by Melanie Reid
Without temperature regulation, you feel permanently cold – that is, until you feel unbelievably hot. And without any controls over blood-pressure regulation, especially if you are as tall as I am, whenever you are raised into a sitting or standing position, your blood rushes into your feet and you pass out. There were times when my bradycardia, low heartbeat, was down to thirty-four beats per minute, enough to call a crash team for a normal person. In the spinal unit such things were unremarked. But fainting was a new discovery for me, a horrid one. It awakened memories of school, where it was always the pretty, delicate girls who used to faint in assembly. As predictable as Victorian heroines, they would fold to the floor with a little sigh during prayers, to general commotion, and lots of attention from the boys, while us roughtie toughtie hockey types in the back row would mutter cynically, ‘That’s Pauline off games’ or ‘I suppose it’s her periods again.’ Of sympathy from us, there was none.
Only now, decades later, I can understand just what those poor girls went through, because I’d turned into the same wan, pathetic creature, turning sheet white and swooning at the slightest provocation. Fainting felt as if death was ripping you out of life and you could feel it happening but could do absolutely nothing about it. There was a dreadful inevitability after I was hoisted out of bed and into a sitting position – visual disturbance, flashing lights, waves of nausea – and then rapidly everything went black with dark green blotches. Voices dimmed and retreated into the distance; I grew hot and claustrophobic; and if no one could tip my wheelchair back in time, and elevate my legs in front of me, I would start moaning involuntarily, flail my arms in distress a bit, and then vomit, mournfully and quite helplessly, into my surgical collar. This was possibly the nastiest side-effect of all, for as the faint normally happened in the morning after my branflakes, the smell of sour milk haunted me thereafter, as if the collar wasn’t enough of an instrument of torture already. Fainting was debilitating and I was so prone to it that in those initial weeks any attempt to get me into a shower chair was ruled out. When they did try, I was a time-consuming failure, fainting and vomiting and fit only to be hoisted back into bed to recover. Shower chairs are minimalist plastic-seated wheelchairs, designed by the devil in a bad mood. I came to hate them with a terrible intensity, for the effort and suffering they brought me. And I still do.
Always, the pressure to keep moving people through the system was acute and from somewhere on the ward Euphorbia found an electric shower chair which reclined, tipping you back and pre-empting faints, but still facilitating a proper wash. It was a large, elaborate throne which I viewed warily, dreading the trauma. Use it I must though, because my body had to be trained to adjust to its new state. ‘Your blood pressure will stabilise after a while,’ they kept telling me, but it didn’t. I still came close to fainting every morning, and so eventually I was prescribed ephedrine, a fast-acting stimulant, a cousin of amphetamine, which raised my heart rate. Fifteen minutes before my shower, I swallowed the little pill. It worked. The fainting receded. I was to take the drug many times over the next few months – indeed, years later, I still rely on it to stop me fainting after I’ve eaten and the blood rushes from my head to my intestines and I mewl and swoon. Very useful to avoid embarrassment in restaurants, it is. In fact I’m eternally grateful to ephedrine because it was in the shower, by chance, when I tipped forward in the chair to let the nurse wash my back, that I studied my right foot. It was lurid purple and white, engorged with fluid, the nails sunk into the flesh. The feet of paralysed people are frequently swollen, but this looked ghastly.
My nurse that day was Gillian, one of the seniors and my named nurse on the rehabilitation ward. She was one who really would qualify as an Angel of Mons, perceptive, giving, hard-working, modest to the point of shyness. Just by being on duty, she made me feel happy and safe. She was a great hugger too. Many a time I wept on her shoulder and perhaps she was too self-effacing to realise it, but she was largely responsible for holding me together mentally. She was also a brilliant professional.
‘Yuck, look how disgusting that foot is,’ I said, not sensing anything was wrong, more to make mordant conversation than anything else.
She looked hard, then looked again. ‘Oh,’ she said. ‘Not good.’
As soon as she could, she had me back in bed and measured my legs with a tape, which showed that my right ankle, calf and thigh were up to five centimetres thicker than my left. Events moved swiftly. Doctors came, felt the heat and thickness of the leg, gave me an anti-clotting injection, told me to stay in bed and then sent me for a Doppler ultrasound scan, which measures blood flow. The technician started in my groin, laying a snail’s trail of gel all the way down to my knee. Almost as soon as she had started, right at the top of my inside thigh, she said: ‘I can stop already,’ she said. ‘There is indeed a clot there.’
I managed not to burst into tears, but it was hard. A deep-vein thrombosis was a dangerous thing, with the risk that it could move to the lungs and cause a stroke or a heart attack. The doctors told me to avoid lower body exercise for a week until the warfarin was thoroughly into my system; they were fairly sang-froid. Used to it. For me, it weakened my strategy of denial. There could be no kidology. Every night I pushed down my bedclothes and watched as the nurse injected the anticoagulant into my tummy, wishing that I could feel the big needle going in. My right leg was hot and as thick as a tree trunk and I was back wearing thigh-length white anti-embolism stockings. Now, on top of everything else, I had a timebomb inside me. It was a complication I really didn’t deserve, I thought bitterly – but that was an illogical thought, so I banished it. Between the bouts of crying, I was getting tougher with myself.
I cried even harder when one consultant – auxiliaries had no monopoly on insensitivity – told me one leg would probably always be thicker than the other. Later, a comment like that wouldn’t matter a damn. Then, it was devastating.
Along with the ephedrine must be added the warfarin, which came in different-coloured tablets depending on what dose you were getting, like menacing Smarties. The dose depended on how thin your blood was, and that depended on the vampires taking it from your veins several times a week to be measured. The vampires were the team of specialist blood-takers who toured the hospital. Maybe it was the nature of the job but they were as grim-faced as the Gullet Controllers, no small talk or smiles: just Formula One pitstop stuff again – elastic band to squeeze the vein, needle in, vials filled, wipe of spirit, tiny plaster, and away.
Four times a day in hospital, for my entire stay, I was swallowing large quantities of pills from little plastic tubs handed to me by a nurse. Years later, when I cleared out the drugs I had come home with, I was astounded by all the things I no longer needed to take. There was one, though, which I could never discard – nifedipine for autonomic dysreflexia. The nifedipine came in ten-milligram capsules. ‘Bite into ONE and retain the liquid in the mouth if required for dysreflexia max 4 caps in an hour,’ said the instructions coolly. ‘Do not eat grapefruit or drink grapefruit juice.’ Those pills were dated Feb 2011 and had a sinister backstory. If you were a tetraplegic you were supposed to take them everywhere you went and carry an emergency information card with you, because without them you might die.
Autonomic dysreflexia. The name took on such an apocalyptic resonance it became a source of dark humour. At our weekly education session it was drummed into us how susceptible tetraplegics were to autonomic dysreflexia and how alert we must be. Basically, when you’re paralysed in any way, you can’t feel if you’ve fractured a leg, blocked your bladder or got an ingrowing toenail, which is bad enough for paraplegics, but if your injury is at cervical level things are far worse, because your autonomic nervous system can massively overreact to the pain stimuli. Your body goes dysreflexic – which translates as haywire. This means sky-high blood pressure, a pounding headache and flushed skin from the level of your neck break up – if untreated, strokes, heart attacks and death are likely to follow. Nifedipine was
the antidote – a fast-acting blood-pressure-lowering drug; if smitten, we were to take one and head straight for the nearest A&E. Do not tarry. Do not pass Go, do not collect £200. You are a medical emergency. Around that time, I went on my first outing from the spinal unit unaccompanied by any medical staff. My friends were entrusted with nifedipine to administer in such circumstances – with those same instructions, as in the corniest spy movies, that I must first bite into the capsule and swallow the contents.
One of the young, super-efficient staff nurses, Begonia, gave a quick briefing on autonomic dysreflexia as our taxi waited. It put the fear of God into my friend Susan.
‘She’ll flush and get a pounding headache.’
‘But how can we tell?’ Susan asked. ‘How will we recognise how bad a headache it might be?’
‘They say,’ said Begonia grimly, ‘it’s like a sense of impending doom. You can’t mistake it.’
Every now and again, going round the art gallery, I caught Susan and Alex peering anxiously at me, checking.
‘No sign of impending doom?’ they asked. ‘Are you absolutely sure?’
I have never yet, touch wood, had an attack, but when I crowed about this once to a spinal unit nurse, she smacked me down, telling me it can start at any time. I confess I have stopped carrying the drug, though. The one time I did have to rush to A&E with a blocked catheter, some years later, I was not suffering from dysreflexia, but was terrified it might occur. I told the registrar this, as I sought to explain the urgency of my visit. She looked blank; she had never heard of it. Some of my contemporaries from the unit were a lot less lucky than me. For one poor man, dysreflexia meant an almost nightly emergency after he went home, requiring numerous trips to A&E. While still in hospital some of the bad boys learnt to self-induce it in order to cause chaos. Joker, bored by lights out, worked out how to kink the tube of his catheter between his frozen fists, and would deliberately stop his urine draining to induce the symptoms. Then he’d press his buzzer and shriek, ‘Nurse! Help! I’m dysreflexic!’ knowing it would mean lots of fuss and attention and form-filling. The nurses cottoned on to him, but there was little they could do. The condition, interestingly, is also said to be utilised by Paralympic athletes. They’ve discovered that if they make themselves marginally dysreflexic before they compete, it can improve their performance. Does that constitute cheating? It is a hard one to call.
My bed had been moved into the bay nearest the window, and I spent a lot of time gazing at the shabby shrubs, the fence, and the ceaseless motion of the dual carriageway behind it. One lunchtime I watched an urban fox picking its way along the fence line. It wasn’t like the country foxes at home, big, strong and healthy: this was a tiny, mangy-looking vixen limping on three legs; its fourth, a hind, suspended from the ground, looked distorted, grey and bloodily matted. Even from a distance, the wound looked gangrenous. My immediate impulse was that of a country person, and unambiguous – I wanted someone to shoot it to save it from a slow, lingering death. Then, as if someone had stopped time, the vixen paused and lifted her head to stare at me. We gazed at one other through the glass, about ten feet apart, for several long seconds. She was unafraid, coolly appraising. And it occurred to me that she was looking at a creature just as injured and doomed as she was, and just as incapable of fending for itself or having a future. Maybe, I wondered wryly, she’s thinking the very same thing as me: put that pathetic paralysed creature out of its misery. And which of us has the greater moral heft, I wondered. I watched her limp away.
My physical plight, I was learning, was the equivalent of being sent to university to do a degree in humility. I don’t think I had been particularly arrogant before, and I had always tried very hard not to be snobbish, but I was certainly guilty of complacency. Now, with fresh eyes, in a situation from which no amount of qualifications, salary and good taste would ever be able to extract me, I was learning to reassess everything. Passing judgement of any kind was suddenly a dangerous thing to do. The spinal unit was linked to the rest of the hospital by a corridor, and at the end of it, the main entrance for various medical departments, there was in those days a coffee bar. I would escape there sometimes, after gym, pushing myself very slowly and determinedly, and would sit gazing out of the window at the world. Outside, patients would go to smoke, and one day I watched a living cadaver of a man, in a thin dressing gown and bare legs, with a feeding tube dangling from his cheek and bumping on his chest like a hangman’s noose. He was grey in colour and looked about ninety years old, though he was probably about my age. A cannula for intravenous fluids projected from the back of the hand with which he raised his cigarette to his mouth. He was joined by a younger woman, also in nightclothes, who had a tracheotomy on her throat but was also smoking. Apparently, if the mechanism of the tracheotomy is uncuffed, it allows some smoke to reach the lungs. Such was the power of nicotine. The sense these people were so evidently dying from their addiction made them uncomfortable viewing.
But who was I to judge? The moral question of how far a public health service should go to treat addicted or self-destructive people is a gnarly one. But it is funny how the middle classes are the ones that agonise over this the most, and see no equivalence in their own behaviours. Poor people who smoke – bad. Rich people who ski off a mountain – unlucky. I was aware my own addiction to a risky, expensive sport was now costing the NHS thousands of pounds a month, if not a week. I figured I wasn’t in a position to criticise any dangerous lifestyle choices. To be human is to possess weaknesses.
By then, in terms of humility studies, I was getting considerably wiser. Lunch in the spinal unit was at a rigorously enforced twelve noon – they had a system of protected mealtimes – and we, the patients, made our way, snail-like, towards the canteen from the gym. When my arms got tired wheeling my chair across the carpet in reception, I would stop and scan the noticeboard until the muscles stopped burning and I could continue.
On the board there was an action plan. One of the hospital’s goals, it stated, was: ‘We aim for respect and dignity be 100% positive (sic)’. Underneath, in the space for ‘Actions’, it said: ‘As a result of your feedback we are working with the person centred collaborative in identifying and addressing real time areas of concern.’ It made me smile every time I saw it. Because the average member of the public in this neck of the woods, your tough, pungent Glaswegian, would have one, absolutely correct, response.
‘Whit the fuck does that mean?’
Whit the fuck did it mean? Translated, I think, it meant that some people had complained about the way they or their families had been treated by staff – that ‘person centred collaborative’, a euphemism so majestic that if you had spent a week trying, you couldn’t have come up with it. ‘Real time areas of concern’ meant people’s moans. At some point a nurse or a doctor or administrator had been perceived to be inattentive. At some point a patient had been left wanting. Complaints had been submitted, arrows fired, fury vented – where there is catastrophe, there is always anger – and in response the NHS had mounted an impenetrable fire blanket of opaque words.
It was to become an endless source of amusement, watching a feisty Glaswegian workforce function within this maze of inane, pompous directives, protocols and management-speak, about everything from hand-washing to career development. Language-induced paralysis. Oh for fuck’s sake! Just do it! Daily, the NHS survives because staff at the sharp end thwart the unwieldiness and incompetence centrally imposed upon them. At its most darkly comic, hospital life is a daily battle by good people against the system; and our health service is, when you are unlucky enough to observe it long-term, as close to a benign communist state as it is possible to get in Britain, a flawed monolith, a magnificent, dysfunctional, revered, anachronistic, socially binding but bankrupt, life-saving institution.
Within the structure of what is one of the five biggest employers in the world, there is a job for everyone. Into the whole spectrum of skill, education and ability fits all of human life, f
rom porters and car park attendants to cleaners to nurses, clerks, researchers, administrators, therapists and surgeons. The ‘person centred collaborative’ is actually the cast list of a perpetual soap opera: a vivid, ever-renewing list of heroes, villains, victims and all the ordinary characters in between. Here the professional, the idle, the dedicated, the lovely and the utterly unremarkable toil shoulder to shoulder. There are staff who skive effortlessly; and there are grafters who do the work of three or four people. Little is done either to punish or reward anyone. Because that’s not the way the system works, comrades. It’s easy to mock. But what I loved about the communist ethos was that the NHS could fit you in, however lowly you were, and give you a chance. Some of the porters I met were rough, scarred, inarticulate men who would scare you if you met them on a dark night. But it was just great when you approached a reception desk and behind it sat a similar tough-guy with full-sleeve tattoos who confounded all expectations and turned out to be the sweetest, most helpful person you’d meet all day.
I came to revere the quiet, conscientious members of staff, those who would do their work twice over and slip away at the end of their poorly paid shifts. The porters who warned you there was a bump coming, the auxiliaries who made a special journey to fetch chilled water for you. The nurses with their omni-job, saving lives, clearing up body fluids, juggling bureaucratic targets, counselling the bereaved, fixing radiators, TVs, window catches and gluing legs on reading glasses. (And we, the public, expected them to be charming, compassionate and smiley as well, at all times.)
Swiftly, I learnt to find humour in everything and avoid anyone, patient or staff member, who was a professional moaner. Moaning, especially about hospital food, was a black, energy-sapping hole. The canteen staff were gems, often the funniest and sweetest people of all – ‘Brekkie darlings!’ – and the food, for the most part, was edible. And if it was gruesome, then that was also a bit of a laugh. I took the view that I had not gone into hospital to eat gourmet meals. It was fuel: get on with it.