In the end is a link to a YouTube video including an interview with Jason who broke his neck a month ago. But I start with my own thoughts that I like to share with you.
I think most of us ”normal people” just see the obvious. A wheelchair, a fighter and a smiling person who will never give up. And that he can’t walk today.
But do we really see the toughest part of the consequences of not being able to walk? The tiny things we all take for granted. In one way I think many of us are ”blind and only see the issue of not being able to walk”. We don’t see the consequences of not being able to walk or not being in control of the body.
At least I know that I was ”blind” many years ago. Today I have a son with special needs. I know that I see things today that I didn’t even thought of before I entered this ”immobilized world”. My son can still walk, but he also use a wheelchair now and then. He is almost 18y old. He has extra skeleton on the back, neck and shoulders that locked his joints. He needs help to get dressed, on the toilet, in the shower, picking up things… For him it’s the normal stage. He has been affected with FOP since he was 2,4y old. So we kind of grew in to it.
But imagine to be an independent, strong, flexible person and suddenly become totally dependent on someone else.
To need help get dressed, on the toilet, in the shower. To get out of bed in to the wheelchair. I guess the goals, I can only imagine… is of course being able to walk and ”fly high”. But to be able to take a shower without assistance… To be able to reach so far and high with the arms to both reach for clothes and put them on without assistance. To roll the wheelchair to the fridge and pick whatever you want to eat… without assistance from people you might only known for a couple of minutes.
Imagine that feeling next time you step in to the shower or the toilet and you lock the door to get some privacy.
So many tiny goals on way to reach the main goal. Some of the ”tiny goals” I think… can be so much more important. We healthy people can’t even understand the freedom of reaching some of those goals. To be in a great rehab center makes a difference. To get the right inspiration and support. To handle both the good and the shitty days.
Hejsvejs – Marie