When I was in my twenties, I met Bruce Greenwood. I loved the guy, and we fell into a potential plan to go on a vast sailing trip with a former student of mine, named Dave Swail. As our plan evolved, and I started researching celestial navigation courses and reading about long ocean voyages. That research brought an end to our plan. When I read about rogue waves, I was done. What I read absolutely freaked me out. Little did I know how big they could be and how close to home they could be. The film above shows you very dramatically how immense a rogue wave can be. This one was 17.68 meters (58 feet) tall and it was recorded by a floating buoy just off the coast of BC at Ucluelet.
I feel more at peace with the clinic. I took on something I knew was a risk. I am allergic to people. I have had trouble with people all my life. I had to go to school, and I had to work. My reward for being responsible was making friends. You’ve heard of gaydar? I have soul-dar. I know instantly who is trustable and who isn’t.
I knew joining the board of the clinic would be a challenge. For me, my course with the clinic is very hard for me to navigate. I’ve decided to see my challenges with the board members as part of what I asked for. I believe I can make it. I’m going to try hard. Dr. Shoja’s mantra was, “Frontal lobes!” I was to use reason as part of my management plan for coping.
A flurry of change: Lydia and David have written to say that they are planning on a visit in April, and that month Anna, Terry, Tory and Keith are also coming to visit. And next week, Bruce and Caryn are here on Monday, and Wednesday and Thursday I’m in Vancouver.
In April, I begin my 7th year living with FND. The first three years were a write-off. My life was 100% coping with symptoms. I was having up to 20 seizures a day, and seizures that were much more violent and hard-hitting than they are now. The remaining four years involved constant adaptation. It’s been all about deficiencies for me.
But last night when I sat down to compose this post, I thought I’d be writing more in that vein. But my mind turned to Oliver Sacks and the people I saw in the movie as his story was told. Well into my adaptation years, I was driving and listening to the radio one day when the announcer mentioned Dr. Sacks—and that he was a neurologist.
I had what I’d call a relapse. My symptoms got much worse, and I felt wretched. I was having a massive physical reaction to an association that had powerful emotional resonance for me. I’d idolized Dr. Sacks as a young man reading all his books. I was drawn to him because he was a renowned global authority on migraines, and they were a horrid, painful part of my life.
I read his other books recreationally. They were fascinating, but I didn’t know that he was a neurologist. Somehow, that understanding missed me. So, when I heard the announcer refer to him as one, I was overcome by a feeling of relief, and I became far, far more at peace with my condition—even proud to be connected to Sacks’ story. I was shocked to see how much ‘good news’ could so adversely affect me.
Just as I find it hard to deal with people on the clinic board, going to Vancouver makes my symptoms get much worse. And guests make my symptoms flare, but just for the first half-hour or so, then I get much calmer and more fluent. Nothing social is easy. That’s what I’ve learned. I can’t fight the obvious: I’m allergic to people. Dr. Shoja said social anxiety is very common. She said, “That’s why alcohol is part of most social activities.”
I think of my friendships as my only purpose for living. I can’t stay here alone for the rest of my life. But it’s weird to think about my condition. An athlete can say, a game really takes it out of me. Most people can say that some activity exhausts them, but they love doing it. That’s like me; being with my friends and the board members of the clinic exhausts me. But the benefits make the work worthwhile.