in which Grandma doesn’t get a kitten

The referendum on Scottish independence is over: 45% Yes, 55% No. Great Britain will continue to exist. The level of public engagement has been remarkable and the desire for change clear, so what happens next?

My niece, Little Miss Awfully Grown Up, was clear about why a Yes vote would be a good idea, “because then Grandma will get a kitten.” I don’t know if Grandma was aware of this deal. Perhaps it was negotiated with the leaders of the Yes campaign in a last minute ‘tell the people what they want to hear’ moment. You know those moments. If you’re a parent, you really know those moments- a child is playing up, displaying personality and a desire to be in control of things, and you, the grown up, make a random suggestion to shut them up. You haven’t thought it out well, you’ve just tried out various combinations of words to see if they will ease the chaos. Sometimes they cheer up immensely, behave the way you want, and then you’re stuck. What did you say? Is that possible? Does Grandma even like cats?

not actual Grandma
not actual Grandma

Early this morning, as the No dominance was clear, I saw a telling exchange on television. Yes campaigner Hardeep Singh Kohli asked No campaigner  Man in Grey Suit (it was early, I can’t remember his name) what, exactly, the promised DevoMax was going to look like. The man demurred, it was early days yet, they still had a lot of work to do. The comedian nearly exploded, “You’ve had years to prepare, how can it be early days?” But we all knew how. The ‘vow‘ was a last minute, cobbled together, ‘shut them up’ statement, and now they’re going to have to step up and deliver. Against the wishes of many in parliament, without any actual plans, and under pressure from the whole of Scotland. Closely watched by all in the UK who wonder about the constitutional situation.

The referendum is over, but the conversation isn’t. Scotland continues to lead the way.

Updates on the kitten situation as I get them.

I’d rather be broken than empty

I’ve done more in the last two days that in the previous 2 weeks. I never quite get the hang of the ‘pacing’ thing. Pacing is all about being sensible, conserving energy, never doing too much, avoiding ‘boom & bust’. It’s really hard to do. After weeks of being fit for nothing (remember the not being able to sit up time) I was able to do things. Hurrah!

There was a major clear out of Girl2’s bedroom. Apparently nearly 12 year olds going to secondary school don’t need a cupboard full of Build a Bears and random dolls. Or the picture books her mother just couldn’t get rid of years ago. I was able to cart bags of things to the garage for the charity shop, and fill the wheelie bin with rubbish, but Spurs Fan had to lift the rest into the roof space. By the time I was done I could hardly lift my arms to the washing line. Then, too late, I rested.

Yesterday Ditzy and I  got dressed up, had lunch out and collected a charity donation for the PSP Association. Thank you, fundraising engineers. I completed the current module for my Stanford on line course, Patient Engagement Design, and complained a bit. The course isn’t quite what I thought it would be- more about designing technology to make money out of engage patients than designing effective patient engagement- but I’ll give it another week or two before having a full on rant.

Then, (yes, there’s more!) we went out. Spurs Fan and I, alone and unaccompanied. We were early, because the early oldie with a stick gets a seat. We went to see First Aid Kit in concert, and they were fabulous.

Swedish sisters with wonderful voices and sensible shoes. One with a frock and fringe, the other with endless limbs and shiny shiny Abba type trousers. We expected harmonies and loveliness, we also got hard rocking, Jack White type badass (but sort of sweet) moments.

I’ve been listening to their albums for a while, singing along in the car, or while doing other things. Last night I heard lyrics I hadn’t noticed before, and “I’d rather be broken than empty” worked for me. I’d rather recover than never try. I’d rather be frustrated than uninterested. I’d rather need to sleep than be bored stupid. I try not to be silly about it, or push myself beyond all limits, but I’m not going to lie back and watch daytime TV if I can avoid it. Sometimes that’s what I need and I retreat from the world, but I hate missing the chance to sing along. “Sing with me” they say. And so I do.

Today and tomorrow? Bed.

on not having a vote

I don’t live in Scotland. My opinion on #indyref doesn’t matter to anyone. But I have been fascinated by what I’ve seen of the debate.

Political debate that’s not about themmuns and whataboutery. Politics without riots over how many days a flag gets flown. Articulate debate that engages the population, across all the spectrums, and includes 16 and 17 years olds. People in Scotland are debating the sort of society they want to live in, discussing the nature of democracy itself. Nothing is taken for granted. I’m more than a little jealous. Local politics is circular, self righteous and very frustrating.

At this stage the referendum is too close to call- a unique exercise, no guidance can be taken from previous voting. The percentage of the eligible population registered to vote is huge- 97%- all sorts of unexpected patterns can be expected.

Nobody knows what happens next. There will be change no matter what the result- Dave and his mates have promised it. Dave always does what he promised. A YES victory would be a remarkable achievement: a NO victory will seem like a close escape after the momentum of the last few weeks.

If I lived in Scotland I’d be pounding the streets, waving my stick at people. I’d have face paint on and carry a banner. I’d revel in the joy of literally wearing my political colours. I’d be well read and informed, and know something about economics. My opinions wouldn’t be vague and woolly and based on very little. I’d be confident and glamorous and thin from all the street pounding.

dog, Scottish flag

Instead I’ll be home, glued to the coverage, cheering on the Scottish people.

 

Disability Pride and all that

Even without a job to juggle, my diary fills up in random spots. I have 2 confirmed events for 2015, both on 22 April. Of course.

I was due to go to Dublin tomorrow, but the event  time was moved to 8am. Patient involvement in event design still has a way to go. Last night, I was offered a lift and was so tempted to take it, but Spurs Fan advised caution. He looked at the bundle of banners at the foot of the stairs and wondered about Saturday.

Um, yeah. Saturday.

Disability pride promotion


Disability Pride hits Belfast. A family festival to celebrate diversity in society and all people with disabilities. There’s a parade, concert, information stalls, retail tents, wheelchair fixing station, all the fun. NI Rare Disease Partnership (where I come in) have organised buses and livery for the parade and a stall. Overall, there will be hundreds of people walking, wheeling, dancing, wobbling or being bussed through the city centre, partying. The girls are preparing to spend Saturday afternoon (or at least 10 minutes of it) helping out at the rare disease tent. I’m not organising this event, but will be there all day, doing something with the banners, ticking people off lists, and looking for a seat. I’ll be celebrating, having fun and being inspired by the awesomeness of other people.


That’s a lot, but it’s not all.

A few weeks ago, Belfast Lord Mayor Nichola Mallon completed the ice bucket challenge for MND and other rare diseases, and then had us in for tea. Tea and nibbles in the parlour, chatting about who we are, what we do, how she can help.

Obviously the Lord Mayor can’t get enough of us, because the Belfast City Council based people from the parlour ‘do’ have been invited back, to the Installation Dinner. A fancy dinner in the City Hall, invited by the Lord Mayor. Get us. Of course it’s on Saturday night.

Can I potter in, grubby, smelly and carrying banners from the day?

Can I stay awake when I go home to get washed and changed?

Will I fall asleep in the soup?

And, does ‘Dress: lounge suit’ mean dress for going to a wedding, or a cocktail/ formal type frock?