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Like so many people, one of my favourite activities for as long as I can remember has been getting into bed, curling up, and reading a good book. Sometimes for a few minutes until I drift off with the book planted on my stomach. Sometimes for hours, especially on Shabbat when, of course, I should probably have been learning more religious texts but wasn’t.
In the last month I have not picked up a book in bed once. That says a lot. And I miss it more than I expected to.
It’s not because I don’t want to read. It’s not because I’m too tired. I wish I was too tired. It’s because I can’t really read at night anymore. My eyes simply won’t focus properly. Reading has become effort rather than pleasure.
Then there are the mornings. I can barely make out my watch when I wake up, and it takes me a few seconds to work out what time it is. I can’t read the updates on my phone. My eyes wake up crusted, narrowed, sometimes barely open at all. It’s a horrible way to start the day. I actually took a photo the other morning – trust me, it won’t be winning any beauty contests.
What strikes me is that it’s not always the biggest things that hurt the most. Sometimes it’s the smaller losses that really get to you. Losing the ability to smell. Not being able to read in bed. Extreme sensitivity to light.
They sit alongside the larger losses – driving for the last time, retirement, all the other major adjustments — and together they create a constant cumulative weight that PSP presses down relentlessly.
You can’t even properly enjoy the good bits anymore while dealing with all the rubbish around them.
And then, inevitably, someone who can’t see any of this tells you how well you look, which somehow makes it even more irritating.
During the day I manage with dark sunglasses, which I now wear almost constantly — not for fashion, sadly, but because my sensitivity to light has become extreme. I can still get through a couple of Economist articles. I can just about manage the computer and iPad because the fonts are large and the screens are lit.
I’m struggling, but I’m managing. I can even read with prism glasses help my favorite World Almanac in small doses with one eye shut but not in bed.
This Sunday I have my second round of Botox injections. The first round was a cautious test dose to make sure there were no adverse reactions. Sunday is the higher dose, possibly with my nose joining the party as well. We’ll see whether it helps.
The problem with a progressive disease is, unfortunately, that it is a progressive disease. Medical science has yet to come up with a better definition.
Before everyone asks: yes, I am using Audible. But I don’t use it on Shabbat, and it isn’t quite the same anyway. The most annoying thing is that I keep falling asleep mid-chapter and waking up somewhere completely different with absolutely no idea where I left off. It’s strangely disorienting in a way that feels oddly familiar these days.
So I won’t be taking recommendations. Not for Reacher. Not for Bryson. Not for Jack Ryan. Not for anyone.
Reading in bed is gone for now, and that is a loss I am still getting used to.
It is sad.
