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Friday, July 29, 2011

Little things (and not so little things)

So I droned on in the last post. No, you're wrong. I DID drone on. I know, I wrote it, then a few days later I read it. I find it terribly important to proof my posts within 2 weeks of posting. This way I can put can objective eye on the passage followed by putting the cat back in the bag before the whole world reads it. I consider this the absolute summit of procrastination- works for me.
So.... little things, fascinating, that I bet you hadn't thought of:
I don't use my left hand/arm like I used to. That you've gathered, I'm sure. Some obvious deficiencies are obviously obvious. I can't wave to my fans unless I introduce the Miss America wave. If you don't know what that is, ask somebody who does. It's too complicated to explain. I couldn't write well before, cursive is ancient history, printing passable. Now I literally can't write. A sluggishness and tension makes it impossible. It's a good thing my signature is a mere scribble- that skill is lingering on awhile. Another occurrence previously undefined in my knowledge base, is that the fingernails on my left hand grow unchecked. With normal work of the type I've done over the years, my fingernails have remained worn down, only occasionally trimmed in ragged fashion by my teeth. I can't chew the nails on my left because I can't manage to twist my wrist and maintain position of my digits well enough to do so. Maybe I need to enlist in a manicurist.
A bar of soap in the shower. Suddenly, slippery has taken on a whole new meaning. Consequently, my right armpit requires more deodorant than the left. You do the mime and figure it out.
On a more serious note, I need to convey that since I was diagnosed with ALS back in march, I've played the denial card as long as I could. I thought that if I could keep the symptoms under wrap, out of sight, hidden, then they weren't really symptoms. Well, while denial is a wonderful thing, it's usefulness lasts a very short time. On May 22, Amy (my wife whom everyone knows and who will be prominently displayed and credited in Godlike proportions forthwith) put on an epic fundraiser at Luthy Botanical Gardens, and I actually felt guilty that those out to see me didn't find me limping, stuttering or otherwise diminished. I almost didn't feel worthy (that's for another discussion). Now, as I slip (just a little) I am terrified that my symptoms DO show. That I DO limp or walk funny or favor my right side. So far, stuttering hasn't manifested itself, and in my case I find it doing so highly unlikely, since I'm never at a loss for words and very rarely hesitant or undecided. APPEARING screwed up right now trumps BEING screwed up. Now people will feel sorry because I LOOK pitiful. If this admission is a little hard to read, I do not apologise. I warned you way back, warts and all. (No, I don't have warts).
I promise to begin telling of our efforts and successes in dealing with ALS in upcoming posts. There is an upside to this continuing narrative. We have had success with hypnosis. Acupuncture. Energy healing. Conversation. More to come. Soon. Promise.

2 comments:

  1. as I try to somehow understand or at least hope to understand what you are going through I cannot help but to keep putting myself in your position and wonder what I would do(instead of WWJD) it is wwid! I REALLY have no clue except be scared. everyone keeps saying be brave and strong,but I cannot say for sure that any of that would get through to me. I think you are right on that no regular Dr. is going to be any use to you.

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  2. Keep em coming! Wish we could have spent more time together while I was out there but it is what it is! Later bro! Jason

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