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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who are you now and who are you becoming?

The Sunday paper is doing its bit to support my plans to read more this year. A long listy article on essential reading and a ‘Yes, that!’ piece, A novel approach to life

We all ask each other a lot of questions: “How did you sleep?” “Where did you go on your holidays?” But there’s one question I think we should ask of one another as lot more often, and that is:”What are you reading?”

When we ask one another that, we sometimes discover the ways we are similar; sometimes the ways we are different. “What are you reading?”isn’t a simple question when asked with genuine curiosoity: it’s really a way of finding out, “Who are you now and who are you becoming?”

I like to read- crime, humour, light romance, worthy fiction, memoir. From time to time I buy books I’d love to read but don’t have the concentration for (Richard Dawkins, Owen Jones and others who try to explain the world to us). I seem to live in hope that my brain will magically recover the power to read anything beyond short factual articles and easy reads.

Just this week I had to stop reading the beautiful Prodigal Summer by Barbara Kingsolver, its complexities too much for me right now. I will get back to it, eventually. (see above)

I enjoyed two humorous, twisty puzzly books: The Rosie Project by Graeme Simsion & The Last Honeytrap by Louise Lee Each of these is part one of a series. Series are good for those of us with addled brains- familarity helps- but much as I enjoyed these two, I know too well the disappointment of discovering the formula too soon.

What are you reading?

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.

telling tales: #invisibleME

As always, I need to manage my time and my health better. I’m busy or asleep- but it’s nearly rare disease day, so we should know to expect no better. I’m less concerned with conference detail this year- that may come back to bite me- but I’m doing assorted on line courses and preparing presentations for several events, so my brain is full.

I rarely do anything in the evenings. I flop in a heap beside the fire and snuggle little people or a little dog. Sometimes I read, mostly I watch TV. (What will I do now that Wolf Hall has finished?)

But Monday’s event was important, and local. I’m on the steering group for the project of which this was part- I didn’t want to miss it. It was an opportunity to chat to politicians, patients and policy makers about ME & fibromyalgia. All I had to do was blather to the folk I was sitting beside. They’d come to learn and I tried to help. Patients and carers told their stories, very powerfully. The emotion was clear. Invisible conditions, invisible people. It was moving and exhausting.

Health Minister & organisers
Health Minister & organisers

 

One man was overwhelmed and unable to participate. His wife tapped me on the shoulder.

I read his story to the audience. A story of many years, much expense, and little change. A story of worrying that his wife was dead in the bed. A story of staggering disbelief and arrogance from health professionals. A story of a family of warriors. It was an honour to share that. It needed to be heard, to be listened to and to be valued.

I tell the story of my mum at the start of every presentation. It’s why I do what I do. I’m looking forward to all the stories I will hear at our event next week.

Marie reminds us why it’s not just important to hear stories. It’s important to tell stories. It’s part of who we are, and how we heal. How we stop ourselves from staying invisible.