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.

Thursday, December 29, 2022

Two Big Clinic Meetings Today

This film has been getting rave reviews. I look forward to seeing it.

Wednesday was slow and gentle. Our morning walk was excellent because it was so sunny and mild. I read, and had a second walk with Sheba in the afternoon, and did very little clinic work in the day. In the evening, I watched a really weird. Here’s a description from the NYT: “an exuberant swirl of genre anarchy [that defies] the laws of probability, plausibility and coherence. This movie’s plot is as full of twists and kinks as the pot of noodles that appears in an early scene. Spoiling it would be impossible. Summarizing it would take forever.” I loved it!!!

After seeing the film, I did a lot of clinic work so that I am prepared for today’s two meetings. Nancy has told me that the contract includes training me to maintain the campaign social media presence on three platforms. In total, there are to be about 10 posts per week across the three platforms. That’s 10 units of communication—posts are short—that must get approval before release. And it’s that approval part that slows things down. I will have balls in the air. Many balls in the air, and a lot more from me in terms of volunteer time.

I’m meeting with Carol today on Zoom to discuss how we will function as a team. I work pretty much full-on part time for two clients—the Foundation and the campaign—handling communication tasks. I am part of the Communications/Community Relations/Fundraising Committee. Carol functions effectively largely as a consultant. She’s our most knowledgeable board member about social medial and our community. She’s the executive director of our local arts council. And Don is our fundraising advisor.

He's a busy man and been very ill of late, so we rarely see Don. But we’re not doing a fundraising campaign yet, so he’s been part of decisions via Zoom and email with Dyan. Dyan led us; I supported her by think tanking strategies with her and executing her decision. And now she’s gone. She’s president now. Carol, I hope will be a partner to me. 

We have to redesign our website and I already have a huge job. I can’t take on too much more. I need her to proof all I do and share responsibility for department planning. That’s my hope. I’m sure she’ll, partner with me on the planning for the website re-design. Today’s discussion will be a significant one. We have to choose a chairman and that’s more work if it’s me. There’s a lot of reporting to the board.

This afternoon, I have a big ad session with Nancy. I’ve a busy clinic day today. But thanks to all the planning of the past many months that I’ve been working with them, we’ve begun operations ‘under a new management,’ at full speed. We’ve issued our first newsletter, soon we’ll have a new website and a tool, the newsletter, to provoke visits to it, and we’ve launches a pretty significant social media presence. The first newsletter and our new social media initiative both began this month. There was no communications department until I came on board. The online campaign was begun earlier but was a bust. Nancy and I reinvented it and now we have hired the consultant.

And I’m so proud to be able to say that. We’ve done a lot and I volunteered because the clinic never told me anything about our two doctors leaving—one of them mine. They didn’t tell me that they hired locums anything at all. That’s now changed.

The state of Pinecone Park is absolutely appalling. The snow decimated the ferns and there’s forest dropping, like a thick blanket of death, everywhere. I’ll have to find my Zen come Spring in order to bring order and calmness and beauty back to my tiny park. The extreme cold may have killed my pump in the fountain. I’ll know soon, when I test it.

Wednesday, December 28, 2022

Slow Days

Monday night was incredible. We had biblical rain. The house was noisy from the sound of rain pounding down on my metal roof. I love going to bed with that sound. We haven’t really had much rain at all since Spring 2022. Summer was long, hot and dry, and Autumn was almost devoid of rain except for one huge storm—the one that took out our communications cable—and then the recent snowstorm.

It's expected to be a very wet and mild week, but today has dawned with a clear sky. It’s errie out there, we’ve bright blue sky but fog lingering in the forest giving me a view of giant trees in a milky blue haze. It’s beautiful. My walk this morning with Her Highness and our friends will be a fun one because it is so beautifully mild.

Tuesday was a day of heavy clinic work. I got the Christmas letter to our members ready to send out to our members, and I got a very good start on all the ads I must do for the campaign. It felt good to get the work done. The ads I’ll finish with Nancy tomorrow afternoon. Today will be gentle. I got all the work done for the clinic that I can do without Nancy’s help, so today I’ll read and putter around the house.

I am late posting today because I kept myself busy until 2:00 with clinic stuff. 

Tuesday, December 27, 2022

4 Seizures

I walked dogs yesterday morning with Di. It was a pleasant surprise to get a morning email proposing that we walk together, and there were lots and lots of people on the trails. Everyone was out enjoying the incredibly balmy and sunny weather (13°)! Once back home, I did a thorough cleaning of the house. I had the energy and the desire, and I loved, once I was done, reading with Guido in a lovely tidy cozy home.

In the evening I watched Aftersun, a film that I really enjoyed. It’s my kind of movie. There’s no violence or sex, and very, very little happens. I liked this movie the way I like John Cage’s music. It’s different and hypnotizing. The direction is unique.  One scene I loved happens at an outdoor restaurant. They are in Turkey, the father and his daughter (11), who lives mostly with her mother; the parents are separated. Father and daughter are eating when a tourist photographer comes by and sells them a polaroid. The photographer snaps a photo of them and then the scene plays out in dialogue, while we watch a close up of the polaroid slowly developing into a picture of the people speaking. Magic.

Today I must do clinic work. I’ve a lot of ads to create and then place in several different medical journals and websites. The ads are part of our campaign to find doctors.

Nancy has hired a social media consultant. She is taking our campaign to Instagram and Linked In and vastly changing our Facebook account.  Once she’s done, she’s going to train me to maintain our presence on social media. Most of my work now, is for Nancy and the campaign. For the Foundation I maintain the mailing list, do the newsletter (4 per year), write policy, and now I have to file all my electronic files into our online filing cabinet, and I must follow specific titling instructions for all the work I do. Still, that’s a fraction of all I do for the campaign.

I was wrong to have the problems I did with Nancy. It was all entirely in my head. I’ve become very comfortable with what Nancy is doing, even though it’s difficult to reconcile what she does with Foundation policies. I’ve learned not to care. I just do what Nancy and Dyan ask, as best I can, and I’ve stopped trying to centralize/co-ordinate communications between the campaign and the Foundation.

On Christmas night I did not want to go to Dona’s. She was the first to invite me and she did repeatedly, and I adore her and Erik, but I declined as politely as I could. Then Dan and Steve invited me to their house, and I agreed to go because I’m so comfortable with them. I have never been to Dona’s or spent and evening with her and Eric, so I accepted Dan’s invitation. Then, Kris and Steve invited me to their place, and of course, I said I couldn’t.

I had a good time at Dan’s and Steve’s. I really like them, but I did not want to be there. I basically never want to leave the house. I really only like being with people here at home. The thought of going to Toronto or LA terrifies me. Getting into an airplane would be torturous for me. To be honest, I hope I am never ever again in a plane. That’s not to say I won’t. I wish I didn’t fear the idea of traveling, but I do. It is truly frightening to consider. 

I had four seizures on Christmas day. Everything like that, every aspect of life with symptoms, makes me ask Why? Why is this happening? And there is never an answer. I’ve learned a considerable bit about my FND self from watching movies on Netflix, Prime and Kanopy—most of which I have never heard of. 

What I’ve learned is that sudden sounds, violence, scenes about family members being loving, these things make me react and can even cause seizures. I’ve tried so very hard to understand my condition, but I barely know anything. My behaviors make me have total conviction in every aspect of my diagnostic history with Dr. Shoja. It’s very clear to me that my past has greatly scarred my soul. Some people say or think that I should move on. That is clearly never going to happen, but I have thought hard about why. I’ve concluded that either growing up without a parental bond is severely traumatic, or I am very weak, or both possibilities coexist in my psyche. It may be, too, that I should not be expected to move on. I should be expected to live my best life no matter what adversities come my way. I must adapt, and I feel I have. I passed the test I took to be able to say that: I volunteered at the clinic.

I, who can often only barely speak or am mute, and the communications officer. I passed.