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emilyowen

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

 

 

 

4 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!