by Melanie Reid
There was so much to learn. Fairly early, I came to realise that every single injury is different. If you equate spinal cord damage to a lorry hitting a British Telecom exchange box on the roadside, you understand that no two collisions are going to have exactly the same outcome. In every case there will be subtle but profound differences in how wires and cables are wrenched out, fractured, stretched and torn. Sometimes the whole box will be taken clear out of the ground, leaving only a stump of connections. Other times it gets only a glancing blow, breaking just a few on one side. Think of the big cables as the main nerve conduits, and the wires inside them as the connections for billions of nerve cells, all chattering away, sending messages back to the brain. Only then do you get a sense of the infinite variety of damage that can be inflicted. My right hand allowed me to grip a fork and eat; my neighbour in hand therapy could not, yet we were nominally the same level of injury. The lorry crashes in much the same way, but a millimetre further left or right, and different wires are ripped.
As the weeks passed, and I spent more hours in the gym, building up the strength of my arms, I was able to do more. I could, when seated on a physio plinth, my legs straight out in front of me, lean and reach toward my toes, then return, slowly, effortfully, to the upright. ‘Good, Mel, very good!’ I can still hear Susan’s voice, that suggestion of surprise and extra enthusiasm. Spinal shock, that self-inflicted ice age, is said to last six weeks. It was in that rough timeframe post-accident that the toe wiggle came. Exploding with joy at this, and relishing how it lightened the faces of my family, I began to wonder if my diagnosis had been so accurate after all. My optimism, it seemed, was not so wrongly placed. The progress flooded me with positivity and made me doubly eager to get to the gym but also, conversely, lent me patience. Improvement had started and with that I was content to relax, aware that the timescale was out of my control. Long-game strategy. I would hunker down, stay positive and wait; a philosophy which remains with me still.
In the gym, without me realising it, all the exercises Susan set me, together with the electronic stimulation in hand therapy, were building towards one end. Hours on the triceps machine, building up enough muscle to tilt forward a little over my knees and lift myself fractionally in my chair. Pressure relieving, it was called. The art of lightening one’s backside. As my left wrist and hand grew stronger and started to hurt less, I worked steadily on balance and torso strength. I re-learnt the simple art of sitting independently on a hard bench; then, for hours, practised the technique of how to shuffle my bottom sideways, half an inch at a time in the beginning. Extend arm, tilt weight forward a tiny bit, lift, push with other arm. While I wobbled above it, my backside, hesitantly, slowly, would slide. Usually I would go a little bit one way, then back again, but one Friday afternoon, near the end of the session, Susan told me to keep shuffling. So focused on the technique was I, that it was only when I reached the corner of the plinth that I saw she had placed my chair there as an extension of the bench – at the same height, with a short, wooden transfer board bridging the two surfaces.
‘Keep coming,’ she said. ‘Now reach across and put your hand on the far side of your chair, and lift towards it.’
And before I knew it, I had crossed the board and my bottom had slipped into the haven of my wheelchair cushion. Safe. All by myself. No hoist. No helpers. Just me, my arms and a short plank. I gaped at Susan, brain boiling at what she had stealthily engineered.
‘It’s a Friday miracle!’ she announced, beaming. ‘Mel’s done her first transfer!’
She had of course planned it; she liked to reach a landmark achievement on a Friday, to send her patients coursing on a high through the weekend. I burst into tears, and then I looked at the clock, which said ten to three, and cried even harder, because I realised that exactly three months previously I was in a Royal Navy Sea King being expedited to hospital, facing the end of the world. By every measure, it was a massive achievement, as significant, I realise now, as the things I used to regard as landmarks in my earlier life – exams, new jobs, buying houses, half marathons. If not even bigger than that. Transferring would prove as useful in my new life as learning maths. Being able to transfer from your seat to another without a hoist was, for a tetraplegic, epic, a passport to a kind of independence which might not have been possible. On the list of priorities, it’s close behind being able to feed yourself. With an ability to transfer, in theory you can – if conditions are favourable and of course that’s a big if – move into car seats, on and off beds, sofas, airline seats, without having two people and a crane in attendance. A world of possibility opens up.
There was a huge amount of technique to transferring. You needed to practise the various tricks that get you from a soft bed, for instance, into which your hands and your bottom sink, decreasing your leverage, to your chair. To get in and out of a car you need an extra-long board and some courage, bridging the looming gap over the door sill, like a nerve-racking gangway ship to shore. To cope with a difference in height, transferring from a lower sofa, say, back to your chair, needs very strong arms and a lot of conviction. You have to master balance, arm power, your transfer board (I was now given my own, and never was a varnished piece of wood with tapered edges valued as such a badge of pride) and the encumbrance of your legs. My Achilles heel was my left hand, on which the finger joints and knuckles are distorted and hypersensitive from nerve damage. Learning how best to manoeuvre the wrist to lever my weight, without causing too much pain, was a constant challenge.
Transferring into a car does not, if you are a tetraplegic, look pretty. Nothing like your average celebrity, swinging mini-skirted legs sleekly out of a limo. Nothing like a paraplegic even, who has the use of most of their torso, and can look fleet and graceful swinging on their arms and lifting their own legs as if they are weightless. Whereas tetraplegics flail and flubber, upper body lurching forward, arms behind them like ski jumpers in order to push, head facing away from direction of travel, grunting with effort and red in the face. Like sea lions stranded too far from the sea, we toil and flounder to the edge of a flat surface to launch ourselves elsewhere. And transferring can easily go wrong. Lots of my fellow patients, home on weekend pass, misjudged their transfers and ended up on the floor, from where they phoned the ward for advice.
Soon I too was told I could start going home for a visit – first for a day then, when the adaptations on the house were finished, and care organised, for a whole weekend. Those initial trips home had a certain dream-like quality; they were almost out-of-body experiences. The only creature who really enjoyed it was our dog, Pip, who turned herself inside out with joy to see me. A gentle little Staffie rescue dog, she had been very confused when I had disappeared; her delight in seeing me again was overwhelming. Her ferocious jaws parted in a smile from one ear to the other, a grotesquely happy, funny sight. She was the most relaxed of all of us. Everyone else – Dave, the district nurses, the council carers – seemed tense and keen for the responsibility to be removed from them as soon as possible. It was an ordeal for me too – I was scared. I only relaxed in the car on the way back to the spinal unit on Sunday night, which I regarded as home. Gym on Monday morning was all I could focus on.
After the toe wiggling, the clinical staff took to inquiring, carefully dispassionate, if I had noticed any further movement. Ankles? Knees? Feet? When something more appears, we will work with it, they told me, so I lay at night, wiggling my toes, straining to push my heels towards the end of the bed. Everyone was studiously non-committal. Their first diagnosis was safe ground, they seemed reluctant to leave it. These areas are emotional minefields; doctors and therapists tread warily. It frustrated me, but I didn’t blame them. They’d seen my X-rays and MRI scan; I hadn’t. But I was challenging the diagnosis fairly hard by now. I’d give them bloody Asia A, I vowed.
Once the three-month marker had passed they took off my collar, a landmark day of recovery in itself. Then I was allowed to go to the hydrotherapy pool – the privilege so nea
rly removed from us by the militancy of Hellebore and her objection to wet trainers. The pool was a turning point. It was initially one of the oddest experiences, where the gap between dreams and reality, between past life and present, was both agonisingly close and yet never wider. The chlorine smelt the same as I had known since childhood, the water promised the same freedom and release, the acoustics were as bad, but I was no longer me. I had convinced myself I would be magically set free in the water, cured almost biblically, and would swim away, set loose by the buoyancy. How harrowing and tantalising those sessions were to begin with. Getting in was an ordeal: wedged in a mean little pool chair, far too short to support my thighs, I was lowered into the water by a hoist. It was, it occurred to me, exactly like dunking a witch. The therapists floated me off the chair, packing buoyancy aids around my neck and shoulders, and I tried to cope with the sudden near-panic, the crashing disappointment of my continuing helplessness. Nothing had changed. Still paralysed, still contemplating the damn ceiling, unable to get upright, unable to control my body. Passive as an iceberg, my useless motionless body lurking under the water.
My attitude changed as soon as I was towed to the poolside and was able to get enough grip on the side with my fists to haul my upper body upright. That was bliss – a wave of glorious normality, holding myself against the pool wall, eyes orientated horizontally. To start with, that was enough. Then, in subsequent sessions, as I floated, the physios started working my leg muscles. They bent my knees up and then, aided by the buoyancy, I could straighten them myself. There was movement. Pretty soon came a momentous session when I was being held upright by one of the physiotherapists, my feet on the pool floor and my body weight held by the water. I peered forward, looking at my own limbs under water.
‘Try marching on the spot,’ said Willie.
I fixed my eyes on my leg, ordered it to rise, to step. And it started to obey me. I ordered it down, using my eyes, and it went – slowly, floppily, but it went. I tried the other. It tried; it lifted at the knee. Yet again, came that explosion of joy in my head. My legs still worked. They did. They lifted on command, helped by the water. I had seen it. Back at the side of the pool, holding myself upright in shoulder-deep water, my feet on the floor, I managed to sink both knees and then straighten them, locking my knees and hips. Susan manipulated another Friday miracle by shuffling me up the side of the pool into shallower water, so that when I repeated the exercise I raised most of my upper body upright out of the water – buoyed by the water, of course, but bearing some of my own weight. She told me I was working towards verticalisation, a pompous term which made me laugh.
Time then for a reassessment of my injury. Back in the gym, going from lying-to-sitting on a plinth had become easier – Susan put her hands on my tummy and could feel my muscles starting to work. I was re-diagnosed from a ‘complete’ injury to an ‘incomplete’. I moved into Asia category B: in other words, there was now some scope for recovery.
‘Can incomplete injuries walk?’ I asked her.
‘Yes, sometimes. It’s not pretty, though.’
‘I don’t care about that.’
I thought about it a bit.
‘Can Asia Bs walk?’ I asked her.
‘No. Ds can walk.’
The elephant in the room leant on me gently, and asked again. Will you, won’t you? But another door had opened and I started ogling other bits of equipment in the gym. I was like a child at Disneyland too small to go on the most exciting rides, who watches others fractionally taller pass through the gates with fierce yearning in their soul. I wanted to park my chair at the end of the parallel bars and practise sit-to-stand, as I saw others do with such ease. It became a game with Susan. That machine? No. Then how about that?
‘No,’ she kept saying, getting exasperated. ‘You couldn’t manage it. These are for people who have some leg function, or who can walk. And you don’t.’
And at the start, it was true. But as some movement crept back, she allowed me to try some of the things I craved, each one a delicious victory. Soon I was lying on the benches beneath the metal cages, my legs trussed up with slings and hooks, attempting sets of repetitions against the resistance of springs. Now my task was to build up whatever faint muscle fibres were still firing.
A salesman came to the gym exhibiting a leg bike which boasted functional electrical stimulation. You cycled with electrodes stuck to your quads and hamstrings, which fired your legs to turn the pedals and encouraged the regrowth of neural connections. He was a paraplegic himself. While he was wiring me up for a trial, I confided in him, a complete stranger. I wanted him to understand why I was hopeful.
‘My legs are showing a bit of movement,’ I said.
He nodded, not unsympathetically.
‘And my toes are wiggling,’ I boasted.
He looked at me, the world-weary to the infant.
‘Yeah, that happened to me for a while. Didn’t come to anything, sadly.’
There’s a man who knows how to close down a conversation, I thought. But the message, unwelcome as it sounded, was not something I had considered. Could there be disappointing conclusions to a toe wiggle? Generally, just as I avoided negative people, I chose not to listen to unwelcome truths. My secret idol in the unit remained Stoical. His progress was proceeding slowly and steadily in the gym; I watched closely from afar. I was going to do that next, I vowed, when I saw him given new exercises to try. Around that time, I met him in the corridor. A meeting, like so many between the spinally injured, brief and deep. He asked me how I was doing.
‘I’ve been diagnosed incomplete,’ I told him.
‘That’s good,’ he said.
‘How about you?’
He was the opposite of an excitable man, but he was animated. ‘Improving. Look at this.’ He lifted his knees up, one after the other, taking his feet on and off the footplate of his wheelchair. My mouth fell open at the thrill of it.
I rolled on, even more determined that I was going to follow in his footsteps. I was on a constant mission. The darker side to being a Pollyanna, of course, was the hurt and loneliness that lurked below. Pollyanna used cheerfulness as a blanket to comfort her against disappointments; somehow, if she could make everyone else feel good, her own sadness might be assuaged. If she could perpetuate the fantasy that life would have a happy ending, she could stay as a child, innocent and naïve. But this could be unhealthy.
On the other hand, it might not be. The American psychologist Martin Seligman says optimists view adversity as temporary and external, that is, not entirely their fault, as opposed to pessimists who view adversity as unchangeable and personal. While Pollyanna wasn’t wise, she was fairly unstoppable – and her approach brought its own benefits. Optimists persist in the face of setbacks and they cope better with chaos, while pessimists tend to give up. In other words, hope can get you through and keep you going, even if you never quite fulfil your dream.
All this, I’m afraid, rang horribly true for me. Single-minded, determined, if spectacularly unwise, I couldn’t help myself. My focus on rehabilitation became more and more intense as the weeks began to turn to months. My gym routine was settled: arm weights and leg bike in the morning session; then in the afternoon working towards standing and weight bearing. Long sessions strapped in static standing frames, trying to accustom my blood pressure to the shock of being upright, and trying to lock my knees. Then I progressed to the end of the parallel bars, where I pulled myself into a standing position, over and over and over again. Each time I tried to make the movement slower and more controlled. Upright, wobbling, I had very little conception of what was happening, attempting to stay balanced over feet I couldn’t really feel. An awakening body brought pain, something I had not really suffered before. My lower legs burnt constantly, as if in a deep-fat fryer, my knees and ankles locked with spasm and painfully so, especially at night. The positive interpretation – mine, anyway – was that the pain was down to a return of sensation and the stiffness due to muscle ache.
Susan, returning from holiday, rewarded me with another ‘Brilliant, Mel!’ when she saw me stand. Either she was getting soft, which was impossible, or I was still making progress. My legs, after months of electrical stimulation and grinding exercise, had become strong enough to bear my weight. In hydrotherapy I had managed to stand, propped between the side of the pool and a physio, and then supported by the water I had swung my legs forward in a few consecutive steps. It was walking, Jim, but not as you’d know it. My spirits continued to soar.
My attention turned to the various peculiar walking machines in the gym, all of which the flinty-hearted Susan had previously bombed out. The doctrine of Pollyanna Must Die was carved on the soul of all spinal physios. In one corner, very rarely used, was the heaviest-of-heavy-duty walking machines, the Arjo – a large blue four-wheeled frame, not dissimilar to a Victorian dockyard crane, with a large padded horseshoe for the user to lean their elbows on, and straps that went under their crotch to catch them if their knees buckled. The Arjo walker required four physiotherapists – one to pull, two to crawl alongside, placing the patient’s feet, the fourth to follow with a wheelchair to scoop them up if they collapsed. Scarce resources meant its use had to be carefully planned, which Susan did one afternoon. The scene will forever be seared in my memory – a cluster of blue-uniformed therapists and me, at the centre of it, ratcheted manually into an upright position, propped on the frame. As the wheels were released and it started to move, I was able to go with it, my legs loosening and swinging forward, feet wandering vaguely in the air, criss-crossing like a baby giraffe’s, refusing to go where I wanted. The physios placed them for me, and I stepped my weight forwards, first to one, then the next. The strange, poignant little entourage shuffled up and down a distance of about seven metres, not once but twice. Out of bravado I tried to do a third walk, but my body failed me. I could barely get up to start. As I slumped, emotionally and physically wrung out, I realised everyone in the gym had stopped to watch. A fellow inmate, Reiver, neck rebuilt with metal pins, told me later that as he watched, a great bolt of envy surged through him. He so desperately wanted to do what I was doing. Later, happily, he would – and more.