Between the ages of about 6 and 10, May Day (otherwise known as May 1st) meant one thing for me: Maypole.
No, I don’t mean the nickname occasionally given to me in childhood, due to my height. That was more often ‘beanpole’, but anyway…
Dancing round the maypole was one of the highlights of my year. I was captivated by the different coloured ribbons that, as my classmates and I danced and weaved in and out, changed from hanging forlornly down the pole into a beautiful pattern. Making rainbows.
After I was 10, I no longer danced round the maypole (perhaps I was too much of a beanpole by then), but every year I remembered happy times of May Day maypole dancing.
Until the May Day when I was 16. That May Day became Mayday. ‘Mayday’ = a word used as a distress signal (https://en.wikipedia.org/wiki/Mayday).
I was certainly distressed that day. I was lying in bed, not allowed to move, awaiting the brain surgery I was booked to have in a few weeks’ time.
As I write in Still Emily, the doctor ‘cleared his throat and gently broke the news. News I hadn’t been dreading, simply because it had never crossed my mind. I had two large brain tumours. So large, they were about to kill me…’
‘…just as he was leaving, he put a name to the diagnosis.
I had a condition called Neurofibromatosis Type 2.
Neuro… what? I couldn’t even pronounce it, let alone spell it.
And yet I had it.’
May Day became Mayday.
The ribbons and strands that made up my life unravelled in an instant.
Maypole in reverse.
About 30 years after I first danced around a maypole on a gloriously sunny day, fascinated by the coloured ribbons making rainbows as they merged together, I wrote
‘There are always rainbows somewhere in the rain.’ Still Emily
Neurofibromatosis is not an easy path, for me or anyone else affected by it. There’s lots of rain.
But the rainbows are there, too, weaving into patterns I’d never have dreamed of.
If you’d like to know more about Neurofibromatosis in general, here is a good place to start: The Neuro Foundation
If you’d like to know more about my own experience of Neurofibromatosis, you can read my story here: Still Emily
May is Neurofibromatosis awareness month.
The very fact that you are reading this has raised awareness. You are already well ahead of most of the population: you’ve now heard of Neurofibromatosis.
I’ve only ever posted blogs on my own site.
Until now: I Have A Confession To Make
The mail arrived.
And it wasn’t all ‘buy one get one free’ pizza offers.
A medium sized, innocuous looking envelope was among the pile on the doormat.
I didn’t know what it was.
Or who it was from.
But it didn’t look like junk mail.
So I saved it until last.
It’s a habit I have, every time I get mail.
Get the rubbish out of the way.
Consign it to the bin (there’s only so much pizza I can eat) and then move on.
Which, today, meant that I finally opened this:
I had worked a little on a couple of the stories found within the pages of this book.
And it was a privilege.
A massive one.
Here is real life.
Stories which opened my eyes to the world of addiction.
Stories of existing in the depths of despair.
Of horrors encountered there.
And the word ‘horrors’ does not cover it.
Stories that one moment made me smile, and, in the next, moved me to tears.
Stories of catching glimpses of hope in darkness.
And refusing to look away.
Stories of daring to believe.
Daring to believe that all the rubbish really can be taken away.
Really can be consigned to the bin.
Stories of having courage to work through difficult stuff.
And courage to move on.
Stories of learning that life does not have to be life-less.
Stories of finding faith.
Of reaching for a God who whispers into the fragments:
“Broken lives can be fixed, you know…”
If you’d like a copy of Fixed Lives, you can get one here.