Saturday, November 19, 2022

The Quitter

Hi Dyan,

I’ve had the most wonderful experience, working with you and the board. I am very grateful to you and the board for welcoming me into the fold. It’s been an amazing and very rewarding experience.

I am sorry, therefore, to have reached the conclusion that I must rescind my decision to become part of the board of directors. I sincerely hope that you find another volunteer to continue working with you all to improve and expand the Foundation’s communications and community engagement. 

You have access to my unfinished work—the newsletter and decision note draft. And please remember to write to Annette Lorek. Thank you for a profoundly meaningful experience of working with you all. I wish I felt capable of continuing, but I’m not.  

Best, best wishes for your tenure as chair.


The past while has been a shit show of symptoms. If I’m having seizures, I’m doing something wrong. 

To function well, I must feel safe. That’s what I understand from living with FND for six years. The clinic ceased to feel like a safe place, so I had to make a very difficult and uncomfortable decision. I sent Dyan the email above this morning. It’s done. It’s much safer to read books. And even though I am convinced this was the right thing to do, I will miss the thrill of working with the clinic and feeling like a vital part of the community.

This morning I went going on the big community dog walk and now I’m spending the day reading and eating and napping. I want to let my body feel the release of clinic tension. I am really sad about letting go of that work, but I definitely feel it’s the right thing to do.

It feels so good to have this slow day to myself. I loved having Paula here, but with all the clinic tension plus her visit, all I want today is to be horizontal. Or upright with Bruno.

Last night I had dinner at Ali’s and Peter’s and it was a really, really lovely evening. They are soon off to Mexico for two months. I am slightly jealous, but super happy for them. 

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