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Posts Tagged ‘Shane Burcaw’

Laughing at my Nightmare by Shane Burcaw

Posted by: on: March 9, 2015


LaughingNightmare

The majority of young adult books featuring a character with a disability are written by an author who does not have any special needs. The majority of these books also make the character a token one, where the character is intended only to build sympathy. Laughing at my Nightmare by Shane Burcaw is a wonderful exception in two ways. First, Burcaw was diagnosed with spinal muscular atrophy at age two and so brings personal insights into having a physical disorder. Second, in the midst of educating readers about his potentially fatal disease, Burcaw also shares plenty of universal stories. Over all, Laughing at my Nightmare is a humorous and realistic memoir that will resonate with all readers.

Because Burcaw has been in a wheelchair his entire life, his day-to-day life looks somewhat different from that of an average able-bodied person. For example, while most of us might take for granted our ability to eat, for Burcaw during his childhood, the act required someone cutting up his food and the use of plastic fork because metal was too heavy for him to lift. As Burcaw grew older, and his muscles deteriorated, eating even required a feeding tube. Most of us also might consider a trip to the bathroom to be a rather mundane event, but for Burcaw it requires someone else pulling down his clothes and lifting him to the toilet and then redressing him. This means, Burcaw often likes to hold his pee as long as possible, to avoid the twenty-minute disruption to his day.

These examples might seem like Burcaw’s memoir will be another tear-jerker about a disabled teen overcoming the odds. Burcaw instead regularly lightens the mood with his unique perspective on his disability. For example, he quips that the real fun for him began at the age of three when he got his first wheelchair. Now if Burcaw wanted to “inspect the fascinating bug on the wall” all he had to do was press a directional button to move closer. Later, when he received a wheelchair with joystick controls, he could also smash full speed into a wall. Then there was the day that Burcaw and his friends wanted to dunk in basketball. His friends were too short and so Burcaw came up with an idea to help that used his wheelchair. It unfortunately also destroyed the rear motor controls, “which had to be replaced at the price of $4,000 each. Whoops.”

Of course, these incidents do put front-and-center Burcaw’s disability, whereas I said that Burcaw shares plenty of universal stories. Readers with or without disabilities should be able to relate to Burcaw’s childhood fear of being left alone. One night after Burcaw went to bed, his parents sat outside on the porch, and he decided to call out to make sure they could hear him. Unfortunately, the baby monitor had died. For forty-five minutes he screamed alone. While most of us might not share Burcaw’s experience of having to receive monthly shots, a good many of us are no better at handling shots. I know myself that like Burcaw I start feeling the pain of a needle, the minute I see a needle. I also have to distract myself by thinking of other things while the needle is going into my arm. Young people especially will also relate to Burcaw’s desire to fit in with his peers as much as possible, to the point that during middle school he dressed like a skateboarder. There are endless other examples, just waiting to be read!

I do have some cautions. Burcaw’s early concerns was that his publisher in wanting the memoir to be young adult might decide to censor him to make the book appropriate. After several discussions with his editor, he realized that his editors wanted Burcaw to tell his story in his own way. As a result, there is a lot of swearing that might turn off some readers. Girls may end up grossed out by the graphic depiction of how Burcaw pees and poops. There is also frank discussion of sex and other mature topics that might not be best for younger readers. Finally, I tired of judgments of other students with disabilities.

Overall, however, I enjoyed Laughing at my Nightmare. Burcaw’s memoir heightened my awareness of what it might be like to have a physical disorder, while also reading like the bizarre and beautiful adventures of a typical young adult. Not only will you not look at life in quite the same way after reading Laughing at my Nightmare, you’ll also start to seek out similar books.

My rating? Read it: Borrow from your library or a friend. It’s worth your time.

How would you rate this book?

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Laughter the Best Medicine?

Posted by: on: March 2, 2015

Shane Burcaw was diagnosed with Spinal Muscular Atrophy when he was only two. SMA is a genetic disease which is the number one killer of children under the age of two. According to Families of SMA, the disease destroys the nerves controlling voluntary muscle movement, which affects the ability to crawl, walk, control head and neck, and even swallow. Most individuals diagnosed with SMA do not survive beyond the age of 10, but some such as Burcaw have lived into adulthood.

According to Burcaw at Tumblr, “Basically, all of the muscles in my body are extremely weak, because I lack the protein necessary for muscle creation. My disease won’t kill me by itself, but it is progressively getting worse, so eventually (I’m hoping not for a long time) I will get sick and it will turn into pneumonia and my body won’t be able to fight it and that will be the end of the road. Living with this awareness of my uncertain future has really molded me into the person I am today.”

PERSONAL BACKGROUND

Shane Burcaw, who suffers from spinal muscular atrophy, uses humor to entertain and educate others about the disease. Express-Times Photo www.lehighvalleylive.com702

Shane Burcaw, who suffers from spinal muscular atrophy, uses humor to entertain and educate others about the disease. Express-Times Photo | http://www.lehighvalleylive.com702

At twenty-two years of age, Shane Burcaw has accomplished more than many adults. He has graduated from Moravian College. He hosts a blog called Laughing at my Nightmare. He has written the story of his life in a book of the same title. He has also started a nonprofit to spread positivity and to raise money for families affected by muscular dystrophy.

Burcaw’s family and friends are a huge part of his life, which you’ll discover by reading through some of his blog posts. He has been in a wheelchair since the age of two and loves to laugh. In 2013, he made his first trip without his parents, when he drove from his home in Bethlehem, Pennsylvania all the way to Disney World. Daily Mail reports that this was Burcaw’s first time being away from his parents because his disease makes him reliant on them for almost everything physical. Along the way to Disney World, Burcaw also made several trips to other cities to speak with readers of his blog.

WRITING BACKGROUND

Burcaw started his blog one summer afternoon, partly out of sheer boredom and partly out of an urge to write. He tells YALSA, “Looking back, I think I was battling a subconscious fear of being forgotten around that time in my life. I’ve been living with the reality that my disease will kill me someday since I discovered that truth in middle school, and leaving an impact on the world, making my time seem worthwhile, has always been crucially important to me.”

This latter thought, however, wasn’t at the forefront of Burcaw’s mind when he decided to write the first post. According to YALSA, he just wanted to make people laugh. As the blog began to grow, Burcaw discovered that readers cared about what he had to say. Moreover, readers from all across the world were emailing him to thank him for inspiring them! Although this hadn’t been his initial purpose, by accepting that humor and positivity are powerful concepts, Burcaw found he could help people.

In fact, Daily Mail reports, teen Shannon O’Connor is proof that his blog has had an impact. The two got to know each other when she started reading his blog after her mother died of cancer. When Burcaw asked readers to volunteer with his non-profit, O’Connor stepped up and now the two are best friends.

The idea for his book, Laughing at my Nightmare, came from Burcaw wanting to take his story to the next level. Burcaw wrote the book in college. He admits to YALSA, “Just like a typical college student, I procrastinated tremendously. I’m a fairly quick writer once I have an idea, so I told myself I could bang out a book in a few weeks once I set my mind to it. HA HA.” Although writing is Burcaw’s biggest passion, he soon discovered there were moments when it’s also the most frustrating and scary thing he could do. Indeed, He experienced many of those moments in the weeks before my manuscript deadline.

Bethlehem Area Public Library notes that one of Burcaw’s early concerns was that his publisher wanted it to be a young adult book. Burcaw worried that they might censor him to make the book appropriate. After several discussions with my editor, he realized that his editors wanted Burcaw to tell his story in his own way. As a result, there is a lot of swearing and sex and other mature topics that might not be the best for younger readers, but does honestly reflect Burcaw’s life. Burcaw believes teens will identify with his story.

Not all press has been positive. Bad Cripple argues that laughter is NOT the best medicine. However, Burcaw maintains, “The way I look at it is my message is not, ‘Hey I can be happy and so can you.’ ” He tells Daily Mail, “All I’m doing is saying, ‘This is my life, this is how I handle it.’ If I can give someone a new perspective because of that, that’s awesome.”

I’ll be back later in March with a review of Laughing at my Nightmare. Because I have spring break, March will be a little different for my posts. The first week I’ll post daily teasers and the second week I’ll post daily reviews. Save the date for my review of Burcaw’s book: March 9!

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