“Once you get to fifty you become young again.” said the friendly GP, “Young to die.”
I told him I might need to change practice. We laughed, but I knew what he meant.
I realised recently that I remembered clearly the 50th birthday of each of my parents. Each day was defined by the old man’s health. On his birthday, he went to hospital for a minor procedure, which became major surgery, Christmas on a protein drip, and a cancer diagnosis. Two years later he was in a different hospital, pleading to get out for a few hours to help herself celebrate her 50th. That didn’t happen. The old man was young to die, at 52. Herself was still young to die, at 68.
Many of mine are long lived, but nobody has reached a century. I’m past the middle.
So we gathered together, the Belfast based McSpecs and the Scotland based McSpecs. We swam and lounged and laughed. We walked and ate and looked around us at loveliness. Children played, bounced on all the beds and had adventures with a golf buggy. We went to bed at a reasonable hour and were dressed, sociable and devouring cooked breakfasts by 8.30 am. Eventually we had to come home to an eccentric dog and real life.
In a few weeks, there will be no sedate loveliness, or early bed. There will be a wee room, a bar and a dance floor. Spurs Fan is compiling a playlist. There will be a gathering up of friends. There may be silliness.
Family, friends, togetherness, celebration- what’s important in the world.
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.
As is the way of these things, my little people are getting bigger. Early each year I’m puzzled by changed age groups in sports and dancing. How can Girl1 be ‘Under14’ and Girl2 be ‘Under13’?
Under14 dancing has different requirements- and I don’t just mean the jig set dance (nope, me neither). I mean the make up. Girl1 went dancing on Saturday before a competition, except there was no dancing. There was a beauty parlour in the back room, with Girl1 and her mate as the subjects. The bigger girls wheeled out make up bags and curling tongs and set to work. Great fun was had, with the dance teacher occasionally popping her head round the door and demanding more blusher. The girls looked great, wondered if their eyebrows had been coloured in because they felt weird, and danced just as well as they normally do.
Have you spotted the problem yet? This level of attention to appearance is now a requirement. I’m going to have to help do it. Me, in charge of somebody else’s make up and fancy hair do. A whole new story opens up.
Our stories change over time. I used to talk about education and employment for ex prisoners, then I could do nothing, not even talk about doing nothing apart from lying on the sofa. ME took much from me.
Eventually I started to tell my mother’s story, as the one thing I could do about her illness, and I realised that my themes of isolation, loss, grief, families as experts in rare disease, bewilderment & lack of support were common to many other stories. Like herself, her story was unique, but the issues it illustrated were common to many.
Unfortunately, they still are, and I’m still telling stories to try and change that.
Why stories and not graphs and stats and charts and plans? For the same reasons I rarely use text in presentations: I’m the different voice in the room; why would I want to look the same? If I get the chance to talk to health service managers, it’s because I have something different to say. An alternative viewpoint merits alternative presentation- one that looks like ‘me’ rather than ‘how the system works’. (Also, I don’t have graphs or charts or plans.)
So, imagine my delight when I discovered that ‘how the system works’ doesn’t work anyway.
“What the leader cares about (and typically bases at least 80% of his or her message to others on) does not tap into roughly 80% of the workforce’s primary motivators for putting extra energy into the change programme.”
Scott Keller and Carolyn Aiken (2009)
The Inconvenient Truth about Change Management*
Me and my story will potter on, sometimes talking about my mum and rare disease, sometimes talking about ME, sometimes talking about transformed relationships- always talking about valuing of the patient experience and time.
“Health statistics represent people with the tears wiped off”
Austin Bradford Hill
I talk about the people and the tears.
How do you tell your story?
What difference does it make?
* from Module 2 Building Alliances for Change, School for Health & Care Radicals 2015 #SHCR
Social media have transformed aspects of charity fundraising. We all know about no make up selfies and the ice bucket challenge. All over the place, charities are hoping to benefit from a viral craze in their favour, if only they knew how to make it happen.
Herself had the rare neurological condition Progressive Supranuclear Palsy. (‘Progressive’= it’s only going to get worse. Shit happens. Tough. ‘Supranuclear’= it’s the messages from the brain not getting through to the bits of the body that move, see, cough, communicate, balance. ‘Palsy’= paralysis. Overall, a progressive paralysis that we can’t do anything about. See you in a year. Bye. ) As muscles stop moving, faces lose their expression, another form of communication is lost.
Herself died 3 weeks after this photo was taken. This was a huge effort- sitting up and dressed, ready to greet the family, to be entertained by tales of school and impressed by new Irish dancing steps. Her face, like the rest of her body, wasn’t doing what she wanted it to.
But my face moves. I can do all sorts of silly things with it ( except get rid of that extra chin, the pointy nose and the wrinkles). Most of us are blessed with the ability to express our emotions on our faces. We can also exaggerate, be dramatic, laugh and just have fun with those faces. Girl1 and Girl2 spend a ridiculous amount of time posing for selfies.