Did something frustrating happen today? Or funny? Or annoying? Writing it down could help you keep this memory, or help prevent negative things from bringing you down.
A trip down memory lane
When we went to watch the Paralympics in 2012, my sons, both wheelchair users, were reading a notice when a man fell over one of their wheelchairs. I was annoyed by his lack of attention – at the Paralympic Games, of all places.
I decided I’d start keeping a record of my family’s experiences. Having written it down, the main point of the problem revealed itself. I was not so much annoyed with one careless man, but with the tone of reporting around the Paralympics in 2012 – the apparent pride that problems of ‘access’ and ‘exclusion’ were somehow a thing of the past. We all know how that turned out...
Processing experiences through writing
I find, that’s what happens when I write things down – I create a distance between myself and the event. For happy events, I can create a lasting memory. For frustrating experiences, I might see a different approach for next time.
When I started writing, I had no idea I was ‘writing for well-being’, but writing has now become an essential part of my life. I write about my experiences as a carer or things that have nothing to do with caring at all. My favoured form is poetry – I like the way it allows me to focus on details, the play on words, the snapshots of time. This focus creates a place where I can go to prevent me from feeling overwhelmed by problems in the here and now. If I can’t sleep, for example, I might think about the next line of a poem or find as many rhymes as I can for ‘ventilator’; it’s a great way to stop negative thoughts from getting out of control.
Sharing my passion
Writing doesn’t have to be shared, but I wanted to improve my writing skills, so I joined a local writers’ group – there are also groups just for ‘writing for well-being’, both in person, and online. My writing has developed, I have met many interesting people and made new friends.
My two eldest sons, in their late 20s, have Duchenne muscular dystrophy – there is a whole lot to worry about.
Through writing my book of poems, Beyond Caring published by Five Leaves Publications (Nottingham), I have found a way to share my story, a mother/carer’s story. I’ve written about everything from diagnosis to intensive care, from being a ‘saint’ (or not!) to cleaning dog mess out of a wheelchair tyre. The careless man at the Paralympics, quite literally, changed my life. You might find that writing changes yours.
We understand that a diagnosis of a muscle-wasting condition can change everything, and there are challenges when you live with a progressive condition. Having access to the right information and advice can make all the difference.
Our Information, Advocacy and Care Team are here to support you. Call our free helpline on 0800 652 6352 (open 10am - 2pm, Monday to Friday) or email info@musculardystrophyuk.org.