As sophomore in college, Shane Burcaw started a humorous blog about his life in a wheelchair. He felt self-conscious and a bit "pretentious" for making it all about himself, but as an English major it felt right to share his daily ups and downs through writing. Mostly, he wanted to poke fun at the rare muscle-wasting disease he was born with called spinal muscular atrophy (SMA) and to make his friends and family laugh.
"I was just trying to be funny," he says. "But people found my stories, and pretty soon I was getting messages from Australia and around the world about how I was giving people a new perspective on their problems. It was very organic the way it just blew up on its own."
Burcaw, who graduated in 2014 from Moravian College in Bethlehem, Pennsylvania, is now a motivational speaker, book author and head of a nonprofit called Laughing At My Nightmare, (LAMN) which helps people with neuromuscular diseases. His blog has more than a half million followers, and his witty take on overcoming adversity is becoming a movement.
"My message is that no matter what your problem is, there are things you can do to be more positive," he says. " The goal is to achieve happiness. You have to find reasons to enjoy every day. Laughter and love are what I like to focus on — and food ... and also coffee."
The choice to be positive
Burcaw was about 9 months old when his parents received the gut-wrenching news that he would probably never walk or be able to perform even basic daily tasks. Instead, his condition would gradually deteriorate as his muscles grew progressively weaker.
"Obviously it was a traumatic and completely life-changing thing that was happening to our family," Burcaw says. "But that night my mom and dad made a very conscious choice to approach the disease positively rather than allowing it to overcome them and ruin the happy life they had imagined for our family. I think that choice really affected my mental outlook and how I've handled things throughout my life. It's not easy sometimes, but you always have a choice about how you respond to things."
By most standards, Burcaw is a fairly typical 23-year-old. He likes to hang out with friends, joke around, play video games and go to dinner with his girlfriend, Anna Reinalda. Pretty much the only difference between him and every other guy his age is his body. As doctors predicted, Burcaw's muscles have steadily wasted away over time, making him smaller and smaller. As he describes it, "My disease makes me look like a Tyrannosaurus rex that's trapped in an 8-year-old's body."
Burcaw has to be carried from his bed to his wheelchair each morning and needs assistance getting dressed, bathed and just about every other task. And he's the first to acknowledge that he will probably continue losing mobility, including his ability to speak and breathe on his own. He will likely die of respiratory failure, the same medical issue that most people with SMA succumb to between age 20 and 40. To get a sense of the daily obstacles he faces, check out Burcaw's short Emmy-winning film, "A Will to Survive," about facing death every time he gets a cold.
Turning the tables on a nightmare
Burcaw found the best way to maintain a sense of control was to laugh down his disease. He launched his blog in 2011, and his amusing tales of living in a powered wheelchair — sprinkled with plenty of wisdom about what's really important — seemed to resonate with people everywhere. As the fan emails multiplied, he and his cousin Sarah Burcaw, who also attended Moravian, began to realize something bigger was going on.
"That's when we really started thinking about what these stories meant and how we might be able to help people," he says.
In 2012, the cousins and another college friend, Erinn Malone, launched LAMN in the kitchen of Shane's parents' house to help "people overcome adversity through the use of humor." Shane and Sarah began taking their act on the road, giving funny "positivity" speeches together at schools, organizations and businesses. They raised money for muscular dystrophy research, since SMA is one of several neuromuscular diseases that fall under the muscular dystrophy umbrella. Shane started writing a column for a local newspaper and wrote a memoir called (what else?) "Laughing at My Nightmare." LAMN also recently started a side project called No More Nightmares, which provides costly equipment to people with neuromuscular diseases to help them live better lives. It recently granted $5,000 to the family of a young North Carolina girl with SMA (pictured below) to install a therapy hot tub in her home.
Two-year-old Heidi Hall receives treatment for spinal muscular atrophy in her new therapy pool, courtesy of No More Nightmares. (Photo: Laughing At My Nightmare, Inc)
At the heart of LAMN's message is the idea that everyone has problems. Some might look more daunting than others, but all problems can be equally destructive if they shatter your well-being.
"Some people say that seeing how bad I have it makes them not want to be so negative about the small problems they have, which is not at all what I'm trying to do," Shane says. "Different people have different problems, and whatever is causing you to have stress, you need to figure out how to handle it in the most effective way possible."
Adds Sarah, "It's not like I'm constantly living in this positive world — I still get frustrated and upset sometimes, often about little things. It just makes such a difference to step back and take it slow and say everything is going to be okay."