June 5, 2013 at 10:03 AM ET
A few weeks ago, Shane Burcaw, his brother and best friend piled into a car to start a week-long road trip that would take them from Bethlehem, Pa., to Orlando, Fla.
But this wasn’t just any summertime whistle-stop tour. For Burcaw, 21, who has a fatal disease known as spinal muscular atrophy, it was the first time ever he’d traveled without his parents. And Burcaw’s plans were far nobler than those of most college students hitting the road: At each destination he delivered a speech to readers of his blog, Laughing At My Nightmare, about how he manages to enjoy life despite the incredible odds against him.
Burcaw was diagnosed with spinal muscular atrophy as an infant and has used a wheelchair since the age of two. The genetic disease destroys the nerves controlling muscle movement and makes it difficult or impossible to crawl, walk, and maintain control of the head and neck, according to Families of SMA, a non-profit research and advocacy organization.
There are four types of SMA, each with varying life expectancies; in cases like Burcaw’s, patients typically do not live beyond adolescence or young adulthood.
This grim prognosis, however, does not stop Burcaw from finding moments to laugh in each day. He admires comedians like Zach Galifianakis, Louis CK, and Demetri Martin, and their influence is clear when Burcaw cracks a wry or absurdist joke or uses sarcastic wit to make life’s injustices a little less powerful.
“People say it’s cliché that a positive attitude or laughter is the best medicine,” Burcaw told TODAY.com, “but until you live through something like this and discover your attitude does have a big effect on the quality of your life, it’s not cliché.”
That philosophy has won him thousands of devoted fans — he says his blog has attracted more than 400,000 followers — and it was them he wanted to reach on the road trip. He arranged four meet-ups, in Kissimmee, Fla., Savannah, Ga., Charlotte, N.C., and Washington, D.C.
At each location, he spoke to anywhere between five and 20 people, sharing a message of hope that grave circumstances don’t have to crush one’s will to thrive. Burcaw even gave the speech at the "Happiest Place on Earth," where he addressed more than two dozen Disney World employees, recounting humorous anecdotes about the awkwardness of his everyday life.
Though Burcaw needs help with the tasks that most take for granted — bathing, brushing his teeth, shifting sleeping positions at night — he is never unoccupied.
In addition to blogging, Burcaw is a senior in college, where he studies English. He recently founded a non-profit called Laughing at My Nightmare, Inc., which he uses to promote awareness about SMA and raise money for research. And then there’s the documentary film that an independent production crew is creating about Burcaw’s life. They accompanied him on the road trip and are trying to raise $50,000 via an Indiegogo campaign in order to complete the film.
“[The trip] gave me an incredible amount of confidence in my ability to do this full-time someday,” Burcaw said of the speaking engagements.
It also created memories he won’t soon forget. In Washington, D.C., the hotel Burcaw and his friends stayed at learned that it was his 21st birthday, and sent up two bottles of champagne as well as an invitation to order anything they wanted from room service. He had a brief celebration the previous evening with a shot of rum at midnight, but the hotel’s generosity made the day a special occasion that any 21-year-old would envy.
Burcaw’s life is not without its disappointing and heartbreaking moments. He knows the reality of his disease well: Though he would like to get married and have children, which other SMA patients have done, his body grows weaker every year and one day the illness will claim it.
“That sucks no matter how I look at it,” he said. “I accept that it’s happening. I try not to think about it too much – when I do it bums me out. I choose to not let it last for too long.”
Burcaw knows his attitude might be different had his parents not encouraged him to develop a sense of humor at an early age. They also didn’t want the disease to provide an excuse to withdraw from life. When Burcaw wanted to play floor hockey as a fifth grader, his parents let him sit in the goal, wearing a mask, with a stick taped to his wheelchair. He was good at slapping away the pucks.
Burcaw is also grateful that his parents, who provide for his expensive care through health insurance, are dedicated caretakers. When they can’t be present, Burcaw calls on a network of friends and family who can tend to his needs and with whom he can share a full-throated laugh.
That group includes Shannon O’Connor, a 16-year-old from Port St. Lucie, Fla., who began reading Burcaw’s blog a year after her mother, a single parent, died following a protracted battle with cancer. The two formally met when Burcaw put out a call for help with his non-profit and O’Connor volunteered. They are so close now that she joined the road trip in Florida and they call each other best friends.
O’Connor said Burcaw’s posts gave her comfort. “He reminds me so much of [my mother],” she said, describing his positive nature. “It was great to find that there’s more people in the world like her.”
Burcaw hopes that he’s able to touch people’s lives with his optimism.
“The way I look at it is my message is not, ‘Hey I can be happy and so can you,” he said. “All I’m doing is saying, ‘This is my life, this is how I handle it.’ If I can give someone a new perspective because of that, that’s awesome.”