Helen Fowler: The ordeal of theatre with MS

BALANCE remains elusive, but I put one wobbly foot in front of the other and make my way down to the dress circle in Edinburgh's Festival Theatre.

Helen Fowler. Picture: Julie Bull

As we go, I pause frequently and cling onto the arm of my friend. Nobody watching me would think I was “okay”. I feel all too aware of how shaky my Multiple Sclerosis (MS) is making me.

We make it to our seats; I’m grateful the ordeal of the steps is over. And I’m already thinking about the energy boost offered by an ice cream at the interval.

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In front of us on the stage lies a vast grid. Its exacting lines and squares serve as the stage set for this production of Mark Haddon and Simon Stephens’ The Curious Incident of the Dog in the Night-Time.

We’re here to see this play about a teenaged boy who has what he calls “Behavioural Problems”. Who doesn’t have behavioural problems? Others are more chilling, talking about the kid having Asperger’s Syndrome.

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It’s only from talking with my friend that I learn the grid mirrors the way autistic people think. It’s a bit different to “mainstream” thinking; they prefer to think in patterns. Get things mapped out clearly. Maybe life feels safer that way? Can’t help identifying with them on that.

Life does feel more manageable when laid out in understandable patterns. No scary hidden meanings. No trying (or failing) to understand what people really mean. No worrying about whether we’ve understood what is happening.

As author Mark Haddon writes: “Curious is not really about Christopher at all. It’s about us.” All of us. Even those of us lucky enough not to be living with these difficulties.

Maybe the truth is that we are all of us are a bit different. All of us at times have felt like outsiders. All of us have felt betrayed, like poor Christopher does.

I don’t just feel rubbish about getting sick with MS – the pain, the immobility, the daily (and often demeaning) struggles. I feel like it’s all my fault. I blame myself when my body won’t behave the way I’d ideally like. I fear that people at the theatre might judge me for my lack of balance, might even think I am drunk (I’ve had nothing stronger than lemonade).

So one of the best bits was not just crying with relief and happiness when Christopher discovered he’d got the top grade possible for his A Level Maths. It was seeing that everyone else felt the same way too; there was a standing ovation for all the cast as they took their curtain call.

I was wiping away tears to see properly. It’s hard to be absolutely sure, what with most of us being grown-ups - and British too - but I suspect most of us felt equally moved. A lot of surreptitious wiping of eyes was happening.

And that gave me faith in people, seeing almost two thousand of us moved to tears by the struggles of someone who isn’t quite “normal”. But who still has the same needs to belong and fit into his community as the rest of us.

When I don’t try to walk or lift anything heavier than a tea cup, I like to think that I look fairly “normal”. And even now, almost three years after my diagnosis, I can sometimes forget all about the stupid MS.

Then I struggle to get up from a chair – and I remember. The sudden urge to go to the loo – will I make it in time? - can be another reminder.

But maybe none of us are entirely conventional. We’re all a bit different. And, increasingly, more and more people are supportive of these differences. In themselves. And in others too.

Helen Fowler is a journalist and MS campaigner from Edinburgh