Shane Burcaw has never been able to pee by himself, so he has long relied on his family and friends to help him out when nature calls. At this point, he and his trusty team have it down to a science. Gone is the awkwardness that used to arise when he’d have to enlist a new buddy—or worse, a cute girl—to pull down his pants and hoist him on to the toilet.
“I got over it years ago,” Burcaw says, “because it’s just a dick. It’s no big deal. And that’s the way we get through the whole process: by laughing at it.”
In his 21 years, Burcaw has had a lot to laugh at. Since age 3, the Bethlehem, Pennsylvania resident has lived with a disease called Spinal Muscular Atrophy Type II, which has caused his muscles to progressively deteriorate. He has sat in a wheelchair almost his entire life, unable to eat, brush his teeth, or take a nap without assistance. He’s a shade over 60 pounds, gets the bulk of his nutrition from feeding tubes while he sleeps, and might not live to see his 30th birthday.
Yet an uncertain future doesn’t faze him in the least. “I don’t want to live my life saying I’m going to die in 5 years,” he says, “because how much fun would that be?”
Yes, he’s at risk, he says. And yes, he’s getting weaker every day. But somewhere along the line, Burcaw realized that being afraid wasn’t going to solve any of his problems. “So instead I try to move on, focus on more positive stuff, and think about all the reasons my life is awesome.”
That’s the gist behind Laughing at My Nightmare, the popular blog Burcaw launched in 2011. He sought an outlet to share his funny stories—bathroom mishaps included—and was shocked when his Tumblr followers started growing from the hundreds to the hundred thousands.
“At first it was surreal, seeing how these stories affected people,” Burcaw says. But he quickly realized why his blog resonated with others: “Yes, I have shit in my life, but so does everyone else. It’s about the idea that no matter what your problems are, humor helps.”
So he launched a non-profit by the same name, sending proceeds from the events he throws—5K races, open-mike nights, and even a cross-country speaking tour—to muscular dystrophy research. Last month he won a regional Emmy for an infomercial about the organization, and now he’s turning his blog into a memoir, due next year via Macmillan. (But first comes graduating from Moravian College in the spring, and spending more time with his girlfriend, Shannon.)
In other words, he’s making every moment count, doing his damndest to beat every long-term prediction his doctors throw at him.
“I’m going to live as hard as I can.”
Click here to meet the rest of our Everyday Heroes.
