It wasn’t so much an argument, more like a disagreement, with a guy who came up to me after a reading I did recently. I finished off on a poem about Multiple Sclerosis and how having it hasn’t changed me.
The guy didn’t say what his illness was but he went… “You are wrong. Of course being ill changes us. You are a different person now.”
I was diagnosed with MS in 2016 but I had been unwell for years and years before that. At one point I couldn’t feel the entire right half of my body and I was so tired all the time I just couldn’t do anything, even the things I enjoyed the most, like sex.
Back and fore the doctors’ surgery I went with my notebook of different symptoms – I must’ve looked like a right hypochondriac. I was sent to different specialists in different departments of the hospital until finally an MRI scan and a neurologist revealed all these scars on my brain and spinal cord. And then he went and put a name on all of those years of being ill: Multiple Sclerosis.
So, did I walk into that neurologist’s office that afternoon as me, the person I had been for 28 years in all my glory and mischief, and was it like Stars in Their Eyes… did I suddenly walk out of that office into a puff of smoke and transform into a different person?
Tonight, Matthew, I’m going to be... an emotional wreck.
Don’t get me wrong, I’m not playing down Multiple Sclerosis. It is a really horrible, cruel disease that isn’t going to get better, and I know people have it much worse than I do.
I’m fully aware that I may end up in a wheelchair someday in the future, or maybe someday soon. I may lose my sight. My ability to walk. Speak. Write.
But then again, I may not.
Things have changed, of course. I’ve had to make adjustments to my life. I am still tired all the time. I have to rest after doing the most menial of tasks. I have to remember to take my medication. I have to say no to fun things sometimes because I’m in pain and all I want to do is cut my legs off because they are buzzing with pins and needles. I have to think about things most people in their 30s don’t need to think about. You know what, a lot of the time when I am out I am wearing an incontinence pad, just in case I shit myself again.
But there you go.
I can’t do anything about any of this.
My life has changed, but I haven’t.
Perhaps my blasé attitude is due to my upbringing.
My father had kidney disease in his early 20s. He died in his early 40s and spent all that time in between being really sick, much sicker than I am. But he was the funniest guy I ever met. The most positive guy I ever met. I can’t ever remember him complaining. Or being miserable. I’m certain he was, on times, and it’s gutting he died so young, gutting that I was 12 and that I have spent more of my life without a father than I did with one, and my daughter would’ve loved him, were he still around.
But being miserable and cursing his luck wasn’t the narrative of his short life. He just got on with it.
So perhaps this is why I am the way I am.
I’m not knocking anyone who struggles with dealing with their illness. I wish I didn’t have MS. I have loads of miserable times. Really miserable times when I write miserable poems and curse my luck.
But there’s the thing. Writers need misery. I love being miserable. It makes me productive as fuck. You could say that MS has had a positive impact on my life. Perhaps made my life better, perhaps made me better.
I wrote a book about it. Then that book took me to Sweden for a month where I had the best time of my life. Ever.
And I’m hoping to make millions from this miserable book, too. I’m told poetry doesn’t sell, but whatever.
I’m also more considerate. I think about things I shouldn’t have to think about at 30 but perhaps things we should all be thinking about anyway, regardless of how old we are or whether we are ill or not, maybe we should all be more considerate. When I go out, is there a toilet close by? If I’m having a bad day, are there steps to get into this nice place I really want to get into because if there are I won’t be coming?
And don’t forget the perks of being disabled. There’s the free bus pass. This little beauty has saved me hundreds of pounds.
The blue parking badge. I’ve got loads more space than you to manoeuvre my fat arse out of the car now.
The disabled toilet. I don’t have to queue like all you suckers when I’m on the verge of pissing myself.
MS is a great excuse to use to get out of doing things, too. For example:
Sorry, Parthian Books, I haven’t written a blog this week because, you know, MS.
Sorry, Mum, I forgot your birthday because, you know, MS.
And the best thing- Iast year I set up a creative writing group for people with long term health conditions. It’s called Word Ward and I run it with Catrin Kean, one of my best mates who just happens to be a Bafta winning script writer, an emerging novelist and an absolute nutter who enjoys her wine as much as I do. Then through her I met Fizzy Oppe. She’s a psychotherapist and she not only runs the group with us but she has become another one of my best mates.
We have a steady stream of members and new people are always turning up to join us. I’m so happy that other people feel the same way I do about the power of words, being able to write your way around whatever shit you are going through.
The group meets every other Wednesday in the Wales Millennium Centre in a fully accessible room – one of those things I’ve had to think about. It’s not like other groups where you just sit around talking about how ill you are and how crap it is- it’s a group that makes something positive out of negative experiences through writing. It’s just therapeutic and inspiring and fun.
We’ve had guest writers who’ve lead workshops for us, like Gillian Clarke, clare e. potter, Mike Jenkins, Mark Blayney, Crystal Jeans and loads more, and storytellers like Eleanor Shaw, who I met in Sweden. Here’s us celebrating our 1st birthday a couple of weeks ago.
And I’m sticking to my guns. MS hasn’t changed me. I’m still as cool as ever.
Over and out. X