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.
Still Emily – Seeing Rainbows in the Silence
Interview by Julie King
Emily Owen is a Trustee of The Neuro Foundation and has a condition called NF2. She is a published author and inspirational speaker. Here she talks to Julie King about her latest book: her memoir, “Still Emily.”
Julie King: Emily, you must be really pleased with the response to your memoir: Still Emily – Seeing rainbows in the silence. It has received some excellent reviews and has had a profound effect on those who have read it; including myself, I might add. Why did you decide that now was the right time to share your journey?
Emily Owen: Basically, it was because someone at an event/signing looked at the books I’d already written and asked, “where is the one about you?” And I had to say “there isn’t one”. I’d said similar before but this time my head followed up by thinking, ‘perhaps it’s time there was….’
JK: Was it difficult to come up with the title “Still Emily”?
EO: Yes. I had no idea that thinking of a title would be the hardest part of writing the book. Well, not really but almost. My publisher and I settled on the main bit, Still Emily, fairly early on but then coming up with a subtitle was very difficult. We bounced ideas back and forth but nothing seemed quite right. Then one day, I received a text from my publisher. She was sitting in an unrelated conference in Ireland when, rather than taking notes, she messaged me her ‘flash of inspiration’ subtitle. I’m guessing her mind was not wholly focussed on the conference right then but that was fine with me. ‘Seeing rainbows in the silence’ fits perfectly.
JK: How did the design on the front cover come about and are they your eyes?
EO: The first cover suggestion was to have a photo of me. This suggestion was vetoed by me very quickly. I knew I wanted a rainbow on the cover but all the images I looked at were too twee and My Little Pony. I googled ‘rainbow images’ and scrolled down. In amongst them was the eye. So no, it is not my eye – would that mine were that beautiful! But, to me, rainbow colours in an eye conveyed exactly one of the themes of the book – looking for rainbows.
JK: How long did “Still Emily” take you to write?
EO: I had a first meeting on 9th July 2015, at which the publishers said they’d like the manuscript by November. I said no way, give me more time. The written contract arrived and in it, the deadline was (you guessed it) November. Figuring that if it wasn’t done, we could extend the deadline, I decided to try and finish by November – I work better to deadlines. I was on track but then my grandfather was taken very ill, eventually passing away, and the publisher kindly gave me an extension. So I actually finished and submitted the complete (unedited) manuscript on 11th January 2016. Every day during the weeks I visited my grandfather in hospital, he grew weaker and weaker until he could hardly speak. But he always managed to ask me, “how’s your book coming along?” Always one of my biggest supporters, he never saw the completed book but, when I held a copy of it for the first time, my heart whispered to him, “well, Grandad, here’s your answer.”
JK: In “Still Emily” you write with heart breaking honesty about the effect that NF2 has had on your whole family. What does your family think of you sharing such a personal story?
EO: They actually think I should have done it years ago. I asked them to read through the final draft before Still Emily went to print, just to check they were happy. If they had not been ok with any of the content, I would have deleted it immediately. They are very proud of me and very supportive – they turned up in force at the launch of Still Emily, although the children didn’t really understand: Earlier that day, my two year old nephew told me that he was going to a book launch later and he wondered if I’d be there?!
Without my family, my story would be very different. They are my rock. They’ve lived life with me. The dedication page of Still Emily reads, ‘For my family: when I saw one set of footprints, it was then that you carried me.’
JK: The official launch of “Still Emily” in Leicester was a great success. Do you enjoy the promotional side of being an author?
EO: I love speaking, meeting people and chatting, so yes I do quite enjoy it. So long as I remember to have a blank notebook handy, just in case someone is too difficult to lip-read and I need them to write things down for me, anyway. I don’t enjoy seeing photos and watching videos of myself afterwards, though. In fact, I hate it, but it is a bit like picking at a scab – it’s awful, but I can’t not do it!
JK: What are your plans for the future? Do you already have your next project in mind?
EO: I’d like to carry on writing and speaking, I have a few potential things in the pipeline. I shall continue with my blog.
A friend and I have a saying: ‘Let’s be flexible within the plan.’ This is due to the fact that one or other of us often has to rearrange coffee or dinner or whatever but I think the sentiment applies to NF2. Certainly it does to mine, anyway. I am someone who loves to have plans but I have learned that NF2 requires me to be flexible and not set my plans inextricably in stone. Flexible metaphorically speaking, I hasten to add; if you’ve read the book you’ll know that gymnastics and I do not mix….
Reviews of Still Emily
“A beautifully written, emotional and inspirational story. Highly recommend this brilliant book.”
“ ‘Still Emily’ is one of the most heartbreakingly honest books I have ever read. Emily bears her soul as she takes us on her personal journey into silence. This book is about never giving up, no matter what life throws at you; it is about finding rainbows and it is about love! Emily’s writing is truly inspirational!”
Still Emily is available to purchase here.
With thanks to The Neuro Foundation and Julie King for permission to share this interview, which first appeared in The Neuro Foundation Summer 2016 newsletter.