With acerbic wit and a hilarious voice, Shane Burcaw’s Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a “you-only-live-once” perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.
Last year, as my blog began to grow into the hundreds of thousands of followers, I decided to write a book. Life was surreal as I queried agents, selected an agent, and sold the rights to my memoir to Macmillan. After the initial euphoria of my first book deal wore off, it was time to write. The process was unlike anything I had ever done before, and I learned some things.
[edit — I met Shane at Moravian college some time back when he wanted to talk about publishing and agents with me and fellow area author Paul Acampora, and frankly, Shane already had his shit together, had realistic expectations, and was already more ahead as a writer than I would be for ten years after — and then, when I was down in Florida doing research for The Cormorant, I went to a restaurant and saw a woman wearing a Shane Burcaw ‘Laughing at My Nightmare’ t-shirt and I went up and talked to her and — this long before he had a book — she was a huge fan. — cw]
1. Writing a memoir at 21 is weird.
When I think of a memoir, I imagine an old person lying on her deathbed, recounting stories of surfing with beluga whales and playing blackjack with Michael Jordan. There’s probably a reason I have that image in my head. I think it’s because memoirs are typically written after a person has accomplished great things, or lived an amazing life. Now, not to discredit my own awesomeness (I’m super fucking awesome), but at 21 years old, I still had a lot of life left to live.
The purpose of my memoir is to show how I use humor to cope with the muscular disease that’s slowly killing me. Obviously, there are reasons my story had to be told now, rather than later (i.e. I could croak tomorrow). But sharing my story with the world at such a young age has created some awkwardness because of the details I included.
I wrote about getting a blowjob for the first time, and I still have to look my grandparents in the eye at least once a week. I wrote about an intimate relationship that was alive and thriving at the time of writing, and I made claims about that relationship that one should NEVER make in book format. We are no longer together, as I swore would never happen in my book. I wrote honestly about people who upset me throughout my life. Those people are going to read it, and I have to deal with their reactions.
The whole thing was a balancing act of wanting to give the reader a deeply personal experience, and not wanting to say things that would come back to bite in real life.
I think I handled it okay-ly, but it was still weird.
2. Editing is a strenuous process.
After sending off the first draft to my editor, I naively expected her to come back with a few suggestions and then we’d move on to copy editing.
No. I’m pretty sure our editing process took longer than the initial writing time.
It was one of the coolest experiences of my life to see the level of editing needed to make a book magic. My editor pushed me to give everything I could to this memoir, and I’m so thankful she did because it made the book about a thousand times better.
3. I can be productive (when I need to be).
I had six months to write my first draft. Piece of cake. At the time I was reading some of Chuck’s writing guides, and I had all these grand illusions of writing for a few hours each day. I will be done in a month, I thought.
Well, I’m an idiot. It turns out that I struggle with being productive when I’m not under the gun. I can say that a majority of my memoir was written in the final month before it was due, while also trying to complete my senior year of college. In the Acknowledgements I thank my family for dealing with moody me during the writing process. That acknowledgement is a wild understatement.
4. Publishing is like crack.
Now that I’ve been through it once, I need more. I’m done writing about my own life for a while, but I’m so excited to get started on fiction. I’ve fallen madly in love with writing over the past few years, and now it’s all I think about. Give me more. Shoot it into my veins.
WE NEED TO COOK, WALTER.
5. My iPhone is a gift from God.
Say what you will about Apple, but the devices they make made writing my memoir possible. I can’t move my arms much anymore because of my disease. I can’t type on my laptop or rummage through printed copies when editing my work.
Over the years I’ve found apps that allow me to use my iPhone as a keyboard and mouse for my laptop. I’ve used organization apps to help myself keep track of the big picture while writing. Apple’s voice dictation allowed me to write even on days when using my phone was tough. It’s incredible what technology has helped me accomplish.
Apple, you should strongly consider giving me a sponsorship of some sort. The U2 album was a nice gesture, but you can do more. I’m thinking a commercial deal with me lying completely naked on a bed of MacBook Airs, with only the iPhone 6 covering my manhood. Actually, better make it the 6 Plus.
And those are some of the things I have learned while writing! It has been a crazy experience, and I’ve loved every minute of it.
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Shane Burcaw is a twenty-one-year-old with spinal muscular atrophy. He is currently a junior at Moravian College in Bethlehem, Pennsylvania, studying English. Shane runs a nonprofit organization dedicated to raising money for muscular dystrophy research.