Myoclonus

Monday started off so beautifully, but then the rains came so I didn’t do any work on the fence.

Instead, I bagged Styrofoam in the shed. I had the doors open and worked for over an hour wearing just a t-shirt and no coat or sweater. It’s just wonderful to be so warm outside. And it was so bright late in the afternoon. I loved it.

As I have every day since moving here, I lit the fire first thing in the morning and now I keep it low — constant but only one piece of wood at a time. And today I had to open the windows it was so warm because the outside temperatures have been so high. Yesterday was 14°; today was 11° but it’s remarkably warm with a fire.

I got rid of seven bulging regular-size garbage bags and one industrial-sized garbage bag of Styrofoam thanks to Jane, a delightful young woman making a living taking Styrofoam to Nanaimo. I was smitten immediately. It’s like she stepped out of a 1940s film. I found her radiantly beautiful without any makeup, just a beautiful soft smile and curly blonde-red hair held back with a folded bandana. This island is full of gentle souls.

And speaking of gentle souls, I have a man crush on Nicholas, another islander who comes twice a year to change the filters in my water system. When I meet these wonderful gentle people, my speech is strong.

And I rested a twice. It’s a new therapeutic strategy. As my time with Drs. Morrison, Ramage and Shoja, the team at the Pacific Voice Clinic, winds down, a lot of practical information has been forthcoming. Last time, the rest strategy was hypothesized as a way to reduce the seizures.

I want to drive to visit friends on Vancouver Island but driving remains risky — not for others, for me! I’ve progressed so well with my seizures, I can pull over if one happens just as I did here last Saturday. When a bad seizure started, I got to Cole and Peter to have it instead of alone in the front yard.

Just as stuttering is a symptom of my C-PTSD, so is having a condition called Myoclonus AKA being myoclonic. I made Dr. S. laugh by saying, when she explained this to me: “Is that like being Masonic?”

It’s important for me to know that my seizures are myoclonic so that I can tell paramedics if someone calls 911 when I seize. It’s important that they know (and believe) that my seizure is not epileptic.

There are two kinds of myoclonic seizures: Positive seizures tend to be more dramatic and are a response to a specific situation or stimulus; negative seizures are milder and triggered by relaxation. (That’s why I feel crappy for the first minute every time I go to bed.)

So now, twice a day, I lie down hoping that by inducing a couple of super mild negative seizes that I won’t have the really awful positive ones.

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Starting on Thursday, we’re supposed to have a week of sunshine. I want to build a garden in front of my studio and that’s when I may get underway.

Four more sleeps till Dwight and my ladies arrive.