My Thanks to the Teachers I Never Expected

Every so often a message arrives from someone caring for a person with PSP. One came this morning.
They described their loved one whose speech had all but gone, for whom communication had become nearly impossible, even via thumbs up or down. They said my articles sometimes helped them picture what their loved one might still be thinking.
Whether my writing actually reflects what a person who can no longer speak is thinking, I don’t know. I may find out first-hand one day.
But the message made a different point clear. Over the last year a lot of people have thanked me for what I write, and almost all of that gratitude has run one way. This is an attempt to send some of it back.
I’ve spent the past few months inside the PSP community – the message boards, and messages from patients and the people who care for them. There is no shortage of pain: frustration, exhaustion, loneliness, grief, abilities lost, futures that won’t arrive.
But people also mention smaller things, often without noticing they’ve done it. A smile. A squeeze of the hand. A look of recognition. A joke that still lands. Someone who can’t find the words finding another way to say, I’m still here.
Those details have taught me more than anything else I’ve read.
The people I am most afraid of becoming have turned out to be my teachers. Not directly – most of them can’t tell me anything. They teach me through the people who love them, and those people reveal two things at once: what the later stages of this disease are actually like, and how much steadiness it draws out of whoever is sitting beside the bed.
It has changed how I think about my own future. Not by removing the fear; I doubt anything will do that. But it’s given me evidence – not reassurance, evidence – that recognition, humour and a person’s character can outlast most of what PSP takes.
That isn’t something a neurologist or a research paper could have told me. It came from the families still telling their stories, and from the people further along the road than I am.
So: thank you. To everyone ahead of me on this, and to the husbands, wives, partners, children and carers who have become the voice for people who no longer have one.
You thanked me for something I wrote. Your stories were worth more. They’ve given me reason to think that when my turn comes, more of me may still be there than I’d assumed.
For that, and for the lessons none of you knew you were teaching, thank you.