It’s no secret that for a long time I’ve lived with severe Myalgic Encephalomyelitis, or ME.*
I’ve also mentioned, here on my blog and in interviews elsewhere, that I started learning how to write novels in order to keep myself sane when I was bed-bound, paralysed, in terrible constant pain, grieving for my old life, anxious about my young family’s future, and appalled by the chaotic lack of reliable medical knowledge that sat like a satisfied toad at the core of everything.
What I haven’t talked about, anywhere, to anyone, for a long time, is why I’ve never created a character who has ME, when I have such deep firsthand experience of the illness.
Back when I first started producing words, several people told me I should write about ME. I didn’t want to write scientific articles about it. Others were already doing that far better than I could. I wanted to write novels. So they told me I should write a novel about a character with ME. But I didn’t want to do that either, because I knew I wasn’t up to the job.
So what’s changed?
Well, for a start I’ve lived 23 years of research. And then there are my 7 published books, and the growth I’ve enjoyed as a writer through them. So, personally, I reckon I’m better qualified to write a character with ME now than I was back then. Inside, I was ready. What I needed was a nudge from outside.
I got two.
The first has been constant over recent months, while I’ve been soaking up and participating in the wave of social media pressure that is people demanding more diversity in publishing. Invalidity is one of the things people want to see more of in books, but I haven’t yet seen anyone talking about chronic illness. Which isn’t surprising, because chronically ill people tend to be quiet. So I thought, y’know, hmm.
The second nudge came as today’s date approached. 12th May is ME Awareness Day, and my social media portals have been filling with information posts and posters.
I’ve found it all a bit overwhelming, to be honest. Not because of the information they contain but because they symbolise the tip of an iceberg-like group of quiet people, many of them youngsters, who live quiet lives of relentless suffering.
I want to write a character for them. For us. People of all ages who live with ME and other chronic illnesses. Not as a vehicle for awareness – although heaven knows we need greater public awareness as well as the sufficient funding for medical research that you’d expect from any civilised society – but simply so that chronically ill readers can find a character in a story who is just like them. Which is what this push for diversity in publishing is all about, isn’t it?
So I’ve started writing The Orphan Age, a YA epic fantasy novel about a 15-year-old girl called Molly, who has ME, and whose quiet life is brightened beyond measure by her magical ability to enter books and engage with the characters and their stories. She starts as an observer and becomes a heroine.
This year, I’ll finish her story. Two chapters in and already I love her. 🙂
Updated July 2015: I got seriously ill over winter 2014. Too ill to write anything. I had to set this novel aside, but I’ve returned to it now and aim to finish it by the end of this year.
Updated mid-December 2015: It’s going great and I’m on track to finish this very soon. Three or four weeks max. This year I’ve rewritten it with adult characters instead of YA and retitled it Storywalker. Molly, now aged 30, is one of my favourite characters I’ve ever written.
*Also known erroneously in some circles as Chronic Fatigue Syndrome, or CFS, which is a bogus label invented in 1988 by a small group of corrupt people in order to help American medical insurance companies do what they exist for, which is avoid paying money out to people who are entitled to it. See the paper Myalgic Encephalomyelitis is not fatigue, or ‘CFS’ for a superbly argued explanation.