Yesterday was mighty cold. It was -8° when I went out to start loading in wood with which to keep the fire raging all day.
I read the day away and only took short walks in the neighbourhood with Sheba because it is so cold. She loved running around in the snow, though. And mid-day, the snow plow cleared out street, giving me more confidence about my plan for today.
At five, you might have heard my sigh in Vancouver. The power went out, yet again, just as it did on Christmas day. Instead of dallying, I got up and got my boots on right away to go out and get the generator going, and just as I did up my coat, the power came back on. Oh my God, I was glad.
I have a string of clear Christmas lights on the sill of my big living room window, and I have two clear bottles with long candles in in each one that I add glowing light higher up in the window. The soft glow of light from the window, plus the flickering light of the fire, plus the abundance of thick wool blankets in every surface, make the room very, very welcoming and cosy.
The cats always come down from their aerie in the evening and seeing them curled up on the blanket, soaking up heat from the fire makes the room look even better. Plus, it’s dead silent here—dead silent. And dark as coal. I play music very very quietly. This cocoon is ideal on these long dark nights.
Strangers sometimes politely ask me why my speech is hampered. I tell them I have a neurological disorder and they nod their heads, satisfied with my answer. After almost six years of living with a neurological disorder, and with three years of monthly meetings with a psychiatrist I respect deeply who answered my every question, I still don’t really have much of an understanding of what a neurological disorder is. I do know what my experience is, so I understand my own specific form of FND.
I didn’t know how to explain myself to people for the first five years since FND took over my life. They saw my symptoms. I had no answers for myself or them. I didn’t get my FND diagnosis until five years after the of onset of my symptoms. But now I have that phrase, “neurological disease”—just two words—and my brand new business cards. These tools are like armour for me as I do battle with the overstimulation of the city.
The cards give me courage.
I realized that I have two problems: My speech and my shame. I can’t fix the speech. Tomorrow I get to talk with Dr. Shoja. I’m going to ask her how to stop feeling so ashamed of my speech. I have absolutely no idea of how to fix myself. It makes me afraid of doing anything “out there.”
It’s really cold here this morning. My thermometer says -10°. The good news is that I got into the car. I got two doors working and got it going, but I’m rather dreading the business of catching the ferry and getting to the place where I’m to get my booster shot today. I haven’t left yet and I’m already looking forward to being back home, nice and warm and cozy by the fire.
For the first time, I have a means of introducing myself with a card—my “nice to meet you”/speech explanation card, as I go for my booster where I’ll be interacting with clerks, welcomers, nurses and, perhaps, others.
They cancelled all the Gabriola ferry trips between 6:00 and 11:00 last night. I’m hoping all things are a go this morning. What an effort today will be, all for my booster shot.
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