Zooming; Neglect

Thursday flew by because I lead my UK FND group. I’d leading next month as well, and John has asked that we and STAMMA do something to expand awareness of our group. He is willing to help, and he’s really a great fellow. So, I’m going to draft my idea for a first step, and see what people think, and then we can get on with executing the plan. 

It would be exciting to do this together, assuming I do the writing for the group, and not the researching contact data of our targets. It’s easier for them to so the research, as they all live in the UK, and that’s where our targets are.

We walked, of course, and I kept busy all day and I can’t, for the life of me, remember anything I did. I frittered the day away. The one interesting thing I did, was to visit Dave in his yurt. He’s been working very hard on his own, doing all the interior work. He hired people and machines to do a lot of the work, but he’s been doing all the interior finishing, laying the floors, installing all the appliances, hanging doors and fitting handles, and innumerable other things. 

Finishing is the longest, slowest part of a new build. Dave is my hero. He’s done a great job. I visit him often. Today, when I went over, he said that I hadn’t been over for a few days and that he missed me. He doesn’t have any friends here, I don’t think, so I get a warm welcome every time I visit. I always have questions, and he loves answering them. He’s learned a hell of a lot over the past year—he had to take a course and pass and exam to earn the right to self-build—and he loves sharing what he’s learned. More than what he does, though, he is a warm, open and happy man. We really get on, and there are always lots of laughs. 

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Beth wrote to me, provoked by my last post. I wrote about my profound experience in response to Dr. Shoja referring to me as neglected. Her brief email revealed that, for her, ‘abuse’ is a more damning word.

I’d realized and accepted that I was abused. That word featured infrequently in my sessions with Dr. Shoja. I accepted it and I ‘understood’ it, but that understanding was more intellectual, and not emotional. Plus, it seems everybody and their dog and PTSD and has suffered abuse. Having my diagnoses, I knew I was abused. 

But when I heard that word, ‘neglect,’ I feel things in my gut every time I write it, hear it, or think of it. That’s what I felt ALL the time, but I called it indifference. But that was my word, and it was only used in the thoughts when I was alone. I never used the word out loud with anyone.

I didn’t choose to have an immediate and visceral response to that word when she first said it. It just happened. It’s a word that is almost only ever used for a child or a pet, and when I heard it, it brought images of my childhood to mind, of particularly painful scenes of my aloneness. I didn’t feel abused, I felt alone all those years, and that lead to me feeling deep pity and sympathy for that child I once was. I’d never done anything like that before, and that changed me. It was a minor epiphany, all triggered by a particular word.

I had another when I heard a CBC announcer introduce something with a reference to Oliver Sacks, whom he called a ‘world famous neurologist.’ As most of my friends know, I fell in love with the man’s writing early in my life. My introduction was his book, The Man Who Mistook His Wife for a Hat. I read everything he wrote. I loved how he viewed his patients. He always and only saw them as persons. He was a magnificent doctor.

And I must have read that he was a neurologist, but I hadn’t read anything by him since the onset of FND, so when I heard that introduction, I suddenly took great pride in being ‘one of his people.’ That book I read, and a subsequent one, An Anthropologist on Mars, described different patients with neurological conditions, all of them much worse than mine. And as strange as each one is, Dr. Sacks revels in the wonders that often come with neurological malfunction.

Ever since these experiences, I am at peace with my condition. I have made my life very small, and it has proven to be very good for me. 

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We’re walking in the wet, wet forest this morning, and then we’ll go into the village for hardware so that I can do some repairs to two doors, and I’ll get some groceries. Today will be an indoor day. Hello ASL!