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All is good in the world. I went to synagogue this morning in my wheelchair with my carer. I was happy. Happy with life. Happy with everything. I had even written another positive blog post, ready to go.
And then, BAM.
In the middle of prayers, my eyelids shut. My eyelids shut involuntarily quite often because of PSP. I have been receiving Botox treatment for this, which until now has worked extremely well. They normally reopen. This time, they didn’t.
I tried to open them. Nothing. I tried harder. Nothing. I simply could not get my brain to tell my eyelids to open.
Someone helped me out of the synagogue, and my carer wheeled me home. For part of the time, I ended up sitting on the floor because, unable to see, I couldn’t safely transfer from my wheelchair to the armchair until two people helped me.
And still my eyes would not open.
It lasted about 25 minutes. It was one of the more terrifying periods of my life, and I have had quite a few over the past few years.
My mind went immediately to the future. Is the game up on writing? Is the game up on using my phone? Is the game up on communicating as I do now? Is the game up on another chunk of my independence?
For those minutes, I experienced something unfamiliar to me. I couldn’t see.
I would never pretend that 25 minutes gives me any real understanding of what it is like to live with blindness. It doesn’t. But it gave me a glimpse of my own reaction to suddenly losing my sight.
Intense terror. But, if there is such a thing, calm terror.
Not because I was in pain. Not because anything terrible was actually happening around me. Simply because the world I knew had suddenly disappeared, and I had absolutely no idea whether it was coming back.
I called my GP, who was about to call my neurologist. And, as is so often the way with my crazy body, around the time I was seeking medical help, the system decided to reboot.
My eyelids opened. I could see.
My neurologist was reassuring. He did not regard the episode as unexpected in the context of my PSP. The anxiety it caused was entirely understandable, but the episode itself was not life-threatening.
In the big picture, perhaps it was not such a big deal. But for those 25 minutes, it was enormous.
That is one of the strange things about living with PSP. A symptom can arrive suddenly and immediately convince you that life has changed permanently. Then it disappears, and you are left sitting there, slightly stunned, wondering what on earth just happened.
Anyway, on with the day. On with life. A coffee. A blog post!
I had another post prepared to go out today. It will have to wait just a little longer.
Breaking news has intervened.
Now I feel normal again. PSP!
Welcome, once again, to live reporting from my crazy life. Why report live? To give a window into the reality of PSP. And, for me, to capture it, process it, and move on.
