Monday was lovely. We had brilliant sunshine, and it was decently warm. But best of all, I did a run of all 1,300 words with only one block. I was elated by that run. I felt so good, so very, very good, I quickly memorized an additional 233 words, and then did another run Monday afternoon with the additional words and aced it. I only had the one block again.
I ran through the 1,530 words a few times Monday afternoon, and then Her Highness and I went to Rollo Park to play fetch. H.H loved every second of chasing the ball, and I loved the spectacular scents of the afternoon. It was 10°, spectacularly sunny and it truly felt like Spring had arrived, even though it’s still a week away.
I came home to get things ready for my trip to Vancouver, and to run through my lines a few more times. Now, it’s wonderful to run lines and to practice because I’m so, so close to finished.
And more than ever, I’m proud of my monologue. I’m particularly proud of the lines below; it feels extremely good to say it aloud. What I say is true., and soon I’ll be saying it to an audience.
But all the clerks and servers say,
“I’m here for you, it’s all okay.
Don’t try to rush, just take your time.
And by the way, you’re great at mime.”
And they touch me, always right up here.
And I relax, because it’s clear
That disability triggers empathy.
People are very, very kind to me.
My world has changed, and for the good
People acting as people should.
The world’s a nicer place to be,
now that I’m a different me.
I awoke at 4:30 Sunday morning. I have magic in me: I can wake at the time I want/need to rise without an alarm clock. I have never in my life needed an alarm clock. Go got to Nanaimo and stopped for a walk before getting on the ferry.
Once in Vancouver, we went to Beach Avenue, parked and went for a long walk on the seawall and on the parkland around it. Then I had lunch with Robin at a favourite restaurant. Then Sheba and I went all the way to Knott’s Bon Ton to get a Diplomat cake. It’s my favourite cake. And then we went to the dog park in West Van, and it’s the best off-leash area I’ve ever seen. We had a good long romp together. I loved meeting so many dogs.
Then I had a lovely visit with John and Bunny. It’s like being home at their house where Sheba is welcome. My Vancouver sanctuary, where I always sleep well. We went back to the dog park together in the morning—a beautiful, bright sunny slightly misty on the river, morning. We walked for about an hour and then went to the ferry. We were second in line, in daylight at the bow on the ferry, and only had a short wait for the Gabriola ferry home.
At St. Paul’s I am subject #36. It’s a small group of people with a long history of HIV. I’ve been on the cocktail for 37 years. There are forms to complete, physical tests and measurement to do and interviews. I’m part of the study for a few years.
At one point I was asked how I contracted HIV. I got it because of Eczema on my hands, with deep cuts where the rash patches.
I had killer migraines for years. They’d start with blinking lights blocking out my vision. I knew what was coming and I dreaded it. One the lights started, I had twenty minutes to get somewhere before pain started, so strong, it made me want to die. I’d moan and be physically unsettled in that pain for 24 hours without sleep. Then I’d vomit, and then go into a very deep sleep for 15 – 18 hours. You couldn’t wake me when I was in that sleep.
They’d come on Friday afternoon, I’d vomit Saturday night, and sleep through Sunday, and then go to school for the week. I started reading about Migraine Headaches and discovered a book called Migraine written by Oliver Sacks. It was therapeutic for me to read that book, because it was written in a style that was accessible to lay readers (the last two chapters, not so much).
Then I hit a section of the book where Dr. Sacks discusses issues of vision and perception in people with severe migraines.
I think I’ve written here before about a secret I carried for decades. I would have visual hallucinations, but I did not know that word. I didn’t want to tell anyone because I was afraid of what they’d think of me. But it was always a horrible, horrible experience. I’d feel intense fear and I believed that what I had to do was get as much light into me as I could, so I would go into the bathroom, where we had a very bright overhead light, and I lay in the bathtub so that its porcelain sides would reflect more light into me.
It was a rough time having no mother at home at that time, and an absent father and no siblings. I had no one to talk to. I can remember, on those deep sleep Sundays, feeling my father rubbing my back. It’s the one good thing I remember.
The description of symptoms at the beginning helped readers know what kind of migraines we had. Then symptoms, therapies, duration and other outcomes were discussed, and therein I found Dr. Sacks explaining visual hallucinations and he mentions my form specifically. I was an instant passionate groupie and advocate because his words sucked all the pain and shame out of me. I felt I’d found God.
The knowledge and writing skills of Oliver Sacks healed me.
Fast forward a few decades, I am here, on Gabriola, and I’m in my third year of living with FND. I’ve been through a very, very rough patch. One day, it’s sunny and warm, I remember that, I am driving in my car and listening to the CBC. And the announcer mentions “famed neurologist Dr. Oliver Sacks,” and I got into serious trouble.
I’d drive a bit, pull over, try to focus and capable, and then I’d drive some more when there were no cars on the road, and I got home. And I was a wreck for the rest of the day. I was, and still am, an emotional wreck. I had what I can only call an epiphany, and it overwhelmed me. I did not link my own condition to Dr. Sacks and to the people in his books, until I heard the announcer on the radio.
That announcer made Dr. Sacks, migraines, hallucinations, FND and ‘me!” all come together. It made sense of all my curses. This man, through his writing, made sense of my life. How could I not love this man? Dr. Sacks and Dr. Shoja are my gods.
There’s a film on Sacks airing soon, on our Knowledge network. In its promo reel, the dean of the Columbia University’s Neurology Department says: “70% of our applicants reference Dr. Sacks.”
Yesterday was very, very busy. That’s why I didn’t post. I had a ton of emails from my days away, and a major article to write for the clinic. Plus, I finished memorizing my monologue. I’ve done it. There are, of course, blocks in my delivery, but I have two months to practice and get rid of them.
Last night, I watched Living, a wonderful movie with Bill Nighy. I loved it.