Life

What It's Like To Live With Muscular Dystrophy

by Kat George

Some people have it harder than you. That's just a fact. Things in your life will be hard, but inevitably, things in someone else's life will make the struggles you face look like barely detectable blips on the overall scale of hardship. And some people face their hardships with much more grace and resolve than you face things like, I don't know, that guy from last weekend not texting you back. I'm not trying to make you feel bad, because everything is relative, but it's always good to have some perspective, and, of course, some humor, about whatever situation you're in. Which is where 17-year-old Shane Burcaw, his documentary film about living with muscular dystrophy A Will To Survive , and his spirited girlfriend Anna Reinalda, come in. So this is your uplifting PSA of the day: Shane's resilience, determination, and hope, will give you an entirely different take on life, and hopefully inspire you to be a little better, every day.

Shane told Buzzfeed:

“This video was inspired by a piece I wrote a few years ago shortly after a pretty bad hospital stay. The video recounts the terrifying process of being admitted to the hospital and thinking I was on my way towards death back when I was 17 years old. Obviously, I didn’t die! I attribute my survival through that illness to the positive mindset I had throughout, and also, ya know, like, doctors and medicine and stuff."

“I have learned that living a comfortable, productive, awesome life with SMA requires many, many types of adaptive technologies. From ramps, to vans, to lifts, to computer equipment, I need a lot to live well. I’ve been lucky to always have the items I need, but many people with muscular dystrophy can’t say the same, so I’m working to change that. That’s exactly what No More Nightmares does. With the help of our collective community coming together to support this cause, we can change many lives, not just this year, but for years to come. That sentence had a lot of c- words."

The documentary is designed to raise awareness about muscular dystrophy through his personal journey, in order to raise $40,000 for Shane's non-profit organization, No More Nightmares, which aims to provide relief to other sufferers of MD. You know, just in case you were worried Shane wasn't incredible enough. If you don't know anything about muscular dystrophy and its consequences, now is a good time to inform yourself. Some things you might not have known that you can take away from Shane's documentary:

1. Muscular dystrophy is, tragically, a death sentence

2. Shane was born with MD, and has been in a wheelchair since he was two years old

3. Shane's MD will eventually cause his lungs to stop functioning, and he'll have to be kept alive with machines. He wont be able to communicate with those around him, but he will be completely aware.

4. Pneumonia is a leading cause of death in sufferers of MD

5. Shane's spirit will absolutely move you

Watch poetic documentary of Shane's his powerful, hopeful story below. It's beautifully written (beautifully frank) and shot, and will likely make you sob.

Images: Vimeo