A Short History of Falling Page 6
Everywhere is now a vantage point – looking back at the past from a clifftop and the trajectory of flat stones fizzing towards a group of hippies on a beach or, here, looking down at my sleeping children and being close enough to feel the heat from the rising and falling of their bodies. But I don’t think I see any more clearly now, it’s just that everything has become more visible against the background. What’s behind is now filled in with a pale watery wash so that it’s easier to pick out detail in everything, from the foreground right up to the horizon. It’s always been there but I see it now; it’s not floating around in space any more. It’s returning to the body, descending out of the free-floating darkness and settling into place.
*
After the separation, and as my father moved into the place where all these women came and went, my mum had found a cottage in a village. The pretty little house was near the end of an unmade road, backing on to an open meadow with a stream. It had a garden with an apple orchard, a damson tree and a stone bust of a regal-looking woman, accented with lichen, with half an ear and no nose. She stood in a flower bed by the front gate, circled by a narrow, paved walkway – sometimes with a cat upon her head and sometimes in the rain.
At first, I liked this house and lived a certain kind of life, in which I was a little man. I felt much more relaxed here and not scared in the way I was at my father’s. There were two places set for dinner and, next to the front passenger seat in the car, a little tray where I could keep all my belongings: my pen, two cars, toy soldiers, a piece of useful plastic and several conkers. At night I’d listen to stories about a monkey called Alfonso and in the morning I’d run into my mum’s bedroom and play disappearing mountains on her knees. And before long a lazy weekend would have passed, or we’d travel to friends, or I’d accompany her to parties. I fell in love in a conscious way – for the very first time.
On the first occasion when a boyfriend came and stayed, he laid the table differently. We went for a drive together in the car and I scooped the contents from my tray in the front and kept them on my lap in the back. A week or two would pass and maybe he would stay again. I let him lay the table and found a plastic bucket for my belongings in the car. In the morning I decided not to run in and jump on my mum; instead I looked through a book and waited for their footsteps. After that, he came a few more times and then it stopped.
One day I asked about this man. I was sitting next to my mum at the dinner table – just the two of us – and I was told he wouldn’t be staying again. I was pleased with this news and agreed with her that it wouldn’t be a good idea to have him back in our house. I agreed with her list of complaints. We both were of the same mind and I was delighted to hear my mum say that, in any case, she always found me better company. Everything seemed clear and I returned the contents of my plastic bucket to the tray in the front passenger side of the car.
Several months later a different man came to stay. I was a little disappointed to find that we were in the same situation again, but I set the table the way the man before had laid it and went to check the location of my plastic bucket. It had only been a few months and I remembered how the evening used to go. This time, I paid close attention to what this man had to say and tried to make a judgement about which of us had been the better company that evening. He didn’t seem anything special and I was fairly sure he wouldn’t be back again. Unfortunately, a few days later, he came to stay again. And a few times over the next month the same thing happened. On one occasion things were said at the table that reminded me a little of some of the things I used to hear when I would sit at the top of the stairs in our old house. I particularly noticed the way my mum, after the meal was finished, made a lot of noise with the cutlery as she put it, quite vigorously, into the washing-up bowl.
It was a surprise to me that this same man continued coming to the house. My mum didn’t seem very happy and I was allowed to eat dinner on my lap, watching television. When he wasn’t here I would say a lot of things about the situation that seemed to make sense to her. And then we’d have a treat to cheer us both up or we’d stay up late and watch a film together.
I think I felt a bit annoyed when this man came to stay again. And when the two of them started laughing at the dinner table, about something I didn’t understand, I scooped up my plate, my knife and fork and went outside, setting my place down on the shallow paving alongside the regal-looking stone bust in the garden. I gazed up at her and she looked the same as she did that first day when I walked through the garden gate. I thought about this and, eating my way through the length of my fish finger, considered her constancy and her unblinking eyes. A year or two went by and I think, by this time, I’d lost any pleasure or trust in what I had felt. I’d think more about this woman made of stone and what she had to say to me – and how she somehow mattered more than anyone I knew.
A different man would come to stay – or then he wouldn’t. From this point on, I’d always ask to eat my meal upon my lap. I wasn’t sure about the quality of my conversation and played with various thoughts – like who exactly my mother did like best – until the blood ran from my eyes and everywhere. I decided to keep my belongings permanently in the plastic bucket and let other people set the knives and forks for dinner – losing my interest in what would happen. I divided my time between this house and weekends at my father’s – researching what exactly relationships were from the clues his magazines half gave me. Some time spent there; some time spent here.
And, by the age of nine, found myself on top of a shallow cliff by the sea, throwing stones at the people below.
Losses
The incremental changes to my body is a story that sits on my windowsill in spring and requires repotting every few weeks. It’s exciting for the writer and the gardener in me but terrifying for the person that I am. My body is not the same as it was on that cold January day at Three Bridges station. I now spend my time in a wheelchair and keep a note of the tiny little losses; the places I could reach last week that are now out of reach. The simple activities that now challenge me. So much is new and surprising. Last week, a box of tissues stood just out of reach, and I found myself blowing my nose on the non-buttered side of a slice of granary bread, left over from a cheese sandwich.
Not all losses are equal. For example, I now notice that my willy is shrinking. Its absence reminds me of those breeds of dogs who possess just far too much skin for the surface of their body; dogs that somehow seem smaller for all the excess rolls of skin jostling for space on their undersized frames. Or I look down and my shrinking willy reminds me of a once-impressive termite mound, now long abandoned and crumbling from the top.
The reason that I now pee into a bottle is, in part, because it’s hard for me to get to the toilet: hard for me to get up, to turn, to manoeuvre, and then to approach. But it’s equally the result of the unsettling and unaccountable multi-speed functioning of my urethra. For some reason the waste liquid exiting down my urethra now travels at varying speeds. I can’t rely on the family saloon that I had come to know because, without any sighting in my wing mirror, a streaking yellow Lamborghini of piss suddenly passes and sends my flabby concertinaed willy circling wildly like an out-of-control fire hose. As soon as I’ve finally taken back control, it can seem like the traffic has suddenly stopped; as if the highway has been closed without notice until, a few moments later, a series of elderly cyclists pass me in the slow lane and continue, for what seems like several hours, parting only occasionally to allow through a Kawasaki superbike or a diesel tanker.
*
Between November and February the winter skies were clear and blue. These were the early months following diagnosis and, in the middle of the day, the land around our mountainside cottage was temperate and peaceful. By 11 a.m. on most days I could pull open the sliding doors, limp along to a chair and table by a lemon tree, and set up my laptop under an awning with views over the Rabaçal valley in central Portugal.
It’s now November of the following
year and Gill, Tom, Jimmy and I are all living in a small rented cottage in the Hampshire countryside. It’s 4 p.m., but I don’t mind that it’s dark and rainy outside. This is a different life. The citrus trees are now oak and ash and yew – and the way I manoeuvre my body to be able to write is a bit like manoeuvring fruit in a lemon squeezer to extract the remaining juice. I can’t just sit in a chair and write because I can’t sit in a chair; more accurately, I can’t get out of a chair. My hip flexors no longer flex, my knees give way and both my quadriceps and hamstrings have atrophied. It would take a hoist or two strong people to get me out of a chair.
Before moving to Portugal we lived in a two-bedroom flat in Crystal Palace. With clear skies, and a less-than-average tangerine smog over the London skyline, this southern highpoint offered views across to Alexandra Palace on the northern side of the city. Our flat was on the top floor and from our kitchen and living room we looked out over the city in the distance, with views of St Paul’s and the Shard. For the five miles or so between us and the Thames, mature trees largely obscured the dense housing so that the whole of south London appeared to be forest.
In spring our bungalow will be ready, just thirty minutes east of here, with the vast ash tree at the foot of the garden and the woods beyond. The doors are being widened and hoists are being installed; an extra bedroom’s being added and a glass-fronted extension, through which I’ll be able to look out at the woods. My aim is to complete this book by then. My left hand functions much as it always has, but there are furrows between the bones of my right hand. When I tap with my index finger, the middle and ring fingers droop and drag along unwanted keys. The trick is to plant the fleshy base of my hands just below the keys and pivot my fingers into place.
It’s been the most exciting of adventures – from London to Portugal and back to here. But I don’t know if my body will last until this final move. Seven months ago we lived on top of a mountain in a foreign land and now we have come back down again.
*
Given that I can now pee into a bottle, my multi-speed urethra isn’t that much of a problem, but other changes feel less easy to adapt to. I’m now uncomfortable at night and find it shocking to approach bedtime with a level of dread.
But once thudded down, and Gill cups my legs to lift them on to the bed, there’s very little movement I can make. I’m like a beetle on my back. Less than a mammal. I hear Gill breathing in the night and Jimmy snorting in his cot. I don’t feel I am part of this or even part of what’s happening in the barn outside or in the field – the resting and the rebuilding, the turning and moving. The way a hoof points downwards in a stretch, one paw curls around another, a hand bends upwards and pushes back the moon. I want to slide my palm along the sheet and bury it under my pillow, or weave the body from the ends of my feet, twisting my legs like two reeds until my torso flips and I’m over on to my front.
These simple, unconsidered actions are now the movements in the mind. Awake at 3 a.m. – imagining the action of sitting up in bed, the soles of the feet touching down on the cold floor. The simplicity of this – sitting with the palms of my hands just resting on my knees. Or moving in the dark – and the luxury of being able to pull the cord on the bathroom light and lift the toilet seat for a pee.
*
I read the words emerging quadriplegia in my physiotherapy report and was reminded that I was once an emerging playwright and that others are emerging footballers. It’s aspirational, with status connotations.
With my left hand I still aspire to scratch my own itches. Or I can at least move enough to rub an itch against another limb or the leg of a chair or bed. And if paralysis was once an exotic horror, it’s less so now. Being horrified would require me to be unfamiliar, but my body has already given me too much information for this. It’s no stretch for me to imagine quadriplegia or to imagine the friendly fly that will one day land on me – feeling each of its six dainty legs on my skin; being patient with the fly, as if the invitation had been mine.
But quadriplegia does feel harsher than paralysis. A person can be paralysed at the waist, either up or down, and lead a perfectly adequate quality of life. Emerging quadriplegia feels like a much more advanced and specialist concept than emerging paralysis; or much more complete. And the more Latinate quadriplegia also feels ancient and antique – the egg spilled on my T-shirt, the belly bump and shrunken willy, the toes now curling into claws – that all of this may someday be cast in stone by Michelangelo and placed upon a bed-like plinth within a small museum.
With all the wealth of human civilization making sense of death, quadriplegia is a special kind of loneliness. I need to start being happy in my own skin.
*
When I’m not writing I’d like to say I spend my time reading, listening to opera and learning to meditate; whereas I actually fill my time bingeing on catch-up TV and flicking through social media. Just a few days ago I was surprised to find a very enjoyable film about the experience of having motor neurone disease. It was a violent film: lots of shooting and bloodshed.
The plot involves the exchange of arms between a dealer and a member of the IRA. Each man has his entourage and the ninety minutes of ‘real-time’ action takes place entirely within a disused warehouse. The film is nothing but guns, a constant flow of witty dialogue and the juxtaposition of a very tender John Denver soundtrack alongside images of wounding and mutilation. About twenty minutes in, a shot is fired, which develops into a firefight that consumes the remainder of the film, grievously maiming all the characters in the story.
The reason this is most certainly a film about motor neurone disease is to do with the type and intensity of wounds inflicted and experienced. No one in this film dies quickly. Many of the wounds inflicted as a result of the environment are just as painful and damaging as gunshot. A person crawls to avoid a bullet and puts his hand and forearm into broken glass. Everything about that wound – its pain and discomfort – is recognized in this moment. And it’s these incremental woundings that gradually break down each individual. Towards the end of the film, each character appears chronically, cumulatively and comprehensively disabled. They cannot walk; they cannot crawl. They propel themselves slowly across the gritty floor using shoulders or a chin or whichever minor part of the body feels the least affected by their plight.
There is a resignation in all of these characters. They joke and shout across the space to their dying fellow enemy, knowing that nothing about the present situation can be changed; knowing that they will die and released to accept these final moments with a fuller sense of the character that has falteringly supported them throughout their able-bodied life thus far. They’re not different; nor do they tell fewer jokes – they’re just weak and dying.
*
I was sat on the side of the bed when a district nurse passed me a mug of tea, which I then dropped into my lap and burnt my testicles.
What strikes me most is that, once this had happened, I was unable to do anything to make the situation better. And I think about my inability to escape a burning building when the time comes. Or if something or someone I love is snatched and I have to watch them getting smaller from my chair as they are taken away from me.
I had been sitting on the side of my bed when I put my hands out and watched my fingers slither and wobble away in the handle of the mug.
And with the shock of that moment my torso fell back as if I were an egg that someone had tried to balance on its end; my feet still on the floor but my eyes on the ceiling and, all the time, my testicles burning because emptying boiling water on to your lap when you’re wearing jogging bottoms is like using a flannel as a hot compress.
My wife came running, holding Jimmy in her arms, and a lot of different manoeuvres happened in these moments. I was shrieking at this point, physically unable to do the thing I needed to – which was to pull my trousers away from my testicles. Only in that moment can a person grasp the thermal properties of a pair of jogging bottoms.
By now, Jimmy
was also screaming and these nurses (there were two of them, in fact) tried sparking up a conversation with Gill about the best formation and approach (given that my trousers now needed to be pulled down) for preserving my dignity. It’s so hard to offer reassurance when shrieking and if they’d known me better they would have been less concerned by this. If they’d known me a year ago, their concerns would have been a lot more relevant.
Once levered to my feet, a towel was placed in front and behind, like a magician holding a square piece of red silk in front of a top hat. Or at the beach – the way a mum might look away as she holds a towel for her teenage son to change behind.
The second time I fell backwards on to the bed (after the manoeuvre was complete) it was laughter that propelled me. As much as I would rather be able to hold my own tea or pull scalding clothes from my body, I’m also hourly reminded that my predicament is chock-full of the indignities that make the experience both entertaining and, more than this, tolerable.
*
I now receive a lot of physical help. When in-between two fixed points – one solid object to another – I wrap both hands around a helpful arm. I’m stabilized by others and move in ways I’ve witnessed with the very old. The most affecting help I receive is from male friends of mine. So that we might be sitting and chatting as physical peers, but then we need to move and I become someone vulnerable, who needs their help.
As I take hold of their wrist, I’m struck by how solid it is. It might sag momentarily with my weight but then steadies and I know, or can feel, that further up this lever it’s the fibres in a bicep that have shortened to steady this arm in this moment. I know this mechanism. I’m familiar with it. And I can feel, through my frail body, what I’ve lost. I remember it – not as an old man remembers his younger body – but from eighteen months ago; from being alongside this person who now supports me. And how I envy their body! I want it for myself.