the big list #read4saca

It’s been a summer of rain, gadding about, enjoying a new caravan at the seaside, & recruiting staff for the charity. (Big step, big excitement. Why yes, that does add to my anxiety.)

And reading. I’m usually reading. It keeps me sane and distracts me from the world. I’m less happy when the brain fog won’t let me read, This year I decided to put my habit to some use. My friends at SACA, a charity supporting people living with the rare conditions syringomyelia or Chiari syndrome, were asking people to participate in a marathon, no sweating required. Read 26 books in 12 weeks and either gather sponsorship or make a donation. In fairness, I couldn’t ask anyone to sponsor me for something I love to do, that sustains me, so I made a donation when I got to September.

Then, M, more organised than I, asked if I’d share my list. A list. Why hadn’t I made a list? Luckily, I’d done a lot of the reading on Kindle, and could count back. There were paperbacks left in holiday houses or airports that I can’t remember. Those I recall got added, and I made it to 26. I completed a marathon! The runners among you may stop laughing…

In no particular or predictable order

Skintown by Ciaran McMenamin

Eleanor Olyphant is Completely Fine by Gail Honeyman

Swing Time by Zadie Smith

Last Rituals by Yrsa Sigurdardottir

The Other Us by Fiona Harper

Frozen Moment by Camilla Ceder

Heaven Field by LJ Ross

Rather be the devil by Ian Rankin

Miller’s Valley by Anna Quindlen

I See You by Clare MacIntosh

Falling & The Beach House by Jane Green

Paper hearts and Summer Kisses by Carole Matthews

Dead Men’s Bones & Written in Bones by James Oswald

The Janus Stone & The Crossing Places & The House at Sea’s End & The Chalk Pit by Elly Griffiths

Summer at Bluebell Bank by Jen Mouat

The Gingerbread House by Kate Beaufoy

The Girls by Emma Cline

How to Stop Time by Matt Haig

Meet me at Beachcomber Bay by Jill Mansell

The Pact by Catriona King

Truly, Madly Guilty by  Liane Moriarty

The Other Mrs Walker by Mary Paulson Ellis

HellFire by Mia Gallagher

Some of these were happy finds as I browsed in bookshops, some were long awaited, some simply cheap. I discovered new-to-me writers and revisted the familiar. There’s gritty crime, fluffy fun romance, and heartbreaking drama. I actively disliked only 2, and one of those was a bookclub choice.

What have you been reading lately? Any recommendations?

 

If you’re motivated to read, sponsor or donate, the #read4saca challenge is accepting donations until the end of September. They’d love to hear from you.

 

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starting over

The holidays are finishing, decorations are waiting for the boxes, schedules are reappearing from under the mince pies and wine.

There are no ‘resolutions’. We muddle through and do the best we can, even if we sometimes try to shift our focus to different aspects. There’s no need to resolve to do that; it’s “do or do not”.

Our ‘all the good things’ jar has started re stocking. I love this random collection of  notes about good events gathered up during the year. We had several notes about Girl2’s netball team winning a regional competition, a note of clothes drying weather last March, and a reference to the circa 1985 souvenir from Knock sunvisor we were gifted during the summer. Not what you’d find in most of the reviews of 2016. We can go for ages without adding things, and some of the stuff reflects otherwise forgotten moments (Speccy lost some weight!!!) causing New Year hilarity.

I have a pristine work book ready to start the year. I love new note books, and always aim to be neat this time. That never works. I’m incapable of neat. Neat doesn’t have arrows and squiggles to join up thinking, or asterixes to remind me of the important stuff. When I grow up I’m going to take neat notes on a tablet, and know what they mean the next week.

Our charity has a million tasks to complete in the next few months, and, prior to the break I was feeling overwhelmed. How could we do it all? What would happen if we couldn’t meet the challenge? What if my brain stopped working and I couldn’t be an effective Chair? I’ve spent some time sleeping and reading and hanging out with my people and those issues haven’t crossed my mind. Now they’re back and I know I can handle them, with a bit of planning. I need to switch off. I need to read more books, listen to more music, take more walks, if the overwhelm is to stay away.

I can do that. Reading is good for me.

Happy 2017, bloggy buddies. Plan to be good to yourselves.

it’s not rare to have a rare disease

My volunteering life is about rare disease; I know the stats, I know some of the people. When I have brain power, a significant portion of it goes to scheming and plotting and connecting and advocating and talking about rare disease. It’s not an abstract, it’s the reality of people’s lives. It’s the kick in the gut when we see a family on a flight, on their  way back from Great Ormond Street, or we spot the specialist wheelchair in the shopping centre. It’s the reiteration of experience when we listen to people tell their stories, which could be ours. It’s the blow when there’s another diagnosis of something complex or terminal. It’s the shock when we lose one, however predictable that loss.

We lost one tonight.

My Uncle Paddy. With Olive for over 60 years, father to the Incredible Singing Cousins, grandfather to The Next Generation. A kind, gentle, and much loved man.

He had Progressive Supranuclear Palsy, the rare neurological condition that killed his sister, my mother Herself, and a family friend, Kathleen. Three people from the same parish, all connected, all with the same rare condition which is difficult to diagnose, and for which there is no treatment or cure.

I can rant about many things. I can talk sensibly about rare disease issues. But, it seems, not tonight. Tonight, I’ve run out of all the words I use. Tonight, I miss my people. Tonight , I grieve with my people.

I had plans

Yeah, well, we know how that goes.

This plan was to go to a conference, abroad. Experience had taught me not to go on my own. This time there were to be three of us, sharing the load of worthy talks, finding our way and having fun. We produced a poster, like proper health conference people. I had plans of mingling and learning, followed by meandering happily through cobbled streets and a chance to explore Brussels.

I had concerns, of course. It would be a huge energy commitment. Could I realistically do that and recover before 2017? Part of my enthusiasm, undoubtedly, was to overcome the many minor traumas of my last conference travel attempt. I wanted to participate without the melodrama.

 

 

And then a headcold turned nasty, despite me trying to kill it off with days of medication. I was floored, sneezing & spluttering. My inner ear protested crossly when I moved my head. My nose, well, you can imagine… The cough still sore and tickly, its full joys yet to come.

Travelling, mingling, thinking- all given up for hot water bottles, cold ‘fixers’ and even more time in bed than usual.

Right now, fellow volunteers are doing their thing- learning and chatting in a beautiful city. They’ll talk about their experience, our charity, about patients changing policy, about working with pharma companies, accessing clinical trials and treatments, about impact & funding, and making a difference.

I am the great unwashed, snuffling on the sofa. I’m never going to be a jet setter am I?