Monday, January 31, 2022

Dr. Shoja Day

I did not want to get up on Sunday. I wanted to stay in bed, perhaps all day, but the cats were determined to get my hands into the feed bag. So, the day began reluctantly. I fed Fred, Ethel and Sheba, lit a nice big fire, had some toast and went back to bed.

My second coming went no better. I took Her Highness for a short walk because it was raining, and I came home to neither read nor study; I wanted to rot on the couch by the fire and be lulled by the telly. 

I was on the go all day Saturday. I even lit a fire in the studio and cleaned up the space, as well as all the cleaning and cooking. And last night, Ali and Peter were here for five hours. I was exhausted when I went to bed. But my experience bodes well for Dianne’s and DR’s coming visit. I had a really good time with my guests.

I had three mild, mild seizures last night. I’d forewarned them and so I could relax as they burned away and then passed. I’ll warn Di and DR about them too, but they and my speech were not a problem at all. In fact, the brief periods of fluency and being able to speak in my Rand voice was very good news.

At 3:30, the sky lightened; I felt better after spending the entire day on my back, short of two short walks with Her Highness. I had energy for absolutely nothing.

Todd called in the early evening, but I had to cut it short because speaking was extremely hard. Saturday night for probably ten sentences, I was completely fluent. Last night, with Todd, it was impossible. I want to live without always thinking about my speech. I’m constantly thinking about it.

As I walked Her Highness today, I would think of sentences that I could sign, and practice the signs as I walked. I used to tap my throat and shake my head “no,” to indicate that I couldn’t speak, now I sign, “I don’t speak.” I’ve shown friends how fluent I become when I sign. This is nothing short of miraculous for me.

I’m patient, and I’ll keep working on it. I did absolutely nothing all day yesterday. Nada. Today begins with Dr. Shoja. Then we walk. This afternoon, I chat with Michelle, so I won’t be back to my online course until tomorrow.

Right after I post this, I’ll be talking with Dr. Shoja. This is the first time since 2016 that I’m scared to see her. I’m kind of afraid of what she’s going to tell me about my behavior last week. Also, I’m kind of concerned about what she’s going to say when I tell her about movies and television.

Dianne and DR are coming for a couple of nights. Our plan was to watch a movie one night and to play a game on the next. I’ve decided we can’t do that, but I haven’t told her yet. I can once I’ve talked about why with Dr. Shoja. I get pretty spazzy watching the box. It’s my arms. I react physically to the tension and imagery that are theatrical essentials. I’m not comfortable being seen in that condition.

This is another part of my life with FND since December, like my worsened speech. I’m pretty good with the mute and pause buttons, but there are a lot of sudden surprises in movies, amplified often with loud sounds. It sometimes makes me have seizures.

Thinking of my future made me sad, and still sometimes does, but I still believe learning ASL is going to save my semi-sanity. I’m looking forward to seeing Michelle today. It’s going to be quite a day for me.

And then, this Thursday, I meet my six FND friends in the UK on Zoom. I plan on showing them my new party trick—fluency by signing.

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