The World I Fell Out Of

by Melanie Reid

  My right wrist, though, had something still going for it. There was still strength there. The hand therapist Leslie had come to see me and, upon her instructions, Dougie went shopping and found me a travel cup with the handle open at the bottom. I could wedge my palm under the handle and lift a mug of that precious baby tea high enough up to drink through a straw – my first independent action. Likewise, when the Gullet Controllers had carried out Protocol Two Testing, Permission to Take Solids, I was given yoghurts and found I was just about able, by myself, to dig in a spoon and then transfer it to my mouth. The feeding tube, a ghastly uncomfortable thing that had been strapped to my cheek and down my throat for weeks, was withdrawn – a peculiar sensation as the nurses reeled the long, thin pipe out of my stomach via my nostrils, as if hauling in the garden hose. At the time I took little notice of such progression, unimpressed, impatient merely that I was so feeble at simple tasks. As I mocked and fretted, denial built. Only later, wiser and humbler, did I come to understand the extraordinary significance of this hand–mouth coordination, and how lucky I was: so many people with broken necks, several of them in the unit with me, could not do this basic task and were doomed to total dependency in order to survive. Others needed months of hand therapy, and specially adapted implements, to be able to drink by themselves or reach their mouths with food.

  Time to sit up a little, another milestone. I was fitted with a white collar, like a Star Wars Storm Trooper, so that my neck was supported when my bedhead was raised a few degrees for the first time. This meant my first view of the new world. It also meant I saw my legs for the first time. Not good. Nothing – nothing at all – can prepare you for the appearance of those paralysed limbs, sprawled where you do not feel them to be on the bed, lifeless and somehow deeply misshapen. Someone else’s legs, not yours. I felt physically sick. They looked like the Guy Fawkeses we made as children for bonfire night, newspaper stuffed into an old pair of tights, puffy and lumpy in the wrong places, knees and ankles askew like scarecrows. These weren’t my legs at all; they were horrific, alien objects.

  Perhaps that’s what happens when you face sudden, extreme disability as an adult: a sense of disconnect, of disbelief, which I can best describe as a compound fracture of the soul. Losing the use of one’s legs is profound, an event so fundamentally wrong that it catapults you through a door which no one else who has full function can possibly enter, into a place which often is the loneliest place in the world. Humans were not meant not to be able to walk; we are hard-wired to move, and at the deepest level we understand that in movement lies our ability to survive, to feed, to keep warm, to seek shelter, to procreate, to interact. Mobility is caveman stuff – we are programmed to understand, somewhere in our ancient genes, that those who cannot keep up are left behind to the wolves. When wild animals and primitive people fall ill, or fail with age, or grow lame, they drop back from the herd. It is natural. Those who cannot walk are left behind; they become isolated; their weakness overtakes them; they stop, lie down and die. Elephants do it; sheep do it; Native American people did it. By allowing the healthy to move on, unburdened, nature ensures the survival of nature. Walking therefore has a grip over our imagination, which helps to explains healthy people’s subconscious prejudice against wheelchairs, manifest in their impatience and irritation and sometimes open hostility. Civilisation in certain instances can desert us in a flash, because deep down it’s about life or death. Walk and win. Go off your feet and you’re history.

  Long legs were good for skiing. In the Alps in the yuppie 1980s.

  Now I’m sure everyone, should they ever be forced to part with them, would be partial to their own legs, but I’d always been particularly attached to mine and my initial feeling was absolute bewilderment. They weren’t slim or beautiful, my legs, but they were so unusually long they defined who I was: a thirty-six-inch inside measurement, longer than most men’s, making me over six feet tall without shoes on. I liked that. They gave me scope, shaped my identity: in their time they had pogoed to punk bands, skied down black runs, ran half marathons, walked up mountains and done crazy charity endurance stunts. This is humblebragging, isn’t it? I’m boasting, pathetically, about something I don’t possess any more. But it is the only way I can plot the scale of my loss. My legs were my closest allies, my ever-ready Amazonian accomplices, enabling me always to skip away from bores and bossiness and bureaucracy. Catch me if you can. All of which made my present situation even more difficult; the sense of bereavement even more profound. Without my legs, I was baffled. What now? I’m sure every sporty person, every individualist and risk-taker who has ever damaged their spine, feels the same. How did we bridge the imagination gap between what was, and what is? Who was this godforsaken new person who could not move? I did not know them. Nor did I know what they might become. Nor, quite frankly, did I have any intentions of finding out. I was going to get better.

  Paralysis. The Venerable Bede prescribed a cure. ‘Scarify the neck after the setting of the sun and silently pour the blood into running water. After that, spit three times, then say: “Have thou this unheal and depart with it.”’

  Paralysis. According to Wikipedia, defined by the loss of voluntary movement or motor function. A late Old English word, via Latin from Greek paralusis, from paraluesthai ‘be disabled at the side’, from para ‘beside’ + luein ‘loosen’. A term used figuratively from 1813.

  Paralysis. According to the Egyptian physician Imhotep, 3,000 to 2,500 years BC: ‘If thou examinest a man having a dislocation in a vertebra of his neck, shouldst thou find him unconscious of his two arms and his two legs on account of it (and) urine drips from his member without his knowing it, his flesh has received wind, his two eyes are bloodshot … he has an emissio seminis which befalls his phallus, thou shouldst say concerning him, “an ailment not to be cured”.’ Give or take the phallus, old Imhotep was spot on.

  Paralysis: all in all, a complete bastard of a word.

  The human skeleton is designed to protect your core nervous system at all costs: the vertebrae link like chain-armour around it, grow bony spikes on the outside to foil intruders. The spinal cord is the wiring from central command and control; it is the engine of your free will; the power and pleasure of your flesh. When the spinal cord is damaged, it is indeed like a nuclear attack, the ultimate hit. Your body does everything it can in defence: it shuts down, retreats into itself, sends fluid to the site of the injury. Every resource available goes to the core and the extremities get forgotten about. The surface of your hands and feet become thickened and leathery with excess skin. Your heart rate slows, you start to retain litres of water and swell all over. The body remains in a state of suspended animation for four to six weeks, during which time accurate diagnosis of the extent of your injury can be impossible. Some weeks after my accident a deep ridge started to emerge from the cuticles at the bottom of my fingernails and slowly grew its way up: a tremor in my body’s rock stratum; a record of the geological seismic shock within me.

  They don’t hang about on the NHS. As soon as my neck was judged suitably stable, they started to hoist me into a wheelchair. There is a set regime to protect the skin on your backside from pressure sores. You start with half an hour a day in the chair, then an hour. You build up. You carefully toughen your epidermis to its new weight-bearing role in life. Overnight, your buttocks have become the soles of your feet. When you accustom the skin to that fact, you’ve reached the magic goal in spinal rehab of ‘up as able’. You’re then allowed to sit in your chair all day. This process takes weeks.

  Getting up was a ritual like preparing a medieval knight for battle, a fairly accurate reflection of the pace of life with a spinal injury – achingly slow, with progress measured on a scale too tiny for the able-bodied to contemplate. Understand the mammoth effort, you able-bodied, and you will never again take for granted the fast, fluid ability to sit up in bed, swing your legs over the side, and stand up. First, the nurses have to dress you. It feels like they are stuffing a gia
nt sausage. No underwear, just the baggiest T-shirt and joggers you possess. I had asked the boys to bring me in one of my 10k race T-shirts and the nurses cut the neck to widen it. It was a symbol of who I really was and my statement of intent – a sporty person who shouldn’t be here. Mistaken identity. As reality bit, I felt embarrassed and threw it away.

  Then they put on my high, choking collar and they rolled me on the bed into a hard white plastic shell, a back brace, to protect my lower-down fracture, until, trussed, I resembled a Storm Trooper even more closely. Why was I so miscast? Didn’t they realise I was actually, in my past life, a female Jedi warrior? The brace on the collar extended down my sternum; the body brace came up to meet it. Thrust up into the gap between, elevated like some spoof medieval embonpoint, came my breasts. They sprouted, insensate, near my chin.

  ‘Jesus, your tits look amazing,’ said a male colleague who came to visit me a couple of weeks later, ‘like they’re peeking over the garden fence.’ Never was there a less sensual image.

  Only then, fully armoured, was it time to be hoisted into a chair. Lack of balance and orientation from weeks spent lying flat, plus the low blood pressure endemic to my injury, made this an ordeal. Seasick and head swimming, headsick and seaswimming, I was rolled to get the hoist cradle under me, and then lifted up to dangle for all the world like a dead cow in an abattoir; whereupon they lowered me into a wheelchair, rocking me forward and back until my weight was centralised. The whole process was exhausting, lengthy and discombobulating. That first time, I cried out in fear – I had a terrifying sensation that my head was loose and was going to fall off backwards, so the physiotherapists fashioned a temporary cardboard extension to the chair back to comfort me. They told me my neck was completely stable and things would get easier but I was not convinced. Inside, I screamed at the indignity and the horror of it: outwardly, I put on a grim smile and told myself sternly that this was progress. This was how to get better. First goal, get used to the chair. Then begin the recovery.

  Once in the chair, I could resume some adult responsibility. My immediate boss at The Times, Magnus Linklater, had been one of the very few allowed in to visit soon after the accident. He had told me not to worry, and kissed me on the forehead. The kiss struck me as terribly kind but rather worrying. Was I really so ill? It was evident to all but me. Then Anne Spackman, the comment editor, who told me she had wept as she transcribed that initial tape recording, flew up from London. I showed her how, now I was up, I could use a laptop with one finger. I couldn’t grasp why everyone seemed so surprised about my determination to try and get working again. Anne was followed by the editor of The Times at the time, James Harding. The nurses arranged for me to meet him in the conference room. Hazily fearful, I think I expressed my insecurities about the future. He could not have been more supportive. Could I continue to write, I asked hesitantly. The professional editor in me, despite the madness of the morphine, smelt a source of good copy. Of course I could, he said. In fact, he wanted a weekly column about my recovery, to be published in the Saturday magazine. My heart, I remember, leapt.

  ‘The only thing is, we don’t know what to call it.’

  ‘Oh, I’ve already thought about that. What about “Spinal Column”?’

  Did he know, this most human, warm, sophisticated man, that he was handing me a precious lifeline? Not just in terms of my family’s future, but of my psychological survival. Here was a chance for me to create my own biographical narrative, to write towards some kind of redemption.

  Labouring under many illusions, and feeling quite breezy – I do think the opiates were largely to blame at that stage – I then tackled my first session in the gym, which swiftly brought home the brutal realities of my situation. The cruel parallels of two worlds were beginning to impact on me, old and new crushing me between them: the gyms as I had been familiar with them, Lycra-ed temples of beautiful fit bodies in motion; and gyms, paralysis-style, where broken, frozen people were propped upright, in various stages of disorientation and bewilderment. Plus, there were unseen horrors to discover. I was about to have a crash course in the reality of paralysed bowels. As two physiotherapists used a hoist to lift me from wheelchair to specialist rehabilitation plinth, gravity struck. My bowels suddenly and involuntarily emptied. The only way I knew was by the sound and then the nostril-fluttering smell, which trapped me in a ghastly freeze of humiliation. What was the famous Nike gym slogan? Just do it? Well I just did. ‘Uh-oh,’ said the physiotherapist at the wrong end.

  Too upset even to cry, I could only stammer my apologies, but they were totally nonplussed, matter-of-fact. Don’t worry, they said. Part of the job. Happens all the time. For me it seemed catastrophic. My first morning in the gym, when I had planned to hit the machines, develop sizeable shoulders and start my legs moving again, all within the space of an hour, and there I was being lowered, stinking, onto pads on the wheelchair, hurried back to the ward, laboriously hoisted again onto a bed of pads and rolled and cleaned like a baby. I was getting an inkling of what exactly paralysis entailed.

  Over the next few days, I had a few more brief sessions in the gym when, thank God, my bowels did not betray me. The gym offered a welcome distraction from reflection. It wasn’t wise to sit and dwell on your plight. ‘Gym,’ one cynical spinal consultant once muttered, ‘is really only there to take people’s mind off things.’ You hid your despair as much as you could, if only because too many tears invoked a dreaded visit from the Kiwi psychologist, whose amiable ‘Have you got time for a chit?’ confirmed to you that matters really were wrist-slittingly terminal.

  The gym in fact, became all-consuming. I got my first taste of what it would take to strengthen my arms and shoulders and returned to the ward furious at my own weaknesses. Where was bloody superwoman now? Ten minutes on the handcycle – where my hands were bandaged to a set of handles rotating at shoulder height – left me puffing as I would once have done running on a treadmill. Another big test was to propel myself for the first time in a chair. It sounds so easy but it was such a ridiculously difficult, slow-motion challenge, even just twenty yards down the hospital corridor, that when I made it back to the ward I was totally drained. My right hand, because my wrist was strong, was good at pushing but the left, a bunch of stone bananas, couldn’t grip the chair’s push rims and the imbalance made me zigzag across the lino. To compensate, I turned my left hand and elbow outwards from the shoulder, like an injured bird, and propelled with the edge of my palm and wrist. There was some residual power. Life, it occurred to me, in an image which would be repeated, honed to perfection over the next decade, was beginning to feel exactly like one of those sadistic TV game shows made famous by Clive James in the 1980s. It was the genre of humiliation as entertainment, which began on Japanese TV and in Britain evolved into I’m a Celebrity Get Me Out of Here. And that was exactly what it felt like for me, that world of crazed, pointless challenges tantalisingly just beyond the contestants’ grasp, the stream of filth and cockroaches cascading over their heads. And the celebs had it easy: they went home after a month.

  With the ability to push a few yards came a tiny amount of autonomy and I started to explore the corridors around the high-dependency unit, like a toddler exploring her home. I would reach a big window, or a glass door, and peer out at the sky and a bit of treetop behind the roof. Sometimes I overreached myself and had to sit for five minutes, resting, at the corner until I was strong enough to turn. Five minutes … the most inconsequential flick of time in a spinal rehabilitation ward, where snails moved faster, their goals better defined. David Allan, the director of the spinal unit, the man who had clenched his fists in A&E for us to demonstrate what happened to my neck, had already warned me my rehab could take over a year. When he had said it I was aghast; now, reluctantly, I was beginning the process of understanding.

  The awakening consciousness, the struggle to regain some form of control over my life, was encapsulated by my tragi-comic battle over my hair. When you break your neck, you are
condemned to have the back of your head set on a pillow for, well, much of the rest of your life, and in the shorter term to wear collars for several months. My thick, wavy hair was problematic. Too short to be tied on the top of my head in a pineapple – the only place where it would be out of the way – but long enough to snag and mat like the fur of an abandoned dog. And it hurt. Being unable to raise my head was ordeal enough; having the elastic straps from oxygen masks to tug my scalp, tubes to stick in the hair, tears to dry in it and a collar to catch it made my daily existence more miserable. The back of my head became a hot, itchy torture and just as I had earlier obsessed about drinking a coffee, so I now fantasised about having my hair shaved like a GI. Cut it off, I commanded the most friendly nurses. They laughed at me. I blustered that I would do it myself, but of course in reality I wasn’t able to raise my head unaided, let alone lift my arms behind my head, or wield scissors. I ordered Dave to send for two of my most resourceful friends. I demanded my human right to have my hair cut.

  But my husband, less impulsive than me, was concerned it would be against hospital rules or might injure my neck. He refused. I tried again with the nurses, they asked the ward sister, but she too had a touch of the Fat Controller about her, and forbade it – some specious excuse … health and safety, infection control, possibility I might sue them – and I lay and seethed with impotent fury as my Rastafarian mat hummed behind me on the pillow. I remember eyeing the sister balefully as she stood at the nurses’ station. Bloody jobsworth, hidebound by rules. Totally exasperated at my lack of control over something so trivial, I resorted to asking my consultant on the ward round. Dr Purcell raised a cool eyebrow and agreed a family member could cut it. So it was that my sister Lindsay, over from France and armed with a pair of blunt disposable NHS scissors, gave me the best cut of my life – hacked short and choppy up the back of my head. She insisted on leaving the length on top. The result was Simon Le Bon circa 1983 but I felt so free and cool and happy I couldn’t have cared less. My appearance, I had at least twigged, wasn’t going to matter that much for a while, if ever again. I had bigger priorities ahead.