Thursday was beautiful. It was sunny and bright, but it has become cold. Our first cold weather of the Winter. Autumn was wonderfully warm. This cold is shocking; I hate it. It often means, however, that we’ll have clear skies. It’s predicted to last only four days.
I wish I’d known about the Telus IP Relay service long ago. It’s really made a difference in my life. I used to save up my calls. I’d make a list, and then I’d ask a friend to come by to make the calls for me. I love the TIPR service. It feels good to be fully adapted to non-verbal living.
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To everyone, I have a speech/seizure problem. What no one sees is the emotional component. My emotions drive all my symptoms. I am what is called “exquisitely” sensitized. I love that. It means ‘extremely,’ but medical people have their own vocabulary. I am walking vulnerability. These extreme emotions are the inside. But … I don’t feel extremely sad or angry, I just feel extreme tension. I have an “I’m going to explode” feeling.
Either my new medication, or my epiphany evening, or both have me feeling much better in my body. I haven’t had a seizure since my epiphany, I’ve watched several movies now, without shaking. I’ve felt in full control of myself and calm through all of them. And I said “thank you” to someone one day. I haven’t been able to do that for almost eight years.
Nothing lasts long with FND. My symptoms vary in intensity, frequency, and length of time. Since I’ve had FND, I sensed improvement at the beginning, but that was because I fell into such a dreadful state. After about a year, I stabilized, and there’ve been ups and downs ever since. But never has there ever been a sense of improvement since that first year. Until now.
I am grateful for this sense of feeling calmer, and I hope it lasts. My speech is still shite. It’s worse than it’s ever been. But like I said: I’m fully adapted.
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I watched Anatomy of a Fall the other night. It won the Golden Globe for best foreign film, and I loved it. I loved the setting: endless sunny skies in the mountains of France, near Grenoble, and snow on the ground. I like murder mysteries, but I don’t feel like this film is one. By the end of the film, you still don’t know how the victim dies. But what a great ride this film is.
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I go on….
People ask me: Why is your speech bad? And I answer: FND. And then there may be more questions about what FND is and why I have it. I have had to make peace with the condition. But I can’t get over all these other words that have come into my world with those three letters.
My epiphany was realizing and accepting that my parents abused me. That’s been extremely hard to say. I have always protected them. I’ve bitched about their distance, but I wouldn’t bad mouth them. I always felt I didn’t know their story. End of story. But now I think differently. Isolating and ignoring a child—an adopted child—is ‘exquisitely’ cruel, regardless of their story. From that came accepting that I was neglected. Neglected is one of the words that is a new burden.
Another word is “neuro-psychiatric.” I only head this word used by Dr. Shoja recently. I thought FND was just a neurological disorder. Now I know differently. The psychiatric part of my condition is why I get unlimited access to Dr. Shoja for free. All the exquisite emotions responses are psychiatric; the physical manifestations are neurological. More words are these: mental illness. It comes free with psychiatric.
So, let ‘s see: neglected, neuro-psychiatric, and mental illness. No wonder I was shaking, seizing and crying a lot. Eight years in April. And I worried about Cancer all my life.
All this has been going on in my head, but people only hear the stutter and see the seizures. I’m glad of that. But I think that’s why my speech is so bad. There’s so much going on in my head. I feel such weight on my soul, but I know that it is good. It is part of the process. I always say, knowledge is power. I thought only of strength when I said it, but the knowledge, the true heartfelt knowledge of my past and the consequences has shattered me.
And I realize all this at age 76. Holy fuck. Mission accomplished.
Onward, with the consequences and adaptations. In Pinecone Park.
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I love that I named my place Pinecone Park. I like the alliteration, and I like the cartoony feel of the name. But it’s wrong. The park is bombarded by Fir cones. However, Fir Park? People would think: Fur Park. I don’t want to sound like I kill animals, so it became Pinecone Park.
I also like that it’s wrong. It speaks to my ignorance of so many things when I came here. Because I have passed a couple of hours a day on forest trails, I have learned a lot about the forest. I’ve been amazed by many things, but most of all, its fragrances. I stop to breath it in sometimes when I am on the trails. Gringo misnamed the cones.
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There’s about 10 cms of dry snow on the ground. My ferns are flattened; my Rhodo is looking like it’s in pain. Our walk will be a cold one this morning, and then I’ll be spending the day close to the fire.
I knew I was in for a cold morning when, through the night, I’d turn over and freeze my face off on the cold, cold pillow. The first thing I did when I got up, was light a roarer of a fire, but I also turned on the baseboard heaters. Tonight, I’ll be bringing wood in so that I can keep the fire going through the night. I hate being cold.
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