Thursday, January 4, 2024

Deep Thoughts from a "Good Man"

“You, Sir, are a good man with a great heart.” His voice cracked as he said that to me. He was thanking me for stopping on the road to care for his dog.

As Sheba and I drove to meet our friends to walk yesterday morning, I came across his dog running along North Road—the busiest road on our island. The dog clearly wanted help, but it was afraid of me, a stranger. Just as I thought I was going to be able to make contact with the dog. I heard a car pulling onto a gravel driveway just behind me. When I turned, I saw a big burly and very, very handsome man coming towards me.

“That’s Luca,” he said. Then he spoke to me of my heart.

As soon as Luca saw and heard the man, her ears went back and she ran to him, and when I got back into the car, I felt as good as Luca did. I was elated that the pooch and his bestie were reunited. Luca had jumped out of the car when the man took his daughter to school.

The remainder of the day was entirely uneventful, and that’s just how I like my days. Things are changing. Now, when I speak or try to speak, I shake like mad. It’s as though I have a palsy, but the minute I stop trying to speak, or I stop speaking, my shaking stops. The shaking includes terrific tension; my neck becomes very sore, very quickly, and I find myself trying to stabilize my head and soothe my neck muscles. Obviously, I’m trying to avoid speech for a while.

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Deep thoughts.

Perhaps it is because, at heart, I’m a writer. My friend Beth and I have a lot in common, and one thing is that we began our relationship with words as children. We were diarists. And here, on this blog, my diarizing continues. 

For me, the word ‘writer,’ is a genus name, but we tent to use species names of things in common language. The species name is the clarifier. I was a technical writer; that’s my species. I loved being a technical writer. It has no style, but it is very heavy on right or wrong. And when you’re writing for hire, you must learn the nomenclature of the client. Technical writers develop large vocabularies and learn a lot of things outside their own fields of interest. I passionately loved technical writing. I loved being paid to learn. My clients were diverse; they made my career a fascinating ride.

When FND came on, Dr. Shoja helped me put words to my symptoms; she gave me medical vocabulary and understanding. She also provided a psychiatric vocabulary. For example, in this series of sessions that I’m having with her now, she referred to me as a “neuropsychiatric patient.” It was a word that was new to me, and I have to say, it really hit me hard. And then a weird thing happened. She told me that neglect is worse, for a developing child, than physical or sexual abuse. I knew that, but hearing it hit hard as well.

Two things I knew shocked me. It made me think. Why would things I knew, shock me? I came up with two thoughts: hearing her say these words made me realize how fucked-up I am psychologically/neurologically; her words become part of my medical record. When I’m in the hospital, I’m a neuropsychiatric patient. It feels like extra weight on the boulder of my symptoms.

I’ve been told that every aspect of my fucked-upness is due to neglect. (Please note the beauty of the word “neglect.” I used to “blame” the Tyrells, but by using the word, “neglect,” as the cause of my condition, the Tyrells disappear. Using this word excites me. I can account for my difference without using their name. I like that because I have always tried to protect them. I saw no value in hating them because I didn’t know their story. You must do your research before reaching a conclusion. Using “neglect” feels clean.

All these terms … I suppose it’s good that I know them. These words, these psychiatric diagnoses get me free life-long psychiatric care—and with a good psychiatrist who’s much younger than me. I’m set for life!

I look back at my life and now understand a lot of my behaviour differently. Things line up; I see so many things as the manifestation of a neglected child, teen and young adult. I see that my fucked-upness has always been part of me. I understand the onset of my symptoms in medical terms from Dr. Shoja; and the word “neglect.” But regardless of how I am labelled, I understand my experience now: I live with the consequences of neglect. Neglect caused me to have a sudden-onset crisis involving my psychiatric and neurological functioning. My symptoms are the legacy of my crisis. 

My mental health began to decay in my late forties when I first realized I was neglected. My mind was suddenly flooded one evening with memories, images like papers floating past me on the surface of water in which I am drowning. I saw how solitary and lonely I was as a child. These were long supressed memories. But I passed. I got on. I continued to enjoy my life until the crisis hit in 2106.

The memories made me think. The crisis made me think more, a lot more, and with a coach. If my mind was a factory, my crisis seemed to me like an engineer found a disengaged cable that linked my soul to my heart and to my brain. I started feeling the pain of those memories. That’s what brought on my crisis.

All this fucked-upness is, as I said, due to neglect. Isn’t that weird! Think about it: I’ve been severely affected by something that didn’t happen to me. Anyway, my condition comes from my life experience. I like to think that my resilience in the face of so many life challenges that I’ve had, my perpetually happy state, and my eternal optimism, these aspects of my character come from within. They come from me, and that makes me proud of myself.

I get to die understanding my story. I’d rather my story ended with a buff Daddy Warbucks instead of seizures and poor speech. But thankfully, I’ve lessened the severity of my symptoms by moving here in the forest with my blessed pets.















Wednesday, January 3, 2024

A Helluva Day

My session with Dr. S. was EXHAUSTING. I felt like I’d run a marathon when it was over.  My speech was shite, my arms were jerking back and forth, my wrists were rotating back and forth, my fingers were clenched tight against my palms. My head was bobbing like mad and my muscles, across my back, in my neck, and in my arms and shoulders were screaming with pain. But she was patient, calming and so, so helpful. All my infuriating jerking makes sense to her, and she tells me why.

My big takeaway was learning not to fight my jerking, twitching and bobbing. She said the more I try to control my physical symptoms, the longer they will last. She advised me to let them happen. This is why I value her guidance.  Letting my body shaking happen is now a management strategy for me; it’s the opposite of what I had been doing.

When we were finished, I had no energy for anything, so I thought I’d watch some TV. Five minutes into the show, I fell asleep, and I slept for over an hour. I had lunch and then returned to the chaise, and I tried to watch the show again, but I fell asleep again, and when I awoke, it was time to take Her Highness to the park to play fetch.

In the evening, I went to Steve and Dan’s place for dinner.  Jay was there too, and we had a great evening together. It’s always interesting visiting Dan and Steve. They have a home in Hawaii, and they travel constantly to visit far away and exotic places. It was seriously challenging for me for the first hour. I basically just used gestures and single words for the first hour, and very slowly, my speech improved as the night progressed.

Today, we’ll walk with our friends, and then I have an appointment at Life Labs for some tests, and then I have the entire afternoon and evening to myself. Hooray!  





A ship built of bone and hair executed by an inmate
of a prisoner of war camp.










Tuesday, January 2, 2024

Wesley and Norman

 I Zoom with Dr. Shoja today. I’m prepared and looking forward to talking with her. This might be my last session, it might not. I shall see how things go.

Yesterday was like every other day. I walked Her Highness and later played fetch with her, and I spent the rest of the day puttering around the house doing errands and some reading. In the evening I watched Chelsea Detective that I really enjoy. It’s Vera-like. I love it.

I wish I had more to write about, but I think my new medication has me more at ease, mentally, so I’m not pondering my existence much. All I am doing is puttering and reading and I like these slow days by the fire.

Sadly, my friend Wes died on Sunday. He was ready having suffered a stroke last Summer. He was a highly talented actor and a wonderful, warm human being. I was really sad to hear of his passing. My friend Bruce was particularly close to him. And our friend, Norman, is also a source of sad news. He is in his final stages of life. Bruce, Norman and I have known each other since 1950. We were all kids in the same neighbourhood.

Tonight, Jay and I go to Steve and Dan’s for dinner. 















My first instrument. And I belonged to the Debating Club. Nerd?

Monday, January 1, 2024

HAPPY NEW YEAR!!!


Fucking hell, listen to that high note towards the end (the word ‘divine’), and listen to the clarity of his consonants. He has been taught well. This is Malakai Bayoh singing with Aled Jones. What a voice—until puberty!

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I’ve little on which to report. My days pass easily, but my time is filled with the minutiae of life. Saturday night was a spectacular night of laughter and stories amongst friends. Kris and Steve hosted us, and I told everyone at an appropriate time of all Kris has done for me. The assembled included my dear friend Stacy and her man friend, Bryce, two delightful neighbours neighbours of Kris and Steve, Karen and Gavin, who are terrific people, Steve’s brother, Fraser, who’s an absolute gas, and Nancy, my constant companion when I see Kris and Steve or Stacy. They are all great, wonderful people. I am very, very lucky to know them all.

And speaking of terrific people, Sunday night was terrific fun because I went to Woodfire restaurant (the best one on the island) with Jay, Eoin and François, my gay posse. Again, laughs ruled. We had a blast, and our evening ended early so I was in bed and sound asleep before midnight.

Today has dawned bright and sunny, and the mild temperatures of our El Niño Winter continue. I am very happy to have no social engagements today. Yesterday, I had two long naps, and that is unusual for me. I think it is from all the socializing with David and then the dinner at Kris and Steve’s. I’ve had quite a few seizures of late as well, and they exhaust me. I look forward to reading on the chaise later, but first there’s the dog walk with friends and then I go to Jay’s to fetch some unused pillows he bought by mistake long ago.











We have these little tree frogs in abundance here.