When another human being encounters Shane Burcaw for the first time, the natural reaction might be to look past Shane and focus on the high-powered wheelchair that he uses to navigate life. Or, one might be caught looking at Shane’s fragile body, which, at 26 years old, weighs just 73 pounds. Or, one might be guilty of checking out Shane’s sweetheart of a girlfriend and wondering how Shane was so lucky to get a nurse that is so attractive (she’s not his nurse).
It is human nature to be guilty of any of those thoughts or visions, and yet if you are too shortsighted to see past all of that, you miss the best part of Shane Burcaw. The dude has an electric smile and a humorous personality that beams at anyone who will take the time to look at HIM. He’s also more generous and has more wisdom than many people who’ve lived twice as long.
Shane has a rare neuromuscular disorder called Spinal Muscular Atrophy. It’s caused by a loss of specialized nerve cells in the spinal cord and the brainstem. It affects control of muscle movement, which also causes progressive muscle wasting. There is no cure, only treatment. According to doctors and research, death before the age of 20 is frequent.
“Childhood felt natural to me,” Shane said. “I grew up learning about the world and myself from the seat of my chair, rather than walking around like most kids. I’m sure my parents told me about my diagnosis, but the emphasis was always on living a regular life, and on not letting the wheelchair stop me from doing everything kids do…like sports and school…and getting into trouble.”
Shane requires assistance for just about every physical activity, from getting out of bed in the morning to showering and dressing, using the bathroom, eating, and accessing his laptop. Yet he wakes up with a smile every day.
“I’ve never felt like I’m ‘confined’ to my wheelchair,” Shane explained. “I guess in high school I started to examine how my family and I have always used humor to deal with the adversities we face. I’ve always been a pretty happy person, but in high school I also realized that’s because my parents taught me how to effectively cope with any challenges I faced, whether related to my SMA or not. That mindset has totally influenced my worldview, teaching me that negative events only have as much power as we give to them.
“Living with a disability is not a horrible existence that requires me to put on a smile,” Shane continued. “That’s really important for the public to understand. When I do have challenges, like when my wheelchair breaks down, that’s when I have to utilize the cognitive approaches I’ve developed, but in no way is it a challenge for me to wake up happily each day.”
It would be easy to forgive Shane if he did have a chip on his shoulder, or if he was a grumpy Gus and just didn’t engage with people and the world around him. Even though his attitude and his worldview have continued to evolve (in a positive way) as he’s matured and become accomplished in a number of areas, it’s something all can take a lesson from.
“I think it’s really easy to get bogged down by inconsequential problems of everyday life,” Shane said. “It’s natural to get frustrated by the circumstances and the events of life, but it takes some practice to consciously let go of these annoyances and to refocus our minds to more positive places. When something upsets me, I allow myself to experience the negative emotion, but I don’t let it overtake me and create future negatives by brooding on it for longer than necessary.”