Tuesday, December 14, 2004

Crater Lake

I tried to say "Get your Crater Lake hat" and my tongue did not handle the transition from the R sound to the L sound well. It slurred. I tried it on the sly several more times, and the same thing happened. I can say it clearly if I speak s-l-o-w-l-y. This is not the only example, I have noticed my tongue get thick amid other verbal gymnastics.

I am really upset that my tongue is not responding properly and my speech is clumsier. I was not expecting this yet. I expected to rot from the extremities inward. I expected that even if I were in a wheelchair, still I could talk. Taking my voice away, when I have small children around, is the most cruel blow. I know it's not gone yet, but now it has been encroached on. I'm furious.

It may be that I'll go into another long plateau and my speech will be fine for a long time. I feel that my limbs have had two long plateaus since diagnosis, and for example the left legs seems unchanged. I even think of it as the reliable one, despite it being slow and weak, because it is so steady. Maybe the new wobble in my walk is from the problems moving into my hips. I don't know, but the legs seem the same.

Being a daddy in a wheelchair was one thing I was prepared to accept, but being a daddy who can't talk is awful. I love my kids so much. My daughter is about to turn two, and when she gets taken out of her crib she likes being wrapped in blankets, what she calls a "bunny hole." She lay on the bed with us this morning. I spoke to her. She spoke to me. I want to talk with her. I want to talk with my kids. Please don't take my power of speech away!

I also have this impression that my breathing has taken a step backward. I don't find myself out of breath, but I find myself breathing very shallowly. And my self-measured inhale volume is still only back to 4500 mL, whereas as few months ago it was at 5100.

Today I heard from a young woman, the mother of twins, who has some strange symptoms and will be going in for her first MRI tomorrow. It happened by chance that while I was skipping from blog to blog, I encountered her test post, just a stub that said test. I must have posted a comment like "You are go at throttle up." She got curious about my moniker, since she is going through some brain hell herself. She emailed me that she has been reading the blog and finds it "both terrifying and comforting."

I'll say. I encouraged her to blog her own experience, and if she emails me with the results of the MRI, I'll let you know.

This week my lovely wife and I rented and watched "Pieces of April", and we also rented, and I watched, "The Battle of Algiers," made in 1966 but basically about Iraq. They're both well worth watching.
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