used to be

I used to be a teacher, a rower, a daughter. I used to be employed, and healthy. I used to be a blogger.

Now, I’m not quite sure.

I’m busy and motivated and exhausted. I’m a volunteer and a dance mom and an occasional blog reader. I still have ME, I juggle all the things, and I sleep.

It used to be that I’d go for a walk and tell you about it; taking pictures in the museum and sharing my random thoughts on creativity or elephants or the chap who sounds just like Sir Humphrey.

You’d see my new purple nail varnish, or a tidy room, or the silly thing that made me laugh while my family rolled their eyes in despair.

Then I shared less music and more ranting. I’ve bored myself with the ranting.

Brexit leading to threats of war, Trump, NI politics, the Irish police– all of these are beyond parody. Unbelievable behaviour from those who simply don’t care about the rest of us. We appear to be beyond all norms of acceptable behaviour and nobody is being held to account. I don’t know what happened or what to do about it. (Social media is probably not the solution.)

I’ve felt defeated, and pictures of pretty things haven’t helped. I’ve been missing my wee mate Jake- always one to distract me from too much introspection when we were home alone. I’ve taken on extra responsibility with our charity, but nobody wants to read that sort of detail.

Alternatively, I’ve had loads of new experiences, I’ve joined a political party (in an attempt to divert the ranting into something constructive), I’ve got access to spontaneity via a new to me car, and it’s spring. The world is coming back to life, maybe I should, too.

 

 

I used to be in a bit of a rut. Bear with me as I work my way out.

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the power of cake

We had two events on Rare Disease Day, and two cakes. What’s a celebration without cake?

cake NIRDP

Cake is for sharing amongst family, friends and community. It is a great leveller. People gathered to admire, to photograph, and enjoy. There are no hierachies as far as cake is concerned. No need for formal introductions when admiring someone else’s hard work. There were smiles and laughter from all.

Cake brings a party atmosphere. There were no brightly coloured balloons, but there were sweets on arrival, finger food for meals & people were dressed up (I wasn’t wearing pyjamas!!). There were presents- not simply free pens from some exhibitors, but awards. The NIRDP public service award went to Kieran McCarthy, MLA and the NIRDP community award went to our mate Ditzy. (The long term reader may remember tales of driving round the region with Ditzy and the always attendant chaos.)

Days later some of the symbolism of cutting the cake occurred to us: not only honouring the cutter as in a birthday, but marking a new togetherness as in a wedding. The message was we value you, and we want our relationship to be long term. Our cake cutters were the Health Minister, VM (lead for Clinical Genetics), Ditzy, Kieran, AK (Chair of the UK Rare Disease Forum) and DS (head of Commissioning for health & social care in NI)- patients, families, clinicians,policy makers and politicians. Cake to mark the development of community.

All that, and it tasted great!

Learning from Rare Disease Day 2016- always choose cake; you’ll think of a good reason later.

 

 

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?