changing the story

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.

irish dancer

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.

stylish girls
stylish girls

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

#expressyourselfie

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

 

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.

The PSP Association want to capture all these things in the #PSPAExpressionSelfie.

I think we can do that

 

Go grab your camera/ phone, be silly and have some fun. Appreciate the little things you can do.

Share your pictures, make all your friends and family giggle, react and post their pictures. Have fun!

 

 

To donate to the PSP Association, please text PSPA02 along with the amount you wish to donate to 70070 (PSPA02 followed by a gap followed by the amount eg. PSPA02 £2 to 70070).

#PSPAExpressionSelfie Working for a World Free of PSP & CBD – The terminal degenerative brain disease.

turn, turn, turn

The vibrancy has gone from the green. Leaves are getting ready to fall.

The school preparations are nearly done, although Girl2 will be happier once she has mastered the knotting of the new tie.

The end of August is in sight, but the temperatures are those of later in the year. “Like October” said the weatherman, and nobody was surprised. We’ve all been putting on the heat. People have been spotted out and about in winter coats, scarves and hats. Children are donning the warm things without being told.

On the other hand, I just found the linen trousers I put away carefully for the summer. I’m wearing them. I’m wondering where I put the thermals.

 

on saving my sanity while shoe shopping

It’s an annual trauma. Back to school shoe shopping.

I’m super at internet shopping, or browsing in fancy shops, but I freak out in supermarkets. Too much noise, too many people, specific requirements and too much choice. Exhausting stuff. School shoe shopping has all of that, with the addition of style conscious girls. With strong opinions.

I hardly remember my own school shoes. My feet stopped growing when I was about 13, so it’s entirely possible I had the same pair of shoes for the next 3 or 4 years. Black. Regulation. Styled like a pair of boats. I didn’t mind. I had no interest in or opinion on my appearance. My enormous glasses, frizzy hair- attended to with an ‘afro’ comb- and general lack of concern drove my poor mother mad. Eventually I developed enough interest in clothes to gather a red ra-ra skirt  and white court shoes, but I’m not sure Herself regarded that as much of an improvement. She’d be delighted with her granddaughters caring what they look like.

We had to buy football boots, trainers and black shoes. It was maybe ambitious to try to do all at once, but Spurs Fan is a dedicated shopper and determined to get a bargain or five, so we went to the local outlet centre.

I was defeated straight away by the wall of brightly coloured football boots (what happened?) and moved to the many, many boxes of trainers. It took about 10 minutes to work out that they were labelled with US rather than UK sizes. The reading glasses had to come out. I was fit for the hills before anyone had even tied a lace. All the sizes, all the colours. Twice.

I went for a reviving coffee and wander about. I tried on some unflattering clothes and decided to return to WeightWatchers. I wasn’t just overwhelmed, bored and tired. I was fat too. I wasn’t having a great day.

A preliminary potter round the sensible shoe shop filled my heart with dread. There were loads of sensible flat black shoes to be worn by sensible little old ladies. I wouldn’t wear most of those shoes, never mind expecting the girls to. Being patient souls, they tried, but their faces got longer.

In the midst of it all, I cheered up enormously. It’s not just us. School shoe shopping plagues all the houses. Children the world over make their opinions known. We’d have another go.

The magic moment came courtesy of Tinman. His post about a teenage daughter and school shoes popped into my head just when I needed to smile. He tells tales that make me laugh, and pluck at my heart. This one saved my sanity that day.

there's more!
there’s more!

We still have to buy a pair of school shoes.