#headdesk

I had a conversation about my rehabilitative therapy earlier this week and articulated something that makes me very embarrassed and sad: the only reason I know I have made any progress is that other people have told me I have improved. Though my body has transformed in the last seven years, it doesn’t feel any different to me. My body feels the same as it always has. The therapy I have done has not made a difference to the way my disability presents internally. I think this just might be a matter of accepting that things are what they are, but it was very sobering and embarrassing to express it.

I certainly feel better as a result of yoga and physical therapy, but – as far as the actual disability is concerned – my body feels the same as it always has. The same is true of my disability itself: I don’t feel that my body is disabled. It feels normal to me. The only time I ever feel my cerebral palsy in my body is when I am about to fall, I actually fall, I struggle in some other way with balance, or I come up against something I can’t manage, like stairs that have no banister or a chair that is too high for me to sit on.

A couple of weeks ago, I went out with some friends and the only available table at the restaurant had chairs that were difficult for me. I sat and tried not to complain, but I could feel my disability in my body very strongly at that point; I used all my energy and strength in my body to stay as balanced as I could, but felt as though I were tipping over. I asked if we could move to a table that had lower chairs; we did and my body relaxed (understandably). The frustrating thing is that I’d wanted to be a good sport and not complain; I knew I wasn’t in a life-threatening situation, but I did feel in my body that I had to concentrate and balance any way that I possibly could so that I wouldn’t fall. This isn’t to say that my physical therapy hasn’t helped me get better. It certainly has. I just don’t feel any different internally and, truthfully, I don’t think I ever will. It’s difficult to realize and to accept it, but it just is what it is.

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About Norah

writer. aspiring editor.
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7 Responses to #headdesk

  1. nicolanoo says:

    I feel the same way when sitting on high chairs. I try avoid it as much as possible.

    • Norah says:

      Me too. The frustrating thing is that it feels like it shouldn’t be an issue. It feels like it’s so easy for other people. But I just have a lot of trouble with it and it’s uncomfortable and embarrassing. People say, ‘You can do it,’ but I don’t trust my body enough and I really feel my CP in my body when I try, even if I do my best to be as safe as possible. It’s frustrating. Will watch your video now to feel a bit better.

  2. Alinka says:

    Oh, high chairs… they can be difficult… I just avoid them and don’t care. As for the therapy and the changes it produces… I have started working on my CP body cca two years ago (and I am much older than you are). I can do many things now I was not able to do earlier, but my head still works against me in many cases… so in spite of the fact I can do certain things now, my head and experience sometimes prevent me from doing my new thing…. and I find THAT really frustrating! When it comes to feeling the change: I hear you on not noticing any – however, you should remember that it is a slow process and you live through that process, so it is hard to notice the slow change. This is actually something that makes my therapists angry sometimes: they keep asking if I feel any change and I keep answering: “NO” snd they think I should me more motivated or aware of the things, or express more gratitude for the fact that I walk faster, but I do not feel the change – too busy living a normal life…. Maybe filming a video with you walking once a year might help you see the change and enjoy it properly? It has done the trick for me. 🙂 Now I see! 🙂

    • Norah says:

      Just because you don’t feel a change doesn’t mean you’re not motivated, and it’s the worst feeling when people expect you to be grateful for things you don’t want to be grateful for or don’t feel like you should be.

      That’s a good idea. I should make a video. I think that would definitely help. Thank you!

  3. Alinka says:

    You are welcome – but mind you, do not make the video too often… once or twice a year is enough – the progress is usually just slow. However, that is the case with almost all progress of this kind. When you learn to play a musical instrument, it does not sound too different from day to day. Yet when you listen to two recordings say a year apart, you will be able to hear a difference. There is nothing special about that I think. Moreover, do you really think we would be able to deal with a sudden change after all these years with CP? I am not so sure. I would like that to happen, but I do not think it would be a lot easier to work through than taking it slowly step by step. Anyway, take care! 🙂

    • Norah says:

      Do you have a blog? You should start one. Even better, you should write a book. In fact, I would like to commission one from you. As an editor, I think you have a story to tell and you should tell it. I think it would be wonderful. You’ve really humbled me.

      • Alinka says:

        Just about to start a blog… I have been planning this for some time and I do want to start one during this summer when there is more time – less teaching (nobody wants to study in July and August). I do write my stories on Facebook – sometimes in English – to practice writing and see some kind of reaction from the people. You are welcome to befriend me, before that blog becomes real. 🙂

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