A Short History of Falling Read online

  *

  I now spend a lot of time in my pants and people come and go. It’s getting harder to put my clothes on and the heating here is quite good. As I write this, I’m in my pants, and I’m looking down at my T-shirt which displays the remains of two splodges of the beetroot and squash soup I had for lunch. A lot of me is not as decorous as it once was and it’s in this unvarnished state that I now tend to find myself, groaning on the floor, after the latest fall.

  Having fallen, it’s now impossible for me to get myself back up. That’s been the case for months, but now Gill and I can’t quite manage it together. The most recent example resulted in quite a lot of pain and the unfortunate reprisal of my recently healed rotator-cuff injury. On this occasion, Gill was the first to arrive and I was able to roll over on to my back to have the usual conversation about whether I was or wasn’t OK. I spent a minute or two being aware of the furrows on Gill’s brow, but then Jimmy swung in through the door. He was smiling broadly and, having not actually seen me fall, appeared simply tickled by the experience of looking down at me.

  A visiting friend of ours was the last to arrive. I suppose I mention all this because, with this particular episode, I’m partly writing about dignity and how I just don’t bother with it any more. Attending to my dignity would take too long and would consume a vast amount of Gill’s time. Behind every sponged and smartly dressed disabled person has to be someone else’s considerable and uncredited commitment.

  It took us a few minutes, but the mechanics of raising me up were extremely effective. I’m no engineer so I cannot explain the considerable biomechanical benefit of a single hand placed lightly under my bottom. Under normal conditions I struggle to raise myself from a chair but, with a hand inserted just under my bum, exerting marginal upward pressure, I seem to experience very little upward difficulty. On this occasion we were trying to raise me up from the floor but with the compensation of six hands. I found it particularly affecting that two of them belonged to Jimmy – the boy I should be cradling in my big Daddy arms. My wife, my son, a friend – all managing with my near dead weight. I could never previously have conceived of six hands seeking upward traction from my bottom. But the operation worked. In yesterday’s pants and a dirty T-shirt, I’d made it to sitting – on the edge of the bed – relieved and looking out at my trio of helpers.

  *

  For almost six months we’d been living on the side of a mountain in rural central Portugal, and then I was diagnosed and we fell all the way down to the bottom. We fell through the pines and the eucalyptus, bumping and clattering against the trunks, brushing through the foliage. We cartwheeled and bounced and slipped – an eighteen-month-old baby, a six-year-old boy and a mum and dad. And it was remarkable that we fell a mile downwards from high up on the mountainside, with the speed of falling objects, but sustained no external injuries – no cuts or grazes. Nothing visible. Everything that hurt was on the inside – the disappointment and the shock and the sadness.

  It had been Gill’s idea to come to Portugal. She had been on maternity leave with Jimmy and dreamt up the idea, and we carried through with it. Our flat had been rented out and we were experimenting with a different kind of living. Tom had not enjoyed his start to school life in the UK but now found himself in a tiny bilingual school surrounded by cherry trees, where he spent half his day constructing shelters from old tractor tyres and mud and fallen masonry and discarded timber.

  And Gill and I spent our days together in the sun, learning a new language and eating the oranges and cabbages and potatoes that neighbours would leave on our doorstep. And I don’t know how long this life would have gone on for, but I do know, if my diagnosis had been for something sweeter, something fixable, that our journey home to the UK would have been slower – not off the side of a precipice, with the rocks, the stones and the blood-red earth flashing by.

  *

  I had a moment yesterday when my fingers went reaching for the finial on the banister at the first landing. I looked at my fingers. They were playing a little piano melody in the air. I could feel the slightest sense that my body had moved backwards, rather than forwards. That my hand was doing the opposite of reaching; it was withdrawing. And that this worried me. It was only a faint sensation at this point. The very gentle transitive feeling that a treetop must feel just after the axe has finished its work on the trunk. A subtle movement at first but with full knowledge of the carnage that will follow. It’s the worst kind of terror, the one that begins with such gentility. Knowing what it means; what it would mean for my body. The steepness of the gradient behind me and the hardness of its edges. The damage I would do to my limbs if I were to fall back in that moment. Falling back and needing to take it. The quiet minutes and hours and years of the falling moment. And the thoughts of my wife as she would come running. What all this would mean. Of lives disturbed. By a set of fingers flailing short.

  This is a special subcategory of falls – perhaps the worst kind – because they linger and they haunt, they spill and they drift. These are the almost falls – the ones that never happen; the ones that nearly happen. The moment of knowing a fall is happening. Not fearing it. Knowing it. Even if that moment is fractional, and then snapping out of that space. It’s the waterboarding equivalent of falling, because it feels like it’s happening but it’s not. The heart turns inside out like a rubber cup and then pings back into shape. It’s time travel, or two parallel moments coexisting: the disastrous one and the banal one, with thoughts rattling helplessly between them like a pebble in a bucket. The finial was out of reach, but the banister rails weren’t. I never forget the almost falls. Not the bad ones.

  One pebble has been rattling around for the last nine years, getting more clattery with each recollection. I was on a path on the edge of a ravine. I must have stopped for something. A view? Maybe I needed a piss. Gill was ahead. I could see her disappearing as she traversed the sharp cliff along a loose, flinty path. We were trekking on the Indian side of the Himalayas, without a guide. We were alone. And as I skipped forward to catch up, my toe caught a rock and my two insteps collided. After a stumble forwards, the thick sole of my right boot skidded flat and I came to a stop. I was on my own in the silence. Gill was out of view, with the precipice just ahead. I thought of the degrees by which falls can happen: the strength or slightness of the connection that one toecap might make with one heel, in the process of stumbling and clattering. And how close I came to a more prolonged stumble, and then to nothing, to disappearing over the edge, in the silence, out of view. Imagining the experience of Gill as she stepped back on herself into a mystery. To an empty path. It’s the silence of that moment that concentrates this memory. The fitting stage that it was for an ending. The intimation of an ending, even though it wasn’t.

  Every thought I have had about that moment has been more profound than the one I had at the time. I shook it off, but it has stayed with me and has grown in the dark with each recollection. I didn’t mention it to Gill when it happened. I just trotted on and caught up. Because nothing actually happened – nothing that I felt I could communicate.

  I’m falling now. But this time it is real. Unlike you, perhaps, I know I am dying. And because of that I fear it less.

  The Body

  As I progress down the upstairs landing, holding on to my four-wheel disability rollator, I invariably glance through the open door of the bathroom. It’s become a pattern. Glancing through the door at the metallic frame that holds my raised plastic disability toilet seat. This momentary experience reminds me of the times in my life when I’ve walked past specialist disability shops, gazing absently at all the unlikely paraphernalia from other people’s lives. This world of experience in one shop. And this is what it feels like, seeing this contraption installed around my toilet. It’s other people’s lives; not my own. But each time I remember that it is mine, and that’s quite shocking.

  I think I feel the same level of original shock on every occasion. And these are largely the same feel
ings that I have about every disability item I own: the cone-shaped device for putting on my socks, the grabbing and reaching implements, the rails, the splint, the stroller, Dr Seuss’s fantastical self-washing wires and brushes. New items arrive almost daily and I am unexpectedly becoming the curator of the Museum of my own Decline. How did this happen? Because it wasn’t so long ago that I was walking past these shops. I was on the pavement looking in. And now I am inside.

  *

  If you’re disabled, London beggars don’t ask you for money. They don’t even make eye contact. I discovered this whilst visiting the UK at Christmas, travelling through London on my own. This was a few months before we had to move back permanently, and I was being disabled all by myself. I must have seemed quite unsteady because it was my first experience as the recipient of help from strangers. I found this exciting. I don’t feel excitement any more. But at that time it was exhilarating in the way that all transportive experiences can be exhilarating. Like an acting student with a begging bowl or a celebrity in a fat suit. Except that it was me. The most complete version of me that I would ever be.

  I changed trains at East Croydon and deliberately trailed a woman with a crutch who had a spastic leg like mine. I sat quite near her but realized she was much younger, with MS. Then I felt like an older man stalking a younger woman, which I briefly was. I gravitate towards people with a bad leg like me. At Three Bridges station there was a man of about my age with an even slower walk than me. He was dressed smartly and clearly trying to sustain some kind of job. I was coming from the other direction and had enough time to become excited by the way his leg was swaying wildly – just like mine. It was rush hour. Not an easy time to be thrashing your leg around. I wanted to wave or to say something; or communicate to my brother with an upward turn of my eyebrows. And because we were heading in opposite directions I knew our unacknowledged time together would be fleeting. He needed help, from crutches at least, but he had nothing. I was impressed by his lack of speed. I should have been going a little slower. Or I should have stopped to think, but I ended up doing the opposite. I picked up speed and felt momentarily jaunty. It’s what I must have wanted. I was racing along. And that was it; the moment for connection was gone.

  He’s not the first person I’ve picked out, wondering whether he or she is the same as me. Wanting to ask. I fabricated a notion that this man’s symptoms might have been further on than mine. Perhaps he had been slow to refer himself, and was soldiering on. A man who was continuing to work in the face of considerable difficulty – wondering why his foot wouldn’t lift off the ground. Wondering why he was always toppling over like an old wet tree in the rain. And waiting for it all to stop, for the body to return, to heal, because that is what the body does.

  I don’t think I’m looking for my comrades any more. Not with quite that expectation. Or with that sense of shocking newness I want to share. But still, when I’m with a friendly physio or occupational therapist, I often end up asking about their other patients. I must want to find someone like me. Someone out there with children who is where I am with this disease. Someone out there who is writing about it. Wanting it to be OK. Willing it to be OK. I want to meet this person.

  *

  It’s shocking to me that I have a spastic leg. I’m struck by its arcing trajectory, its banana-shaped inefficiency, and by the sticks I use to compensate for it. And by the wheelchair I will one day be consigned to, the toileting aids that await me, disfigurement, the premature ageing. These are all shocking to me; I’m calm about it, but still shocked. I’m calmly shocked.

  All my life I’ve convinced myself that I have a remarkably striking physical appearance. Unfortunately, I have been capable of believing that almost anything about me, or almost anything I’ve done, might be remarkably brilliant. I have been afflicted by this delusion for my entire life. There’s nothing unusual about this. It’s just the dreariness of narcissism. Only the route towards narcissism is unique. The real stuff. The narcissism itself, the affliction, is dull, boring and predictable. And as with all narcissism, mine has an obverse side which is equally true and equally present: the unrelenting conviction that when I’m not being remarkably clever and beautiful, I’m being remarkably stupid and ugly.

  But now I’m living with a concept that is neither. It’s not life at the end of either of these two extremes. It’s not even on the same linear scale. These days I’m preoccupied by the surprises in my life. The way the body reminds me of myself. The saliva I’m now collecting in my mouth. It’s this. It’s all the tiny signals I experience. The not swallowing. The lagoons beneath my tongue. These pools of saliva don’t interest the narcissist in me. In the presence of such novel details I’ve finally found a way to bore him. With my actual body. The volumes of swallowed juices that sluice away like the downpipe from a toilet stack. Sometimes when I inhale they inadvertently skim backwards with a splutter and a choke. Or, if I’m lying on my front, a small amount disappears over the curve of my bottom lip. Just a little for now, over the side of the bed. Just a tiny stream from a toy teapot. A darkened dot on the carpet. Everything starts as something small. There are no shocks. This is a gentle kind of devastation.

  When I was a much younger man I spent a year or so not being narcissistic. I had found God, briefly. I knew him for a year. He loved me and I loved him and my narcissism ebbed away. I felt the tension in my body release. I felt my 25-year-old body open up, after many years of tightness. When I no longer felt I knew him, my narcissism returned. My body closed again, as if a season had passed. This sounds glib, but it’s the truth. And even though I lost hold of what I had found, I don’t think a person ever completely loses what they have had. I’d lived with a level of shock and confusion my entire life, but something had been lifted that was never completely pushed back down again.

  And now, being a man with a spastic leg, finding myself being wheeled through an airport in a wheelchair, as I was earlier today, I realize this is the culmination. It’s finishing something, finally and decisively. I’m a man with a disability. My body is the truth now and it’s saving me from myself. I have all these losses, and feel a kind of freedom in that. With each awkward, spasmodic movement, or the difficulty I have wiping my own bottom, or with the slur developing in my voice, the narcissist recedes. There’s nothing for him here. Not any more. It’s death to him. The phoney.

  You wasted a lot of my life. Nothing you did was ever real.

  *

  In the weeks and months that followed my diagnosis I received dozens of suggestions about how I might combat my decline. Some fell into the category of tonic and these included several exotic examples, such as a paste made from mixing water with powdered scrapings from reindeer-horn velvet. I was also advised to start my day with warming spices, so that I might have a ginger or a cinnamon tea. Or I could have eggs for breakfast and cook them with turmeric and cumin.

  Other suggestions have been less to do with ingestion than the functions or processes that I could add or alter within my body. In one of the loveliest examples a friend espoused the medical benefits that singing could offer me. A more prosaic example was that I could slow the progression of the disease by chewing my food more slowly.

  In some cases, these suggestions have been delivered with little confidence. Perhaps they’re offered if a person feels awkward and wants to think of something positive to say – so that it might be something they’d heard about from someone or caught as a snippet on the radio. On one occasion I received a text from a friend to inform me that a new drugs trial in India had yielded miraculous results. I texted back to ask for more details but, unfortunately, he was unable to be more specific. I wondered if he might have the name of a town or medical institution so that I could narrow it down a little but, no, it was just something that was happening broadly within the nation of India.

  Others have been far more confident in their approaches – strikingly so. I’m particularly thinking of two parents from Tom’s previous school in Portugal.
In both cases, I didn’t know the people involved that well and they had first learnt of my condition from chatting to another parent in the playground. In the case of these two women it was interesting to note some common attributes to their communication style. Both times the initial engagement involved gently touching my elbow and very sensitively, very earnestly, leading me away from a mingled group of parents. What I then noticed was the closeness of the physical space they occupied, so that the intensity of the eye contact lent the exchange a certain gravity and seriousness.

  As for the suggestions themselves, they were both to do with diet. I have noticed that people can be at their most fervent when making claims that this or that diet can combat my decline. I group these two approaches together because each person espoused a dietary regime which, as far as I can tell, appeared to be the diametric opposite of the other. So that one of them was suggesting a diet based exclusively on fats and animal protein, whilst the other suggested a vegetarian diet of brown rice, sea vegetables and pulses.

  As these two separate discussions continued, and the volume of parents surrounding us thinned significantly, it became clear that these two women weren’t actually prescribing a bespoke cure for my specific neurological condition; in fact, it wasn’t entirely clear that they knew what my condition was. It didn’t appear to be the case that the diets could specifically prevent my motor neurones dying. Instead I was offered the reassurance that they themselves, and their family – as notably healthy and flourishing individuals – were also following this dietary regime and that anyone else in their right mind should be doing the same. As time went on, and we met repeatedly in the playground – and it became clear that I wasn’t following their guidance – the looks on their faces conveyed a saintly form of disappointment. I had been offered the way but clearly lacked piety. In this respect, it seemed that I hadn’t been approached by two friendly and knowledgeable parents but by two variants of the same religion.