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.

Sunday, January 30, 2022

My Tide May Be Out

Cooking the garlic tart, preparing the Brussel sprout dish (cutting all the leaves carefully off 20 sprouts), and tidying and cleaning up took up my entire day on Saturday. But I wasn’t rushed or anxious. I love baking and I felt good all day about how my chocolate tart would be received. When I was done at 3:00 after getting started at 5:00 am, I was pooped, so I got into the hot tub and really enjoyed relaxing in its engulfing warmth. 

You may have noticed the change of name on my blog. With my new understanding of neurological disorder, and with so much of my posts about my condition and symptoms, I thought it was time to have an apt title for this blog.

And speaking of my condition, I really enjoyed my day yesterday because it felt so normal, cooking and then hosting very nice people for dinner. I’m comfortable with the nature of my condition but realizing who my community was came as quite a shock.

Until last week, I had a condition I’d never heard of. Now I know much, much more about the history of neurological illness, that I’m a part of a community of weirdos, that it has a great variety of symptoms and that no one recovers.   

Breaking News: Last night was startling! We were talking and I was using my ‘key word’ method of speaking and then, suddenly, I started talking completely fluently. Not only that, but I could do quite a bit of talking using my Rand voice. Suddenly, it was back.

I don’t know what this means. The symptoms of neurological disorders, I now know, come in and ebb like the tide, and sometimes there are flood tides and very, very low ones. Maybe my tide is going out. I will, perhaps, know more today if I speak to someone or chat on a video call. But last night was thrilling.

Saturday, January 29, 2022

Party Tonight

Lovely neighbour Nancy talked to the animal control people and they now know the woman complainant was a liar. She told the officers obscene things she claimed I had said to her, but Nancy and the officer knew that was a lie. I had emailed saying I was disfluent, and Nancy confirmed it, so they knew that the woman was lying about that. Then they were willing to see her other complaints as lies also. The case is closed.

I wrote to everyone to whom I sent my crazy post and apologised, including to Dr. Shoja. We will have an interesting talk on Monday.

Friday was cold but sunny. The dog walk with my friends was very fresh but dry; we all enjoyed being outside together. Then I came home to make a chocolate tart for Ali and Peter who are coming for dinner and to play scrabble tonight.

I’m pleased with my tart. The mirror finish on top looks particularly smart. I added chocolate leaves I made by painting chocolate onto Salal leaves from the yard, and some little sprinkles of gold. It’s one very rich cake; ganache on the bottom and a thick glaze on top. I’m going to take two big slices of leftover tart to Nancy to thank her for helping me with the animal control office.  

I believe I understand what went wrong a few days ago. I have written it all out for Dr. Shoja’s consideration on Monday morning. I’ll report on all I’ve learned once I have talked with her. But one thing that I wrote in my mad rant, was accurate: Just like the delay of a couple of years between me learning I was adopted and what it meant, that happened with FND as well. Everything went south when I realized was a fucking mess FND makes of me and so many others. 

Finding out that all those lovely odd balls in Oliver Sacks books are my people, and also watching Unrest has brought me a deeper understanding of what it is to have FND. But it has also shocked me to think of myself as “one of them.”

Have you heard of the movie Unrest? It’s about chronic fatigue syndrome, (also called myalgic encephalomyelitis)and a lot of the movie dealt with FND because ME-CFS is, apparently, a subgroup of people with FND who have the same symptoms—extreme fatigue. And there are an awful lot of them. Quite a bit of it of the movie was depressing; it was also extremely interesting. It made me feel like I got off lucky. The people in this film were bedridden and could not look after themselves. 

Lots of people with a neurological condition have speech problems, and a lot of them are stay-at-home people, a lot have sensory sensitivity, and some have seizures. I have very manageable symptoms compared to them—some good news.

I’ve been cooking all morning. I hope to do some studying later today, or reading.  

Here’s an interesting problem for learners of ASL. If you see a sign that you don’t know, you must write down the sign, including motion, position, palm, and finger positions, and facial expression. They you must ask someone who signs what it means. I use Michelle. You can learn a sign for a word very easily; there are dictionaries. But you can’t look up a sign for a word.