Wednesday, September 22, 2010

The Pratfall

Since this is Charcot Marie Tooth Awareness Month, I thought I might as well dedicate at least one post to contributing something to my fellow sufferers. I'm sure what I'm about to talk about is old hat to anybody out there who has had CMT for any length of time, but it's a topic we all have to deal with.

It regards thickening our skins.

Because part of having Charcot Marie Tooth is living with the reality that we are going to fall down. And sometimes it is going to be in public...and sometimes it is going to be spectacular. (for instance the time I took a tumble in Walmart and sent the three year old cruising down the aisle while sitting in the cart I had been pushing. She loved it). Then comes the part that my fellow CMT sufferers know so well.

The looks.

Most are concerned. Some are shocked. Some are amused. Then they see my braces while I'm struggling to get up and they almost all default to the look of "Oh, that poor man!" Then they look embarrassed, or embarrassed for me, or they simply look away. It's a process I've seen far too many times for comfort. But I know it will most likely happen again. And that's where thickening your skin comes in.

You can't blame people for not knowing how to properly react to a situation that they aren't familiar with. If you do you're just going to end up bitter at the world for not catering to your special disability. And that is going to hurt nobody but you. So you learn that with this disability comes the responsibility to educate, or at least make people feel more comfortable when something like that happens. My usual response after a tumble is to do an immediate assessment of whether or not I'm hurt, and if I'm not I try to laugh it off and put the people around me at ease. In the end, I'm just a guy and I fell down.

Everybody is different though, and they have to find their way to their own answers. I just hope mine have helped somebody out there.

On another note, my week off from writing continues. I think it might be working, as I'm starting to have ideas for stories bubbling up...especially when I wake up at night. I've had one idea that would make a good Tales of Nur story, and even obliquely involve a young Cargill on the Upperways of Khrem. Another that  could be either a Tales of Nur story or a Shades story, and perhaps one that could be just a pure Shades story. Who knows, I might actually throw another short story up in a months time.

But I also have novel work to do, as I have put that off long enough as well. I have started having a few inquiries about a sequel to The Ways of Khrem from a couple of readers, so I need to start plotting in that direction. There are just a lot of ways that novel can go. I already have one possible prologue done and one story started on it. Once I get a clearer idea of where I want to go with it, the progress will pick up. I wrote the first draft of the last one in two months time. It's just a matter of getting a sense of the overall story.


  1. I suppose with some people it really is a look of pity. For those of us who know you, "the look" is not pity. It is "what can I do to help you get up and get moving again?" You are living with a debilitating condition. It sucks, we know you are struggling with it, we feel compassion, but it isn't pity, brother. Trust me on this.

  2. Oddly enough, the looks of pity don't bother me. At least I know those people aren't uncomfortable. The ones that always bother me are the people who look embarrassed, either for me or otherwise, because I know I just created a situation that made them uncomfortable. Then I feel socially awkward.