A Weak Day

It was dark and soaking wet when I awakened yesterday. It was pouring rain, and it was 6:30 am. By 9:00, when it was time to leave to meet our friends to walk with our doggers, the sky was clearing up. There were massive patches of blue sky, and so uplifted by the change in the weather, everyone had a wonderful walk. But not me.

I found it challenging to do the walk, yesterday. Not the hill. The hill is at the beginning, and I went up very slowly, and I started up several minutes before the rest had assembled and started up the trail. It was after about ten minutes of walking. For the rest of our 50-minute walk, I was struggling to keep up.

After our walk, I headed into the village for supplies, and then we came home. We got home at 11:00 and I fed the brood, and then I went to bed and slept almost until 2:00 when it was time to Zoom with Dianne. We found many things to talk about, but my primary concern was planning for the Thanksgiving meal.

Late in the afternoon, I went over to visit Dave, and he has almost the entire living/dining/kitchen area floor down. Ursula’s been helping on her days off from the daycare, and they are progressing at an amazing pace. Dave had hoped to be in by Thanksgiving, but he’s not going to make it. But soon, they’ll be living in their new home.

Today’s plan is to draft a strategy to grow our UK support group, but I’ll also do some yard work because today is likely to be bright and sunny.

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. 

•

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. 

•

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!

Grads

Tuesday was a gorgeous day all day long. Our day began with a forest walk with our friends, and it was wonderful to be out and about in such beautiful weather. And then we came home. I had some ASL studying to do, and then we all had lunch. After lunch I went to see Jennifer, my Nurse Practitioner, to talk to her about my weakness and to get a referral to my asthma doctor.

•

My session with Dr. Shoja was very interesting. We were talking about my response to her use of the word, “neglect.” It hit me very hard when I first heard it, and it lingered in my head. It hurt terribly to hear that word, and I despaired for my childhood self. My word for the emotional isolation in our family was “indifferent.” I felt the Tyrells were very, very aloof and indifferent.

We talked about the power of the word. That one word, ‘neglect,’ crushed me, whereas I’d been u sing the word “indifferent” for decades without any emotional reaction at all. Dr. S. asked me when I first used the word. I couldn’t remember, but I told her that I suspected it began after my college graduation. She asked me what had triggered the realization.

I told her about my horrid high school grad. Dad said that he would come, so I told him where we could meet, and after the ceremony, I went there to meet him. And I waited and waited while all around me were kids with their parents, siblings and friends. And then I had to walk home to him, but when I got home the house was empty and there was no card, no note, nothing.

When it came time to graduate from college, my mother came home for a week from the hospital, and she asked me if I was going to the grad ceremony. I told her obviously not, after what happened at my high school grad, and Dad promised me that they both would come if I went through the ceremony. Dad said he would rent an ambulance to bring Mother to the ceremony. So, I went.

It was a huge ceremony in the gym. There were, I believe, about 700 of us graduating that day, and when we were finished, we were formally led out of the building in an endlessly long line of fresh graduates all in our gowns and mortar boards. All the guests rose immediately as we began our procession out of the building, and they ran around to the exterior side of the building where we were to exit.

I was far back in the procession, so when I emerged into the daylight, the huge crowd of well wishers had parted to create a pathway for we grads to use to move deep into the crowd, and as the grads found their families, they dropped out of line to join them. I, however, wound up alone at the end of the path, on the far side of the crowd. I circled the mass of people looking for them, but they were nowhere to be found, and that’s when I realized I meant nothing to them, that their word was worthless and that’s. I reckon, when the word “indifference’ became my word to describe their distance.

And yet, when, some 25 years later, I hear the word “neglect” used instead. and I sink into a deep period of mourning. Go figure. The power of the word.

•

Today I Zoom with my UK support group, and I’ll do a lot of chilling and a few chores in the yard and garden. I have some plants to get into the ground and out of their pots, and some shite to tote to the organic dump behind the fence. I’ve some ASL to memorize as well. Regina has given me some ASL flash cards.

Marijuana bonsai.

Slugs

Tuesday was slow and easy. We did nothing but perfect our appetite for sloth. However, we did take a morning walk, and we did our daily game of fetch in the afternoon. Otherwise, little was accomplished.

I did however have a great session with Dr. Shoja. I’m so glad I have her in my life and that she welcomes me every month into her mind and soul. But because I had my Zoom appointment with her, I missed this week’s ASL session and that was a disappointment.

The afternoon flew by as I did little, but we both enjoyed our trip to Rollo to play fetch. And then we came home, and I built up the fire because it was such a damp and dark day. And then another night like every other: I had dinner on the chaise watching a movie. Then I went to bed early.

Today has dawned bright and clear. We shall walk with our friends this morning and in the afternoon, I have an appointment with my GP about a referral to my asthma doctor, and to bring her up to speed on the modest improvement in my breathing.

I love this: There’s a Breton folktale that when the Devil saw how much the French loved God for giving them snails, he decided to try his hand at making them, and that is how the world got its slugs. The monsters are everywhere along our trails; they’re coal black or camouflage greens.