Let’s Go Get ’Em
May 16, 2024
Around fifteen years ago, in a Costa on the outskirts of Durham, I told my parents that I was going to write my book. By this stage, I had been ill for over a decade, and the need to tell my story had become overwhelming. There is a gulf between what life with post-viral illness is really like and how it is perceived, and the misconceptions about ME/CFS sufferers can be very damaging. I felt the only way to try to change those misconceptions, and thus help others with the condition, was to be brutally honest about it.
My mum looked both proud and wary. She took a sip of her decaf. ‘What will you include?’ she asked.
‘Everything.’
‘Everything?’
I assumed she was worried about me revealing our family life. I would be including not just the love and banter but also the arguments, the tears, the grief that’s involved in coming to terms with a life lost to illness. Ernest Hemingway reportedly said, ‘There's nothing to writing. All you do is sit down at a typewriter and bleed.’
But that wasn’t my mum’s concern at all. ‘Even… you know?’ she said, pointing to the ceiling.
The layout of Costa’s overhead lighting? Then I realised what she was referring to, and I nodded. I wasn’t going to crowd my book with scenes of spirituality, but if I didn’t include any of it, I would be missing out an important aspect of my recovery.
Was it possible, though? Could I include the postbox scene (read it to find out!) in the same book that I write about elderberry being a neuraminidase inhibitor? Well, I wouldn’t know if I didn’t try.
It took me five years to complete the first draft. I wrote on every day that I felt well enough until my face swelled up and my brain fog descended. There weren’t many well days.
Then there was another five years or so of redrafting, followed by five years of finding the right home for the book while I hunted out research papers and continued the cycle of editing and relapsing.
Then one day it was finished.
My test readers told me that they laughed and cried as they read my story. I wanted to make my book emotionally raw as well as factually accurate, because I believe that people are more likely to remember what you tell them if you make them feel the words.
I am so grateful to the principal people in my story who allowed me to recount their antics as well as my private conversations with them (although my mum still squirms when I mention the ‘London waiting room’ scene!). I am humbled by the support I’ve had in this venture, and I want to thank my family, friends and medics who supported me.
Please check back here in the weeks and months ahead because I’ll be writing some posts to expand on the issues I only had room to touch on in my story.
Oh, and if you like my book, please spread the word. We’re not going to change people’s perceptions of this illness if we don’t show them what it’s like.
Let’s go get ’em.