousands of followers. In the blog, Burcaw relates stories of some embarrassing moments of his life in a wheelchair, sharing experiences that had been known to draw laughs in the past, such as his head falling over, like it did when he was startled by a loud sound during his first college class. Burcaw’s neck muscles are too weak to allow him to lift his head himself, so he was forced to seek help.
“I had to awkwardly ask the kid sitting next to me to pick my head up,” related the Moravian College junior. “He responded like I had asked him to perform brain surgery on me, but eventually he figured it out.”
The blog began out of boredom and almost by accident, Burcaw said.
“My intention was never to inspire people or anything like that,” he remarked. “That all came later, which is an amazing thing.”
Burcaw also serves as president of the nonprofit Laughing at My Nightmare, which focuses on positive thinking and raises funds to support muscular dystrophy research.
“Our mission is to encourage people to remain positive during times of adversity,” he said. “Chances are I’m probably not going to live as long as other people do … but like every adversity in life, I have a choice about how I want to react to my situation.”
Burcaw said he first confronted his own mortality as a preteen, when a young man he knew lost his life to muscular dystrophy.
“That night, I went home and looked up the prognosis of the disease online. My heart was pounding, my hands were shaking, but I made myself do it,” he related. “My life changed forever.”
From that moment on, Burcaw said he made a conscious decision to focus on the important things in life – family, friends, and as much laughter as he can possibly squeeze into a day. Though he works hard to maintain a sunny attitude, Burcaw said he has moments when he is terrified of his fate, but, Burcaw reasons, worrying about his death won’t change the outcome, so he forces himself to shift his perspective.
“It can be very difficult. Every night when I’m lying down for bed, I can’t help but think about that kid that I knew who passed away in his sleep. That thought alone is enough to keep me up all night,” he said. “… (but) I stop and I let it go and I move on. I’d rather fall asleep thinking about unicorns and butterflies than dying.”
Burcaw was accompanied by two friends, Operations Director Mark Andrew Male, whom Burcaw affectionately refers to as Andy, and Shannon O’Connor, the organization’s creative director. Burcaw’s jaw muscles become easily fatigued, so Male and O’Connor helped him relay his triumphant story to the students.
“Our purpose today is just to show you that perspective can go a long way in helping you overcome your problems,” said Male. “…Death is never easy to think about, but Shane’s attitude makes it so that even though it is on his mind, he can still continue to laugh and enjoy life.”
“We all help tell Shane’s story because his message is one that resonates with all of us,” O’Connor added. “…No matter who you are, you can always laugh at your nightmares.”
Burcaw was also joined by a crew from actor Rainn Wilson’s SoulPancake production company, which is chronicling his story in the documentary “My Last Days – Meet Shane Burcaw.” Burcaw has recently landed a deal to produce a “Laughing at My Nightmare” book. He visited the Kingswood School, which serves youth with emotional and behavioral disorders, on May 28, his 21st birthday. It was a day many believed he would never live to see, his uncle said.
“He’s outlived predictions of life expectancy and I just knew that his story would speak to my students here who all have reason to be negative about their lives,” he remarked. “…As the momentum has grown, there really is this energy that is around him and I’m awed by it.”
Shane has been contacted by the Oprah Winfrey Network and is slated to do an interview with Katie Couric next week, his uncle said.
“He’s becoming kind of a rock star but honestly, he is just Shane. There’s nothing that has changed about him,” Ted Burcaw declared. “I think he was meant to tell this story.”
A collaboration between the Winston-Salem Forsyth/County School system and The Children’s Home, Kingswood serves as a public alternative school serving students in grades 6-12 who are in need of additional educational, behavioral and emotional support. Ted Burcaw has served as the school’s principal since it opened in 2010.
For more information about Laughing at My Nightmare, visit www.laughingatmynightmare.com.