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.