The World I Fell Out Of

by Melanie Reid

  I emailed back, telling them I didn’t want my picture taken. By reply, some callow youth on the desk promptly asked if they could be supplied with an X-ray of my broken neck instead. I had been moved into a single room by then and it was just as well, because my reaction scared even me. I started sobbing hysterically, outraged at his insensitivity, his invasion of my secret kernel of hurt. All the emotional valves opened. It was totally irrational, and out of character, but I was very close to the edge. The poor man’s error had been, inadvertently, to request the very thing I was spending my waking hours trying to escape – the reality of my situation, the prognosis I couldn’t face, the unavoidable physical evidence of the catastrophe I was carrying around inside myself. During the previous months of dogged recovery, I had deliberately never asked to see an X-ray or an MRI scan of my neck because I knew I wasn’t fit to cope with it – and in fact it would be many more months before I did look. Seeing them would have finished me, extinguished all hope. As long as I was improving, I could shut out reality, but his request had shattered the pretence. I missed gym and, for the rest of that day, I wept to the point of exhaustion, and several members of staff were concerned at my distress.

  Perhaps it was no coincidence that I received a two-pronged visit from the consultants, Mariel Purcell and David Allan, playing good cop, bad cop. They told me I was over-tired and should cease writing my weekly column. The idea shook me, because writing framed my week, gave me as much purpose as going to the gym. It was something I could do. Funnily enough, I learnt later that one of the key things which allow male spinal injured cases to successfully rebuild their lives was getting back to work. For men, employment defines them. Well, maybe I was a bloke, because I felt the same way. I resisted. The doctors and I bargained.

  ‘I could maybe take a couple of weeks off,’ I said.

  ‘A month to begin with,’ said Dr Allan. ‘You can tell them, what is it? – Jeffrey Bernard is unwell.’

  ‘But he was a drunk. There’s nothing wrong with me.’

  ‘A month and then we reappraise. No less.’

  So a month it was, over Christmas and beyond. That was the winter of 2010/11, when ice and snow blanketed the UK for weeks, closing down road networks and airports. The deep freeze seemed appropriate for me somehow; outside synchronised with inside; a sense of asceticism and suffering, waiting for spring. Like my body, the earth was in a state of suspension, yearning for the thaw. I sat in my room watching the bare branches of the trees, feeling the cold striking through the big panes of glass. They ran out of spare blankets in the unit that winter, and I remember feeling cold even with five piled on top of me and an extra convector heater in my room, for overnight. For several weeks the ice and snow was so bad that it was impossible for me to go home for the weekend. Wheelchairs and snow are inimical. Some days Dave, even with a four-wheel drive, struggled to get into the city, and I told him to stay at home. That was when, devoid of work, purpose, people, and distractions, I found the loneliness of paralysis became profound. Stillness settled upon me. One Sunday morning, when my curtains had been opened but I was lying passive in bed, because without gym there was nothing to get up for, a magpie came and flattened its black and white belly against the top corner of my window, wings outstretched and flapping against the glass, holding itself there like a hummingbird. I watched, holding my breath, as this big, startling, wild creature pinned itself to my life, plucking and probing at the seals around the window. Then I realised it was removing spiders’ white egg sacs from the crevices – perhaps the final stash of emergency rations in a bad winter.

  After you damage your spine, or suffer a stroke, there is a doomy word which starts to haunt you – plateau. Plateau means the death of hope; means your body has gone as far as it can. You have reached the level of disability on which you are going to stay for the rest of your life. Although my progress had been considerable, it had also been very slow, and I was now reaching the outer limits of time I could stay in the spinal unit. As a general rule, paraplegics stayed for between three and six months, tetraplegics between six and nine. Unless I could demonstrate that I was continuing to improve in every way – my life skills as well as my walking – my time would soon be up. I knew very well that this would mean an abrupt end to the most dedicated, expert, intensive neurophysiotherapy that I was ever likely to receive. I had been lucky enough to be injured close to the spinal unit considered one of the very best in Europe, and I was terrified of leaving the cocoon of understanding and therapy. Tragically, in my opinion, then or now, spinal and stroke units do not offer physiotherapy to out-patients. To pay a private specialist to supply me with twenty plus hours of therapy a week, as the unit did, was not even a possibility. To begin with, after discharge, I would get one hour a week from a community physiotherapist – for which I was very grateful – but, given my psychological fragility, it seemed that a bleak future loomed.

  The only thing to do was maximise my stay. While I drove myself as hard as I could in the gym, I began to joust with the system of bureaucracy dedicated to slowly but surely managing me out of the door. Time in the spinal unit receiving rehabilitation, as in other types of hospital departments, was governed at that time by something called FIM, which once upon a time stood for Functional Independence Measure. I could think of other things the F stood for. FIM was a tool invented by the Americans in the 1980s, and adopted the world over, which was designed to keep long-stay hospital patients moving through the system. It was to keep the accountants happy. You were graded on your ability for self-care, sphincter control, transfers, locomotion, communication, and social cognition. Box-ticking stuff, dehumanising the decision-making. Your FIM score was, in the hands of management, an iron belief system, deployed ruthlessly to keep patients churning. The moment your score started to slow, it meant you were as fully rehabilitated as possible, and it was time to pap you out. It overruled doctors and physiotherapists. My FIM had been stalking me since I arrived; and, try though I had, it looked like it had finally caught me up.

  By nature more anarchist than bureaucrat, I hated it with a vengeance.

  Amanda, my occupational therapist, was responsible for teaching me new life skills. Ask a layman what an OT does and they will shrug. What on earth do you need that for? What a non-job. But in the world of the frail and disabled, OTs were gurus, full of golden ideas and practical suggestions to make you as independent as possible. Amanda was a pretty Geordie who looked and sounded like Cheryl Cole, but with short hair, brains and rubber legs from spending so much of her time kneeling on the floor, working with people’s frailties. She possessed a great sense of the ridiculous and I loved her. She had showed us how to adapt our house with ramps and in one-to-one sessions in the unit she taught me how to fill a kettle, make a sandwich, put on deodorant. She brought catalogues to reveal dozens of little gadgets which would help me grip kitchen implements and provided me with a grabber, a stick with a trigger finger so that I could reach across work surfaces or pull doors shut. The most challenging stuff for me, though, was dressing, washing, toileting.

  One of my spinal friends used the words ‘vacuum-packed’ to describe the daily curse of waking up with a spinal cord injury: it was true then and it is still true today. Every morning, you are that lump of meat, perfectly shrink-wrapped on a tray. Fat-trimmed, blue-veined, artfully arranged by others, with that wistful emptiness which paralysis brings to limbs, but utterly trapped. No matter how supple and mobile you felt when you fell asleep the night before, every morning you must start all over again, fighting your way out of your prison. On waking, you are invisibly stuck to the bed. There is no giant miracle sharp knife to free you, only sheer willpower: firstly to raise your head and neck from the pillows, then the huge effort to get onto your elbows; then, shoulders and abdomen pinned by a thousand Lilliputian ties, you persuade your elbows to straighten and inch your way to a sitting position. Your hands are set into rigid claws and your spasms rack you from middle finger to big toe. Dressing my bottom hal
f was nigh impossible, but if I wanted my FIM brownie points, I had to do it. My wardrobe had reduced to a minimalist’s minimalism – T-shirts with wide necks, no buttons, no zips, no underwear, elasticated-waist trackie bottoms, but the trousers involved a thirty-minute fight on the bed, struggling to hold myself in a sitting position while I heaved up my knees and tried to get the cloth over unbending feet, then rolled, rocking buttock to buttock, to pull them up. My rigid legs actively fought me, defying all my attempts to reach my feet. There were contortions, tears, frustration, exhaustion. Putting on socks and shoes, with hands that could not grip, was almost impossible, but I persevered. After our sessions, Amanda would score me according to whatever progress I had or hadn’t made that week.

  FIM scores ranged from 18, which meant basically comatose, to 126, which was able-bodied. At your monthly goal-planning meeting, your score was presented to the discharge coordinator, a pleasant but terrier-like woman who enforced FIM rather as the Stasi might. When I came into the unit I was given a predicted LOS (Length Of Stay – the acronyms were like bushfires, you could never put them out) and by now I had blown my LOS and was screwing up her discharge targets. At the end of every meeting, I held my breath and watched her preparing to set my discharge date. And month after month Susan and Amanda would give reports saying that my physical progress and my FIM score were still improving. She would put down her pen and sigh. Nothing personal, but the slow onset of my recovery and my exceptional but slow progress were buggering the system. It was cat and mouse. She was watching. I was hiding. The minute my FIM score plateaued, she had me. And oh what I put myself through, in my madness, as my recovery headed towards its ninth, tenth, eleventh month. I would exhaust myself struggling to put clothes on, or get my legs on and off the bed by myself. I told Amanda white lies, which she saw through. I pleaded with her to give me 0.5 FIM points, but they didn’t do half measures.

  ‘You’ve got to be able to get shoes on before I can give you another point,’ she said.

  My score had climbed to 100, but I had reached my limits. It wouldn’t climb any higher. And I knew she knew that I knew. The authorities always get you in the end. As a parting shot to FIM, I quoted a major American study on it: ‘Each person’s potential for recovery should never be limited to a set of numbers.’

  Simultaneously, on the life skills front, I was fighting to get myself in and out of a car independently. Being able to drive again when I left hospital had become another goal. In the cut-in-half Fiat Punto in the gym, I had first learnt how to transfer from chair to passenger seat. Now it was into the driver’s seat – and it wasn’t easy. The Fiat was very low, with flat sills, and my legs were getting lighter as I lost weight. With enough practice I reached the point where on a good day I managed to lift them in to join me. My next challenge was to disassemble my chair and get it in with me, and the cheap and easy protocol was to belt yourself in the seat, lean back out and dismantle the chair and then lift it, piece by piece across your chest to stow on the passenger seat. Watch a strong paraplegic with low-level paralysis doing this, and they will do it in seconds. For me, with rubbish hands and a weak torso, it was as difficult as putting on trousers.

  One day, thwarted by the weight and awkwardness of the chair, I left the gym at close of play sobbing with frustration. As I sped up the corridor to the privacy of my bedside, I ran slap bang into two tall men in RAF jumpsuits, brimming with the head-turning swagger of drama, machismo, and adventure that a military uniform brings. The nurses were agog, circling. They loved visits from men in uniform.

  ‘Hallo,’ said the bigger, glamorous one. ‘I’m Dishy Daz.’

  It was my rescuer, the winchman I had last seen when he leant his face close and said urgently: ‘Keep breathing for me, girl … Do it for me,’ over the clatter of the helicopter. In the intervening months I had daydreamed of this moment. I would be on my feet, on crutches, looking slender, fragile and feminine as I thanked him for saving my life. His eyes would crinkle with tenderness and he’d offer to fly me home. Instead, here I was in my chair, tears streaming down my cheeks, soup stains on my T-shirt and, in the absence of a hanky, hands and wrists smeared with snot trails from wiping my nose.

  ‘I’m really sorry I’m crying,’ I sobbed, desperately trying to find a dry bit on my forearm to catch the mucus. ‘It’s just that I’ve been trying to get into a Fiat Punto.’

  ‘Oh, don’t worry,’ said Daz, who routinely dangled on a cable over mountainous seas and cliffs to rescue people. ‘Getting into a Fiat Punto would make me want to cry too.’

  They had come off their Sea King and left it parked near A&E, as you do if you’re RAF Search and Rescue, and they were carrying a framed picture of the aircraft, wrapped up in brown paper, which all the crew had signed for me. They said they’d been carrying it in the chopper for several weeks, hoping it wouldn’t get broken, until they got an opportunity to land at the hospital and bring it to me.

  Daz, or Darren, told me he owed me one: his nickname used to be Wurzel, but after the article about my rescue was printed in the paper, and after his crewmates had taken the mickey out of him relentlessly, they’d renamed him Dishy Daz. He and the pilot, Al, were lovely men, as you would expect – nonchalant about their dramatic job, humorous, understated, kindly, sexy. Because we project onto such people all that we would wish them to be. I thanked them profusely for rescuing me, and rushing me to hospital when all looked bleak. They must get so used to it; cast in a heroic role. They were not with me for long. Their buzzers went – their helicopter was needed for another emergency – and they said their goodbyes and hurried off back to the helipad. In their wake the nurses swooned and the air swirled; there was that sense of something magical having passed, something thrilling, a glimpse into another world.

  By now, Susan had acquired a specialist wide, three-sided Zimmer for me to try walking with. When I stood, bearing my own weight on my feet, leaning now on my hands, it felt as if I was an amputee, propped on two deeply uncomfortable wooden stilts. That discomfort made me want to collapse back into my chair, from where, on the whole, life was much easier. Part of the exhaustion, I realised, came from the intense concentration needed to control my lower body with my eyes, ordering my knees not to buckle. And so we entered the final phase: from shuffling along parallel bars, painfully slowly, awkwardly, I was now onto a small frame and effectively mobile. What should have been a triumph was thwarted by lack of stamina. I might manage two or three steps, then waves of weakness broke over me. There was no fuel in the tank. I could never travel any distance.

  There was one memorable afternoon when I set off – lift, lurch, step, drag, gasp, the undead stumbling from its cave – and I managed to do about seven steps before I needed to sit down into the chair that Susan was following me with. It was the closest to independent walking I was ever to do in the unit. And of course I was delirious with joy and optimism. When gym was over, I whizzed back to the ward. At the door of my room I met one of the senior nurses, Laburnum, a woman who believed in saying it like it is.

  ‘I just walked halfway across the gym,’ I told her, eyes shining, face alive with happiness.

  She looked at me coolly.

  ‘Your walking will never be functional. You know that, don’t you?’

  She didn’t say it in a kindly way.

  I had never really warmed to Laburnum. Now I hated her. For my final couple of weeks in the unit I struggled to look her in the face. When you are deranged, you cannot handle too much insensitivity. By now the nurses knew me well and the sensitive ones were aware how hard I was trying. Tansy, a staff nurse, showed me extraordinary kindness after I had what amounted to another emotional meltdown over my hair. Hindsight casts the episode in a ridiculous light, but my distress was absolute. The hairdressers I usually went to, pre-accident, were upstairs in the city centre, ruling out a visit, so I had phoned to ask if a junior could come and do me in hospital. But because, however hard I tried, I had never learnt to speak hairdresser, there was
a misunderstanding and she gave me orange hair. Not quite the orange of a see-you-jimmy hat, but not far off. When she had gone, and I saw the extent of the damage, I started crying again and couldn’t stop. The only part of me over which I had proper control, my head, had been lost too. So wretched was I that Tansy phoned a nearby hairdresser and volunteered to give up her break in order to push me there.

  It was during that same deep winter and few of the pavements were cleared. Great troughs of frozen slush lay in the gutters and at pedestrian crossings. The cold struck into our bones and the front jockey wheels of the chair jammed in the snow. But that wonderful nurse dragged me for about five hundred metres through the worst of it to the hot, raucous haven of a hairdressing shop. This was Govan, so the salon wasn’t Charles Worthington, but the stylist was warm, practical and utterly on my side.

  ‘No problem, doll, I’ll fix you.’

  She toned down the vivid orange to mid-brown, and proceeded to trowel on a few glorious streaks of bleach through the front. No foil or mesh niceties in Govan – here it was slapped straight on with a brush. The end result was great – bold and blonde, a tad footballer’s wife, and I was delighted. Who cared if my hair was so burnt it later fell out. That was later. Tansy dragged me back through the snow to the unit, brushing off my thanks. For every bad memory of the staff, I left with twenty good ones like that, of compassionate women who, seeing me in distress, would put themselves out or buy me a coffee with £2.50 they could ill afford, and then sit and hug me while I wept on their shoulders. I guess I spent so long in hospital, observing the demands upon staff and the way some patients treated them, that I went native. While lying very, very still, I nevertheless walked in their shoes. They deserved respect and better pay than they received.

  There was no spectacular climax to my time spent in rehab. I left the unit in a wheelchair. To my regret, I did not achieve my dream of walking out of the door. My ability to stagger a few metres, heavily supported, was not enough for any symbolic flourishes; besides, I lacked the stamina to make it as far as the kerb. By now I had accepted that I would always be disabled, but I remained convinced that I was still improving, albeit at a snail’s pace, and that if I kept trying I would keep moving forward. In my head, I had not yet plateaued.