|
Getting your Trinity Audio player ready...
|
Before I start, a quick note on audio: I know a few people had problems recently with the article player.(which for cost is only enabled in the English) I had gone over my allowance, but I have now paid for an increased limit so it should be working properly again.
For the nerds among us (including me), I found the numbers fascinating: in the last 30 days there have been 46 hours of listening time and 647 clicks on the audio player. That means roughly 7.7% of people viewing the articles are also loading the audio version.
Given the subject of this post, that feels oddly appropriate.
The exact statistics are pure speculation, but I was genuinely shocked by the magnitude of the change. A combination of disbelief on my part, together with people around me being kind and compensating for it, meant I had completely missed something that was becoming increasingly obvious.
I learned something this Shabbat that I had not fully realised before: just how much my voice has changed. I should point out that this is not all the time and that it comes and goes, but it has become yet another thing that has suddenly become real.
On Friday night I was not feeling well and went to bed before dinner, after synagogue (yellow ear guards, baseball cap and sunglasses, of course). My bedroom is just off the dining room — one door between us. Later, I wanted to let my wife, my children and my carer know I needed something. I called out to them. Not a phone call — just my voice, carrying through a single door into the next room. We do not use the phone on Shabbat.
I thought I was shouting.
Apparently, I wasn’t.
Nobody heard me.
Eventually I had to use the emergency call feature on my smartwatch — set to Shabbat mode — to contact my carer and ask for help.
Until now, I had assumed my voice had dropped perhaps 5 or 6%. The occasional “What?” or “Can you repeat that?” seemed normal enough. People leaning closer. Asking me to repeat myself.
But then my children told me that at certain times of the day my voice may have fallen by something closer to 80%. Others gave different estimates, but my kids are honest to a fault and, in fairness, had been telling me this for some time.
What surprised me was not that it was happening — reduced voice volume is one of the most common features of PSP — but that I had become so unaware of how much it was happening.
It turns out there is even a word for this: anosognosia. The brain’s failure to update its own self-image as disease progresses. It is not so much that I was in denial as that my brain simply had not filed the paperwork.
The strange thing is that while people sometimes struggle to hear me, this entire post was written through dictation using the Wispr app on my iPad. I have not had to correct a single word. After major problems using it on my laptop and phone, it is oddly working brilliantly on the iPad.
Perhaps that is a reminder that while PSP keeps taking things away, technology sometimes finds ways of giving a little bit back.
What has struck me most over the last few days is how many things I had mentally placed in the future have quietly already arrived.
I also suspect there has been an element of under-reporting from the people around me — for all the right reasons. Partly to protect me, and perhaps partly to protect themselves too. But kindness can sometimes delay adaptation. Speech therapy, conscious focus, practical adjustments — all become harder when nobody quite wants to say out loud what is already happening.
Including me.
And perhaps that is one of the strangest parts of progressive illness: not that change happens, but how quietly it can move from the future into the present before we finally allow ourselves to see it.
