Josie George - A Still Life

A STILL LIFE

For all the women who led me right here

Prologue

I write this from my bed in an old terraced house thats seen out a hundred and fifty slow laps of the sun. Ive spent the last fifteen of them here. Same old walls, same old view.

My compressed home is one room wide and riddled with damp. Sometimes I lie stretched out on the floor, taking up most of its width, and I think of it cheerfully relying on the houses either side of it to hold it up. It feels twice as strong than any reserved, detached affair because of it. When the wind blows, fierce and menacing, you can sit on the steep stairs between the two floors. You can close your eyes and feel the phrase safe as houses as a holy, irrefutable truth.

Houses like mine exist all in a row along every street of my industrial West Midlands neighbourhood. They push themselves right up against the narrow pavement, rusty weeds marking the join. Its a land of scattered wheelie bins, patched grass, broken glass, dog shit and prowling cats. Cars ride the corners and the yellow lines because there is never anywhere to park. The neighbours shout behind closed doors and smile at you in the street, and for half the year the old people drag plastic garden chairs to sit outside their front doors and smoke in the sunshine, their heads tipped back to the sky. Were good to each other. Were so trodden together that we have to be. There is peace and reassurance in that and I like living here.

I share the house with my nine-year-old son and no one else. Our days follow a repetitive, quiet rhythm. I take him to school, him dutifully shifting each bin that blocks our path so I can squeeze past on my mobility scooter. We make up phrases beginning with the letters on the car number plates we see, each as daft as we can manage. Bee, ee, ess! I call. Bubbly... elephant... SNEEZES ! he returns. We are happy with each other. I watch him run to his friends in the playground and then I go home again.

I write. I rest. Some days, when Im well enough, Ill scoot to the community centre the next street over and write there for a while until I need to lie down again. Ive spent the last few years trying to make a living with my words and thoughts. I dont really know what else to do.

I write the words, but often I wont say a sound out loud until its time to pick up my son from school again. I dont mind it. There have always been long years when Ive struggled to leave my house for more than an hour or two at a time and so I am used to solitude.

I am thirty-six years old.

The first thing youll want to know, I expect, is whats wrong with me. Thats always the first thing people ask, their eyes sliding to my legs, my slump, and so I will say now that I dont know. I dont know whats wrong with me. Ive spent my whole life wondering too.

There seems to be something different about my body. It cant control its equilibrium: its weather. Movement, sensation and sensory input, circulation and cardiac control: my body responds wildly to any exertion, to adrenaline, to stimulation, to changes in temperature, to its own processes of digestion, blood flow and immunity. It is a bucking horse; a frightened, alien bird. My symptoms started in my babyhood, and so the whats wrong with you? question is an old one. Thats why I need to go back through my life to tell you this story. All the way back to the beginning.

These days, right now, I feel it as a squeezing, heavy pain from my waist down. My heart relies on pace-making drugs to stop it racing me into unconsciousness when I stand or move. All day long, my body lurches into responses of too little or too much in unpredictable, laughable ways. The hours fill up with extreme physical responses and with sudden, profound fatigue. Energy pours out from me: I cant keep it in. I will suddenly stop and crumple like a puppet with its strings cut and then I cant get up again. Activity, food, light, sound, stress, needing the toilet, even gravity, excitement, surprise, laughter, crying, fear. It sounds ridiculous and it is. All the normal aspects of a human life throw my nervous system into confusion and all have a cost; all hurt or overwhelm me. I can only ride it, ride my life, holding on, while I try to shape my days and my time into something more interesting and more dignified than all of this.

I move slowly through it. For the last few years, Ive only been able to walk a dozen steps here and there. I dont understand why more is not possible, but more results in the kind of pain I cant talk through easily, lasting for hours, days; the kind that stops you dead. More results in exhaustion and tachycardia, sickness and unconsciousness and a cacophony of all my most unpleasant symptoms. I live around gentle bursts of choice and exertion, continually paced, evaluated, adjusted, every day a little different, every day new. Things havent always been as bad as this, but they have been sometimes, before now. Like a wheel turning, there are times in my life when the grip of it loosens for a little while at least, thats how its worked before its just that before long, something takes hold again. I have learnt that this is simply how it is and that its best to get on with life privately and quietly, to let progress and change happen slowly. You avoid too much judgement that way and there has often been plenty of that.

What I experience has been called many things over the years by different doctors at different times, depending on their speciality, what tests they run, and how they view bodies like mine: Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), M.E. or Chronic Fatigue Syndrome (CFS), Functional Neurological Disorder (FND), Functional Gastrointestinal Disorder (FGID), Sensory Processing Disorder.

I have learnt, with deep shame at times, that these names passed backwards and forwards down my medical history mean very little in any tangible sense and so I struggle to know what to do with them. They describe effects but not cause because doctors dont fully understand the processes at work. When strangers in the street ask me what happened? and gesture at all of me , I never know what to say. Where would I begin? None of the descriptions offer much explanation or support and some carry heavy stigma. Some therapies and medications seem to work for a while; others make it all much, much worse, so its not easy to talk about those either. Any talk of cures is a matter of guesswork and luck and how patient and willing your doctor is to help you. Thats often a matter of luck too.

For the most part, I must manage things on my own. I do everything I can to keep my mind healthy and helpful. I try to see clearly. I focus hard on the things I can control, however small; I focus on the world around me, on living and living and living. I make a good, rich life; I avoid questions; I let go of the rest. What else is there to do?

It doesnt matter here, in any case. This is not a book about the true nature of those names, whether theyre real illnesses, as some have long contested, which of them I have or dont have, or why I have them in the first place. It is simply about the life I have lived through all of it, and about the life I live now.

The miracle is, perhaps, that I am still here that I continue and that despite all thats come before, I believe my life to be good. That is the truth hidden under all of this: that I am deeply happy to be alive.

Usually, when you are unwell, people expect one of two stories: either you get better you beat it or you get worse and die. Stories of everyday living and undramatic, sustained existence, stories that dont end with cures or tragic climaxes but that are made up of slow, persistent continuation as you learn and change stories about what happens then they may be harder to tell, but I believe theyre important too. I believe we need to tell more of them.