An Asshole Calls

The extraordinary (and horny) Tragopan temminicki pheasant. 

I was high all day Wednesday because CAYA was extremely grateful for the revised instruction sheets that I did for them. I can’t fix myself, but I can do things to make things easier for other people who are using the same devices as me. It’s the same with STAMMA. My work with them is teaching them about late-onset stutterers (LOSs). It’s a new category of client for them; an email from me helped them decide to include LOSs in their mandate. They have embraced the challenge, and now we’re going to ramp up our efforts to spread word of our group to advocacy groups serving people with various diseases that rob people of speech (ALS, Parkinson’s, brain injuries, etc.).

Tuesday was foggy all day, but there was no rain, and it was quite mild. When we went for our afternoon romp in Rollo Park, the fog thinned, then disappeared, and the sun came out We were welcomed by 10 dogs and their masters in the park. The sunshine was a magnet, getting people outdoors. Wednesday morning, we had a downpour, and so our walk was short and much of the day was spent reading and doing domestic chores. But I felt great all day, still high from the thrill of practical design and writing work for CAYA.

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The phone rang. That very rarely happens at Pinecone Park. All my friends know not to call, but to write. I ran to answer it. It was some guy from Roger’s calling. He introduced himself and asked, “How are you today?” I couldn’t answer. All I could do was make short sounds.

“Hello. Are you there Chris?”  

“Mm. Uh. Mm. Mm. Mm,” etcetera.

With great effort, I say, “No.” Then, a few beats later, “Talk.” Then I repeat “No. Talk.”

“Okay then,” he says, “How about I call you back tomorrow?”

“No….. No. Talk. Me.”

“Okay, how about I give you my number and you call me.”

I was so pissed. He was not catching on at all that I have a disability. All he’s focused on is his commission or his quota or whatever. His needs made him deaf to my situation.

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Today: Another day like every other. Domestic chores, dog walks and reading. This is my life.

CAYA Instruction Sheets

Tuesday was thrilling. I got homework from both STAMMA and CAYA. I've become a resource for both organisations and I'm both flattered and thrilled because I LOVE designing graphics and doing technical writing. I'm sure I've vastly improved their instruction sheet. Doing this. was like taking great drugs and having an all-day high. These sheets serve to introduce one of my devices.

 

A Cold House

Well, I learned something about my cats this morning. They choose me and our home over freedom.

Through the night, I felt my bedroom was cold, and then, when I got up this morning at 5:00 am, I found the back door wide open. I immediately panicked, but both of my beloved feline family members were still here. Thank God. It would have been a dreadful day today, had either of them gone missing.

Monday was a wet, wet, wet day. Still, Her Highness and I went for our morning walk with our friends in the early morning. All the snow is gone—and thank God for that. What a relief. As I walked, I loved being outside, but at the same time, I could hardly wait to get home to the fire and a new book. Plus, I had my delicious Thai shrimp soup for lunch. I made it on Sunday, and I’ll be making another batch soon.

Today, I have things to do. At 9:30 this morning, I Zoom with STAMMA as we discuss the organizations relationship with late onset stutterers. I am their go-to person on that subject. And then, at 11:00, I have another Zoom session with CAYA to discuss their GoTalk Fit device and to get info so that I can write instructions for the device because I found theirs to be lacking.

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The ’distraction’ principle I learned about in a podcast by Dr. Cath Gregory, a speech pathologist and lecturer, from the University of Technology, Sydney, Australia. It was miraculously good advice. My speech is more fluent and comfortable when I use her technique when I am talking. 

I now can’t speak at all unless I allow my arms to shake. If I want to sit still, I can’t speak. The constant change in my condition is one of the worst parts of having it. I am constantly adapting and it’s exhausting sometimes.

I’m looking forward to the house being warm again, and getting to read and relax after my morning meetings. Meanwhile, the rain falls.

Memories

 saturday

Saturday was one very slow day. It was foggy all day, but there was no rain. All the snow is slowly disappearing, but Sheba was sill ill inclined to walk, so our walks were short. And all I did was read and putter. But I had a lovely Facetime with David, who’s still not over the joys of his visit at Christmas.

The worst thing about yesterday was discovering that many of my raspberry canes are destroyed and my fence around my edible garden is broken because several huge branches, one of which is so big I can’t life it, fell onto my garden and fence. Come the next sunny day, I’ll have to take the chain saw to the branches and tote them to the backyard, behind the fence.

 

sunday

There is nothing in the forecast but rain. However, I when I go out for wood, every time I do, I marvel at the beauty of the outdoors. It smells good, it feels good; I love being inside by the fire, but when it’s warm-ish and not raising, it’s a wonderful comfortable Winter we get. I can’t imagine a better place to be in Canada, for a person in my condition.

As I’ve written before, I keep thinking back through this new lens of understanding. For example: Out of nowhere, a thought comes into my head. I think, “I never got any presents.” It came to mind as further evidence of the neglect. And then I thought, wait a minute, there was the polar bear, the speed boat, and the artifacts. And immediately, comes the realization, they were all from other people, not my custodians. 

I’m overwhelmed and shocked by what I’ve come to understand about myself due to having a nervous breakdown. Plus, the narrative of cause has shocked me. 

I’ve referred to my life since mid-October as post second coming. Something happened, like a shock wave, and now I have worse symptoms, plus new physical ones that were horrid. I think of the second coming as an aftershock of my breakdown. And I know it ain’t over. This is a journey. and I am not the navigator.

Another example of a recalled memory: I remember being a kid of 7 or 8 and on the ferry to one of the Gulf Islands or Vancouver Island. I was standing on something to allow me to better see the view, and the boat sounded its horn. And I almost went overboard. Thereafter, I would not get out of the car until after the horn went, and that always angered Don.

Since my breakdown, I am toxically reactive to sound. That’s why I sought the silence of rural Gabriola, and why sudden edits, in film, into loud sound makes me grossly overreact physically. That memory tells me my issues have always been there, my breakdown just amplified the reaction.

Something rather wonderful happened.

Alerted by a local FND Facebook group, I listened to a podcast of a very eloquent speech therapist who was advocating for a change in government policies to benefit chronically disabled people with FND. Her concern is for people needing care as well as a residence. The moderator was a physician. 

She described various subgroups of the FND family. Her groupings concern the nature of the experience at the rood of the FND diagnosis. I was a perfect example of one group, and she said something I already know: I’m not going to get better. But when you hear someone else say it, especially an experienced voice, it’s shocking, and it hurts.

But …

She also spoke about ‘diversion’ as a way for people like me (speech impaired) to give a boost to fluency. She’s used marbles, beads, and finger exercises to accomplish divergence with her patients. She has her patients sort the marbles and to tell her about anything at all. I’d they’d be fluent.

So, I tried it, and it worked. But again, it’s odd. But when I’m struggling, and that’s been happening a lot lately, I’m going to use finger exercises. I touch my little finger with my thumb on one hand, and then I do the same thing on the other. Then I’ll touch three fingers with my thumb on one hand, and then so the same on the other. And while I do that, I speak, not perfectly, mut more comfortably and quickly.

Whatever works.

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Last night I watched Conversations with my Gardiner on Kanopy. When the film opens, we see a road as some credits, barely visible in white, happen. It’s the golden hour and tall grass sways outside the fence of a farmer’s field. The light is misty and glows. There are trees and my heart is beating. I am hooked and there’s still credits rolling.

The story unfolds in rural France. The Gardner and his family go to Nice and walk along Promenade des Anglais. A film about two men finding friendship in each other, but in a paid master-servant relationship at the same time It’s lovely. It’s all dialogue, that’s quick and witty, and I loved it.

I spent just over a year in Nice, and I’d usually stay in Nice, but also, in a small village just north of Nice. And my friend Beth invited me to stay with her in her friend, Lynn’s house in Gordes, with a car, as I remember, and a pool. My friends and I rented a house in Autoir for a few weeks. These visits to France are when I feel that God loves me most. How could I not love this film?

I’m Not Who I Thought I Was

Oh, the wonder of a hot shower on a morning when the house is cool. I stopped feeding the fire overnight and I am not a fan of the cool mornings at Pinecone Park. The shower brings me to life, and yesterday morning I had to get underway early. We left for our walk at 8:15 so that we could walk, and then get to the optometrist’s in time for my appointment. But Sheba was not having it; she wouldn’t walk, so we went off to my appointment.

On the way to the optometrist’s, we passed two cars that had run off the road and into a deep ditch—the same ditch in which, a couple of years back, I found the woman who’s had a heart attack. One of them was almost on its side, and the other one, with a damaged wheel, had just happened, and a young father was helping his three daughters out of the car. They must have been terrified. I didn’t stop to help. I saw no point as I could not speak to them and have no cell phone. However, the car driving behind me stopped to offer assistance.

I came home to read and watch the snow melt. Every hour or so, a big load of snow fell off the trees and onto the metal roof on my house. It scared all the pets, every time.

I watched Oppenheimer in the evening. As with novels, I have trouble remembering who’s who. But I was thoroughly engaged, and the story is sensational. Oppenheimer is a tragic figure. Much is made of Oppenheimer’s wife; she pushes him to fight his opponents. Truman gives Oppenheimer a moral way out of his burden of guilt. He chides O. for being solipsistic. “It’s not about you,” he says, to O., “I pushed the trigger.” (Something like that.)

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It's so odd.

It was my inability to watch movies that made me sit down and blog what became an epiphany for me. Since then, I have watched movies in total calm. So far, when I’ve felt emotion it’s entirely manageable. I’m 98% better as far as watching movies is concerned. I’m extremely happy about that. I like to read in the day and watch in the evenings.

On the other hand, my speech and my physical symptoms are flaring. My arms are out of control when I try to speak, and my speech is crap. On one occasion, I was able to speak more easily by holding my hand tight around my throat. Part of my problem with speaking, is that when I try to speak, my neck muscles tighten. Putting my hands on them lessened their impact on my speech.

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When I was in college, I met Sue. I remember her vividly, but not how it came to be that we met—there were 25,000 students on campus—nor, how I came to go to dinner there one night where I met her father, Dr. B. I went for dinner often, not to see Sue, to see her father, because he had been seconded by the surgical department at VGH, to lead an inaugural ethics committee, and he was writing a code of ethics regarding DNA testing.

DNA testing created a new specialty of surgery: transplantation of organs. Donor testing of relatives for transplant patients was opening up family secrets in a surprisingly high number of cases. It was ethical for Dr. B. to tell me his stories, as long as the patient names were withheld. His stories were evidence in his introductory paper that came with each code booklet.

I once wanted to go into medicine. I took preparatory classes, but I realized that I was far, far too sensitive and too emotional for the job. However, all my life, reading medical stories and about medical research still fascinates me. I was a very eager listener to Dr. B., and I loved the ethical discussions we had.

Siblings were finding out they weren’t genetically related to each other; fathers were finding out they weren’t fathers. The hospital staff found themselves with a moral dilemma, that’s why Dr. B. had his job. It was a very complicated issue, and it was all fascinating for me. I always arrived with questions. And I did a lot of thinking about how those people felt—the people who’s DNA proved they weren’t genetically not who they thought they were.

I’ve been thinking about them because I’m currently not who I thought I was. I’m carrying on, I’ve arranged to go out for dinner with Kris, Steve and Nancy next week. But I am at a point where I cannot really participate comfortably with people. If things don’t get better, I’m going to have to have chats with people beside my computer and type my thoughts. I’m a reasonably fast typist.