Tuesday, August 29, 2023

My Devices and Self-Esteem

Monday began early. I had to water all the gardens before leaving for Nanaimo and my last physio appointment. Just as I finished the watering, Julien and Marlane woke up, so I made them breakfast and we had a nice morning chat over toast and eggs. As they packed up their things, I encouraged Sheba to come outside, and she followed me.

Once outside, she surprised me. She walked to her usual place on the boulevard to go to the bathroom. Finally! And I was thrilled to see some return of life in her. I lifted her onto the bed in the back of the van and Marlane and Julien and I got our stuff, got into the van, and we headed for Mad Rona’s where they were meeting with a friend over coffee.

I hugged Marlane with all the love I had in me, and I told her that I loved her. I cannot remember ever being so thoroughly smitten with someone so quickly. I’ve loved Julien since I met him, so I’m not surprised he found a partner equally as engaging, warm and open as he is. I had an incredible visit with them and hope they return. But they live in Rotterdam, so ….

We didn’t wait long for the ferry, got off and roared to Walmart for some supplies, and then to Cory. It was a great visit with him. And then we went to the ferry for the ride home. There were several people on the boat that I knew, so the 20-minute trip flew by. And then it was off to Pinecone Park and an evening of relaxation. As we arrived, there was a short burst of rain. Hooray!

On the way home, I did my entire monologue (I think) without mistakes. I check it against the script today. Regardless, what I did in my head today was good enough to pass. 

I was so glad to be home. I could barely talk all day and I had an unusually long and rough seizure in the morning. I couldn’t even talk with Julien and Marlane. I said individual words and a lot of gesture. I also got great use of my boogie board for communicating at the physio, and at Walmart. I love the boogie board.

Then, a spa, dinner, and The Great British Baking Show. I was so, so glad to be home and able to rest, and today I have no demands at all on my plate—not even watering. Yay!

The highlight of the day was my boogie board. It impresses people, just as I expected it would. One person clearly loved it. He said he wanted one and asked me where I got it. I’m supposed to get some training on Friday. I can hardly wait. 

On the 20th of September, I am going to the eye surgeon’s office for the first time to have cataract surgery on both eyes. I believe they are doing them both in one surgery. I’ve been through the process before, and it was with the same team. I’ll have two appointments and then the surgery. I’ll have the boogie board, and I know that I’ll be using it.

But I will be using one of the devices I’m learning this week. I will record and bank, an introduction that explains my speech, seizures, and asks that as many questions as possible be answerable with ‘yes’ or ‘no.’ I’ll also record another that adds to the above that I would prefer that all correspondence between us be by email. And for my ferry trip to the first appointment, I’ll record for the ticket staff person at the ferry terminal, a request to buy credit on my frequent travel card.

I’ve been functioning well for seven years; I can get on without them. When I struggle to speak, I jiggle. My face and head contort slightly, my arms can make movements that embarrass me, and it’s a struggle for me. Plus, being with people and talking is when I have most of my seizures. These devices enable me to present very, very differently. I can make and maintain eye contact with the person I am speaking with. I rarely make eye contact with strangers; it just doesn’t happen when I am speaking. I can’t change that, everything is moving.

But no more.

I often feel kind of grotesque having seizures in public—especially long ones or jerky ones. I had two when I was with Julien, and one of them was a long one. It feels so Jekely-Hydish to me. They come on abruptly. These devices allow me to present, making eye contact and without shaking, grimacing, jerking, etc., and feeling like I’m wearing a tuxedo and exuding confidence.

My devices delight people.

I will be living in two very different worlds. I’ll live my life on Gabriola as I have been, but ‘out there,’ in the world, I will be living through devices because out there, I am mute.

Usually, I present with a written notes and go to appointments with a pad and pencil, but I can say short things and I can use gesture and single words. With my doctor here, I do quite well with speech. I’ve seen her several times, and always in the same space. But I write it at home, and then my appointment begins with me staring at the side of her head. Small things, but interruptions to ‘normal’ communication. There’s a kind of disconnect. 

I’ve been feeling burdened by this speech problem. I had rather poor self-esteem before losing my fluency. I feel as I did when I had bad acne. There have been other consequences to my life from FND, as well. I can’t attend many events because I don’t want to have a seizure. Here, I go to events with friends.

The devices will improve my self-esteem and convert a frequent uncomfortable exchange into a very positive experience—a source of pride in adaptation.

My motional fulfillment comes from my friendships. But a huge minority part of me desperately wants a life of isolation. This is why I live on an island and stay here every day that I can. This is my compromise, and it is working.

Sometimes when I write this stuff, I think I am out of my mind to admit it. Perhaps all this will help me get an insanity plea one day. Like if I met Putin and had a gun.

Do I hear an amen?

Last night there was thunder a one-minute downpour, and a short shower. I can’t remember ever feeling so happy about rain. Then, through the night came much more rain. Hooray! 

I recently opened novel #26 of a thirty-edition series. I thought to myself, The end is coming,’ And right away, like a movie on a screen, in my mind’s eye, I saw myself as a young lad, comfortable in the large grey chair, sturdy, like an elephant, and my feet on the matching ottoman, reading about Frank and Joe Harding, The Hardy Boys. That’s when I fell in love with reading.

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