Thursday, September 23, 2010

The Veil

Since this is Charcot Marie Tooth Awareness Week, I've been trying to make a post about it every day. Todays post is going to be about the absolute worst days. The worst of the worst.

These are days where I way ten thousand pounds, and I'm so wiped out it's like there is a veil between me and the rest of the world. All I want to do is sleep, or sit stupidly in a chair and stare at nothing. The world has to make an effort to get through that veil to reach me...and vice versa, but I'm sapped of energy to make the effort. Even driving is a huge effort on my part.

Fortunately, these days don't come often....but they worry me when they do. Or more accurately, they worry me  after they do since I don't have the energy to worry about them at the time. It's not fair to the people who live with me...and it's not fair to me because I'm losing out of valuable time with them too. I think of my grandfather after days like those, and how unresponsive he became in his final years, and I wonder if that was what it was like for him.

 It's just not fair period...but nobody ever promised life to be fair. Sometimes it's best to simply lose that word from your vocabulary, because all it will do is make you miserable.

On another note, I have another book to mail to a reviewer. Let's see if I can do it this time without any wallets left at home and comedic looks of bewilderment while the line waits impatiently behind me. That would be nice.

I wish I had something else to write, but since I'm not actually writing much this week I don't really have much to write about. I need to get back to writing soon. Tomorrow, both kids spend all day at school so that will be a good time to start. It's time to crawl back on that horse...or bicycle....or pogo stick or whatever.


  1. Hi Nathan, Just wanted to let you know that I nominated you for the Creative Blogger Award, you can check out my blog for the details.

  2. Yep- know that place. I also know that it's after the crisis that I worry. In the crisis, choices are easy.

    Afterwards, it's tough to think that maybe one day, I will consider this a good day. That's what scares me :)

    Appreciate all of the good days :)