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0 In Blog/ Writing

Tableu-ing Together

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Stratford-upon-Avon is a favourite place of mine.

It was there, back in 2001, at the Royal Shakespeare Theatre (RST) – another favourite place of mine – that I nearly missed checking one off one of the items on my bucket-list-before-I-go-deaf.

If you’d like to know why I said ‘nearly missed’, see Still Emily.

Recently, I was at the RST again, to see a performance of Antony & Cleopatra (I recommend it).

I took my seat and was pleased to note that the screen displaying captions (text of speech) was directly opposite me on the other side of the stage.

I’d have a perfect view of the captions and the actors.

And so I did.

Until scenery rose up from the stage and blocked my view of the screen.

Well, half my view of it.

I could see half the words, but playing ‘fill in the blank’ when it comes to Shakespeare is a bit beyond me…

Thankfully, there was another screen.  It was behind and to one side of me, so involved me craning my neck to see;

but I could see.

During the interval, I mentioned to one of the ushers that in future perhaps they should not allocate my seat to people who need to see the captions.

She decided that ‘in future’ should be now and set about finding alternative seating for the second half.

This seat was in a much better location and the screen was only occasionally (and fleetingly) obliterated by scenery or actors.

Overall it was fine and I was able to enjoy the performance.

The RST ‘fixed’ what they could – moving seats – but, when they couldn’t fix it (the fact that I’d had to crane my neck to see the screen couldn’t be changed), they still stayed around.

They discussed it with me.

Despite the fact that they couldn’t change what had happened.

Maybe next time I go and see a play, I’ll be able to see it all easily.

I think so, because people took time to stop.

Took time to try and understand.

 

Another theatre trip springs to mind:

It was years ago and I was not planning to attend the performance.

I was planning to stay home alone, nursing my pain-filled and (at the time) sight-less eyes.

But, at the last minute, I felt the sofa move as my Mum sat down beside me….

‘What are you doing?’ I asked. ‘You’ll be late.’

‘I’m not going,’ she spelled on to my hand.

’What?! Why not?’

‘Because I want to stay here with you.’

’But why? There’s no point.  I’m just going to be sitting here.  You might as well go.  There’s nothing you can do to sort this.  You can’t help me.’

‘Well,’ she said. ‘I am staying anyway.’

And she did.

She didn’t change anything.

She didn’t fix anything.

She just stayed.

As she sat beside me, I realised that I had spoken the truth when I said that she couldn’t sort my eyes out.

They remained sore and unseeing.

I also realised that nothing could have been further from the truth than my words,

‘There’s nothing you can do to help me’.

(Taken from Still Emily)

A moment of pausing,

a time of just being there,

a ‘tableau-ing together’ in the midst of life

speaks volumes…

Image result for be there snoopy

 

 

 

2 In #everydayrainbows/ Blog/ Writing

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!

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.

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.