Laughing at His Nightmare

Shane Burcaw Speaks at NCC

Myra Saturen; photos by Carlo Acerra,

Shane Burcaw and Sarah BurcawThe ability to laugh at his nightmare keeps 23-year-old Shane Burcaw relishing life and helping others despite his massive challenges.    

The author, entrepreneur, award-winning blogger, Emmy-winning producer, inspirational speaker, and Moravian College journalism graduate gave a talk at Northampton Community College (NCC) on October 6.  He was born with a progressive neuromuscular disease, spinal muscular atrophy II, a condition that affects the nerves that control muscle neurons. "It will kill me someday," Burcaw says.  "People don't like to hear that, but it is true, whether it happens tomorrow or fifty years from now."  

Spinal muscular atrophy has impaired Burcaw's ability to swallow, use his hands or legs and carry out many physical functions.  Because he cannot always be sure of his ability to speak without his jaw contracting, his cousin and business partner, Sarah Burcaw, shared the stage with him, the two exchanging good-natured repartee as well as imparting information.  

Despite Burcaw's struggles, he has not let chronic illness quench his tremendous sense of fun, humor or appreciation of life's beauty.  One of his goals is to cultivate happiness in his own and others' lives.  

Four years ago, he realized that he had "a ton of funny stories," ranging from teaching people how to lift him to an attempt to make a basketball slam dunk that turned disastrous for both him and his older brother.  His mishaps, seen through his sharp-eyed lens of hilarity, led to his writing a blog and a book, Laughing at My Nightmare.    

The two most helpful lessons Burcaw has learned are permitting himself to ask for help and maintaining a positive perspective.  He recalled his first speaking engagement, which was at an alternative school for children other schools would not accept.  After an arduous episode with a stiffening jaw that made it hard for him to talk, he noticed a rough-looking, apparently neglected boy stand up to ask a question.  Instead, the boy thanked him.  He said that he had some problems and that Burcaw's talk made him want to share his own story.  "His gratitude slapped me in the face and affected my life," Burcaw said.  "All my life I had struggled to be normal, and here someone was thanking me.  Life is awesome.  The beauty of it begins by connecting with people." 

While acknowledging that he does not feel positive all the time, Burcaw has a way of coping with adversity, an approach he thinks would be helpful for everyone.  "Allow yourself to understand and accept the adversity," he said.  "Then ask yourself whether negative emotions are helping you with your problem.  Ninety percent of the time, the answer will be no.  Focus on what makes life beautiful for you.  Take a step back and laugh at your nightmare," he told his audience.  "Happiness is always an option."  

One activity that brings Burcaw joy is helping children with all forms of muscular dystrophy obtain specialized equipment needed for healthy and productive lives through his nonprofit