by Melanie Reid
And where humour was concerned, bureaucracy was the gift that kept on giving.
One night Kuba, who’d had his accident snowboarding, decided he wanted to transfer from wheelchair into bed without assistance.
‘See you,’ threatened Lupin. ‘You’re just making trouble when I’m on duty. Have the physios said you can start this?’
‘Yeh yeh, c’mon.’ He was flirting with her. She was wonderfully flirtable with.
‘Just make sure you don’t fall on the floor.’
‘I’ll be fine.’
‘I’m not worried about you, sunshine. It’s the form-filling that would kill me.’
And it did kill them. One night, carelessly, I slid onto the floor, in slow motion, while being helped into bed. I felt OK, but the nurses flapped, frightened by repercussions. Blame was institutionalised in the system, a game of pass-the-parcel that every employee was forced to play every minute of the day, and they were all terrified of being the one holding the package when the music stopped. After a fall, protocol decreed that a duty doctor from another part of the general hospital must come and examine me, I presume lest I sue. Eventually, well after midnight, an overworked junior doctor, ruled by the tyranny of her bleeper, arrived. She leant over my bed, ticking boxes on the lengthy fall form, poor girl.
‘Does anything feel broken?’
‘Er …’
‘Can you move your leg? Any pain?’
‘Er … no … you see I’m paraly—’
But the bleeper distracted her and she was called away to some other distant emergency. They were a lost, overworked tribe, those junior doctors, inexperienced dogsbodies learning on the job. In the middle of another night, a couple of years later, on a medical ward elsewhere in the hospital, I witnessed a distressed elderly lady who had been admitted to the bed opposite me. She came via A&E. Her husband, terminally ill with cancer, was near the end, and she was his carer. Under the strain, her body had betrayed her: she had collapsed in a meltdown of her own faeces and vomit and a neighbour had called an ambulance. She didn’t want to be there, utterly distraught about leaving her husband behind. The A&E staff had cleaned her up and decided to keep her in for tests; now a junior doctor had been sent to get a blood sample. Please let me go home, she pleaded. I have to go home.
He tried his best to reassure her. We just need to check you out. But he simply could not find a vein, and the longer he took the more nervous he got and the more she suffered – one of the myriad lonely little scenes that hospital creates, night after night. He spent the best part of twenty minutes puncturing first one arm, then the other, to find a vein. I lay in the dark listening to the harrowing soundtrack from behind the curtains, his incompetence, her distress, and I writhed inside with pity and embarrassment for both of them. It shouldn’t be like this. Getting old and ill should be tidier than this. But it isn’t. Learning to be a doctor should be easier than this. But it isn’t. He desperately needed the expertise of those charmless vampire blood collectors. She needed some kind nurse with the time to phone a neighbour or family member and set her mind at rest. But these are the sad deficits and these the messy truths of the small hours; this the reality of ill health none of us wants to know.
The NHS estates department was the funniest. There are no crash teams for resuscitation of buildings, just small communist cells who moved – slowly, comrades, slowly – from one planned job to the next. One Friday night, the spinal unit central heating had packed in. The ward was freezing and the heating ducts were emitting a screeching noise. Everyone was calling for extra blankets. At about 11 p.m., three hours after they were alerted, the NHS in-house maintenance men arrived. There were four of them: wearing boiler suits and slightly superior expressions. They ignored the patients completely. After a long pause, someone got a ladder and one of them climbed into the roof space through a ceiling panel. Like a comedy sketch, the other three stood self-importantly at the foot of the ladder, looking up.
‘Try the back,’ one of them called up.
‘Nah, no’ working.’ Muffled.
‘Switch the other yin aff.’
‘No’ working either.’
The man in the ceiling popped his head back down.
‘It’ll need to wait until Monday.’
They all nodded. ‘Monday.’
And so it did.
Heating worked both ways. In late spring of my stay, there was a sudden warm spell: the temperature inside the unit jumped to thirty-two degrees. Radiators valiantly pumped hundreds of pounds’ worth of kilowatts out of open windows and fire exits. Sickening, stifling heat. Our families brought in fans to allow us to sleep at night. We wilted, fainted, puked. Days passed. I wanted to lead a walk-out, except none of us could walk.
I remember, in exasperation, asking one of the doctors:
‘Why on earth can’t someone do something?’
‘Ah,’ he said, ‘a good question. What you learn in the NHS is that only the man who’s authorised to turn down the heating is allowed to turn it down; and he will only do it when he’s been told to do so by the man who’s authorised to tell him. I suspect they can’t locate that second man.’
He paused, then added reassuringly: ‘It’s only been four days. That’s not bad.’
In the gym of the spinal unit, a relatively modern building, the roof leaked. In our chairs, we negotiated our way around buckets on the floor. It leaked when I arrived; it still leaked a year later. Then there was the spinal unit’s hydrotherapy pool – closed because the showers had been unsuccessfully refurbished by the NHS plumbers and now the drains didn’t work properly, allowing water to build up in the cubicles. One of the more militant auxiliary nurses, I think it was the unlovable Hellebore, the queen of union grievance against the management, had complained to the union about the risk of slipping in the standing water as she showered us after hydrotherapy. As a result health and safety shut the pool down. The patients, for once, made a fuss – Dave, Kindle’s mum, and others. There was a groundswell of grumbling, like angry bees that couldn’t fly. We complained to the person centred collaborative about a real time area of concern, because we loved our swimming, the chance to be free and float, paralysed limbs let loose from hard surfaces. We loved it more than we cared about the staff getting their trainers a bit wet. Very reluctantly, because of our protest, management agreed to buy the nurses wellies. Pool duty became voluntary: only those staff who were prepared to take the risks of injury.
During my time in high dependency, my physio Susan asked to fill in a form with me. It was standard, apparently. Just a depression score. Accordingly, while I lay in bed, and she tried to keep a straight face, we went through several A4 pages of questions. In fact the Hospital Anxiety and Depression Scale (HADS) soared beyond irony to some higher field of parody. Only in the darkest of comedies would you be tasked to approach a person, newly paralysed from the neck down, and ask them such internationally standardised multiple choice questions as:
‘I still enjoy the things I used to enjoy – a) definitely as much, b) not quite so much, c) only a little or d) hardly at all’.
‘I feel as if I am slowed down – a) nearly all the time b) very often, c) sometimes and d) not at all’.
My personal favourite was the fabulous: ‘I get a sort of frightened feeling as if something awful is about to happen – a) very definitely and quite badly, b) yes, but not too badly, c) a little, but it doesn’t worry me and d) not at all’.
Who would have thought health service bureaucrats all over the world had such a fantastic sense of irony? Sadly, there was no question about ‘a sense of impending doom’ on the HADS.
Neuropathic sensation is like owning a body invaded by ghosts and embers and flickers of flame, St Elmo’s fire running rampant. By turns hot, cold, sharp – or worst of all, droning constant pain. During the day, you can to some extent tune out, distract yourself with other things. At night, though, your legs get noisy: the ruined misfiring nerves come out to play. In the beginning, post-ac
cident, my legs were as dead as could be. After a few weeks, though, I became aware of the vaguest sensation, like pins and needles, when the nurses handled them as they washed and dressed me. And pretty soon, lying in the dark, I could feel buzzing and hammering and stuttering inside my frozen limbs. Was it blood vessels? Was it nerves? Strange analogies came to me: when they thumped particularly hard it was like someone trying to restart a lawnmower which had been laid up all winter. Coughing, choking. Or a computer whirring despondently, attempting to reboot itself but failing. I was reminded of a hired minibus I once saw in the Alps, refuelled with petrol instead of diesel, kangarooing a metre at a time up the hill from Bourg St Maurice, belching smoke. These were times when the thumping was so strong that I would raise the head of the bed so I could see if my legs were physically jumping. They were as still as in the grave.
Sitting in my chair one day, six or seven weeks after my accident, I convinced myself that my left thigh, the non-DVT leg, had twitched sideways on command. I stared at it, willing it to move inwards towards the other knee. I was sure there was a flicker. Well, maybe. I told Susan, my physiotherapist, and she gave me her classic Oh-yeah-who-are-you-kidding look, because part of her job was to stop people like me destroying ourselves with false expectations.
‘Show me,’ she said.
I tried. Two grown women bent over, gazing intently at a set of knees.
‘See! It flickered.’
She didn’t say anything. She put my feet up on the bench, took off my trainers and liberated my toes from the dreaded elastic stockings. She flexed the left foot a little up towards the calf.
‘Try and move your toes.’
I tried. I called on all the chasing phantoms inside. And as I watched, willing them to move, the middle and fourth toe went up and down. Susan looked intrigued; I couldn’t believe what I had seen.
‘Do it again,’ she said.
And they moved again. It was the faintest of weak flickers.
‘Try the big toe.’
Astonishingly, on demand, it too jerked slightly upwards.
‘Move it down again.’
But I couldn’t. Nor, when we tried, could I move the toes on the other foot at all. The miracle was over. The left-foot toes were exhausted with the massive effort, but we had witnessed their stirring with our own eyes. It meant, surely, there was some connection. That signals were still getting through. I was too excited to say anything. My mouth had fallen open into a big ‘O’ and my brain was boiling with joy, excitement, amazement. Susan was very quiet. She put my socks and shoes back on and I saw her looking at my body quizzically, coolly, a professional appraising a lump of meat that had come to life when it had been signed off as dead.
By now, gym had finished and I was late, pushing back to the ward as fast as I was able. My nephew Lucas, who lived in France, had just arrived. I caught up with him in the corridor. The instant he turned and our eyes met, I burst into tears, sobbing and laughing simultaneously, a controlled woman very close to being out of control.
‘Lucas,’ I cried. ‘I can wiggle my toes!’
CHAPTER FIVE
Pollyanna Syndrome
‘And I can be glad there isn’t any looking glass here, ’cause where there isn’t any glass I can’t see my freckles.’
Eleanor H. Porter, Pollyanna
Everyone knew what a toe wiggle meant, didn’t they? Even lay people. If you could wiggle your toes, it meant you weren’t really paralysed. You were going to be all right. Wiggling toes were the sign. I had a flashback to a Saturday morning perhaps two years previously, in another city A&E, and my long, lanky son in muddy rugby kit lying there, head and neck fixed between orange pads, rushed from the playing field with a suspected neck injury. Me, my heart pounding so hard it was making me stagger, my face a mask of calm, and him breaking into a cheery greeting: ‘It’s OK, Mum, I can wiggle my toes. Look.’ And I looked and the size 14s, studs and all, sticking long off the end of the bed, wiggled away obediently. He’d pinged his trapezium muscle, that was all. Another more recent memory – in high dependency, the young snowboard instructor in the opposite bed to me, lying in a state of shock, trussed in a body brace. But his toes were poking out from under the blankets towards me, and they were wiggling. He would be all right. Now mine were wiggling. Maybe, if I just waited long enough, the fairytale would end happily.
For everyone with a catastrophic injury there comes a point, as the powerful drugs are slowly withdrawn from your system, when you grasp the enormity of what’s happened. When you say to yourself: OK, this is actually not a dream. This is your new state of being. Face it.
In the very early days after my accident, in the loneliness of a night-time ward, I found myself contemplating my situation with sudden forensic coolness. There were no tears trickling into my ears, no self-pity; I put away the inner child and appraised as an adult. Yes, it appeared that things were bad, very bad. So bad that I couldn’t cope. I was paralysed. It was unbearable. Then, out of nowhere, came the epiphany. With the utmost clarity, I realised that actually, things could be worse. What mattered most of all? Not me. Us. Them. My DIY family, created by me from two marriages and held together by love and determination. Our happy, often dysfunctional little unit, our laughter, our independent hobbies, our loving madness, our group hugs, when we shouted and pogoed to the words of the Sister Sledge song ‘We Are Family’ – three different surnames under one roof, me and my maiden name, my son from my first marriage and my comedian of a second husband. My two adored ones, who I stitched together and kept apart and defended against each other and who sometimes, in my moments of total exasperation with the friction, forced me to cry out that I felt like a half-eaten antelope carcass being fought over by an old lion at one end and his rival, the young lion, at the other.
I would never forgive myself for the trauma I had inflicted on them, but – and on the back of my eyelids I sketched out options like a management consultant – now was the time to consider just how bad it could have been. What if I had a) been killed; b) suffered serious brain damage, with all the monstrous loss of personality that would entail, or b) broken my neck higher up, rendering myself dependent on a respirator to breathe for me, and potentially bed-bound? I envisaged the boys coping with the three possibilities. If a) … well, Doug was only twenty, losing his mother would be just too tough, his whole life could be thrown off course, his degree unfinished, his future made so much more difficult without me around as backstop. Plus, he might have become effectively homeless, as his incorrigible stepfather, at sixty-four, would initially have fallen apart without me but would have soon found – men do, men do – some available sexy woman, especially one who cooked good mince, and would then have wanted the young lion out of the house. If options b) or c), I had a painful vision of the two of them sacrificing their lives either to care for me at home or, night after night, traipsing dutifully to visit me in a residential home, to sit by my bedside making falsely bright conversation; or to face the certainty of perpetual guilt if they didn’t come. No, no, no. With absolute finality, I knew that would destroy their lives.
While on the other hand, if they had someone who was in a wheelchair but could still feed herself, and who was still herself, and who regained as much movement and independence as she could and pretended to be as cheerful as normal … well, that was a much better possibility, wasn’t it? Thus, cornered in the rattiest of corners, in the place where living creatures turn on each other or failing that upon themselves, eating their own limbs, I rationalised tough choices. Decided that I was, in the grand scheme of things, lucky.
I remember smiling into the dark, and experiencing a great sense of a burden lifting. It sounds frightfully stiff-upper-lipped and very British. Sort of, ‘Gosh, darling, just noticed my right leg’s been shot orf, but never mind, not to worry, still got the other one, haven’t I?’ But I wasn’t really that type. Nor was I some graceful martyr. All I sought, at that moment of inner crisis, was a mental lifebelt, a way to survive.
And I’d found a good one.
There was another striking moment of insight when I saw families coming to visit their sons and brothers on the ward. Those young males, mere boys, coltish and silly, raw and fermenting with risk, desperate for kicks and speed and prowess, who’d got in cars driven by drunks, who’d ridden motorbikes or mountain bikes too fast, skied too hard, jumped walls with sheer drops on the other side, tried pills they’d never tried before and dived into shallow swimming pools. And the tragedies were carved on their mothers’ faces: gaunt, distracted expressions, ravaged by the knowledge that nothing at all within the doctors’ power could repair their beloved, perfect sons. Nothing. Nothing that their love could do either, to protect or mend or save or restore normal life. That unfathomable, bottomless love of mother for son rendered impotent. You would kill to save your son; but too late. Now no sacrifice could spare him his own living death. He still lived, but you mourned the loss of all you had projected onto him in your dreams – power, strength, success, happiness, lovers, children. And I would lie and watch them through the internal glass as they walked down the corridor, those broken women with crumpled faces, and imagine I was them. Understanding their visceral grief.
My four warriors: from left to right, Dougie, Dave, my brother Andrew and nephew Lucas.
There was one woman; I remember her hair achingly pretty down her back, blonde against a perfect shade of pink top, her face a mask of anger and despair. She was young. Her teenage son, a promising athlete, had broken his neck in a car accident; one of those to have taken a lift from the wrong person on the wrong day. And it was her face that broke me and also mended me, for she made me realise, yet again, things could have been worse. Out of her tragedy, I took perspective. It might have been my son lying here, his neck broken, and I might be her, stumbling in, heart in fragments, trying to smile and utter meaningless comforting words about a body ruined before it had grown. No, it was a million times preferable that it was me paralysed, after a life lived, fifty-two good years, while he was still healthy with his life in front of him. And while I wasn’t remotely superstitious, or fanciful, I found myself hoping that in a way I had taken the hit for him. If there had to be a hit. If bad luck had to smite the family, if the spinning randomness of physics, of trillions of atoms interacting, meant that dreadful collisions had to happen at some point, then maybe it had happened to me and I’d lengthened the odds of it happening to the others.