There is a list I’m pretty sure that every person with a disability keeps. At least, I hope I’m not the only one. It’s a list of what we’ve “lost,” what we miss most, and perhaps as an addendum, what skills/abilities we fear losing in the future. Not real upbeat stuff. I have read a few other blogger’s lists, and I’ve found that
- I tend to just want to copy and paste their lists into this blog, since many of these other writers seem to say exactly (or almost exactly) what I want to say.
- These other writers have found ways to offer these lists without anger or whining or sounding like they are complaining.
When I look at my own list, I think I can boil it down to one thing, one thing that covers all the bases. Essentially, I miss my body. In all its flabby, hairy, pink glory. Of course, I still have my body – I’m not yet a brain in a jar with wires and tubes and bubbling chemicals keeping me alive and connected to the world. But it doesn’t quite work like it used to. I still have all the essential functions working. So far, I can still take care of my body on my own. (One of my biggest fears is someday not being able to.) It’s been called “Aging Plus,” I deal with a lot of infirmities and physical issues that people far older than me deal with. But all of the things I really miss come down to things that I can no longer do because my body won’t do them any more. I miss hopping in the car and going off on an errand or an adventure, or even just for a drive. I miss going for walks, I miss working, I miss (believe it or not) going to the gym, I miss playing my guitar. I miss popping down to the basement (where I think my workshop still lives)(and where I have not been in at least a year) to get something or build/fix something. I don’t travel very much, but I miss just getting on a plane or train without having to be concerned about where the bathroom is or how I’m going to get on and off. I miss being able to go to restaurants or stores or theaters without having to call first to make sure the venue is accessible. The list goes on and on, but you get the gist.
In the end, what I miss most is just going through my day without having to be concerned about access or steps or walking or standing or… again, you get it. And it is definitely a “you don’t know what you’ve got ’til it’s gone,” thing. Just like 99% of the humans walking around today, I never had the least bit of appreciation for the simple fact that I could walk around. Now I work with a physical therapist trying desperately to hold onto and maintain what flexibility and mobility I still have. And, as has been said by others wiser than I, I face the fact that as much as my body might not work, there is the probability that it will get worse, and I have to remember to appreciate the fact that it works at all, and the wonderous things I can still do with it.