As I enter Elul, the holy month before the Jewish New Year and the beginning of a period that leads us towards the Days of Judgment, I feel as though I have been shaken awake.

I live with Progressive Supranuclear Palsy, or PSP, a rare and progressive neurological disease. I know what it is doing to my body. What I read today forced me to confront, much more starkly, what it could potentially do to the person I am.

Recently I wrote about fear and anxiety on my PSP blog. I have seen those feelings in writing now. Today I have almost no words.

And yet, somehow, here I am trying to find them.

Today I read something on one of the PSP forums that genuinely shocked me. Not because it was new information. Not because it taught me something I didn’t already know intellectually. It shocked me because it forced me to feel something emotionally that I would much rather have left as an abstract possibility.

The damage I could one day unwittingly do as a patient.

The post was written by a woman who had lost her husband. She missed him terribly. While describing the final years of his illness, she shared a piece of advice someone had given her. During the difficult periods, when the gentle man she had married would yell and shout at her, she said she repeated those words to herself three or four times a day simply to get through it.

“Give him the best death that you can.”

I have not been able to get that sentence out of my head.

Part of what disturbed me was her description of her husband. By all accounts, he had been a gentle man. Yet PSP changed his behaviour so profoundly that he would shout and argue with the person he loved most.

It wasn’t him. It was PSP.

And that is what frightens me.

It could be me one day.

And as Elul begins, as we approach Rosh Hashanah and the Days of Judgment, I find myself praying even harder that it won’t........

© The Times of Israel (Blogs)