The World I Fell Out Of

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.

Around then the doctors finally took me off tramadol and I experienced my first proper sleep, morphine-free. I remember waking with a sense of profound joy, awash with the novelty of feeling deeply rested. Unbelievably restored, at peace. All traces of the orange cable-stitch wool had gone away and the sunlight was streaming through the thin patterned curtains around my bed, a pattern of blue oblongs and squares which I had, it seemed, been studying and reinterpreting for years. For the first time the material looked fresh, normal – just cloth – not an omen, or pictures, or a metaphor, or a maze.

It was time to move into the unknown.

CHAPTER THREE

Swallow Diving from the Seventh Floor

What hath night to do with sleep?

John Milton, Paradise Lost

The rehab ward was no place for sissies. I learnt that in the middle of my first night, woken from sleep as if for a hostile interrogation. Two nursing assistants arrived in my bedspace with a flourish, switching on the full-strength fluorescent examination light overhead, pulling the curtains noisily shut behind them, stripping back my blankets. It was somewhere in the small hours; there were other patients asleep a few feet away in the same room.

‘What’s happening?’

No reply. They were talking, but not to me.

I was bewildered, dazzled, disorientated. They were putting their hands under me, moving me across the bed. Maybe this was another fantasy kidnap.

‘Please, what’s happening?’

One of them broke off from their conversation.

‘You need turned.’

He reeked of cannabis. Dougie always said I had a nose like a bloodhound but this guy was in a different league. You could almost taste it. Together they worked like a Formula One pitstop team: rolled me onto my other hip, wedged a pillow behind my back to keep me there, placed another pillow under my top knee, and switched my overnight urine drainage stand, attached to my catheter, to the opposite side of the bed. It was done in seconds, a slick, well-practised manoeuvre. Wham bam, wheelnuts tight, off you go, Sebastian Vettel, back out of the pit lane.

‘OK,’ Doobie said. It wasn’t a question. They switched off the blinding light, pulled back the curtains, and moved to the next bed. Click, swoosh, gone. Not remotely cruel, but not remotely kind either. Disengaged, impersonal. I wasn’t a person; I was a task, one of dozens of four-hourly turns they had to perform through the night. It was an attitude I was to become deeply accustomed, and eventually immune to. But right at that moment, I had never felt more alone, more insulted by the stench of cannabis, or more acutely aware of what a sheltered, precious, middle-class prat I was to feel so offended. Later, when I got to know Doobie better, I became quite fond of him. But not his smell.

Way back in the beginning, hospital was a sanctuary. Like driftwood washed to the top of the beach by a high tide, salt-bleached, splintered by the storms, you just rest awhile, nestling in the sand. Something terrible has befallen you, but if you lie very, very still, you will be safe. Nothing is asked of you. Hands which you cannot feel will gently position you; quiet voices address you. In intensive-care and high-dependency wards, they turn you frequently in the night to protect your skin from pressure sores, but they do it discreetly and by torchlight in order not to wake you. When you cease to be acutely ill, and move away from those remarkable acute areas where the staff ratio is generous and the NHS functions at its very best, things change. The nurses in high-dependency tried to warn me about the difference in ethos awaiting me. ‘It’s different next door,’ they said. Next door was the adjoining corridor, the forty-bed spinal rehabilitation ward, where, having had your spine stabilised, you would be schooled to cope with your condition. Weeks later, Euphorbia, one of the senior rehab nurses, proudly shared with me the standard joke about the transition.

‘Like going from the Ritz to a Travelodge,’ she said. And laughed. Took me a while to find it funny, but I did eventually.

The ward seemed more Guantanamo than Travelodge, though, that first night after the interruption, as I lay with a thumping heart and retinas imprinted with the white-hot square of the ceiling light. It struck me, as I struggled to take in the rules and understand the rhythm of the ward, that this was what being dumped at boarding school must have felt like to a sheltered child. A doctrine of tough love with the love taken out. Newly paralysed, I was exquisitely powerless to do anything but watch and listen. Once again, I garrisoned myself deeper and deeper in that only safe place, my head. Once again, it came down to survival.

And boy, imprisoned, motionless, I really did feel my spaceship had landed me on yet another alien planet. I had to learn fast. There was something almost Darwinian about it. Sink or swim. Adapt or die. A rehab ward in a spinal unit is like an under-strength factory floor: too few staff battling to a relentless timetable of feeding, medicating, washing, toileting, dressing and hoisting dozens of helpless carcasses into wheelchairs to get them to the gym. I guess it’s a bit like a geriatric ward only there’s more shit and less dementia, and I’m not sure, from a nurses’ point of view, if that’s a wholly desirable payoff. The operation was geared to through-put. The aim was to get us wrecks into the best possible state of semi-independence as quickly as possible, aware and able to self-manage, so we could be returned to our homes. It was noisy, smelly, shitty, relentless hard work for the nursing staff and a slow, tormented awakening to reality for the carcasses, many of whom lacked even the motor function to press their call buzzer for attention. But it was functional. Something had to be done with us.

Things, I swiftly discovered, wound themselves up from 6 a.m. onward, in preparation for the 7 a.m. handover, when the nurses’ twelve-and a half-hour-night shift switched with the twelve-and-a-half-hour day shift. There is a grim unforgiving routine when you have paralysed bladder and bowels. Conveyor-belt stuff. The nurses detached our overnight urine drainage bags, great wobbling two-litre plastic bags of yellow fluid collected from indwelling catheters, and emptied them down the loo. Before handover, in the dawn light, they would leave us our little morning package of delight, anal suppositories wrapped up in an incontinence pad, on the ends of our beds. ‘Are your supps in?’ echoed the cry.

Paraplegics, whose arms and hands were not paralysed, were taught to reach behind their backs to their bottom and shove their own up. Tetraplegics like me, who could neither hold nor reach, had to wait to have the nurse do it. A few minutes after insertion, as the suppositories began to do their work, our semi-naked bodies, big, small, and everything in between, were hoisted onto commode-style shower chairs and wheeled into the bathroom one after another, to be poised over the loo until our bowels delivered. There was a critical time balance as to how long you waited. Left in bed too long, you would poo on the sheets or, worse, in the hoist; or perhaps even dump upon the floor through the hole in the shower chair seat en route to the bathroom. Too short a time, and you would sit for what seemed like hours over the loo, waiting for the splash that told you something had happened. It was the only way to tell. You had no feeling.

Eventually, a staff nurse would come and use a gloved finger to check that your bowels were empty; and then you would be showered. Often your bowels didn’t oblige and after half an hour or so, with you cold and acutely miserable on the hard plastic split seat of a shower chair, a staff nurse would come and put their fingers up your anus, stimulating the rectum until it released. Some nurses were better at it than others. They were the ones you loved because they were fast, efficient and gave you confidence that you would last the day without an accident. The ever-cheery Rosebud, one of my favourites, used to waggle her index finger and joke that she should have it insured as one of the best in the business. Without the willingness of spinal nurses to put their hands up dozens of backsides a day, closing their noses to the smell of faeces, the paralysed would die. It’s as simple as that. Perhaps it’s no surprise that death rates for spinal injuries improved after the invention of the disposable latex glove in the 1960s.

They gave as good as they got, those fast-talking, insouciant Glasgow girls. Lupin, her uniform straining over her fabulous bust, had spent the morning crouching on the floors of bathrooms, beside arse after arse, evacuating poo. Later she sounded off to some of us, the patients she trusted, about being criticised by one of the consultants.

‘He’s like complaining it was too smelly when he was doing the ward round.’

She threw her hands out, paused for effect.

‘I’m like, “No shit Sherlock!”’

‘Did you really say that?’

‘You kidding?’

For us, new trainees in the hard school of double incontinence, this was the start of an entirely different way of life. We laughed about our plight when things went particularly wrong, forged together by the dark humour, the dry-as-dust jokes, the human condition stripped to its most primitive. It was, I guess, like a PoW camp. With it went an undercurrent of real camaraderie, a shared acknowledgement of our common misery. Up and dressed one mid-afternoon, a dozen or so of us were parked in our wheelchairs in a polite semicircle, staring at the wall onto which was projected the first slide of a PowerPoint presentation. And one of our number, a distinguished man who had boarded a plane at Heathrow but when it landed was unable to stand up because he had suffered a spinal stroke, leant over from his wheelchair towards mine and muttered:

‘Did you ever imagine a situation where you would sit gazing intently at the words “Bowel Management”?’

Indeed, there were far too many things beyond the power of imagination and they were pressing in on us. We got detailed tutorials. We were as mordant as we could be, for without a highly developed sense of the ridiculous, how else could we cope with bleak forty-five-minute lectures about suppositories, peristalsis and sphincters; or indeed, in subsequent sessions, about pressure sores, catheterisation techniques and the risks of a deadly condition called autonomic dysreflexia? We were awake yet trapped in an undergraduate’s anxiety nightmare, where you dream you’ve committed to study entirely the wrong course. There had been some terrible mistake. You wanted to do English Literature; you were stuck in theoretical astrophysics. And in this university there was no dropping out, no transferring. To this day, I have lodged in my memory one particular giant image of a bedsore on a buttock which was displayed on the wall for us during those afternoon education sessions.

‘This sore is the size of a plate,’ warned the nurse in charge.

‘It had to be packed every day and the person had to spend two years in bed before they were able to sit up in a chair again. It is what can happen if you do not check your skin and take efforts to relieve pressure points.’

I looked at plates differently after that.

Most definitely beyond imagination were the backstories of my fellow patients: the extraordinary mixture of bizarre and mundane which had brought us together. We were a community bound by the common possession of crushed or severed spinal cords, but the disparate tales of how it came to happen were far, far stranger than fiction. Any woman who has given birth in an NHS hospital will know what it’s like to share a ward with the fantastic, comic mix of rough and ready, posh and precious, and every kind of female in between, whose only common bond is the ability to have a baby. Well, breaking your back is like that but magnified a millionfold. If you tried, you could not have made us up. Academics, labourers, wasters, tradesmen, accountants, failed suicides, business managers, teenagers, drunks, cyclists, stuntmen, farmers, speedway riders, criminals, jockeys, teachers, police officers, motorbikers, dog-walkers, golfers, drug addicts, teachers, pensioners and more congregate in spinal units. We were young, old, decrepit, well-groomed, inarticulate, intellectual, deranged, gay, straight and transgender, condemned to our wheelchairs by road accidents, falls from bikes or horses or walls or beds or cliffs or balconies, stumbles off kerbs, trips over slippers or coffee table or dog leads or manhole covers, crashes on the piste, dives into swimming pools, rugby tackles, violent assaults, attempted murder, war, vascular incidents or complications from tumour operations. Several were victims of slipping on ice. Men outnumbered women by almost ten to one. Every one of us had our own bitter misinterpretation of risk to reflect on. What we had in common is that life, quite simply, chose to leap out and attack us. As one nurse put it: ‘When I first came to work here I was terrified of the chance of spinal injury happening. Then I saw that it can happen to anyone, in any circumstance. It is completely random so I stopped worrying.’

This did not stop us, as individuals, in private moments, being haunted by our ‘what ifs’. What if I’d left the bike at home. Or pulled up the horse. Or not got in the car. But such thoughts were entirely pointless, jousting with the random essence of existence. Meantime, I decided, even if I couldn’t move, there was at least some fleeting entertainment to be had watching and listening to my fellow travellers. It was, I supposed, like being on a cruise ship.

The rehab ward was subdivided into rooms of four or six beds. One of these, opposite the nurses’ station, was a dedicated respiratory section for those poor sods who were on tracheotomies in order to breathe. They remained strangers to most of us, as they never rose from bed to wheelchair, and were too sick and dependent to reach the gym. People with such high-level neck injuries stayed as long as it took to stabilise them and arrange the massive twenty-four/seven care packages they would need at home. Then they were taken away at quiet times: still, distant figures upon stretchers beset by tubes and ventilators.

I remember catching a glimpse through the internal ward glass of one occupant: a morbidly obese man, not old by any means, who lay like a mountain upon what seemed an impossibly small bed, the tubes through the front of his throat, his face turned impassively towards the outside window. He did not live long enough to go home: one morning the staff came and drew all the internal curtains in the wards, shut the doors and hushed our buzzers, because his body was being removed and we were not to see. His accident had probably been caused by a fall – the most common cause of calamity. But oh what variety was contained within that tiny little word ‘fall’: it included everything from failed suicide to a trip over the coffee table in the living room after, or even before, a glass of wine, or sometimes six. All of human life was there in the lurid, eye-popping diversity of falling. There was Del, a part-time brickie and a full-time wild man, who had swallow-dived from the seventh floor on holiday in the Costas, convinced by drugs and alcohol he could fly. Despite his injuries, I think he still thought he could. He also thought he was irresistible to women and was famous for making lecherous comments to staff and female patients. Some weeks later, when I was upright in the gym on a static wooden standing frame, braced upright between foam knee braces and leather straps behind my bottom, I became aware of Del in his wheelchair at my right hip, leering.

‘You look OK standing up. For an old bird,’ he said. ‘I’d have a bit of that.’

‘In your dreams,’ I said as haughtily as I could, trying not to laugh at the pitch-black irony of a pick-up line from one deranged tetraplegic to another marginally less deranged; indeed, at the very suggestion either of us had sexual currency of any kind. How to plumb the depths of bitter-sweet. Later I rationalised that as offers went, given my condition, it was probably the best I was ever going to get.

He cackled and rolled off to pester someone else. I felt as if I had joined some hilariously macabre list of Dickensian characters. Tenement had done much the same thing as Del but on a lesser scale, a chronic alcoholic who had lost his house keys and fallen while trying to climb in the window to his third-floor flat. If his life had been chaotic beforehand, it was hopeless now. His hands jangled like a medieval palsy sufferer’s, and it was nothing to do with his broken spine. The stuff his girlfriend smuggled in for him could only assist. Despite encouragement he never showed up for gym sessions; he preferred to go outside and join the smokers, the small band of paralysed who huddled their chairs near the entrance to the spinal unit. Out there too was Steroid, a scaffolder who told the doctors he had tripped but confided to us in hand therapy, where he was learning to feed himself, that he’d run into a wall in a drug-induced rage and broken his own neck.

‘At least I think I did,’ he said. ‘I was aff ma fucking heid at the time.’

Right outside the front door, just through the underpass, lay the streets of Govan, an inner-city Glasgow ward which persistently featured in all the indices of deprived Britain. Like urban foxes scavenging, the occasional local street dweller or small-scale drug dealer smelt out the needy patients and would drift by in the evenings, offering an anaesthetic of fags, booze, dope, pills, harder stuff. Here was an eager market; and usually with cash stowed in their zips and pockets. But nothing is successfully furtive when you cannot use your hands and slow-motion drug-dealing with cripples in the dusk was worthy of the blackest of comedy scripts. The dealers – though the name makes them sound more glamorous than they were – would hand over their booty and watch as the paraplegics, whose hands worked, fumbled in the pockets of the joggers of the tetraplegics, whose hands didn’t, to get their money out for them. That was the unwritten code with a knackered spine: anyone who had a less severe injury and could do something, helped out anyone who couldn’t. If your hands didn’t work, you found a mate whose hands did, and you locked your wheelchairs together in a macabre mating while they reached over and retrieved what you needed. For the scavengers it was a rare encounter with people far lower down the pecking order than they had ever met before.

Although the authorities alerted the police regularly to drive away the dealers, these transactions were fairly unstoppable. Anyone caught using or in possession of drugs inside the unit was expelled, and some were when I was there; but who was to ban patients from smoking outside the hospital doors? Morally, these were the entitlements of the damned. Down among any dead men – the traitor before the firing squad, the poor sod in the trenches with his torso blown away, the young paraplegic whose penis would never feel again – a cigarette was an emblem of compassion. Who would ever deny the needy whatever tiny pleasure was possible? Certainly not the occupational therapists, who would on the quiet craft ingenious devices to allow tetraplegics to continue to smoke – hand straps to let them grip fag packets, a length of wire with a loop on the end to hold the cigarette, so they could reach it to their mouths. There were no pious bleats about being forbidden to facilitate patients’ smoking, just discreet pragmatism and an absence of judgementalism. The bosses looked the other way. I loved that, even if it was just one more measure of how great a catastrophe had befallen us.

In my ward there were six beds and slowly I began to find out about the people around me. Next to me was Karen, who was the same age as me. She was a fall statistic. An innocuous tumble in her house had mysteriously paralysed her: only when she was X-rayed did she find out that she had undiagnosed arthritic deterioration in her neck which, in a stroke of appalling bad luck, had pierced her spinal column. Her injury was at a roughly similar level to mine, but I was the luckier: she had less movement in her arms than me and her fingers were permanently bent shut. If she envied me, it never showed. She never knew, either, how much I envied her calmness and realism: while I was gung-ho to fight my way back to total fitness through blood, sweat and tears, her ambitions were simply to be able to hold a mug, feed herself, and apply make-up. Guess who was the wiser?

With us in the room were two teenagers, one who had dived into the shallow end of a swimming pool on holiday, the other who had her back broken in a car accident. For months, lying listening to those kids learning their new realities, hearing them sobbing behind the thin curtains, or being taught how to catheterise themselves, or sitting their national school exams with an overwhelmed-looking adjudicator, was a profound lesson in how fortunate I was to have lived a lot of life before this happened. Later I shared a room with another little girl, and felt silent anger flare when Snapdragon, a senior nurse, insisted that her teddy bear was an infection control risk. Normally the bear would have had to go but, announced Snapdragon, glowing with the warmth of her own magnanimity, she’d make an exception as long he was kept wrapped up in a sealed plastic bag. Teddy sat there on the bedside cabinet, asphyxiated, head forced sideways, nose crushed against the plastic, pleading black button eyes, until the child went home.