I have been writing for years.
I probably started back when I was an earnest teenager wanting to impress literary girls, and I continued into university, producing a poetry collection as part of my final year project.
Once I started working, I wrote a lot less as I had less time on my hands. Then, when ME hit, I found that I suddenly had lots of time again. When I was able, I began to write again, slowly, tentatively, in fits and starts.
Writing is one thing that most people with ME can do. It may be slow and painstaking, but if you feel OK for twenty minutes a day then you can manage to put together a few paragraphs.
Taking it seriously
After a few years, I was lucky enough to get back to a semi-functioning state of health, where I worked part-time but still had a lot of time free, so writing was something that I began to take seriously. I made it part of my daily routine, and tried to get thirty or sixty minutes a day done.
I began to write novels. I generally failed to finish these novels, getting to about two-thirds of the way through a story and then abandoning them.
I eventually joined a writing group, which focused my mind and helped me to actually reach the end of a novel. I finally managed to finish one, and then another, and when my health was strong enough, I looked into the self-publishing process. In 2016 I published my first novel.
It has been an adventure. The novel was set in Lisbon, Portugal, so I went there a couple of times to promote it. It was picked up by a university professor there, who put it on one of his courses as an optional text. Students wrote assignments on the book.
Never wrote about ME
In all of this, one thing I never did was write about M.E. Or rather, I have had this blog for years, and this was where I did my writing about my ME experience, so perhaps that was enough.
But there was also the fact that writing for me has been in part a response to having ME, and an attempt to escape a little from this. I didn't write about ME because writing was part of my 'normal' life, a space where I could pretend that I was just a person doing something that everyone else can do.
My novels explored themes of identity and new chances, relationships and escape, language and culture. I have no doubt that my ME experience informed what I was writing, but I never touched directly on what it was like to live with this condition.
New book and change
That changed with my new book, which has just been published in e-book form, with the printed version to follow. It has been two years in the making and began with a quote from a linguistics book by Stephen Pinker that I was reading -
"The verbs be, go, do and have are the most commonly used verbs in most languages - many language scientists believe that the meanings of these verbs - existence, possession, action, motion - are at the core of the meanings of all verbs."
I wrote about a travel writer who had itchy feet but had decided to try and settle down. That was the "go" section.
Then there was the property tycoon who had come from a poor background and who had built up his wealth with some questionable practices. That, obviously, would work for a story connected to the verb "have".
So a novel exploring these four central verbs; Be Do Go and Have, began to take shape. I had only one verb left though, one that I had been putting off till last - Do.
Kay describes her condition as a "doing allergy". As she says, looking back at her former life, "I did, and now I do not do". What I was exploring through Kay was one of the key frustrations in the life of a person with ME - everyone around you seems to be engaged in a non-stop flurry of action, while you are stalled, limited and generally unable to "do" much.
The stories develop in a parallel fashion, with characters from one appearing in another, and themes repeated and explored across different narratives. Slowly, the stories draw together towards the end.
The choice of a person with ME to represent the "do" section of the book soon began to seem natural, but I was only able to write this because I have made a kind of recovery, and am now living a close to normal life. I am not recovered completely, but I am busy and active and working full-time, and engaged in all of this action that I used to wish for and which Kay, in the book, is not able to do.
I am still a little insecure about my recovery, but it is holding, for now. If I was still in the midst of the frustrating life of limits that I had for so long, I would not have been able to write the ME part of the book.
I am reluctant to market this as an ME novel, as this theme is only really one quarter of the whole book. Yet, Kay's story is a central part of the narrative, and I think a lot of people may identify with her experiences.
That said, the ME community is diverse and not at all homogeneous, and there are people who suffer from ME who would read Kay's version and not identify at all. There may even be some people who are offended by my portrayal of an ME sufferer. I was aware of that as I was writing and was trying to be sensitive to it. However, you cannot represent everyone with a condition where people's experiences are so varied. Kay's story is one story, and is not intended to be the definition of an ME experience.
I deliberately made the character a young woman, as it seems that about three-quarters of all sufferers are female. Kay's experiences are not really mine, though they are informed by what I went through. As much as my own experience, her characters is influenced by what other people I have read about and talked to have communicated; including Jennifer Brea and No Poster Girl.
All told, I am pleased with and proud of the book. I am also happy with the Do section; the M.E. section of the book where Kay tells her story. I tried to get inside the mind of someone in that position, and believe that I have succeeded, at least partly.
If anyone wanted to read a sample, part one of Kay's story is here (there are four parts). The book went up on the Amazon Kindle store this week, and will be available as a printed version in the next couple of weeks. More info on my website here, if you are interested.