This month we are putting a spotlight on Joe, a writer and poet from Scotland, who speaks about his experiences of life and creativity with Becker muscular dystrophy.
“Life with Becker muscular dystrophy is difficult, creativity is my escape”
As far back as I can remember, I’ve been a writer. From a young age I was inspired by the works of Roald Dahl. Tales that invariably featured children who were just a little bit different, who existed in worlds that were just a little bit dark, tales that didn’t treat you like a child.
Whether Matilda Wormwood with her insatiable love of books, George Kranky with his creative concoctions, or Charlie Bucket who possessed no wealth but had a solid gold heart, these children were all thought odd, just like me.
As a child, I wasn’t overly physical. I didn’t have a favourite football team because I couldn’t play football, but I would find pleasure in the adventures I undertook in the stories I read.
Finding my own voice
I started writing basic stories, written in script format, before progressing to fanfiction based on the worlds I knew from the stories I loved, and then writing my own original stories. I discovered poetry during this time, and found myself dabbling, with one particular poem being picked up by a teacher and entered into a competition. I learned I had a skill for finding unusual rhymes and that people actually enjoyed reading what I wrote.
Life with muscular dystrophy is challenging, but there’s no greater purpose for pain than art.
George R.R. Martin once said there are two types of writers, the architect and the gardener. The architect carefully plans their story to the finest of degrees, knowing the story they’ll tell, their beginning, middle and end. The gardener plants a seed not quite knowing what will grow and finds pleasure in the surprises that come.
I’m most certainly a gardener as I find real magic in writing this way. I might know who my characters are, but I don’t know what they’ll do next, where they’ll lead me, or even what they’ll teach me about myself. I figure if it’s exciting to write, it’s likely exciting to read.
Life with Becker muscular dystrophy is difficult, creativity is my escape
When my daughter was born, I placed more of a focus on children’s fiction. I wanted to write stories we could read together. Intriguing cautionary tales with unusual protagonists, generally outsiders who are strong of heart or quick of wit. My focus when it comes to narrative writing is telling children’s stories, but this past year has seen a slight change.
I touched on poetry earlier. I’ve found myself writing poetry more and more as my condition evolves, mainly because it’s getting harder to focus for extended periods of time. Poems by their nature are shorter, are quicker to write, and allow me to feel a sense of completion.
Whilst I write about my emotions, I also write about the lighter side of life, the interactions I have with others, silly things people say and the overall lack of decorum people have when encountering disability in the wild.
Overcoming performance nerves
Last year I attended a poetry slam, run by a friend, Renfrewshire’s Tannahill Makar (poet laureate) Shaun Moore. Partway through the show was an open mic slot, where anyone who had the desire could share their work.
Shaun encouraged me to get on stage and I did. Pushing through my nerves, I began to recite a poem, getting laughs where I should, only to suddenly forget the words as I found myself stunned by the stage lights. I had to quickly retrieve my phone, and read the rest from my notes.
Despite that minor hiccup, I found immense satisfaction in performing. When we write, we write for ourselves, never really knowing the effect we’ll have, but being able to see that in real time, that’s nothing short of wondrous.
Within five months of that initial introduction, I’d performed at open mic nights across Glasgow and found myself on stage at the Britannia Panopticon, a place where Stan Laurel cut his teeth, performing in the Scottish Slam Poetry final. Not bad for a guy who was petrified at the thought of public speaking.
There’s no greater purpose for pain than art
Whilst writing fiction remains important to me. These days I spend more time on poetry and working on the blogs I post at dystrophydad.com. Writing in any respect is self-expression, something that goes a great way to supporting my mental health.
Life with muscular dystrophy is challenging, but there’s no greater purpose for pain than art.
Contentment
Eternal happiness is unachievable
You might as well try to grasp air
Moments of light slip through our fingers
Keeping us warm when they are there
The true goal is contentment
In all aspects of our existence
To learn to love the deserving
Overcoming our own resistance
Though shadows may swallow your days
The night is always punctuated by stars
Seek not what you can’t hold
Seek contentment, whoever you are.
Written by Joe Logue for Muscular Dystrophy UK
Our ‘Spotlight’ series is shining a light on the experiences of people within the muscle-wasting community. Explore more of our blogs or get in touch to share your story.