ch-ch-changes

I was 15 when John Lennon died. I remember the shock, sitting on the bed with my oldies, listening to the morning news with disbelief. No, surely that’s not possible? Dead? That doesn’t make sense.

This morning, Spurs Fan woke me with the news that David Bowie has left us, and I felt just like I had 35 years ago.

I wasn’t a Bowie fan when I was 15- that came later. I met JWN at university and we combined our record collections; my Beatles, Springsteen and Ultravox to her Bowie and Velvet Underground. I learned a lot, and loved it all.

Bowie was there, always, it seemed. Where there was creativity, theatricality and fun, there was a hint of Bowie.

Of course, Bowie’s influence is beyond music- Caitlin Moran calls it…

bowie

But where to start today? I’ve spent hours with 6Music listening to much wonderful music by Bowie, influenced by Bowie, and which influenced him. I’m hearing old interviews, and bereft broadcasters and listeners sharing tales of humour and kindness. A man who did things his own way, and enabled others to do the same.

Thanks, Bowie. The stars will look very different today.

 

 

 

 

 

 

 

the solution to all our woes

People! I am a genius! (Why the puzzled looks- surely you knew that?)

We all know family and friends who have cognitive issues/ who are affected by depression or anxiety/ who have neurological conditions. The human brain is one of the great mysteries. Capable of so much; devastating when something goes wrong.

The regular reader may remember that I have learned to deal with some of the physical fatigue I experience, but continue to struggle with the thinking problems. Often, my brain feels like mush, and reading, writing, talking, are simply beyond me.

Yesterday, I found a solution. In the fun shop Tiger of all places.

plastic brain

I bought a new brain. I can’t promise it will do anything other than entertain me, but we can all hope.

Do you want one too?

chronicle of an empty nest foretold

Off they went, both my little people, for a week. A week of Irish dancing and carrying on with others from different parts of Europe, in Poland. Parents and grandparents scoured social media for updates from the festival or dancers. It’s entirely possible that one of us actually waved with excitement at a screen on seeing a pic with daughters in it. (Technology, eh?)

pier jumping not dancing

And back in Belfast we looked at each other, and around us, a bit like meerkats. Is this what the rest of the world is like? What do people do with their days?

We had adventures, doing things we don’t normally get a chance to do. There were cocktails, afternoon tea and a fancy lunch or two. We explored Parliament buildings, listened to music in a pub, and went to a different beach. We watched a box set, read multiple novels and had boring financial conversations with someone who understands these things. The house stayed tidy. There were no random explosions of energy or noise. No complex taxi arrangements negotiated with known unknowns via snap chat. No daytime TV. All was calm. Ordered.

We’ve had fun, of course. But yet…

Half of us are missing. Jake keeps having a sniff about to figure out where they’ve gone. We haven’t laughed as much. I remember now that watching soap operas is meant to be a social activity. My arms have ached with the empty. I didn’t start counting down the days until they were half way through; now I’m at hours. They’re coming home today, and I’m very excited.

A week, people. It’s only a week. They’ll be grown up in the blink of an eye, and we’ll all be laughing at my excitement of today.

This evening chaos, noise, squabbling and laundry return in full force. My arms and my heart will be overflowing.

(Expect the next post to be grumbling about chaos, noise, squabbling, laundry and teenage attitude.)

#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.