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The Month of May

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…’

Mayday! Mayday!

‘…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.

Mayday.

But the rainbows are there, too, weaving into patterns I’d never have dreamed of.

May Day.

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.

Thank you!

1st May 2017 By
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0 In Blog/ Writing

Somewhat Obscured

You may remember that, some months ago, I wrote about going to choose a new wheelchair. (Click here.)

And how I wasn’t overly pleased about having to choose a wheelchair.

But I could see it was sensible.

So I did it.

I ordered one.

And then I put it out of my mind.

Even when the ’ready by’ date had been and gone, I didn’t chase it up.

Out of sight, out of mind.

And then the appointment came through.

The date to try out and collect my chair.

I determinedly called to mind all my previous ‘rainbow wheels’ optimism, but found it strangely lacking.

Oh, it was easy to see rainbows in things like the fact that I live in a country where healthcare is very available.

I’m always thankful for that.

But the rainbow wheels had become somewhat obscured with the passing of time.

 

Nevertheless, I went and sat in the chair.

Wheeled it around.

Hollowly, but at the same time genuinely, admired the workmanship that had gone into it.

It was state of the art.

Then, as I spun round, it was almost like going back in time.

My spin stopped as I was facing a wall.

The wall where I’d seen the rainbow wheel last time.

The wall which, this time, was empty.

 

“Oh,” I said to the salesman, “The wheel’s gone.”

It turned out they’d moved it to another wall.

Carrying on the conversation, I asked whether many people chose the rainbow wheels?

“No, not many.”

How many?

“Well, umm, one,” he said, looking at me rather significantly.

I expressed surprise.

Why wouldn’t people choose rainbow wheels?

He laughed, slightly ironically.

“Emily, ‘rainbow wheels’ are not really a thing…

The multi-coloured wheel is actually there for people to choose one colour for their own wheels.

That’s why your wheelchair took so long to be ready.

It turns out that it takes more time to make a wheel with lots of colours in it.”

It takes more time to make a wheel with lots of colours in it.

A rainbow wheel.

And yet he’d done that.

He’d made extra work for himself.

For me.

 

Sometimes it takes time to find rainbows, too.

 

As my hands pushed my colourful wheels out of the door, rainbows were no longer somewhat obscured.

Shining through rain?

Yes, maybe.

But there all the same.

‘I choose rainbows.

Every time.

Even when they are invisible, I carry on looking.

And I will find them.

I do find them.

Because there are always rainbows somewhere in the rain.’

(Still Emily)

 

Later that day, I was at a Christmas Tree Festival.

I don’t think I’ve ever seen so many Christmas trees in one place.

They all looked lovely, each one differently decorated.

It was a cold, dark night when I arrived.

And this is the very first tree I saw:

rainbow-tree

A rainbow one.

6th December 2016 By
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2 In Blog/ Writing

Getting to Christmas

Will you do a pass-the-parcel?

It was a text from my sister, asking me to prepare the game for my niece’s birthday party.

In my family, pass-the-parcel is my job.

Every birthday (and we have a lot of birthdays).

Every Christmas.

I wrap layer after layer after layer.

And I love it.

One Christmas, thinking to expand my festive contribution, I volunteered to make the mince pies.

Politely, although less politely as Christmas-time wore on, everyone munched away.

The next year, the family unanimously asked me not to make the mince pies.

A couple of weeks ago, my sister celebrated her birthday and, true to tradition, I prepared a pass-the-parcel.

As I carried it to the room where the party was being held, I bumped into my three year old nephew.

Seeing the parcel in my hands, his eyes lit up:

“Are we playing pass-the-parcel?”

When I told him that we were, he very confidentially said;

“We need to open it carefully because there will be a surprise for us to look for in each layer.”

Well, I knew that.

I put the surprise in each layer.

But it got me thinking.

“There will be a surprise for us to look for in each layer.”

What he hadn’t said was;

“There’ll be a prize in the middle.”

He knew there would be a prize.

But he knew that getting to the prize was special, too.

It made me think about Christmas.

25th of December.

The ‘prize’ we rush towards and focus on.

So manic and busy that perhaps we forget that actually getting to Christmas can be special, too.

“We need to open it carefully because there will be a surprise for us to look for in each layer.”

Or maybe a surprise to look for in each day.

A surprise we need to be careful to take time to notice.

Or we’ll miss it.

I had a surprise today.

My niece came in from the cold, pink cheeked, with something she’d collected for me.

A surprise.

Some dead leaves.

I said, “thank you,” and turned to carry on with what I was doing.

What else was there to say, really.

But, as I turned, I saw that she was taking those leaves and arranging them into a bouquet.

I paused and watched.

Each leaf was individual and beautiful,

arranged with precision and care,

and I’d nearly not noticed in my rush to carry on with what I was doing.

By the time I was presented with my bouquet, I saw how special my surprise actually was.

Because I’d taken time to notice.

Or perhaps to pause in our pursuit of being ready for December the 25th.

Of having the shopping done and the presents wrapped.

And just take time.

Time to look for special surprises along the way.

 

1st December 2016 By
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2 In Blog/ Writing

Granny’s Final Words

“I think the next one should be Esther.”

I held my Granny’s hand as I bent closer to the hospital bed.

“Sorry, what was that?”

“The next one should be Esther.”

And, once again, Granny lapsed out of consciousness.

I sat back down and looked at the hand clasped gently in mine.

Hands were always special to Granny.

I don’t know why.

But she had many hands on the walls of her home.

Pictures of hands, that is.

Perish the thought that even so much as a person’s finger should make contact with the wallpaper.

Looking back, I realised that Granny’s (real) hands had been there for me my entire life.

Helping me through my first steps, my first day at school, to ride a bike.

Nursing me through hospital and recuperation.

Many times.

Clapping me on through concerts, sporting events, exams results….

A little over two years ago, those hands clapped as my first books were published.

The first two books, 30 Days with Mary and 30 Days with Elijah, came in September.

Granny eagerly devoured them.

Her hands turned their pages.

Picked up a pencil and made notes.

Things she wanted to ask me.

By the time 30 Days with John came, just a couple of months later, Granny was ill.

She’d been diagnosed with aggressive cancer.

Which is why I was sitting beside her hospital bed.

My gaze travelled from our joined hands and rested on her other hand.

Which rested on a book.

My third.

It had literally been released that day.

Well, not even released yet, but I had some pre-release copies.

And I’d taken the first one straight to Granny.

Unsure whether she’d register that I was there, let alone the book, I placed it under her hand on the bed sheet anyway.

After a time – perhaps it was hours – Granny opened her eyes.

She felt something beneath her hand.

And her eyes lit up for a second as she realised what it was.

She drifted off again.

After a time – perhaps it was hours – Granny opened her eyes.

And that’s when she spoke:

“I think the next one should be Esther.”

Almost the last thing Granny ever said.

Fast forward a couple of years, and it was my turn to pick up a pencil.

Well, a pen.

To sign a contract.

For my next two books.

20161011_155104

Granny thought the next one should be Esther.

And it will.

30 Days with Esther will be published by Authentic Media in 2017.

As will 30 Days with David.

8th November 2016 By
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