Saturday, December 31, 2022

Website Inventory Finished; Rough Times

 Thursday got off to a great, great start. Carol is a fellow member of the Foundation’s Communications, Community Relations and Fundraising Committee, we met on Zoom yesterday morning and in her I found the perfect partner. She is willing to proof my work and we think similarly on all issues. This is the greatest news; I have an ally and partner in Carol.

After our meeting, Sheba and I went for a forest walk. It was a dull day but there was no rain. It was 5° when we walked. Home for lunch and then some reading and tidying before Nancy arrived at 3:00 to place some campaign ads in medical journals and job boards with me. Working with Nancy, now that I understand things, is a joy. I’m so glad.

Friday dawned damp. There was no rain, and there was even lots of blue sky, but the earth is super saturated with water and the air, as thick with moisture. We went for a long morning walk with our friends and during the walk, I had two seizures. They hit like lightning, sudden and shocking. I came home rather exhausted. That’s 5 this week, and speech is very tough on me. What I’m going through, used to frighten me. 

This is an item on my list of experiential insights (EI). Over the past four years, I’ve built a list of EIs about my condition. One goes like this: My FND experience is that I have waves of intensity moving on two rhythms: I’ll have very long periods of time feeling great, and then a few difficult months in rough territory. And then there is the day-to-day rhythm. And I carry on. I don’t freak out and that makes the rough times far less onerous.

 I finished the inventory of the content of our existing clinic website. It took me 7 hours of concentrated work to produce what will become a valuable tool as we develop a plan for the new website. 

 I’m feeling inclined to ask Carol to be chair of our committee. I get along very well with her. It’s an appealing idea because I think it would lessen my stress. I’d be more of a support person, it would mean less work for me, and I’d have to talk less. 

I watched two really, really great movies. I watched Everything, Everywhere, all at Once and Triangle of Sadness. They are both examples of genius moviemaking. EEaaO stunned me. I was stupefied. I was an amazing, amazing experience. ToS is a mixture of the Kardashians and Lord of the Flies. There were times in ToS that I was out-of-control, laughing. 

This morning, it is sunny as I write this post. And it’s predicted to be another nice day tomorrow, the day of our weekly large community dog walk. Sheba has a sore foot, so I’ll be watching her for a while to see how she’s doing and limiting our time walking.

I have no in-person meetings scheduled for the next month. There will be a meeting of the Communications, Community relations & Fundraising Committee that is not yet set, but I can handle that. But I’m glad to be on my own for a while. It will give me a chance to heal and become calm so that, hopefully, my speaking gets easier.















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