College sophomore Shane Burcaw is laughing at the nightmare that is his neuromuscular disease. Find out why.
DH: Share a bit about yourself and where you're from.
Shane Burcaw: I am a 19-year-old sophomore at Moravian College in Bethlehem, Pennsylvania. I’m studying English with the intent of being a professional writer some day.
I was born with a genetic, neuromuscular disease called spinal muscular atrophy, which basically causes the muscles in my body to waste away over time. I was never able to walk, but instead began using a power wheelchair when I was two years old, and I have been running over people ever since.
Sometime around the end of middle school or the beginning of high school it dawned on me that I probably would not live as long as everyone else. This thought came from observing the rate at which my muscles were deteriorating during those years, but for a long time I refused to acknowledge it. I purposely did not research my disease online during those years because I did not want to know the truth.
However, I eventually did discover that people with my disease typically only live into their 20s. It honestly wasn’t anything like a life shattering moment or even a depressing time for me. There have been exceptions to this estimation and I’m pretty confident that I will be one of them.
Besides all of that fun stuff, the most important thing about me is my sense of humor. I find everything about my life, my disease, my situation to be absolutely hilarious, and I really don’t understand how people could live through what I live through any other way. I love to laugh, plain and simple.
DH: Tell us about your blog, Laughing At My Nightmare, and how it has impacted your life.
SB: In May of 2011, during a very boring week when most of my friends were still at school or already on vacation, I had a spur of the moment idea to write a funny story about the time I fell out of my wheelchair and broke my femur. Once I wrote it, I decided I wanted to share it, because I wanted to make other people laugh, which was honestly my only motivation for starting the blog. I made a Tumblr account, banged out a quick introduction to give readers some context, and posted my femur story. At the time, I believed that starting the blog was a really bad idea that would inevitably fail and be a waste of time.
After a few days of very minimal response, I decided to message some other random Tumblr users to give them a heads up about my blog. At this point I really just wanted someone to validate the effort I had gone through of writing the first two posts.
Those few people that I messaged did check out my blog, and I guess told their friends about it because slowly my number of “followers” began to climb. Everything that happened from then on is still pretty surreal. While keeping the blog a secret from my friends and family for the first month and a half (because of some of the subject matter I wrote about), my followers, as well as the e-mails I started to receive, climbed into the thousands. I continued writing stories throughout the summer. After a while I worked up the courage to tell my family about what I was doing, and they were obviously blown away and extremely supportive.
I said I would keep this short - ha ha! Today, I have over 34,000 followers. Several celebrities have contacted me. I’ve been on the news. I’m working on turning my stories into the book (publishers, hit me up!). And last but not least, I have started a nonprofit organization with my cousin, Sarah. Our mission is to spread positivity and raise money for muscular dystrophy research.
All of this started from one stupid little story about breaking my femur. Crazy.
DH: What helps you stay positive?
SB: Laughing and making people laugh. Interacting with people, making new friends. My friends are definitely a large reason that I’m able to stay positive about my life. But most of all, McDonald’s Sweet Tea.
DH: How do you deliver happiness to others?
SB: I know this is going to start to sound redundant, but I like to think that I make other people happy by making them laugh.
DH: How do others deliver happiness to you?
SB: Nothing makes me happier than when people treat me like a normal person. There are so many people out there who see my wheelchair and immediately write me off as socially awkward, so they treat me like a mentally challenged five-year-old. But I have come to learn that there are way more people out there who could care less about my wheelchair and my disease, and that gives me a lot of hope/ happiness.
DH: What inspires you?
SB: Since I am kind of living with the ingrained idea that I won’t live as long as everywhere else, I’ve always had this intense desire to be successful with the time that I do have. Not necessarily in the sense of getting a good job and buying a nice house, but rather I want to make a lasting impact on the world. I want to reach as many people as possible. I want people to remember me.
DH: Why do you think people sometimes struggle to be happy? (and do you have a suggestion for happiness?)
SB: Without trying to sound preachy, I think a lot of the time people lose sight of what’s important. They allow small, insignificant events to take control of their entire lives. That is all in their minds. I’m a firm believer that no matter what the situation, if you’re able to take a step back and look at your life in the “big picture” sense, most problems become much less significant. It’s definitely not an easy thing to do, but it’s possible. Life is a lot more fun if you allow it to be.
DH: Who has helped you shape your outlook on life?
SB: My family and friends have all helped me understand that my life will be what I make of it. They have never coddled me or treated me in a special way because of my disease, and I would not have it any other way.
DH: Describe the new project you're working on.
SB: Laughing At My Nightmare, Inc., is the nonprofit that Sarah and I created. As I mentioned before our purpose is to raise money for muscular dystrophy research, and promote a message that everyone has a choice to be happy. My ultimate goal is to be a nationally recognized brand, where people wear our merchandise and support our ventures because they agree with the message that we are promoting.
DH: What's a favorite happy tune / music that makes you happy?
SB: Anything by Circa Survive makes me happy. You should listen to them.
DH: What's something weird that makes you happy?
SB: I really enjoy being made fun of, just as much as I enjoy making fun of other people. My friends and I spend a majority of our time making fun of each other.