I have this friend. I will refer to him as George, because that’s his name. He’s one of my best friends, and one of the funniest and most giving people I know. He would do anything for his friends. The only problem is, he can’t physically move.
George has spinal muscular atrophy. It’s a rare genetic disorder that causes muscles to deteriorate over time. He can’t move. At all. Not even an inch. Because without muscles, moving is impossible (you didn’t know this was going to be a biology lesson, did you?). His dad, also named George and just as funny, has dedicated his life to taking care of him. SMA is known to be a children’s disease, and most of the children don’t live into adulthood. At 31, George is one of the oldest people living with his type of SMA (which obviously makes him the best at it). Turning into an adult happens to everyone, but unfortunately, it makes it almost impossible for George to find a doctor who has the knowledge and experience necessary to treat his various health issues that come along with SMA (most SMA doctors are pediatricians and will not see adults).
Despite his circumstances, George is really good at most things. He’s an artist, a writer, a computer technician, a film director and has seen every movie ever made. Even the really really terrible ones. He does all of these things with his eyes. A laser attached to his computer connects to his eyes, and he’s able to do everything anyone can do on a computer. Except better, because he’s George, and he’s awesome.
Life is hard for George. Because of his declining health and lack of available healthcare, it’s gotten really difficult for him to leave his house, difficult to talk and difficult to breathe. The longer he lives, the more his muscles deteriorate. But that doesn’t stop him from being hilarious and having a really great outlook on life. He’s happy to be alive. He’s happy to have great friends. He’s happy to have a fantastic girlfriend. He’s happy.
I wanted to tell you about George, because sometimes it’s easy to be frustrated with our lives. It’s easy to take our bodies for granted; to be able to walk, to hug someone we love, to go to the bathroom on our own, to yawn, to go to work, to turn our heads when people talk to us and to just be independent in general. We have the bodies we have. Some of us have disabilities and some of us don’t. But none of us are immune. Anything can happen. So, let’s enjoy what we have and keep in mind that tomorrow we may not have it.
Here’s a video of George using the “Eye Gaze” technology and just being generally awesome: