wp_20161116_19_17_00_proEach year my partner and I like to see what is showing at our local Arts Centre. The Guildhall in Grantham.  If the truth be told it’s more me that organises these sort of events but that’s purely because he’s normally busy at work.  Once I tell him what the plan is he’s more than happy to go along.  In fact, I know he enjoys it.  Enjoys the new experience.  I’m really confident that more people would enjoy local theatre but I kind of guess this day and age many are too busy looking for the next big event, the next big concert, to see what is exactly on their doorstep –  the local theatres with smaller budgets can’t easily publicise and then it appears that they are overlooked.

Last year, my partner and I watched ‘Playing Maggie’  There was probably a dozen people in the theatre.  I’m not a Tory voter myself but the town I live in is a Tory town (not calling the town.  I like the town I live in, we’re quirky with lots of history. It’s just my views tend to differ) – I expected it to be packed out.  But it wasn’t.  Again, down to lack of funds and publicizing I dare say.  I chose to go along because I always think it’s a good idea to expand your mind and look at both sides of the story. And, I wasn’t disappointed, it was a marvellous one man show.  A man playing ‘Maggie’ he was fun, he was witty and he put across both sides and my partner and I learned some relevant historical facts.  To this day I don’t know why more people were not at that show.

It always seems to be this time of year when the shows are on at our Local Theatre.  Local Theatres don’t normally just have shows from local dramatists, far from it.  ‘Playing Maggie’ was a touring show.  As was the show we went to watch this year.  ‘Getting Better Slowly.’  A tale created by a young man in his twenties who was struck down with Gullian Barre Syndrome (GBS).  One day a healthy young man, out with his friends, dancing and drinking and enjoying his life.  The next day struck down with a syndrome that started paralysing his entire body.

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I’ve spoken in the past about my own difficulties with an auto-immune disorder (complete different one).  They normally start with a virus and your immune system becomes confused.  The immune system attacks the virus, is successful in fighting that virus but once the virus has gone, your immune system is still fighting something that is no longer there.  In my case, fighting healthy joints, trying to destroy healthy joints by causing immense pain.  In his case fighting his healthy body, causing severe pain and shutting it down to the point of paralysis – how extremely frightening.   I too was in my twenties.  Although different neurological problems there was so much I could relate to during that perfomance.  His paralysis came on immediately, my own meant I was walking like a ninety year old woman and could hardly pull myself off a toilet or open a door handle.

The feelings of ‘Why me?’ I’ve eaten well, I’ve exercised, I’m not overly unhealthy in my lifestyle, I’ve worked hard, I’m a good person.  But illness doesn’t always choose who it is going to strike.  It just strikes and for some it strikes with a vengeance and suddenly. It never discriminates.

And that’s often the biggest battle and hurdle.  It certainly came across in the play.  It’s not so much your physical symptoms, it’s how you’re mentally going to deal with it, deal with the loss of what you were and fight it.  It takes an amazing amount of strength and one the actor portrayed.  The actress alongside him had never suffered but it was clear she’d put that research in to bring across a jaw dropping performance.  They oozed chemistry as she played the part of the menacing disease.  Putting him down at every hurdle and showing us exactly the points that she was going to attack.  The actor on the stage took the audience through the stages of illness and recovery.  It was moving as it was clear his tears at times were real tears.  Disease does that, once you’ve recovered, it leaves deep scars, you never forget those feelings.  The despair once it strikes, the loss of dignity as you can no longer do things by yourself – even wash or look your best.  The feelings that the disease is laughing at you straight in the face.  The feeling of wanting to be normal again.  Then the slight hope that you’re going to recover, then the feelings of anger and how you’re going to fight it.  The fight, the win, the fear it’s laying dormant – thanks to medication.  But the fear it could come back. I know that fear, I’ve fought mine twice.  Then how you view the world with fresh eyes and be happy with your lot.  Then the realisation that you can’t just be happy all of the time.  Jobs, bills have to be met.  In my case children to be provided and cared for and various other things I’m still sorting.  The feeling you have to get up and get on.  How you look normal again but inside the disease is invisible and you’re still recovering but people can’t see it.  They can’t understand the fatigue.  I understood and related to every word.

I particularly enjoyed the moment in the play when he said he’d never claimed any form of disability money.  Neither did I.  Then the moment he said “I hate Job Seekers’ and how he showed a brief part of what it is like claiming Job Seekers and the unfair system and the snooty clueless JSA staff.  The moment he said “I never claimed disability, but even if I wanted to I bet I wouldn’t get it now.” So keeping with the times particularly as we’re currently hearing about ESA payments being cut by £30 a week.  Unfair when you have the handicap of disease and discrimination to hold you back.  And you don’t want that, you just want to be normal.  Would you rather be ill and get money anyway?  Or would you rather be contributing?

The audience was bigger than ‘Playing Maggie and at the end the actor took time to sit on the stage and answer questions.  Questions about the disease, the creative process, the research.  Alongside him sat the actress and also the charity ‘Gains’ who help people with neurological illnesses.  Again, this was a charity I had not heard of and I’m sure in my darkest moments they could have offered myself great support.  They’re a charity I’m definitely going to contact.  I enjoyed his interaction with the audience.  I like writing so appreciated the information on the creative process. I’ve been ill so his talk was informative.  It was clear that many themselves had suffered with the awful syndrome or had relatives who had suffered.  Probably why during the performances many had held their breath and there were many stunned silences.  My partner held my hand throughout.  Because although he hasn’t got any type of autoimmune disease, he’s been with me through the second fight until I too ‘got better slowly’ and it is a slow process from months or in my case – years!!! He said to me at the end:

“I have greater understanding of your struggles, I’ve always tried to understand but now I have greater understanding.  You also had to do that with three children, not taking away from his story, it’s powerful and he’s strong, but you didn’t just have yourself to think about and you went through and have been through numerous other problems.  Your story is huge, you need to write it.” And I will.  Art is powerful in any form at spreading awareness.  But I replied to him:

“I’m glad I had my children because off the other side that young man might have thought in his moments of despair that all of that future would be taken away.”

Which brings me back to local theatre and date nights.  Don’t dismiss them. They’re a reasonable priced night out and before the show my partner and I looked around the art gallery at the local artists ‘Life drawing’ imagining my 14 year old son with a piece of his on display.  Slightly off the subject but please let me a share a piece of his:

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and another:

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Shared experiences are what bond people and keep your relationship moving forward.  They keep your conversations alive as opposed to standard, tv experiences and meals.  Meals are great but I bet many parents find themselves sitting talking about the children all night or work problems.  A performance like ‘Getting Better Slowly’ is enlightening, informative and engaging, but theatres are not just about that, there are many other genre of shows.  We’ll be looking forward to our next one and that’s why I don’t understand why local theatres are not always packed out.

‘Getting Better Slowly’ is touring the uk.  Please check out their website for information on locations and prices – http://www.gettingbetterslowly.com

 

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