Living life with a visible disability is strange. To the outside world you look different. You ARE different. The majority of people that see you think that your life is hard, or sad, or fundamentally different than yours. But on the inside, from your perspective, you are just the same as everyone. For me, because I was born with my disability, most days I don’t even remember that I have one. I am not saying that because I am strong, or because I have the courage to face my adversity head on. I am saying that because it is true. Because I have never, and will never know anything different, and I cannot see myself from the outside, only from the inside. And inside, I am not disabled.
I don’t even have any concept of what I look like to other people. When I see videos of myself, I am often shocked to see that I exhibit some of the same spastic movements as my other friends with CP. In 2007, I appeared in a video about the Hurricane Crutch. The crutches I use to get around, when I am not in my chair. (Awesome crutches if you are looking!) It’s not the best example but take a look to see me in action. You will see me at about the 2:10 marker, walking. When this video came out, I was shocked at what I looked like because in my head, when I walk. I look like everyone else, only I hold a pair of crutches. What shocked me more, and continues to shock me, is the visible spasticity in my face when I am talking. I never knew it was there. Because, in my head. It isn't. And nobody had ever pointed it out to me. (Thank goodness!)
The other day, I was lying on the couch and a cruise commercial came on. I have always wanted to take a cruise. I always imagined myself trying that rock wall or that little surfing pool laughing in my bikini like the woman in the commercial. I see myself rolling the dice at the casino, hitting it big and jumping up and down with Tom as we hug. And then I snap back to reality and realize that not only would I never wear a bikini while rock climbing or attempting to surf and I probably would never hit it big in a casino. I can’t even attempt to surf, or jump up and down, and that rock wall? Doable, with lots of help, lots of grunting and even more sweating. My friend Bryan went on a cruise. He said he had to take elevators just to get from one side of the ship to the other because there were random stairs everywhere and that the elevator took forever because so many people were using it. He said the on ship excursions we not accessible to him.
There goes that fantasy.
The same thing happens to me every single day. When I talk babies with my friends and realize that I will never be able to walk and carry my child at the same time, never even be able to pick them up unless I am sitting down. When I imagine myself having this grand feast waiting for Tom when he gets home and remember that I can’t get the casserole out of the oven without help. When I think about playing with the dog outside in the snow and realize that I can’t even get into my backyard because I can’t walk in the snow.
Every single day, I am at one time or another completely shocked to discover that I am, in fact, disabled. And even though there are days when that discovery is like falling face first in the snow (sometimes it is, literally, falling face first in the snow); I think it’s a blessing. Some people can’t forget they are disabled, and when you can’t forget, you never try.
There are so many things I might never have tried if I didn’t forget: rock climbing, biking, driving, 4 wheeling, tree climbing, sewing, cooking, camping in the mountains, rollerblading, and ice skating. Some were gigantic failures, others were wonderful experiences and there are even more things I have left to try.
I credit my wonderful family, both the one I was born into and the family I gained along my journey, because they forget too, and that has made all the difference.
So for every one of you that has left me stranded in a car, house or store, tried to walk away with my crutches or tried to take the stairs while I was in my chair. Thanks for seeing the inside and I love you.