Lots more snow fell last night. As soon as it’s brighter outside, I will be dusting off several of my evergreen plants—especially my Rhodos. We’ve about a foot of accumulated snow now.
It was a white Christmas and a cold one! My treat to myself was to keep the fire raging all day, and to enjoy my day of chilling with my besties: Fred, Ethel and Her Highness. I have to admit that it is quite lovely outside, but I’m not keen on cold.
What do Donna, Nancy, Paula, Barbara and Kelly, Regina and Di have in common? They all gave me home baking for Christmas. Sweets are not on my diet. However, I love them—especially the mince and butter tarts. Oh my God. But they must go. I can’t throw gifts—especially food—away, so I’m going to somehow regift them. I’m doing too well on my new regime to eat all this butter and sugar.
At 1:00, the power went off. I just chilled until 3:30 and then I started my generator and discovered that a tree went down a block away, thanks to the Hydro outage website. I was happy to learn that the crew was on site and that I’d have power in time for dinner and evening television.
During the power outage, I tele-called Dwight, and while we were talking, someone knocked loudly on the door of his bedroom where he was talking to me. As soon as I heard the knock on the door, I was gone, overtaken by a seizure. And people wonder … what are your triggers? My answer: What isn’t?
The power was back just before 4:00. The night was like every other night. At one point, I remembered it was Christmas. It’s kind of lovely with snow everywhere, but it keeps me busy cleaning the plastic garage and many of my plants.
This blog is the only place wherein I can communicate. On the Internet, I am fluent except for anything with sound. Here is where I can figure things out; decide what I want to express to friends. There’s no one who speaks English living at Pinecone Park.
It’s countdown to 2022. New Year’s is a celebration of the immediate future. Resolution time.
I’m going into it, not liking who I am when I talk. I look normal when I’m silent, but I become a grotesque with speech. It’s in my head that I’m grotesque. Not Quasimodo grotesque, orally grotesque, with limbic spasm, and seizures. I earned that title. I don’t enjoy being that person. Even though I can ‘get by,’ I don’t like it.
I’ve been pondering ASL. I could communicate comfortably and with complete control of my arms and hands. I could go to parties with an interpreter (hired). Being silent would eliminate my worst symptoms immediately. I’d have power over my condition; it’s positive and rewarding and it’ll keep my mind off my speech.
Learning ASL also feels like I’m giving up hope of improvement in my speech.
I can physically feel fear in my gut when I think about next year. When I think about how I feel, I remember how I felt in my teens when I still felt committed to the Catholic church and realized that I didn’t care for girls. I had sin, I thought; I was an abomination. Guilt and shame took me prisoner. And that’s how I feel now about FND.
I thought this through because three days I’ll be talking to Dr. Shoja, and she’s going to ask me, “So, how are you doing?”
I also reckon I’ll ask her if I can see her once a month for a while as I ponder my options and make my action decisions. 2022 is going to be a year of change. New Year’s isn’t something I want to celebrate this year.
My friend Cathy sent me a very encouraging email about learning sign language. Plus, she gave me some good advice: Finding a friend to learn with me, and getting lots of practice because, she says, if it isn’t used, it’s lost.