The World I Fell Out Of

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 giant 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.

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 (#ulink_09e5aa44-61f8-5e11-81c2-697cb1e3763f)

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.