Last year at this time, I decided to make a change. When you find yourself with an invisible condition, you can keep secret, or you can “come out.” As with being gay. Last year I decided to “come out” as a person with a speech disorder. But coming out for me as a person with high-risk speech disorder voluntarily engaging with strangers.
Until I joined the Foundation, I’d only been with friends. Joining the board was scary, it began with a video interview in which I was quite fluent. I was comfortably at home while speaking on Zoom. At the same time as I was going through a selection process for the board, I sent a script into the monologue competition. And you know the rest of that story. That story dominates this blog right now, as I memorize words.
The monologue is a solitary exercise for months of work, writing it, memorizing the words, and rehearsals. Working with the board became a rather demanding project for me. It’s been difficult for me at times. But I’m doing much better since I turned down chairing the committee, even though I’m effectively chairing it right now rather comfortably.
So here we are now. The point of this story is a wonderful one for me. This blog has been my diary. Once my life was full of activity and illustrated by bazillions of photographs of my adventures. When FND set in, it hit hard. I still vividly remember my first day outside once I’d stabilized. On this day I remember, I was having 15 - 20 seizures a day. I had 2 pairs of dark glasses on to help me with the light, ear plugs in my ears, and lots of clothing to keep me warm and to protect me during falls when I seized.
For years, that was my story, for over 5 challenging years. But when I joined the board, and when my script was accepted, I stopped writing about my speech—except when speech problems are part of the story. My speech and seizures things that are there, like bad hips or knees, but not a concern of my brain. They’ve become hardware problems.
I’m very happy about that. Every minute memorizing is another minute I’m not thinking about my problems.
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Dave is a nice guy. He’s a neighbour. He has a beautiful, friendly golden lab named Wynter. Yesterday morning I was driving by his house, and I saw both he and another neighbour, Tracy, cooing over a very young puppy. I braked. Poppy melts the heart of everyone who has their own. She’s a Doodle like Sheba. I melted in her company.
Then Tracy went home, and I stayed to talk with Dave and pat Poppy who lay in his arms. And I made sure to fuss over beautiful Wynter, too. Dave started telling me the story of how he and his wife had decided on having another dog—and a puppy. Part of that story was to distract them from thinking about their son who died, killed by a drunk driver, on the anniversary of his death.
It made me cry. It makes me cry to write it. Obviously, I empathized. I feel in extremis. That’s why I’m selective about the movies I watch. I realized this walking on a sidewalk, I passed a couple standing in the rain. He had the umbrella; she was standing in the light rain, and he was much taller than her. He had dark hair, and as I passed them, I heard him talking to her in a patronizing and aggressive way, and it made me cry for her. I cannot stand being overstimulated, and my environment, in the city, was constantly overstimulating me, that’s what was causing all the seizures. Hence my moving here.
Having tears because Dave lost his son, I’m glad I feel that. He’s a gem of a human being. He’s going to help me meet a small family of donkeys. How could I not love Dave?
I felt like my heart had been torn open, and a piece of Dave was put in it. I care more for him, and I wondered why. Because he shared, and I felt honoured? Trusted? Because he is carrying pain. It hurts to write that sentence for me. Cliché time, but I do feel his pain. I do.
I’ve always loved animals. Everyone I know who has an animal loves animals, and many friends without animals delight in Sheba’s company. Several people have spoken kindly of me as someone who has a particularly passionate love of animals. Like the empathy I feel for Dave, I feel for all animals. I think in those moments of tears with Dave, I loved him.
When instinctual things like that happen to me, I love that feeling. It links me to behaviour I see and celebrate in animals. I feel the force that creates prides, schools, herds.
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I worked hard on memorizing yesterday. I’ve another few days of work to do to master the entire first 1,300 words as well as I know the first 800. The 800 roll out of me as quickly and comfortably as normal conversation. I’m taking the script with me to Nanaimo today, to read during ferry waits and rides. I’m dedicated and determined.
I have a pacemaker check up today. The ferry ride is free, so I always to my shopping for dry goods at a superstore. I’m going knowing my pacemaker is working well now. When I see the technician, I hope to learn if the last incident was a problem with my heart or the pacemaker.
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