Keith has Progressive Supranuclear Palsy. It was wonderful to finally meet him and Sheelagh in London a few weeks ago. This is their story.
It’s PSP awareness week. The long term reader will have noticed me mention Progressive Supranuclear Palsy before: it’s what my mum had; it’s why I was at the Houses of Parliament recently; it’s why I’m interested in rare disease. PSP shaped my mother’s life; it’s shaping mine too.
Herself was in her early sixties when she took to falling. She had double vision too, but that didn’t seem to be why she was falling- she wasn’t tripping, just ending up in a heap on the ground. Her mood wasn’t great, and her confidence dipped. She stopped driving and dancing and playing bowls and playing golf and doing yoga. She went to the doctor every few weeks, but never quite gathered herself to tell him about the falling. We began to wonder about her speech…
I went with her to the doctor. A scan, MRI, consultant appointments followed. Eventually we ended up with a neurologist, and were innocent enough to still expect a diagnosis and a tablet. Later still, we had a diagnosis, but no clue.
If I read the internet right, my mum would end up in a wheelchair- maybe bed bound?- have difficulty with speech and swallow and communication and vision and continence and, and… No. That couldn’t be right. Ok, she wasn’t quite herself, but surely a dynamic, vibrant woman wouldn’t just fall apart and be bed bound and unable to communicate without something dreadful happening? But the dreadful thing was already happening, inside her brain. There was nothing anybody to could do to stop it, or slow it down. We just had to work out how to live with it, how to ease things, how to hold her hand and be with her through this.
Four years after the diagnosis, my mum died. She was indeed bed bound and hardly able to communicate, but in her last days we got gifts of a hug, a smile, a shaken head, a thumbs up. She was still there, still making her opinions felt, still wowing us with the force of her will. She’d spent 2 years in a nursing home, challenging systems, causing havoc by falling out of bed and refusing to press the buzzer, singing while she could, continuing to be indignant at living with the old people, continuing to believe that she should be at home looking after Handsome Husband, who’d been diagnosed with Alzheimer’s.
PSP always wins, because once the progression starts, it keeps on going. Sometimes there’ll be a big change, sometimes little bits, but the dreadful thing keeps on going.
My mum had to deal with the many, overwhelming aspects of living with, and dying from PSP. I have one challenge this awareness week.
I dug out the ancient, hardly worn, trainers and swapped a lace. I’m wearing #EdsLace all week. I will not be stylish, but that’s no change.
#EdsLace is one of those simple, clever ideas. The coloured lace can be bought from PSP Association. It can be worn as a shoe lace, a hair band, bracelet, anything at all. The key thing is that the end is cut off. The lace will fray. Sometimes there’ll be a big change, sometimes little bits, but the lace will keep on fraying. We can’t stop it or put it back together. The lace progressively falls apart, representing the impact of the dreadful thing on those who live with PSP.
So if you see an oddly laced person this week, chat to them. They will have a story to tell.
I’ve written about Carlo Gébler before; the power of storytelling, the strength of a phrase, the power of an image.
Yesterday I spent an hour or so at a reading/ discussion with him, hosted by the always great No Alibis bookshop, and I left even more star struck. I didn’t think that would be possible. My head is full of images, and I’m still trying to figure out what the smell of ‘Bakelite and perfume’ might be like. I spent years thinking that telephone exchanges had a particular smell, perhaps something to do with the wires, before realising that my non smoking dad gathered up the smell of smoke from his colleagues when at work. It turns out that telephone exchanges actually smelled of companionship and a deep connection that was nothing to do with the wires.
Had I any wit I’d have brought Carlo (‘Gébler’ seems terribly formal) a bundle of his books to sign, as well as the book I bought yesterday. But why would I think of that? Maybe that’s not quite the done thing. Maybe I’m too forgetful to be gauche- a small miracle.
Had I felt like a peer rather than a fan, I’d have mentioned how his sentences have stayed with me:
Bang in the middle of the 20th century my father took a wife who produced a son whom he called Karl.
Then he lost that wife, took a new wife, acquired a new son and he called me- Karl. (Carlo, as I now am, only came years later.)
I have a narrative that makes some sort of sense of what happened.
You can’t change the past, but with understanding, you can sometimes draw the poison out of it.
On reflection I realise that a lot of what I try to do these days is try to draw the poison out of the past. Medical experiences, frustration with health care systems- we can’t make progress if we’re swimming in poison. Difficult though it can be, we need to find ways forward, routes round the roadblocks.
No, I didn’t have that conversation. I spelled out the letters of my name for him.
But why so star struck all of a sudden?
Carlo grew up in a literary home. His parents were well known writers- Ernest Gébler and Edna O’Brien. That wasn’t news, but I hadn’t considered the possibilities created by growing up around literary folk. Just like the little Beckhams or McCartneys, family friends & colleagues (who happened to be at the top of their game) were round at the house. I’m still reeling from him playing Samuel Beckett some music from The Who, and Beckett returning the favour by playing Wagner on piano. And Salinger. The old man who was so much less interesting than his sixteen year old daughter when Carlo was fourteen.
I’m not just in awe of his writing and his story telling, I’m in awe of his past. A past from a different world. I saw him not simply as a storyteller I admire, but as a link in a long and wonderful chain of connected storytellers.
Is that very odd? A bit too much like the woman who danced with a man who danced with a woman who danced with the Prince of Wales?
Fun, inspiring and challenging. I must do more of this getting out of the house business.
I’ve learned a lot about myself and others in recent months. My inner dictator accepts the value of differing opinions and is working hard to listen and to value those.
We are all challenged by difference, by something ‘other’ than our own world view. We may fall into the trap of using the phrase ‘common sense’ until pulled up on that by someone we grew up with. Someone who knew us when we were eighteen, and remembers what a mess we were then. “Common sense is the collection of prejudices acquired by age eighteen.” – Albert Einstein (quotation via The Brother)
‘Common sense’ can lead to dangerous places…
Much can be learned, much can be changed by making time and space to listen to other views, to recognise the concerns and constraints of another. That doesn’t make it easy. It doesn’t make change quick. It doesn’t mean that my opinion will prevail. But it will mean that we begin to make progress, together.
As I am being challenged and tested and surrounded by differing opinions, I ‘ve been encouraged by a TED talk by Elizabeth Lesser. It’s about more than lunch- though that helps with the structure, venue, timing and enjoyment- it’s about working to understand those we disagree with.
In an election period, am I talking myself into having lunch with all the local candidates? Maybe I need a diary secretary?