Monday was an easy day. We started with a walk with our small group of canine and human friends, and then we went into the village to do some grocery shopping before coming home to read and chill—and sleep for Sheba.
I’m reading a book that I’m enjoying. It was written by a young medical student. What’s with so many doctor authors I like? Oliver Sacks, Abraham Verghese, John Keats, Chekov, Conan Doyle, Khaled Hosseini, Maugham, and Michael Creighton. What? They don’t earn enough money?
When I went for my pre-surgical appointments for my cataract procedure, it was like being processed by automatons. Their somnambulistic presentation made me realize how frighteningly dull their work life must me doing the same thing over and over, day after day. I wanted to be a doctor but I was way, way too squeamish. It helped push me into my plan B: theatre! My experience at the eye clinic made me very happy I made the career decisions I made.
I ran into Nancy in the village. It’s become very clear to me that my friends will stick with me no matter what happens. That is the best medicine possible. It’s the same with Dr. Shoja. It’s calmed me down, as has finding that I can comfortably function with people. It’s not game over with speech. There’s clearly been some recovery. I feel ‘normal’ again, but with even worse speech. But that’s okay. Anything is okay if I can still have friends and be happy.
Today, I go to Vancouver for my first real social experiences since ‘the fall.’ Lunch with one person, Niki, and dinner with two, John and Bunny. All dear, dear friends, but in foreign places. Being with trusted friends facilitates my speech, being in new places works against me. When I’m away from home, I’m in low dose stress the entire time.
This downturn has taught me a lot: Being mute is scary. All I need to be able to do is say a bit to feel present with friends. There’s no stability in my condition; there are day-to-day fluctuations, and infrequent significant and sudden changes in my symptoms. This is a journey. The playbook is constantly being revised.
I have two brothers: Steve and Dwight. I called Steve, my former partner of 14 years. He does what he’s always done: the minute he answers my call, he starts telling me about his life. When he’s done, he asks about mine. Talking about his is probably 85% of the call. Then Dwight called. With Steve, it’s mostly me calling him; with Dwight, it’s mostly him calling me. With Steve, we talk about Steve. With Dwight, we talk about ideas a lot, about his kids and brother, and about me. We talk a lot about me, together.
He is my brother fantasy. He is wiser than me about people and life. I respect him and I love him. I love him because he supports me. When I was having seizures, I’d call him, and he’d talk me down. He kept me calm. He knows how to manage me. He lived with Steve and I for five years in our basement suite. That was my family/brotherhood experience.
When these neurological earthquakes happen, Dwight looks after my spirit and Dr. Shoja helps me understand the experience. She is like the co-author of my life story. What she labelled my periods of my life experience as cause and effect. She is the architect of that idea. My friend Franny, a dear, dear friend of 52 years, ridiculed me one night here at Pinecone Park, for believing Dr. Shoja’s theory.
I was shocked and despondent because of the viciousness of her condemnation. We haven’t spoken since. But it’s a valid question. I had a choice. I also have a friend, Beth, who strongly believes in Dr. Shoja’s diagnosis. I have an image that burned in my brain when I was taking a psychology course at UBC. On one page, accompanying research on the parent/child bond, was a photograph of a young monkey, “separated from its mother at birth’ (a phrase that resonated with me and was implanted in my brain), and raised in cage with a ‘mother’ of wire mesh covered in a facecloth, plus a feeding tube. It was a heart-breaking image then, and the memory of it is now.
How could I not accept Dr. Shoja’s theory with that history. Now, I go back for more narrative to paste into my life story. I want to know why I’m getting worse, not better. I think it's diagnosis aftershock.
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We're in a rush to catch an early ferry to Nanaimo, and then to catch another ferry to Vancouver for my day with friends. I won't be back here until late Wednesday or Thursday.
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