by Melanie Reid
I swung round to look at Susan for guidance. What should I be feeling? What had I achieved? Why did she look so pleased? Where were my usual tears? What on earth was wrong with me?
She peered at me and shook her head in exasperation: ‘I really hate that – when the physio gets more excited than the patient,’ she said.
But was it really a Thursday miracle or a lesson in how hard, ultimately impossible, it might be to achieve any kind of functional walking again?
‘So I should be pleased, then?’ I asked her.
Underneath, the real question – was it dangerous to be pleased? If truth be told, I was overwhelmed. Terrified. Ungrateful. Uncomprehending. Unable to grasp that the one thing I had striven so hard for over such a long time, upon which I had focused so fiercely, had happened – not with a bang but with a whimper. I had ‘walked’ – in inverted commas – for the first time. I needed to hedge it around with as many conditions and caveats as I could, because I was not strong enough, mentally or physically, to cope with too many expectations, my own or anyone else’s. What was so strange was the lack of proprioception – my brain told the legs to move, but unless I looked down, or watched them in the mirror, I couldn’t tell whether they had obeyed or not. As is relatively common with incomplete spinal cord injuries, I had some muscle power in my affected limbs, but very little sensation. If I was dispassionate, I’d turned a corner which I had been desperate to reach, only to see how rocky was the new road that lay ahead. I had climbed a hill, gasped my way to the horizon, only to discover the peak was still miles away. The work was going to get harder, not easier, with no guarantees about where it would take me. The fight, in fact, was never going to stop.
Susan’s advice was blunt: ‘Look, you might never have seen around the corner. And at least there’s a road there – it might have been a dead end.’
In other words, just shut up, stop thinking, and get on with it. So I did. One of my happiest evenings in the spinal unit – and that’s a sentence very few people ever write – was after that session, texting the good news to Dave and Dougie. ‘Today, I walked for the first time.’ And already, I could plot where I would go next. Every new stage brought new issues. The next one to sort out was my hyperactive plantar flexion – the strong toe-pointing spasm which made my feet catch on the ground when I tried to lift them, thwarting walking. I was fitted with AFOs – ankle-foot orthoses; big white plastic splints, worn inside trainers, which ran down the back of my calf and under the heel. Then I was able to progress to a tall, airy contraption called a gutter or pulpit frame, and within a week, by looking down at my wavering feet and telling them where to go with my eyes, I managed twenty-two steps across the gym with only two physios in attendance.
Maybe, like Katy, I was on the way to redemption. Because I’d learnt that in childhood, hadn’t I? That transgressive little girls got better in the end. After two years in bed, Katy got a wheelchair. Some weeks later, she managed to stand.
Katy knew Papa was right and she was careful, though it was by no means easy to be so with all that new life tingling in every limb. Her progress was slow, as Dr Carr had predicted. At first she only stood on her feet a few seconds, then a minute, then five minutes, holding tightly all the while by the chair. Next she ventured to let go the chair, and stand alone. After that she began to walk a step at a time, pushing a chair before her, as children do when they are learning the use of their feet. Clover and Elsie hovered about her as she moved, like anxious mammas. It was droll, and a little pitiful, to see tall Katy with her feeble, unsteady progress, and the active figures of the little sisters following her protectingly. But Katy did not consider it either droll or pitiful; to her it was simply delightful – the most delightful thing possible. No baby of a year old was ever prouder of his first steps than her.
And Pollyanna. Who after a long time spent in bed, writes to her aunt and uncle:
‘Oh, I can – I can – I can walk! I did today all the way from my bed to the window! It was six steps. My, how good it was to be on legs again! …
‘Pretty soon, they say, I shall go home. I wish I could walk all the way there. I do. I don’t think I shall ever want to ride anywhere any more. It will be so good just to walk. Oh, I’m so glad! I’m glad for everything. Why, I’m glad now I lost my legs for a while, for you never, never know how perfectly lovely legs are till you haven’t got them – that go, I mean. I’m going to walk eight steps tomorrow.’
Glad she lost her legs for a while? Oh, pass the sick bag, Pollyanna.
There remained one other unattainable bit of walking kit in the gym, a vast, expensive high-tech beast in prime position next to the therapists’ office. It was called the Lokomat. I had gazed at it in awe and undisguised envy all these months. Now Susan had hinted that I might be tested on it. Perhaps it possessed the strong magic I needed to carry me to the next stage of my new life.
Like Pollyanna, I was determined to be glad about the possibility.
CHAPTER SIX
This Way Madness Lies
It’s the hope I can’t stand.
Title of former fanzine of Sunderland FC
The woman, a previous in-patient, limped slowly up the gym to the physios’ office, an unmistakably spine-damaged walk, leaning on a stick. At every stride she groaned and sighed noisily, as if deeply aggrieved with the world. Loud enough, certainly for Reiver and I, working alongside each other on the triceps machines, to stop and stare.
As she passed us on her way back, she was even louder. Although she walked reasonably well, she was determined to broadcast her suffering.
‘Oh dearie, dearie me. OOOOOOH. This isnae fair. OOOOOOOO, I cannae do this.’
A surge of anger rose from my guts. I dropped my head to suppress it.
Reiver’s response was even more visceral. ‘Oi, I’ll swap places with you,’ he called. Pretending to be humorous, but furious really. Preoccupied with her own self-pity, the woman didn’t hear him.
He turned to me, anger compressing his face. ‘For fuck’s sake. She comes in here moaning, when she can walk like that.’
I nodded grimly, all compassion evaporated. That poor woman with her incomplete injury, whatever her ongoing pain, possessed everything that he and I, also incomplete, were working so obsessively to attain. In truth, by then I had gone a bit mad. The ability to walk had become a compulsion, a quest for the Holy Grail. What the paralysed learn about paralysis, eventually, is that there are many things far worse than not being able to walk, the main one being the inevitable double incontinence, part of a vast layer-cake of physical and psychological horrors. But in the beginning the loss of mobility is the all-consuming priority. I was nowhere near ready to accept immobility. Instead I had found, in my focus to stand and move again, a most effective diversion from all the wider implications of my situation.
They had given me a room to myself, perhaps recognising how hard I was trying and the progress I was making; besides, I was by now an old lag, the longest-serving inmate on the rehab ward. All my fellow patients from the early months had been discharged, and I had little energy to spare on the poor newly injured souls learning their first grievous lessons. I felt like a sixth former who had earned the privilege of a common room. It facilitated my training but later, when the sad tale of Gollum unfurled, and the night-time phone calls started, it also facilitated my capacity for madness and made me vulnerable. But I am getting ahead of myself.
It had been eight months since my accident. Psychologically, I was a mess, avoiding visits from friends, reinforcing the wall of denial. Dave and Doug were the only people I wanted to see; I awaited their visits like a lonely dog, eyes fixed on the corner around which they would first appear. Dougie’s hair, an enormous head of student curls on top of his six feet five inches, almost reached to the ceiling, making him an unmistakable fond silhouette against the light from the window at the end of the corridor. Dave’s walk I could recognise with my ears alone – steps always firm, jaunty, positive, despite the grief he ca
rried. On alternate nights, for many of those months, those two men loyally appeared, criss-crossing the country, clocking up thousands of miles.
Physically I had made remarkable progress. Shortly before Christmas came that first appointment with the Lokomat, the supercar of the neurophysiotherapy world, designed to teach severely impaired neurological patients to walk again by encouraging neuroplasticity. Neuroplasticity was my new buzz word: it means the brain’s ability to reorganise itself by forming fresh neural connections, in response to injury. Basically, your body’s ability to rewire itself – to some extent. The machine, which cost as much as a top-of-the-range Ferrari, consisted of a tall hoist with a parachute harness, built over a treadmill and incorporating a robotic exoskeleton to encase your legs and feet. Everything was controlled by elaborate software.
At first the therapists put me in the parachute harness and suspended me on the treadmill, minus the robot legs. With the belt turning on minimum speed, they ‘walked’ my legs by hand while I dangled, a six-foot, seventy-kilo Tinkerbell, from the ceiling, bearing what weight I could through my feet and hands on the handrails, my urine bag tucked up under my chin to prevent the tubes being snagged by the tight harness. By then I cared about nothing. I had become so fixated on walking that I existed fiercely in the moment, in the gym, in recovery. I had quit the normal world.
Me on the Lokomat. You can see from my face that I was going slightly mad. (© Martin Hunter)
Then, with difficulty because of my very long thigh bones, at the outer edges of the machine’s capacity, I was strapped into the robot legs and began what I can only describe as a dream sequence: watching myself in the mirror striding purposefully along the treadmill towards my reflection. Head up, shoulders back, hips swinging, knees eager, toes buoyant on springs, heels touching down, just the thing. Swish, swish, swish, went the swish Swiss machine, like an expensive washing machine on a woollens cycle, working my legs in a sedate, sturdy, slightly splay-footed mechanical rhythm. I walked like a wooden puppet in that scene from The Sound of Music, ‘high on the hill as the lonely goat herd, lay-dee-odl-lay-dee-odl-lay-dee-hay’. And the extraordinary thing was, as I made the movements, and watched the reflection of me making them, I experienced an unmistakable jolt of electricity in my brain – a kind of neural zinger; the mind–body circle being rejoined; the reconnections waking up; the grey matter crying: ‘Oh, that’s what walking was! Hey, I remember how to do this!’ It was as if an automatic brain function, lain idle for nine months, had had jump leads applied to it.
My head burnt with joy, excitement, instinctive wariness – don’t build up your hopes, kid, this does not mean you will ever do this by yourself – as I saw my feet landing gently in front of me and I felt the blood pound in my ears. The first session lasted fifteen minutes, and I felt my buttocks and hamstrings and ankles squealing distantly in surprise, but I woke the next morning with my lower body feeling more mobile. Susan slotted me in for as many sessions a week as she could and soon I was up to thirty minutes a time. Fairly soon I was bearing up to sixty per cent of my own weight and trying to walk with the machine, as Willie advised, as if heading into a stiff wind. And sometimes, when the treadmill stopped and I was unhooked from the robot but still supported by the hoist, my brain could persuade my legs to keep going, to take a couple of tiny shuffles forward and back.
No one was making any promises. The Lokomat might very slowly wake up my legs but in the end it might be of little more therapeutic use than strengthening and loosening muscles. It might speed up what potential there was in my body; it guaranteed nothing. I still couldn’t feel what my legs were doing; I could only tell by watching. But I was utterly committed, high on the endorphins the exercise was bringing to long-paralysed limbs.
My steps were taking me into unknown territory. Some people who knew me, from outside the spinal unit, told me they considered my drive to walk again quite heroic, which made me uneasy. The concept of heroism was dangerous ground. I knew I was pretty deranged and being as selfish as a top athlete. Everyone likes to think that if the question was asked of them, they’d respond the right way. They’d be the one to run towards danger, to rise above pain, to snatch the stricken child from the path of the runaway lorry, to make a super-human effort, but as I was discovering, disability complicates that horribly. Research has shown that able-bodied people believe that disabled people, by their intrinsic vulnerability, symbolise imperfection. And disabled people, aware of this, try to transform their disability from a perceived deficit to cultural capital by trying very hard and becoming ‘disabled heroes’. So people like me, striving to the point of madness to recover, are also unconsciously reinforcing the pattern. We want to be judged successfully, piously, ill in the eyes of the healthy. The sociologist James Overboe has said that while this behaviour can inspire a few disabled people, it gives the able-bodied the false impression that anyone can overcome a disability – and invalidates the experience of the majority of disabled people because they physically can’t. Because sometimes just staying alive with a disabled body constitutes the highest form of heroism, but it’s not perceived as such. Disabled people who try very hard, though, are portrayed as more than human, and rarely as ordinary people doing ordinary things. Later, when I calmed down and reflected a bit, I realised that my obsession with walking as the be-all and end-all wasn’t doing anybody much good, especially me.
But right then I was a woman on a mission. The physiotherapists increased my work rate. I was getting up earlier in the morning, with the support of the nursing staff, to slot in a session before gym officially started. I was ordered to take my hands off the rails and keep going on the treadmill – plonkety-swish-plonk, plonkety-swish-plonk, toes-turned-out – and the work had become ten times more difficult. Instead of having a modicum of control, I felt like a giant infant bouncing helplessly in a baby walker, Wallace and Gromit and The Wrong Trousers. I found myself grunting with the huge effort of moving with the robot legs each stride, willing my hips to flex, my thighs to lift and my knees to bend. Willie told me I sounded like Serena Williams. If I relaxed my concentration even for a second, my feet would drag and the treadmill would swish to a halt, silently rebuking me in a very Swiss sort of way for my inefficiency.
After that first hands-free session, I remember, I transferred onto a plinth in the gym, and collapsed, arms crucifix-fashion, asleep almost before my head hit the pillow. I slept for an hour and twenty minutes while other people’s physio sessions went on like a fair around me. You were laid out, said Susan, not entirely unsympathetically when she woke me at 4 p.m., like the prison guard in The Silence of the Lambs after Hannibal Lecter ate his face off. Reiver, who had watched me on the machine, desperately yearning to be allowed on it too, had written my name on a brown parcel label and tied it to my foot, as if I was in the morgue. Later, Susan was blunt. ‘You’re going to have to man up and stop falling asleep in the gym after you’ve been on the Lokomat. Are you eating enough?’
No, I wasn’t. I was overdoing it. I wasn’t sleeping well, despite my tiredness, and blood tests showed me to be seriously anaemic. The nutrition police were sent in to counsel me, gravely lecturing me on how to choose high-calorie foods, which, as someone who had spent her life yo-yo dieting, and knew the calorific value of everything, I found darkly amusing. Then I fainted on the Lokomat, because I had not taken my midodrine tablet, a heart drug, a longer-acting version of ephedrine, which was artificially sustaining my blood pressure. Everything went very suddenly white and shut down. When the luminescence cleared, my head was on Susan’s shoulder and Willie was holding my legs up in the air in front of me.
Me asleep in gym. Laid out, said Susan, like the prison guard in The Silence of the Lambs after Hannibal Lecter ate his face off. (© Martin Hunter)
My fragility was showing in other ways, my emotions were equally unsteady. The Times had chosen a spinal charity as one of their recipients for the Christmas appeal, and I was asked to write something in addition to my usual mag
azine column. The picture desk in London emailed – could they come and take my picture to go with the article? Although I was a long-in-the-tooth journalist and knew the game, I remember being deeply offended, because I was in hiding from the real world. Until I knew how far my progress was going to take me, I didn’t want wheelchair pictures; I wanted to be invisible. Like a remote tribe being discovered by nineteenth-century explorers, I feared that if a photographer captured my image in a chair, they would steal my soul. Revelatory images of me would be far too personal and represented a loss of control.