Shane Burcaw has been through a lot, but you’d never know it from his sunny outlook. Shane has struggled with spinal muscular atrophy for the entirety of his young life, but hasn’t let that stop him from seeking to improve the lives of everyone around him through humor and laughter. Here, he chats with Bookish about his new book Laughing at My Nightmare, the healing power of a good laugh, and his unparalleled love of Ellen Degeneres.
Bookish: You started the Laughing at My Nightmare Tumblr in 2011, at a time when you knew you wanted to study English in college but the rest of your future was uncertain. Three years later you’ve founded a nonprofit organization and written a book! What has been the biggest surprise along the way?
Shane Burcaw: I actually don’t have SMA. I’m not even in a wheelchair. The biggest surprise has been that no one has discovered my secret yet. I’ll do the big reveal on Ellen if I ever make it on her show…;)
In all seriousness though, the thing that has surprised me most has been the overwhelmingly generosity I’ve experienced during this crazy adventure the past few years. I never imagined that people would respond to my story with such gratitude. The message of using laughter to overcome adversity is one that anyone can identify with, and I’ve watched it bring people together in some pretty awesome ways. This world is an incredible place filled with so, so many people who want to do good things for each other. It’s easy to forget that, but I’ve seen firsthand how true it really is, and I think it’s important to always keep that in mind.
Bookish: You talk in both your blog and book about the need to make disability more mainstream. What can readers do to make that happen?
SB: Treat everyone you meet as an individual. As you can see in my book, this is a lesson I struggled to learn throughout my teen years. I so desperately wanted to break away from my disability because I understood the social implications of having one. I just wanted to be “normal.”
When you meet someone with a disability, make every effort to just treat them as a person, like you’d treat anyone else. I can guarantee that speaking slowly and loudly to me just makes me want to run you over.
Bookish: You write about how your jaw muscles get tired if you talk for a long time. How did you go from being afraid to give a 10-minute presentation in high school to traveling the country and giving speeches?
SB: At some point I accepted that speaking for me would need to be adapted if it was going to work. As the nonprofit came about, I developed speeches that used videos and other speakers to take some strain off of my own mouth. I still have moments where the jaw starts to freeze up on stage. I do my best to laugh it off and make a joke of it for the audience. Ironically, public speaking is one of my favorite activities today.
Bookish: How did you decide on the name Laughing at My Nightmare for your blog, book, and nonprofit?
SB: I summoned my muses with a secret ritual that I can’t describe here for the safety and sanity of your readers.
Bookish: Your nonprofit, LAMN, has hosted fundraising 5ks and recently launched No More Nightmares to bring adaptive technology to those living with muscular dystrophy, among other accomplishments. What is a dream project you’d love to one day see the organization accomplish?
SB: I’d love to see us organize a massive stand-up comedy festival to celebrate the importance of laughter. Louis C.K., I’m looking at you, man. Let’s make this happen.
Bookish: Were there any stories that didn’t make it into the book that you really wanted included?
SB: My editor, Nancy Mercado, is brilliant. I was amazed by her perception of which stories worked and which didn’t quite hit the mark. Really, the only thing I wish I could have included is stuff that happened in my life after the manuscript was due, which I can’t do much about. Graduating college this past May was a pretty big moment in my life. Let’s see, what else? My brother almost killed me with a bag of frozen chicken fingers this summer. That would have been a good one too.
Bookish: In the book, you share a moving moment with a young fan who thanked you after your speech at his school. Is there any other moment of connecting with a fan that sticks out in your mind?
SB: Oooooh, that’s a tough one. The reception to my blog has astounded me. A very cool moment that is not in the book was when the lead singer from my favorite band, Anthony Green from Circa Survive, discovered my blog and invited me backstage to one of his shows in Philadelphia. It was one of the coolest nights of my life, getting to hang with him and talk about life and positivity together.
Bookish: There’s also a lot of Netflix binging in the book. What are you currently watching?
SB: Oh god, it’s scary that my Netflix obsession comes across in the book. I’m currently re-watchingParks and Rec for the 59th time. I need something new to watch! Or maybe I should, perhaps, go outside and experience the world? Nah.
Bookish: You say you’d love to meet Ellen DeGeneres. What is it about her that has you so captivated? And what would you say to her if you met her?
SB: I would beg her to legally adopt me. Ellen’s entire persona and everything she does just creates so much happiness in the world. That amazes me. I think we would have a lot of fun trying to make each other laugh. She’s the absolute coolest.
Author, entrepreneur, award-winning blogger, Emmy-winning producer, and inspirational speaker,Shane Burcaw brings a spirited, humorous approach to everything he does. Born with a progressive neuromuscular disease, Shane has been battling a weakening body since birth. Early on he discovered that approaching his problems with a sense of humor made them much easier to deal with and overcome. Today, he shares that message through his nonprofit organization, Laughing At My Nightmare, Inc.