Tuesday was a good day. For one thing, Sheba is well on her way to recovery. She was walking with barely a limp. Still, we took it easy yesterday doing one very short trail walk, and one normal one in the afternoon. I’m enormously relieved.
After a battle of concentration, I completed the book Insomniac City, by Bill Hayes. Mr. Hays was the late-in-life lover of my hero, Oliver Sacks. It was Mr. Hays who helped Mr. Sacks come out very late in life. I was so overwhelmed by the book, I looked up Mr. Hays online, found his website and wrote him a letter:
Dear Mr. Hays,
I discovered Oliver Sacks in my early twenties. It was The Man Who Mistook His Wife for a Hatthat ignited a life-long passion for anything and everything Oliver. In Migraine I discovered my deepest secret that caused me to worry that I might be crazy, was an uncommon aspect of being a sufferer of classic migraines. How could I not love a man who ended a deep fear?
In 2016, I awoke one morning out of control of my body. It was the first of many seizures I would have that day, and I lost my ability to speak, and so began a long process of learning, understanding and acceptance. I was diagnosed with complex PTSD and functional neurological disorder.
I retreated from the world, ashamed of my inability to speak and the jerking, twitching and groaning that would start if I tried to speak. And I hated seizing in public. I moved to a small island not too far from Vancouver where I had lived all my life. I wanted to get away from people, noise, bright lights and the chaos of urban existence. The move helped.
One beautiful summer day on this paradise island, I was driving and listening to the radio. I was not paying attention to the music, but suddenly I heard the announcer say … “eminent American neurologist, Oliver Sacks.” I’d thought of Oliver as many things, a genius, a heart that could walk, the best doctor ever born, an extraordinary writer, a bit of an eccentric, but never as a neurologist.
But now, living with a very frustrating and life altering neurological disorder, that label resonated. I had to pull over and stop the car I was so overwhelmed with emotion. Instead of being ashamed of my symptoms and frustrated by them, I felt released again from my fears by your wonderful friend, Oliver. My fear and shame were replaced by irrepressible pride in being one of Oliver’s people. It felt like a divine gift to be someone he might have helped, someone whom he would understand, to be living a link to a man I respected more than all others.
Reading Insomniac City was such a privilege, Mr. Hayes. It turned in icon into a man. Thank you for writing it. Thank you, thank you, thank you. It never once occurred to me, during all those years during which I read all his books (loved Uncle Tungsten!) that my hero might, like me, be gay. Bonus! Your book is a beautiful memoire of a man so many of us strangers loved. Thank you, thank you, thank you.
This morning, I got a reply, much to my delight:
Dear Christopher,
Thank you for your kind words about "Insomniac City" -- and for taking the time to write. I'm so sorry to hear about the various neurological disorders you've suffered over the years--it sounds very difficult--and yet, how lovely to hear that Oliver and his writings have provided comfort and inspiration. I love your description of him as "a heart that could walk." Indeed!
With many thanks,
Bill Hayes
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I felt euphoric much of yesterday. Aren’t I lucky? Of course, being slightly mad helps because my illness magnifies emotional response. I had so much to be happy about: Sheba was rapidly getting better; the stink has gone and the night walks before bed have stopped her from night pees indoors; the house is all clean and in order; and finally, and finally, I realized that I could feel this good even though I nap three times a day, can’t carry much weight or walk too quickly.
I hope a problem is found in the upcoming tests, and I hope that they will fix it. Both hopes are reasonable. But I’m no longer panicked about what I will do if no problem is revealed. Life can still be very, very good even with little energy.
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Christy Clarke was once the premier of BC. I think she is an ambitious and clever and vile. She dropped out of the race to lead the Liberal party. Thank God!
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Today, we are off to Nanaimo. We’ll walk in our favourite park, I’ll have lunch with my high school friend, Bev, and I’ll do some food shopping at Thrifty Foods where I can get some fabulous sushi to bring home for dinner.
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