There’s a wonderful site on the internet called The Mighty. Its shares all kinds of wonderful, sometimes heartbreaking and empowering stories from members of the disability community. There was a post today by a guy named Chris, a fellow MDA Transitions blogger, that nearly knocked the wind out of me while I was reading it.
Chris wasn’t diagnosed at a young age like me with MD and his symptoms have started to show up gradually as a young man. So not only is he having to wade through the waters of living with a disability, he’s having to do it as a person who was born with a full level of strength.
I’ve mentioned falling in a lot of my posts. How it makes me feel, etc. I can’t even count how many times I’ve fallen, like Chris, and had people stare at me just like the little boy did in his post. In high school, I would fall in the halls and people would just walk around me, pretending they didn’t see me, like I was just another obstacle on their way to class. It still happens today. I’m still not sure which is worse: people staring or people pretending like you don’t even exist.
On that note, Chris mentioned something else in his post that really really struck me. With the increasing onset of MD symptoms, he said he’s had to accept that he can no longer be anonymous. Anonymous…if you would have asked me growing up the one thing that I could be if I wanted to, it would have been anonymous…invisible. I wanted people to stop staring at me (still do sometimes). I wanted people to stop noticing me and my limp. Stop noticing my skinny, bony frame. I just wanted to blend in like everyone else and I did whatever I could to try and accomplish that. Bought all the latest clothes, wore makeup, tried to straighten and flatten my beautiful curly hair as much as I could so it wouldn’t make me stand out more. I looked down when I walked, not just to look for obstacles I might trip over, but so maybe no one would see me. Maybe I would just become a unified blob with my surroundings if no one could see my face. I think a lot of people worry that they might become invisible in the world but if I could have been granted a superpower, it would have been to be invisible.
Then, as I got older, I started to embrace my differences more and more (after all, we all have our own unique things that make us the amazing beings we are). I grew to love my curly hair. I liked having opinions that were different than other people. I liked feeling like a rebel because I had a pimp limp and an extremely rare neurological condition. I didn’t mind that people were staring at me so much anymore. I have days know when I don’t even think about or worry if people are staring as I slowly pull myself out of a chair.
I still struggle with falling, can’t deny that. I still feel like it’s the end of the world and utterly humiliated when it happens sometimes. But I’m also extremely proud and happy that I no longer feel like I want to be invisible. Some days I kind of want to hide out, but I rarely ever want to shrink into the background anymore. I’m happy to shout to the world “I’m here!” in whatever way I can. I’m happy to be a unique individual with strong opinions on things and awesome curly hair. I’m not quite at the point of saying I love my pimp limp but I think I’ll get there someday. It might be one fall at a time…but I’ll get there.
Chris has his own blog at WordPress and it’s extremely thoughtful and well-written. Check it out here.