Majority consensus* marks one day as a 24 hour cycle. Sleep, eat, work, eat, work, eat, rest, play, rest, sleep. Something like that.
My days are different. I live with Chronic Fatigue Syndrome (also known as M.E.), which means that I live much of my life in small parcels. The rhythm of the majority consensus day is not my terrain. I don’t keep to the clock. Days and nights are fragmented, composed of many more beats than that of the dominant norm. They break down into more numerous parts, a fact my specialist nurse encouraged me to record on sheets of grid paper. First it was hourly slots of activity, then thirty minutes, followed by fifteen, then ten...
The story of my day became a story of stops, of stuttered activity, long stretches of silence and stillness between. The short story, often framed as little sister to the novel and other longer literary forms, became my uneasy ally over recent years as I wrote a collection of short fiction.
With my physical life defined in small packages and sometimes ruthless decisions to cut out anything that wouldn’t easily fit, I heard echoes in the writing of short fiction - in particular the editing, the paring down, and the (perhaps unique) tendency of short stories to not lean towards resolution in the way that novels and scripts sometimes do. While there may be symbiosis between the structural form of short stories and the embodied form of life with CFS, on a practical level it does makes it hard to complete a large project like a collection.
In a capitalist system that allots value to the ability to complete commercially tenable work, I have very little value. I am close to worthless, from this economic perspective. Likewise, short fiction does not value highly in a world where money attaches more readily to screenplays, TV scripts and novels. The short story is a quaint artefact.
From that position, I wonder if there is great potential – perhaps outside of the world of commerce there are fewer expectations, fewer rules to be followed. Perhaps life can be written differently.
A short story can be held in one hand. It can be read in one sitting and it is whole in its own incompleteness – that is to say incomplete only when held against the long form. The ‘incompleteness’ is an illusion because really the short story is moment to moment, it is present, and not one word can be extraneous.
There is no room for long, indulgent description, for diversion, no room for anything that is not absolutely necessary. Every word, every letter counts, as with my life with CFS; I have shed so many luxuries and digressions, have had to whittle my days down to the core of what is first necessary and second important.
First: I must eat, I must drink, I must breathe. I must secure shelter and tend to my body’s demands – pain, exhaustion. Lie down, block out lights and sound.
Second: on good days come the important things, the bedrock of my soul, the pieces that hold me together when my body fragments in pain and numbness – books, music, friends, paint, my family and the crunch of snow that’s melted and then frozen again. These mark the survival of my core self, the me that is more than cells and chemical messages and burning tendons. These are the crucial words that make up myself as story, the pieces that write me.
Before disability, before CFS, there was a sense of continuity, of expectation. My life was lived in long form, much anticipation of future, of plans, and an unbroken thread that stretched through from then to now to what would be.
CFS was the dismantling of that. It was the disruption of that long form through inconsistent hours, days, months, all dancing to a stop/start jerk, and the thread became tangled.
I no longer see in lines. I cannot. It’s too painful. I trick myself into forgetting, again and again, by seeing myself through the eyes of others, those who don’t or can’t see the illness. The ones who still flinch with surprise when I call myself disabled, who ask if I’ve tried exercising more, eating better, taking supplements. The ones who tell me they really know how I feel because they didn’t sleep great last night and are sooooo tired today.
The invisibility is a sneaky trick that plays me again and again. As much as I sometimes rage against the ignorance of others, of what they don’t see, I do it myself. I look away. I trim the corners of my life, bit by bit, until it fits within confines that fool me into believing it is choice, because fuck no, I don’t want to live wanting. I want to live now, to live in my present. The pull of the distant future and past is what hurts, and so when I am at my best and most able, I do live presently. No string. No thread. No straight line.
Here is where my story sits. It is between rests, on the uproad of my energy, or maybe on the down. It is a light switched on in the dim of an evening room and then, suddenly, it is off. The breaker flips, a power outage. Small parcels.
CFS time can be held in one hand. It is an overheard conversation on a bus. It is the wait from the end of the queue to the counter. It is that short space of time that is easily overlooked, the time it takes for a cup of tea to cool to room temperature, the space between lying down and sleeping.
A short story, on the days I can read and write, demands presence. It demands now. Just now. I finish reading, finish writing, and it travels with me into rest and sleep and pain. It stays there, in the gaps in my active life, and it settles.
*Thanks to Manda Scott for this apt phrase
As I write my way into the home stretch of this book, here's a sneaky peek at what will begin it.
Debrief is the shortest story in the collection and it looks at one of the effects of war, on an outsider. It is coming home and forgetting how to greet loved ones, forgetting social cues, dropping an apple in a supermarket and waiting for the roof to fall. It is the fractured crackle of PTSD and not knowing how to fit back into what came before.
The spiel that comes after the story does contain one inaccuracy: the book is clearly, now, not coming out in 2013. Blame CFS/ME for that one. (In fact, when I watch this video back I can see the illness on my face - but perhaps that is ok. It is what it is. Video goes places that I can't physically reach these days, and so here it is, evident fatigue and all!)
I am writing as fast as my body will allow, and am thrilled to say that I am approaching the edit stage. I won't be doing any live events until I've finished, as I need all available energy for writing, so until that time, let video-me tell you a story.
(My apologies for the lack of youtube window inside this post. For some unknown reason, my host doesn't want to load it, so you WILL have to click out on the link above. Never mind, all you've missed is a frightening still of my face, mid-sentence, where my eyes are neither opened nor closed.
Here - as consolation, have an old, obtuse punching-in clock from Victorian times, now part of the Jeremy Deller exhibition. This one looks lovely and antiquey, doesn't it? Now at the Amazon warehouse they're yellow and grey and strapped to the employee's wrist. Poor bastards. If you're in Manchester, please please go and see that exhibition. This Sunday's the last day, and then it's off to Nottingham. Manchester City Art Gallery, NOW, and the wheelchairs, as with the art, are free.)
There is a small patch of overlap between the time my brain keeps and that of the rest of my body. It shifts constantly, and sometimes gets lost. There are spoonie* days where the two never meet. My brain leaves messages on the paper beside my bed, scrawled out, ideas that the fingers didn't manage to transcribe. My body performs day, performs movement and function, left, right, wears headphones so the brain won't be required to recognise faces, make nice. Autonomic, back of the head lizard stuff is preferable. Wires in my ears, the sign is up: do not engage.
A meeting can be forced, adrenaline called into service. My cheeks burn. It's a short-term solution with payday loan interest rates. Doorstep lenders with asshole enforcement thugs in cheap suits, they always come back. So it is.
The no-sleep exhaustion of CFS is not creative. It is not inspiring. But. But in the small patch of overlap where they cross, body and brain, I write. Lying down, not-sleeping, not-thinking, the words are there, and I write. There is something magic in the few moments after I've left almost-sleep and tuned in just enough to hold a pen, to focus my eyes. Sometimes. Not always. But sometimes, I can step into that overlap where insomnia and exhaustion can't yet reach, and I can stretch it for long enough to start something. Something worth coming back to**.
*spoonie definition here. Capsule def: person with long term illness/disability
**the prison. I will come back, as will the overlap.