How to Laugh at Your Worst Days (and Why You Should)
Shane Burcaw, 22, suffers from a debilitating disease, Spinal Muscular Atrophy (it’s related to Muscular Dystrophy). Despite his illness, or maybe, because of it, the Moravian grad is internet-famous: he’s written a book, founded a nonprofit called Laughing At My Nightmare (LAMN), and is currently jet setting around the country on speaking engagements. His idea? Laughter as prescription, in all your worst circumstances and on all your worst days.
Burcaw’s nonprofit, LAMN, fundraises for kids with MD and SMA, to make their lives “more awesome.” Burcaw has a vision of helping people with illnesses lead better lives, but also, of helping everyone realize on a day-to-day basis that if he can laugh at his lot in life, they can too. We caught up with Burcaw at his house in Bethlehem where his team is preparing for world domination with their positivity and laughter movement. Burcaw, who has a wicked sense of humor, chatted with us about his (multiple) tattoos, the upcoming LAMN 5K , and Rainn Wilson’s bathroom.
What is the message you’re sharing with your book “Laughing At My Nightmare”?
All of us have problems. Being alive means you’re going to have problems. Some of them are more severe: lifelong illnesses, losing people. Some of it is just the day-to-day stuff that pisses you off. I’ve found in my own life of living with Spinal Muscular Atrophy, that how you react to the problems you have really has a big impact on your overall happiness, and your overall ability to effectively handle those problems.
Tell me a little more about your disease.
I was born with a disease called Spinal Muscular Atrophy. Basically, it causes my muscles to waste away as they get older. So, I never walked. I never crawled. I got my first wheelchair when I was two and a half years old. I’ve been in a wheelchair my whole life. It slowly makes life more difficult for me. So if you think about every little thing that you do in a day, I probably need help with that in some way.
For instance, ten years ago, I could eat a meal on my own. I could eat my food, chew it … all the things that you don’t even think about when you’re eating. And then, ten years ago, I realized I was having trouble chewing. Halfway through the meal, I wouldn’t be able to keep eating because my jaw would get tired. This got worse and eventually led to me having a feeding tube every night because I can’t physically eat enough food in the day to support all of the energy that I’m wasting just chewing.
So how do use your position to help other people?
I share stories about being in the hospital with illnesses that I was pretty sure were going to kill me at the time. During those times, my mindset transitions from that fear and that chaos of being about to die, to deciding that I’m going to be positive about it. I decide I’m going to try to go through it as best I can, and try to focus on surviving and getting better. It really plays a big role in the recovery and helping me get out of the hospital. That’s the extreme side of things. But I also share stories about just everyday stuff — like relying on friends and family to help me go to the bathroom, and all of the awkward and funny stuff that happens because of that. I use humor to make light of these things so I’m not constantly worried about feeling awkward or making things weird.
LAMN colleague Erin chimes in that Shane didn’t use a bathroom for 12 hours the day before because he was traveling to give a speech.
12 hours? That’s a long time to hold it.
Sometimes I hold it for 12 hours. I don’t know how I do it-—I’ve just been holding it my whole life. There are times when I’m not around people who can help me out, so I learned how to hold it at a young age. It’s a process for me to go. I have to lie down and use a travel urinal, so it’s difficult to go when I’m not at home.
I can just show you if you want…
I’ll pass on that. But, I pee about once every hour so this is mind-blowing.
(Shane gestures towards his colleagues)
So do these two I work with. Try to make that your headline somehow: “Boy Who Doesn’t Pee.”
I’m going to work that in at the top.
I just know this is going to turn into some kind of police investigation of abuse now.
OK, but seriously — you’re talking about terrifying situations, and the worst things possible. How do you get to this point where you say, “OK, I’m going to change my perspective on this.” How do you do that?
For me, it’s a matter of practicality. So, for example, if I was in middle school and I was upset about the fact that my friends were going to a party and I couldn’t go because it was at a house that I couldn’t get into because it had steps, I’d be at my house, and I could very easily spend the night being upset in my room, angry, not having fun. Or, I could accept the fact that things are what they are, and make the choice to not worry about it, because being negative doesn’t solve the problem.
And that’s what it comes down to. I ask myself, “Is being upset helping?” And it basically never is. So at that point, it’s a matter of realizing that and moving on. Like, “Okay, it’s not helping to be upset. So why be upset, because I’m not having fun being upset. And we only have a limited time here. So why waste time being upset?”
It’s so true. But it’s so hard to do. When I get upset, about anything, I find it hard to change my perspective.
It’s really easy to get locked into this, “The world’s out to get me” mindset. Like if a few bad things happen in a row, it can ruin your day. And I think that we need to realize that, it doesn’t have to. That you can take a step back and look at your problems and realize that there are still lots of things to be happy about, and then you have a good rest of the day, rather than a shitty day because you were angry about something that happened five hours ago. It’s practicality.
How did you start your Laughing at My Nightmare nonprofit?
It started from a blog that I began on Tumblr in 2011. My intention on Tumblr from the beginning was just to make people laugh with my stories, and suddenly I was realizing that I was helping people and that they were being inspired. It blew up in a way I never expected it to blow up. As a 19-year-old I didn’t really know what to make of all of it. The nonprofit was really born out of the blog and trying to take this message of positivity and share it with a wider audience, while also giving back somehow to MD.
So what does LAMN do now?
We have a two-part mission. The first part is a program called No More Nightmares. That is designed to provide equipment and technology to people living with MD to make their lives more awesome—more comfortable, more healthy. Some people apply and say “I need a ramp. My house doesn’t have a ramp and I have to leave my wheelchair outside.” That’s awful. Many people, if they don’t have a good support system, or good insurance, they can’t have those things. Life is much more difficult with a disability when you don’t have the adaptive stuff that you need. So we provide items like that.
The other thing is the Positivity Outreach: videos and speeches. So it’s about making people happy, and helping people with MD. We also drink a lot of coffee. We have a 5K coming up on June 20th. That’s hopefully going to be our biggest fundraising event this year.
Have you had any particularly memorable experiences of people reaching out to you since the blog and the book?
This is insane and I still don’t really know how to properly describe what this feels like. But I’ve had a few people tell me that they were thinking of killing themselves on a particular night. And then they happened to stumble upon my blog before they did it, and it stopped them from doing it. That … there’s no … I can’t describe what that feels like. It completely reaffirms for me what we’re doing, and why our message really is important.
What does the tattoo on your neck mean?
This tattoo is the symbol of my favorite band, Circa Survive. It’s called the “safe camp” symbol. It’s a symbol used by traveling hobos to mark houses that are a safe place to stay. I like that concept. I also have a T-Rex in a wheelchair on my thigh.
I’m a Scranton girl so I have to ask about Rainn Wilson. He blurbed your book cover—how do you know him?
His company Soul Pancake did a documentary about me, called “My Last Days.” I kind of hate the name of it. They said they would make it obvious that I wasn’t going to die tomorrow though, and in the end I was very happy with the episode they made for me. I met Rainn Wilson through that, and we Skyped, and he gave me a tour of his trailer. He was on set filming “The Office” at the time, and he showed me his bathroom for like 5 minutes. It was hilarious.
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