The World I Fell Out Of

by Melanie Reid

  The nurses wrote me an ‘Ode to Spinal’ in biro on the waterproof side of an incontinence pad. I regarded it as a great honour.

  The time has come for you to go

  And good news for you

  But we’ll miss you so.

  You must see how far you’ve come

  Especially when dealing

  With your own bum.

  Supps, catheters, the dreaded gym

  The nurses at night oh what a din.

  Good luck, dear Mel,

  For you’re a star

  Let’s meet you downtown

  In a wee bar!

  Before I left, Susan did my final assessment – the pinprick test for skin sensation and the muscle-function chart. I still lacked sensation over most of my legs, but muscle-wise under the Asia scale I was graded C, knocking on the door of D. My target. Susan’s words, Asia Ds can walk … it’s not pretty, but they can walk, were always in my waking brain, the portal to all my thoughts. To achieve D, the majority of my large muscle groups had to be graded 3 or above. I was at that level, with lots of 4s and even a 5, everywhere but in my hated right leg, which was only 2.

  ‘It’s not that I’m competitive or anything, but can’t you just say I’m an Asia C/D?’ I wheedled. ‘Asia D minus?’

  ‘No!’ cried the Hobbit, exasperated. ‘You’ve already gone from A to C, which is further than anyone else in our experience.’

  As the hours to my departure ticked by, she and I eyed each other warily, like an undemonstrative but devoted married couple about to be separated for the first time in twenty-five years.

  ‘No getting emotional, now,’ I warned, with tears pricking my eyes.

  ‘Of course not,’ she said. ‘It’s not like I’ve devoted hundreds of hours to you or anything.’

  In truth she was probably quite relieved when I finally went. It was time.

  I left hospital a week before the anniversary of my accident, having survived my first year by optimistic instinct, and the odd bit of Buddhist philosophy. The man I like to call my Zen Master, a former patient at the spinal unit, was someone I met when he came back to join one of the activity days, a sailing session. He had also broken his neck falling off a horse, but his was a completely different injury to mine, and he went on to a remarkable recovery, walking, riding, skiing again. He told me the greatest gift for anyone with physical or brain injury was time. Time is key. Years on from his accident, he was still noticing small improvements. ‘We are quite unused to the time required to fix these incredible bodies of ours, more complex than a galaxy.’ Don’t say, he advised, ‘I will always be disabled’, but state instead, ‘I will always be recovering from my injury.’ One was open, the other was closed. And he blessed me with a wonderful image – he got comfort from imagining that inside our bodies battalions of miniature therapists and medics were working night and day doing jobs of mind-boggling complexity, trying to repair the damage. They needed us to do the big stuff: to draw in energy by eating and sleeping well, doing the exercises, while they pressed on with the micro stuff. And, crucially, they needed us to keep faith. The body’s default position was to heal.

  In hospital, I had tried to exist in the moment, concentrating fiercely on the job in hand and rejecting corrosive thoughts about the future. The tears, the self-pity, the profound inner loneliness, these were the constant enemies, besieging the castle walls. From being diagnosed as completely paralysed, I had confounded the doctors and regained some function, after a fashion. From being totally insensate from the armpits down, I was continuing to recover some feeling. But there had been no miracles. With spinal-cord injuries, the word does not exist. From a strictly medical point, it was probable that my body had been in deep and prolonged spinal shock, which had confused the initial diagnosis. I was in fact a very incomplete injury. I wasn’t proof that doctors are wrong; I was proof that every injury is different.

  The poignant thing is that my delayed diagnosis gave me the capacity to dream dreams when it was probably unwise to do so. The person who was going to be hurt most was me. Had I had a more serious injury, with no chance of recovery, I might have accepted my fate quicker. As it was, I threw myself, every atom of my body, into trying to walk, to be the old me again. I launched myself at the challenge, happily blinkered, pretending to be a thirty-year-old paraplegic when I was in fact a fifty-year-old tetraplegic. Mankind is hardwired to do so, I guess. And yet I don’t regret it.

  The legacy of my injury has been to force me to live with the biggest ‘if’ in the world. If I just tried a little harder. If I could have given it another six months. If I could only bear a tiny bit more weight in my arms. If I could walk further, then maybe one day my bladder function would start to return. If I can do this, then I should be able to do that. If. If, if. It was a game without a finish.

  Welcome to my new world, the eternal torture of possibility.

  CHAPTER SEVEN

  Aunt Averil and the Hidden Army

  ESTRAGON: I can’t go on like this.

  VLADIMIR: That’s what you think.

  Samuel Beckett, Waiting for Godot

  When you’re healthy, and busy, and things are good, and everyone you know is in much the same position, you think that’s what life consists of. You inhabit the upper world. This is where the happy, shiny people live, the ones with white teeth and lithe figures; it’s what’s you see in TV commercials and glossy features in lifestyle magazines. You have expectations, and yes, of course there are frustrations and disappointments, but you continue to make plans; and yes, of course you’re a bit complacent, and unthinking, because life is so busy and you don’t have time to think. You’re a consumer of good things; you dream of better things. Online, on screen, in every form of media you devour, you see yourself, or someone you aspire to, looking back at you. The upper world is in fact an echo chamber, based upon a presumption of good health. Most of us, at one time or another, have lived there; some of us, the lucky ones, never leave.

  What you don’t realise, of course, until something happens, is that just below the surface there’s another world altogether, a parallel existence, where all the people you never think about live – the sick, the halt, the lame, the chronically ill and the elderly. The imperfect people; those for whom life is a daily struggle. ‘Life’s a bitch. And then you die,’ we used to say, after a hard day in the office. Joking. Down in the parallel world it’s not so funny, because it’s true. When I fell off my horse, I nosedived, like Alice down the rabbit hole, from the upper world into the lower one, a place I didn’t know about. In an instant, one tribe cast me out and I was forced to join another, a hidden army of people fighting their private battles against ill health, simply trying to keep going the best they could. Here was a reality warp, the secret counterbalance to the media gloss of Western culture. When you fall, you lose so much more than you thought possible: you are stripped of your personality, your confidence, your pretensions – stripped of the carapace of who you think you are. Some of the most intense human fears are of losing your world, your brain, your body, of perpetual suffering – these are elemental phantoms. You thought they only happened to other people. And yet here you are: what you dreaded most has come to pass. Who are you now? That’s for you to find out. Your job, for the rest of your life, is to fill hospital waiting rooms, to accept, to learn patience, to develop the skills needed to play the bad hand you’ve been dealt. No longer a participant or a player, you are an observer.

  My eyes were opened. I was a raw recruit in a tribe which had novel ways and strange habits; with esoteric shopping catalogues and shops full of bewildering items with huge price tags, manned by over-eager and occasionally creepy salesmen. This lot did things very differently because they had no choice. Above all, they were vast in number, living all around me, hiding in plain sight. Researchers in the US scoured public health records in 2016 and found that more than half of Americans were living with at least one chronic health problem, substance abuse or mental-health condition. Rec
ently in the UK, the King’s Fund identified that about fifteen million people in England are smitten by one of the big six chronics – cancer, heart disease, strokes, diabetes, dementia and obesity – but add to that disability, neurological disease, arthritis, COPD, hypertension, mental ill health, epilepsy, asthma and substance abuse, and the number is off the scale and rising steadily. Already my tribe accounts for half of GP appointments, two-thirds of out-patient appointments and almost three-quarters of in-patient bed days, and dealing with us takes up the lion’s share of health and social care expenditure. I was now part of a vast constituency of people neither desperately ill nor healthy, just frail, ageing or always chronically needing something, who were fated to haunt hospitals, seeking answers that were never quite definitive.

  Hospitals were foreign territory before. The maternity ward, yes, but that was different, or you might have caught the inside of A&E occasionally, when your children hurt themselves, but then you were a mere anthropologist, tiptoeing into the jungle, and you could amuse the kitchen suppers for weeks with what you saw. ‘Honestly, Freddie is sitting in his muddy rugby strip, still got his boots on, and there’s this guy totally out of his brains, blood everywhere, handcuffed to a cop …’

  Now you’re a serial hospital lingerer, weary of the dead-eyed receptionists, accustomed to non-spinal nurses asking, ‘Can you stand at all?’ because your wheelchair inconveniences them. Another of those sarcasm-defying questions to add to the growing list. (You remember the deadpan wit of Chic Murray, the sketch where he was writhing on the ground, unable to get up. ‘Are you all right?’ asked someone. ‘Yes, I’m just trying to break a bar of toffee in my back pocket,’ he cried.) You learn that the main entrance to a hospital is like a customs post between two worlds, where the fit scurry through as fast as they can and the unfit create log jams in the manner of fragile grey snails. You seize gratefully upon the staff with kindly faces who offer you brief sanctuary; you become battle-hardened to being patronised.

  You study those who sit and wait alongside. Once upon a time, it occurs to you, you were all open-faced children, lined up for school photographs, squinting happy hope and light at the camera lens. Now, unravelled, you know better the hollow promise of life. You are the people who spend your time waiting, always looking for something to let you think you still exist, telling and retelling your sad stories at different desks to different members of staff, the weary slow-motion hospital waltz of those who will never be healthy again.

  I should have known better, really I should. Profound and mystery illness had blighted my mother’s family; every summer of my childhood had been spent at my grandmother’s home, where my disabled aunt lived. Not that the word ‘disabled’ had currency then. Aunty Averil was referred to as an invalid, an umbrella term for chronic illness of any kind. Not valid. Literally, from the Latin, not strong. Legally, null and void. Worthless. Untrue. A word only suitable these days to describe driving licences or immigration visas, not human beings. You can still be invalided, heroically, out of the Army, but incapacity benefit replaced invalidity benefit in the last century. In the 1960s, however, Aunty Averil had capital letters. Wrapped up in that scary, significant word was supposed to lie both reason and an explanation, but I knew only a puzzle. ‘My aunty is An Invalid,’ I used to boast in the playground and hope that no one would ask me what it meant.

  If Averil’s plight was an enduring mystery to us as children, so it was to the rest of the world. Averil was the first-born child of my grandparents, who lived in County Down, a few miles from Belfast. She had three younger sisters and two brothers, a happy gang untouched by war who enjoyed what we would describe as an idyllic Edwardian childhood of picnics and tennis and dressing-up parties. But in 1924, when Averil was twelve, she started to develop strange, debilitating symptoms. Eventually, the doctor gave the family the grim news: he believed she was a victim of the terrible affliction called sleepy sickness. No one knew what caused the illness, where it had come from, or how it was spread, but it had been first identified in the winter of 1916–17 in Vienna, and had reached around the globe in three years. In a world debilitated by the impact of the Great War, followed by the Spanish flu pandemic of 1918, sleepy sickness, later named encephalitis lethargica, slipped unnoticed across oceans and over thresholds. Averil was one of a clutch of victims in Northern Ireland; several people died of it in Belfast. England, Northern Europe and New York were the worst-affected places. For the next eight years, this bizarre, devastating epidemic attacked nearly five million people – many of them, like my aunt, girls under twenty. Forty per cent died in the acute stages; the rest, perhaps even more terribly, went into strange decline and slowly turned into statues, speechless and motionless, often with their brains intact but frozen within useless bodies for the rest of their lives. Doctors were bewildered. Initially the victims were diagnosed with delirium, schizophrenia, Parkinsonism and sclerosis, or as atypical outbreaks of rabies, polio and botulism.

  Victims would be conscious and aware, yet not fully awake and unable to speak. Only one part of the body, it seemed, did not succumb – the part of the brain controlling intelligence, imagination, judgement and humour. The victims, imprisoned in frozen, distorted bodies, could understand and remember but couldn’t communicate. ‘Their fate, so to speak, was to become unique witnesses to a unique catastrophe,’ said the neurologist Oliver Sacks, who was later, famously, to reverse some of its ravages briefly in an experiment recorded in his book Awakenings and a film in 1990 of the same name.

  Alone, alone, all, all alone,

  Alone on a wide, wide sea!

  And never a saint took pity on

  My soul in agony.

  That verse, heavily marked with pencil, jumped out at me from the printed page while I was writing this chapter – some deep magic, some random strike of coincidence took me to it. We had had our living room repainted, and the furniture had been moved. As I replaced old family books in the bookcase, I opened a worn, slim, canvas-backed school text, English Narrative Poems – and then blinked with wonder. On the inside cover, in a careful, rounded, girlish hand, was written ‘Averil Oakman, V Lower’. Tucked inside, there was a page torn from an exercise book ninety years previously, marking Coleridge’s Rime of the Ancient Mariner, that immense expression of desolation. On the scrap of paper she had listed the reasons for the ancient mariner’s suffering: ‘1 lonliness [sic] 2 dead men 3 rotting deck 4 slimy things 5 thirst 6 the curse which had never passed away 7 not being able to pray 8 the fever.’ On the last page of the printed text, she had underlined ‘till my ghastly tale is told/This heart within me burns.’ And then, as if to cheer herself up, on the page of the textbook she had drawn and coloured in a picture of a fat flower fairy sitting on a branch. Inside she was a little girl like any other.

  The onset of Averil’s encephalitis lethargica was less acute than some. She remained at home, part of the family, even attending school, and normal life went on around her as she declined. There is a picture of them all, taken about 1930, and Averil would have been nineteen or twenty. She is on her feet but her tall, wasted body is plainly propped up by my grandmother. Averil’s right hand is clenched into a spastic fist, while the other hangs limp. Quite the most poignant thing is the fact she is smiling brightly; the expressions of the rest of the family, by contrast, seem a little subdued. Studying that photograph again, as I write, I experience a bolt of connection. I’m familiar with that defiant smile, just as I am with the faces of loved ones shaded with sadness. They’re mirrored in pictures of my family today.

  Averil’s illness cast a permanent shadow on the family, creating worry and survivors’ guilt. My grandmother devoted her life to looking after her. It is no coincidence that Averil’s next two sisters, Harriet, her junior by two years, and my mother, by four years, in turn devoted their adult lives to caring for others. Of course those girls read books like Pollyanna and What Katy Did – they were defined by the message of determined optimism, of forbearance and resilience in
the face of disaster. Of course those same books were passed to my sister Lindsay and me in childhood, and in turn helped shape us. Because of Averil, everyone in the family was brought up to be stoics, even if they didn’t always understand why. It is human nature to find patterns. It is human nature to make patterns. And then fail to escape them.

  Granny and Averil at Tyrella beach in the 1950s.

  Among my earliest memories are summer holidays spent at the family home, and of Averil in her chair, propped in pillows, swathed in old crocheted blankets and picnic rugs, her head bent rigidly towards her chest. Her arms stirred like twigs. She would jerk sometimes, and spasm. She was then about fifty years old. During the day, she was placed in the sunshine at the front door, Mitzi, her dachshund, asleep under the blankets at her feet. Her eyelids drooped, her face had a mask-like quality – characteristic of the disease – but she had a lovely smile and the intelligence shone out of her eyes. Somehow, perhaps because I knew how important she was to my mother, I felt I should greet her when we arrived; I have a clear recollection of reaching out a hand, and she moved her tight, scrawny fist as much as she could towards me, so I could touch her knuckles. It felt awkward; she was a little frightening, this Invalid-with-a-capital-I. Our eyes met and in hers, even then, I could see empathy, understanding, a desire for connection. Then, to my shame, we grandchildren simply ignored her, running around playing. But if I looked up, I would sometimes spot her watching us, straining to see from under those lowered brows, with that shy, wistful, amused expression. I wish now, so much, that I had tried to talk to her.