Yesterday was a dozy day. I tried getting up, but retired defeated, after eating. Eventually I showered, put on clean pyjamas and made it as far as the sofa, accessorized with hot water bottle and little old lady rug over my legs.
Today was to be better. I had plans. But time has this habit of vanishing. It’s lunchtime and the cupboards are not cleaned, the ironing isn’t done, tasks from 6 weeks ago sit on the table, shaming me. There are things to be doing, but I’m faffing on the internet. In my dressing gown. If the sun shines I notice the grubby windows. I brought a cake stand to a coffee morning on Saturday and it needed a good clean before we could put the buns on it. Luckily, I’m not proud- I wasn’t remotely bothered when I could have been mortified in front of the Irish dancing mummies. (I’d never cope if I was a competitive Dance Mom).
When I wasn’t doing any of the many things that I need to be doing, I read Emma’s post and recognised the feelings. You probably do too.
Then, on twitter, a moment of sanity. Words of wisdom from @SharonOwensAuth- housework all on one day, another day for writing, a day for other things, time to do nothing at all. Sometimes we just need somebody to point out the obvious. Little steps to make the chaos a wee bit more manageable.
Somehow we escaped having to dress up for world book day this year. Girl1 got an hour of silent reading in school (a huge treat for some; not so much for her) while Girl2 made her classroom door look like a book cover. Unfortunately no photos are available.
On the day I thought I’d take a look at the unread books on my shelves…
Then there’s the Kindle. It holds dozens of unread books, as well as the finished ones. I’ve taken to reading on my phone too- there’s always at least one book on the go.
Of course, there’s no chance of the piles shrinking. It’s against the law to leave a bookshop without at least 3 new books to add to the bundles, downloads sneak on to devices and the Post Office collection spot is used to holding deliveries of second hand paperbacks.
Some of you do much more than read. You write poetry, short stories and novels. Several of you have published real books. Actual hold them in your hand books, that I am lucky to own. I get a flush of excitement when I see an author’s name and think “I know her”. I feel the celebrity stardust from here.
Our bloggy buddy Andra Watkins has taken a book launch to a whole new level, and I am loving it.
If you know Andra (and if you don’t, you really should change that) you’ll know that her writing is full of power, energy and humour. Just like herself. She is creative, and a builder of community. She challenges herself, shares the adventure and the learning.
To Live Forever has a powerful story, a contemporary setting and totally believable characters. it is fantastical, but I believed even the most improbable events. Bloggy buddies, I actually gasped at one point. There may also have been sniffling. Meri and Em travel along the Trace finding support, challenge, each other and themselves. I loved it. You should read it.
To mark the launch of the book, Andra is up to something remarkable. She’s walking the 444 mile length of the Trace, 15 miles a day. This is not a gentle amble along a paved path, more a hefty hike through the forest. For 444 miles. being Andra, she’s bringing us with her. Daily video and written updates, and answering reader questions. The trace is a character in the novel- we’re getting to share that, to recognise locations, to visualise Meri and Em just there.
Did you notice? That’s our Debra whose question Andra is answering. It’s exactly the sort of question I’d expect from Debra- even in the wilderness, making sure we look about us and appreciate what’s going on.
When I talk about rare disease issues, I always give a bit of personal context. The issues I raise and the reflections I make are only effective because they’re based in the family’s experience. Me pretending to be a confident lecturer only works because I spent the time being lost and bewildered, battling for, and with, Herself. I start with a picture of my mum, looking happy and well at The Brother’s wedding (the crutches are hidden- the progression was underway but we didn’t know it).
I talk about all the things we learned- the limits of medical expertise, wheelchairs, therapists, the dread of a late night phone call.
But we also learned about the power of someone saying “I know about PSP. I can
help.” A connection. Someone who understood the issues, and who walked with us.
We learned the power of asking questions, and of being asked.
I show a slide of two Edwardian ladies, walking sensibly side by side. They have hats and gloves and look like they are good living. Just like their real life counterparts…
I have made real live actual friends through blogging. The bloggy buddies I’ve met, I feel like I’ve known for ever. Most of you I may never meet, but we connect, we are friends. I was delighted when Debra from breathelighter contacted me last week. She’d come across a film, thought about rare diseases, thought about me. How cool is that?
The film has it all- cute child, rare disease, a wonderful dog, love, friendship. The power of connection. The importance of having someone to walk along side, to share the load. Love. Be prepared to sniffle when you watch it.
Let’s not forget to make room in our minds and lives for those who aren’t having the clichéd holiday time- those grieving, those facing health or financial problems, those without family or warmth around them. Let’s not let them be forgotten. Let’s be there, walking alongside.
You are not alone in this.
Beannacht / Blessing
On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.”
― John O’Donohue, Anam Cara: A Book of Celtic Wisdom