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Not for the Faint of Heart

posted by: December 23, 2014 - 7:00am

Cover art for Laughing at My NightmareOne of Shane Burcaw's biggest goals was getting people to see past his disability. It's fair to say he accomplishes that and more in his candid new memoir, Laughing at My Nightmare. Even the title suggests some of the self-deprecating humor that helps shape the amusing but bittersweet tone of Burcaw’s story. Saddled with spinal muscular atrophy at age 2, the 21-year-old has been in a wheelchair his whole life, but that's not what this young man’s story is about. It’s about figuring out how to live a life as close to normal and sharing his daily successes and failures along the way.

 

There is no cure for Burcaw’s condition. His body does not produce the enzyme necessary for producing and maintaining muscle tissue. His body is failing him, but he refuses to fail his body. Disease aside, the Bethlehem, Pennsylvania, native is just a normal guy. He hangs out with his buddies, admits to liking girls and goofs off playing video games. The difference is he depends on others to do everything for him, from dressing to toileting. He has a hard time when it comes to fitting in with others with disabilities. The fact that he doesn’t want sympathy comes through loud and clear.

 

Burcaw shares his experiences through his blog, (also called "Laughing at My Nightmare"), where humor is an integral component. He figured there were people out there who would want to know what life for a severely disabled person is like. So he starts writing about sex, fear of dying, questions about God. Before he knew it, he had several thousand followers and was soon embarking on a national tour to raise money and awareness for his disease. Burcaw’s story is not without its somber moments. With short chapters, black and white photos and text bubbles, he manages to strike just the right chord for what he is trying to accomplish. “What if we traveled to schools and talked about humor and positivity?” he says, “We could help kids see that life is what they made it.” Teens and adults will find much to like in Burcaw’s heartfelt journey.

 


 
 

Revised: November 18, 2015