March 11, 2013

This blog is in the process of development. I am digging out a picture of myself that is fairly recent, and relatively complimentary. I don’t want to write something that only my mother would be interested in reading. I would like to write about what it’s like to be a quadriplegic wondering “is anybody is out there?”~ Pink Floyd. It’s very easy to feel locked up inside my own head and agonized, at times, over how easy it once was to hop into the car and take off. This blog for example is a reminder of the reliance that I have on the people around me.  It requires my trust and patience, and their trust and patience with me, and all of my “snarkiness”. Tara for example is one of my PCA’s (Personal Care Attendants) who is typing this out as I dictate it, and putting up with my demands. I am a perfectionist at heart, so she’s in for a good time. 

I wonder how many people out there don’t think twice of reaching up to scratch an itch on their shoulder or pick up a phone to make a call. These are things that aren’t thought of twice by most people. How I long to warm up my cold knees with my warm hands, to brush out my long hair myself or to pick my own nose.  Yes, it’s true and I hate to break the news: dignity does morph into varying shapes with this disease. There is dignity to be found for instance even after sitting in ones own excrement, but more on this later.  

At any rate this is it. Let the blogging begin…


One Response to “”

  1. I’m very glad to see you writing again, semi-regularly, even. This is a good first piece; I don’t have any edits I would suggest.

    “Locked up inside my own head” reminds me reminds me of ‘I Have No Mouth, and I Must Scream’, a postapocolyptic short story by Harlan Ellison. Only the title is (potentially) related to your circumstances via free association; the content of the story is surreal, to say the least. I might have an anthology that includes it somewhere…

    Looking forward to more and more… 🙂

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