by Melanie Reid
What made it especially difficult was that my injuries had not merely taken away my control of my body, they’d made my body positively hostile towards me. My appendage went out of its way to be as inconvenient and obstructive as possible. This was not just an absence of controlled movement; it was the arrival of a horrible side-effect in its place: spasticity. There’s a common misconception about paralysis. People think your legs go soft and floppy and cooperative, and indeed many complete injuries do that – hence the paraplegic wheelchair racers, who fold their legs into an impossibly small space under them in their racing machines, diddy little limbs they can package temporarily away. But a lot of incomplete injuries don’t. I was the opposite of soft and floppy. Soft and floppy would have been wonderful. Instead, I had rigid, spasming limbs which refused to cooperate. The muscles in my torso and legs, reacting to the incoherent messages coming down my damaged spine, would either make me jerk and jack-knife, chest to knees, or go into a violent plantor flexor spasm, my legs straight out like telegraph poles, knees grinding together, toes straining down, back arching as if – as in the movie Alien – the monster was about to burst from my abdomen. I reminded myself of an old horse which has been shot in the head and then goes down, brain dead but its limbs still jerking. This uncontrollable power was called ‘tone’, used in a technical sense, and I took large doses of a drug called baclofen to subdue it. The body, in an undamaged state, works in a kind of antagonistic harmony – muscles work in pairs, opposing pulleys that straighten and bend each other. With incomplete paralysis, one set of pulleys gets disconnected so the opposing set becomes dominant, and the limbs bend only one way. The plantor flexor spasm, the ballerina with rabies pose, should be countermanded by dorsiflexion, when your tendons and muscles pull up your toes – but dorsiflexion is often the first casualty of neurological injury. In your hands, the classic symptom of spasticity is the fingers clenched into a fist, because the extensor tendons, the ones responsible for straightening, which run from the forearm bones over the wrist and down the top of the fingers, are incapacitated. Unchecked, therefore, the flexor tendons lock your fingertips into your palm.
The baclofen could only do so much to deaden the misfiring nerves. On big muscle groups, doctors have found that a site-specific injection of botulinum toxin, Botox, can help make limbs more malleable. Typically, with paralysis, the abductor muscle on the outside of the thigh, which pulls your legs apart, gets knocked out, which meant that the adductor muscle on the inside, responsible for closing your legs, goes haywire. (Damage to the adductor is what’s called a groin strain.) My adductors were so overridingly powerful, so out of balance, that my knees locked tight together and my right leg took on an unwelcome life of its own, scissoring across the left when I was upright. In the out-patients’ clinic when Dr Purcell injected my right adductor, it was as hard and tense as stone and the needle gave a horrid groan as it went in. Once or twice she gave me Botox injections in my wrists and forearm to try and relieve the jack-knifing of my knuckles. My fingers had progressed from weak and straight to strong and clenched. They were those of a puppet with over-tightened strings. The small dose of Botox would poison the nerve temporarily. We took grim amusement from the fact that beauty-obsessed people with normal bodies had this done to stop their frowns; we had it done so that our hands might be remotely functional. Ill health in these instances could feel like inhabiting a Presbyterian sermon on the theme of the fortunate and flippant who never know how lucky they are. Frankly, you’d give anything to rejoin the world of the flippant. The moral high ground brought sparse compensation.
The concept of struggling with lost identity is a relatively recent one. Since the 1950s medicine has evolved from the point where it regarded the patient merely as a body in possession of a problem – like Averil – to an interest in the patient’s emotional experience. One of the turning points was Mike Bury’s description of chronic illness as biographical disruption in the early 1980s. He suggested that falling ill shatters our self-image: it forces us to recognise pain and suffering, normally only seen as a distant possibility or as the plight of others, and it shifts our expectations of a normal future ‘to one fundamentally abnormal and inwardly damaging’. Chronic conditions disrupted everything – structures of meaning, relationships, material and practical affairs.
Kathy Charmaz’s work, equally pivotal in the early 1980s, developed the concept of loss of self to describe the experience of ‘former self-images crumbling away without a simultaneous development of equally valued new ones’. Oh boy, I understood that. Various aspects of chronic illness amplified one another, a loss of self in one area often spiralling into a loss within another, with devastating consequences. The prime impact of chronic illness was in a physical day-to-day context – eating, washing and toileting – ‘because above all else coping with chronic illness involves coping with bodies’. Oh yes, that damn appendage. My paralysed body, big, hostile and uncooperative, was impossible to circumnavigate. Cognitive-me couldn’t dodge around or escape from rest-of-me, because rest-of-me – in Charmaz’s wonderful phrase – ‘imposed fleshy limits’ on any identity reconstruction. Hence the cause and effect I was becoming familiar with. The stigma of my situation was self-fulfilling: it caused low esteem, which made me anti-social, which removed opportunities for self-validation and made me feel more stigmatised. Psychologically, I was like Pip chasing her tail. Only it didn’t make me happy.
One of my biggest hurdles was being so tall. Always it kept coming back to that. It’s actually quite hard to describe to people of normal height what it’s like to have grown up at the very outer percentiles, and then to lose it abruptly. Both my mother and father were very tall for their generation, five feet nine and six feet three respectively. My big brother was six feet five, my sister five feet nine. We were regarded as a family of giants and secretly we all rather liked that. I ended up just over six feet, exceptional at the time for a girl, though much less so now. At school I was routinely taller than everyone except the lankiest of the boys. Growing up, it brought its burdens, especially with adolescence and the shortage of tall boys in sixth form. I was terribly self-conscious of my height and developed futile strategies to try and hide it, slouching, and practising the art of dropping one hip. There were no shops for tall girls in the 1970s and if I wanted fashionable clothes I had to make them. For jeans, I had to shop in the men’s section.
I came from a family of giants. Milan 1961: I was four years old and three feet six inches.
Sport was easy though, and as I grew up and became more confident, height slowly became my friend. A reason, in the end, to develop a secret kernel of arrogance. When you’re tall, you find you can enjoy live music from the back of a crowd, scan busy rooms to avoid bores, never lose a child in a supermarket, spot when people need their roots touched up, paint ceilings without using a step ladder, walk home at night unintimidated. Above all, being tall is your identity. You take totally for granted the degree of effortlessness and authority it confers. The advantages are huge. Generally, you don’t have to try so hard. You can, literally, rise above the majority, stand above conversations which are boring or noisy. Your perspective is a superior one, acknowledged in a cultural way. Tall people are more noticed, successful, respected and command greater natural authority. Men, in particular, are perceived as being more attractive. Tall women are described as striking. Tall politicians win elections and presidencies. It is as if, in primitive memory, we seek a leader who can see further into the distance for danger and smite down the enemy from a greater height. He or she who holds the high ground wins the battle. On a practical front, tall people never have to struggle to reach anything. Life is generally made easier by a few extra inches in your arms and legs. As a child, trees are lower to climb into and fences to clamber over. With long limbs, basketballs are simpler to net, hockey balls more powerfully hammered, hurdles less of an obstacle on the running track. You can mount the tallest horses and survey the world from ten feet high. From the
saddle, I was accustomed to peer benignly into gardens and bedrooms, could greet people airily from above. You could never be unaware of that height difference, the atavistic essence of horseback, and fail to understand the dangerous haughtiness of peering over tall hedges and down at pedestrians, as lords and kings once looked down at serfs and foot soldiers, silently demanding obeisance beneath the soles of their boots and their horses’ flanks. Yes, being tall was a good feeling.
Even better, being a tall woman meant being a bit like a man. There were huge benefits. As a schoolgirl I discovered the feminist delight of antagonising a particular breed of short, thin-skinned men – everyone will know one – who resented you for the extra inches you possessed instead of them. I remember an economics teacher who accused me of dumb insolence simply for looking down at him, and I cherish new generations of women, unabashed in six-inch heels, towering happily above men. I trust these girls still rework the best tall woman put-down of all time – to be deployed when a vertically challenged chap is cheeky enough to suggest he would, well, enjoy a shag: ‘Well if you do, and I find out, I will be very angry.’
But gosh, all this meant height was a hard bereavement. From being defined, created and sustained by it for fifty-two years, paralysis had robbed me of most of my personality. I felt emptied of sound, character and movement. My overview, my long limbs, my physical dynamism, my presence – gone. All the subtleties of body language gone too. How do you express who you are when you can’t move? Suddenly, you are noticeable in a crowd not for your height or face or clothes, but because you’re so small and because you’re in a wheelchair. You go from door-lintel height to waist height; your world shrivels exponentially. Not only do you grieve for the abstract sense of being up there, spinning to take in the view, filling your senses with freedom, but you suffer a most unbelievable personal disempowerment. The natural quiet authority which comes from being upright vanishes. You cannot project your wishes without sounding querulous. Shrill. You cannot get cross, or angry, or have the last word, or turn on your heel and stalk away – for you are slow, small and weak and intrinsically vulnerable. Passivity and submission go with being waist-high. You’re down there examining the fake tan on women’s legs, the scuffed backs of people’s shoes. You’re fart height. Crotch height. Muffin-top height. Shiny suit-bottom height.
Without my body, I found it very hard to rejoin a world structured on movement and physical reciprocity. It felt like nobody heard me any more, or respected my wishes. Dave, unconsciously, became much more dominant. Unconsciously, his grammar changed. He stopped using the pronoun ‘we’ and started to say ‘I’. ‘Our’ became ‘my’. His house, his plans, his requests, his barn, his furniture, his tractor. (Pronouns are powerful things: even worse was the deployment of ‘it’ when someone wants to belittle someone or something. Men and women in unhappy marriages deploy it to describe their spouse. I had always hated it when horse or dog trainers, faced with a defiant animal, would suddenly drop the ‘he’ or ‘she’ and start using ‘it’.) For Dave and I, the balance in our relationship subtly shifted. He was nearly four inches shorter than I had been, a happy joke which we never equated with power but weirdly, since my giant-toppling accident, since I had become the smallest and most helpless in the family, authority had transferred away from me. Down the plughole drained confidence, personality, power, decisiveness. And that private thrill of physical arrogance.
When unfamiliar community therapists came to help me, and I hoisted myself upright, teetering above them, there was always that moment when they exclaimed: ‘God you are tall, Mel.’ Yeah, I was, wasn’t I? The emptiest boast of all. Shame I lost that advantage. Shame that now, when I do stand for a few brief minutes, it feels like I’m in a cherry picker. The perspective had changed.
What happened to me was a premature assault on self, decades before I could have anticipated it – perhaps something akin to how it must feel to be diagnosed with cancer in your forties. I was catapulted into old age and infirmity, a transgression of natural rules. My healthy body, like everyone else’s healthy body, had been what’s called an ‘absent presence’, only noticed when dysfunction or illness set in. But good health, in the twenty-first century, was more than absence of illness; it was sport and leisure and hedonism, adventure holidays, charity challenges, Ironman competitions, spin classes and boot camp and Pilates. Health wasn’t just my livelihood, it was my social network. And then of course, with that premature assault of chronic health, I had to learn to lower my expectations of the ability of modern medicine to come up with solutions. Our Western culture, focused on beauty and pleasure and the myth of a perfect life, makes it hard for the healthy to accept the reality of illness and the existence of death. People are threatened by the permanence of chronic illness and would like to think there’s a cure for everything. They reject scientific dead ends.
Perhaps it felt like this in the early days of cancer treatment, when everyone presumed that it was only a matter of time before Big Pharma came up with the magic bullet. But breakthroughs came and went over the decades; no one cure ever appeared. Instead, it has taken the best part of forty years for the world to realise that, for cancer, it probably never will. That instead of off-the-shelf pills to nuke lungs, bowels or breast, there has emerged a totally different and far more complex perspective on the different diseases: the long-term, laborious task of genetic analysis and the customising of various drugs to target an individual’s unique illness. Scientists can improve and prolong life, sometimes hugely successfully, but they still have no fairytale ending.
Because humans need fairytales, however, the same dream of the magic bullet afflicts spinal research. Within a few months of getting home and starting to watch TV again, I found the stories of spinal breakthroughs began arriving. Patients with electrical implants in their spines who could now stand. Paralysed dachshunds that could walk again. Rats with severed spines scampering along treadmills on their hind legs – then, later, a memorable BBC Panorama on the operation by the late Professor Geoff Raisman in Poland to regrow a man’s severed spine by implanting olfactory cells. As a journalist, I knew what a divisive word ‘breakthrough’ was: editors demanded it, otherwise it wasn’t a story; scientists and doctors hated it, because they knew it probably wasn’t; and sufferers, the poor sufferers, of which I was now one, were tortured by it. Asked to comment on television news on the man with the implant empowered to stand, I tried to explain the vast gulf between someone whose lower body could now feebly stir, when surrounded by wires and helpers, and the normal, fluid, unconscious, pain-free mobility enjoyed by the able-bodied. Please don’t mistake this for a recovery or a cure, I said. For thousands of spinal-injured people with some lower body movement, electrical implants or not, there would never again be ease of movement, no dancing round the kitchen, or release from incontinence, or skipping upstairs, let alone running marathons. The daily teeth-grinding discomfort of living with paralysis was not going to disappear any time soon. We have many more years to sit in the waiting room.
I remember the evening in the spinal unit when a magician came to entertain us. Come the hour, like a three-line whip for a critical parliamentary vote, all patients who were not in bed were herded to the step-down unit, a wing of the hospital where we were trained for freedom. Families had been invited too – there were little children there, sitting on their fathers’ paralysed knees. The magician was a showman, cocky, knowing, full of banter. And we sat mute in our wheelchairs in ragged rows, the broken and dazed, the drugged and the angry, and watched him pull cards out of his sleeve, and lines of flags out of his mouth, and rip up five-pound notes only to have them reappear in the possession of someone in the second row.
‘Now I’ll really show you some magic,’ he boasted, and did the rabbit in the hat trick.
And I saw myself, and I saw the people around me who needed real magic and miracles more than that silly prat would ever know, and I wanted to laugh and cry at the same time.
The problem was,
able-bodied people believed in the illusion of the breakthrough, the rabbit in the hat. The healthy saw what they wanted to see. They wanted to know that doctors could now cure paralysis, so they wouldn’t have to feel sorry for us any more, or worry about themselves in the future – and if that bloke they saw on telly could stand, well, he’d soon be walking, wouldn’t he? And if he could walk, well then, that must be a cure. Job done. It was fascinating to see how paralysed-person-walks held the trump card with the public, just as it did with the newly paralysed like me. There were more horrible side-effects than an inability to walk but healthy people weren’t interested in them. For a while at the beginning I wasn’t either. Certainly, walking was totemic and dramatic, the sexy, circus-act stuff. Remember those bold people, like the event riders and my husband, who refused to sit in a wheelchair and properly experience its limitations? Call them cowards if you want, but acknowledge their honesty, their need to remain standing and dominant. All this explained much about why the newly injured channel their grief into trying to regain their limbs.
What then of the other side-effects, the all-too grotty and the hidden, the taboo stuff beyond our control to address? Pain, for instance. By chance in the spinal unit I met the daughter of one of my fellow patients, a senior scientist in the pharmaceutical industry. Before her father’s accident, she’d had no idea of the impact of neuropathic pain and had been shocked at how little research, and how few drugs, existed to tackle it. To quell the horrid, ever constant jangle in your legs you could either take gabapentin, a powerful drug designed for epilepsy seizures, which sedated many people to semi-vegetable status; or my bête noire tramadol, the opioid so mind-twisting that the comedian Frankie Boyle built a career on it. The payoff for avoiding these drugs and keeping a clear head was that discomfort became your lifelong companion. I was fairly puritanical. I whittled out medicines like oxybutynin (to stop bladder spasm) that were doing nothing for me, and reduced the dose of those that remained essential. This meant reliance on ibuprofen and other common analgesics like aspirin. If they wrecked my stomach in the long run, well, so be it. I could at least think straight. But lots of people preferred a bit of oblivion. They took every powerful drug they could get. Both gabapentin and tramadol, I later noted wryly, were much sought after as illegal street drugs and there were calls for an end to prescribing them. I’m not surprised. I saw what they did to people’s heads.