Honoured to be among this group of writers talking about M.E. on the Lucy Writers Platform.
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It is an honour to be amongst these writers!
From the introduction by Katy Wimhurst, (who organised all this)
“Telling stories may be a basic human need, but the kind of stories we tell and how we tell them reveals something about who we are and how we experience the world. This may be especially true if our experience involves a body that has gone chronically wrong. Inhabiting the body can be a strange, unsettling thing. Chronic illness forces us to question things, to discover new modes of understanding and expression, although this isn’t to romanticize sickness or see it as ‘illuminating’. In this piece, five people who suffer from myalgic encephalomyelitis (M.E.) – a neuro-immune disease sometimes called by the inadequate term ‘CFS’ – talk about how it has affected their development as writers and their writing practice. While each individual has their personal take – and I will let their voices speak for themselves – their words reveal common themes too. (Editor Katy Wimhurst, author of Snapshots of the Apocalypse).”
It felt important to me to have got my first novel,The Mouth (Solstice Publishing), published by a small press in America without them knowing I suffered from a chronic illness.
I wanted to feel I had somehow imaginatively escaped the confines of my bed. I was determined to write about anything that was not my illness, as an act of defiance!
I failed, of course. My writing is intimately about the disease I suffer from.
Life has changed since I became ill with M.E. It is a poorly understood disease that can leave patients bed-bound and virtually housebound indefinitely.
Writing advice I read once said, ‘Tell the secrets only you can tell.’ The fantasy dystopias of imagination reflect the prejudice many patients face daily. My characters regularly encounter disbelief, rudeness and cruelty.
If you are not believed in real life, then why not fictionalise your experience into a fantasy people might actually engage with?
When you get a chronic illness, the world is turned upside down. People who you thought were friends turn out not to be. Similarly unexpected people turn up trumps.
You can go missing, as far as the outside world is concerned. But you’re not actually missing, because you know where you are.
I wrote a book (Cape Misfortune) about a police woman investigating disappearances on an island off the coast of Oregon (famous for its fog). She discovers people aren’t really going missing – they know where they are.
Some days I’m not well enough to write much, some days I am. Whichever it is, if you are spending most of your available energy on washing and eating, the word count cannot match that of a well person. I recently had a relapse in my illness which left me unable to write. When I’m too ill the physical word count is zero. In my head words swirl, ready to pop out.
But if you are able to do a little every day, it becomes a superpower eventually, even with the chronically ill.