The World I Fell Out Of

by Melanie Reid

  The boys rescued me from my gloomy introspection. Dave needed me in a state of positive equilibrium, otherwise he couldn’t go to the pub without feeling guilty. In motivational mode he reminded me of Sir Alex Ferguson, the legendarily brusque Scottish football manager who was so successful with Manchester United, though he never swore or threw things at me. We’re back, he said, on the first rung of the ladder on the snakes and ladders board. And you’re going to get back on your leg bike and your standing frames and get up that ladder and head for the next one. We’re going to stay optimistic. Disability, we decided, required this, tempered with realism. It wasn’t naïve or stubborn to keep working on my body as long as I accepted there would be no miracles.

  Meanwhile, after his graduation, Doug moved his stuff back home. It was lovely to have him but it felt temporary; he was like a big, sweet migratory bird, too large to be cooped up, stretching his wings, feeding himself up, preparing for the season to change so he could fly off. But what to do and where to do it? He had a master’s degree in engineering but confessed that he couldn’t bear to spend the rest of his life sitting behind a computer doing calculations. He was too much of a doer, too restless. He spoke to me about jobs in marketing or selling, based in Scotland, and without anything explicit being said I realised that he felt under obligation to stay nearby to support me, although almost all his band of close friends had moved to London. At exactly the same stage in my life I recalled my resentment when my parents, who had retired to Scotland, put me under moral pressure to stay north of the Border after graduation. As a result I turned down a job offer in London which I’d regretted it all my life, another unwanted ‘what if’. Fantastic as it would have been – for me – to have Dougie nearby, as a superman, driver, fixer and moral support, it was not what was best for him.

  Go south, I said, don’t worry about me, you don’t have to hang around for my sake, and I told him what his grandparents had done to me. Move to London, I said. Get a job there, explore what you want to do. Live. Life is short. Be happy. I’ll be fine. And as I said it, two things happened: I could see the weight lift from his face and his shoulders; and I also committed myself to get on with things for the sake of him. It was best that the parent–child relationship was kept the right way round.

  Meanwhile, the stories I heard from other walkers and almost-walkers with damaged spines gave me nuggets of hope and information. It was a kind of Incompletes Anonymous. A neurophysiotherapist gave me a comforting image: she told me that what she did was like pushing a pea uphill with your nose. Slow progress was the norm; frustration was inevitable. One man who wrote to me had suffered an incomplete spinal cord injury in his neck six years earlier at a broadly similar neurological level. He wanted to bust some myths. ‘Firstly, the two-year so-called neurological “window for recovery”,’ he wrote. ‘I was told this too. While I know that we are all different, and albeit infinitesimally slowly, I have continued to improve. In fact over the past year, the pace of improvement has increased markedly compared with that over the first two years.’ Four years after his accident, he met the neurological surgeon who carried out the operation on his neck. The surgeon was impressed with his gain in arm and hand function. The last time he had seen his patient, he had no triceps function, no wrist extension and no finger/thumb pinch action. My reader asked him about the two-year window of opportunity. ‘Ah well,’ said the surgeon. ‘We’ve changed our tune, we now believe that the brain can create new neural pathways to bypass the damaged area and that recovery can continue indefinitely.’

  The patient wondered whether the two-year period might be a self-fulfilling prophecy, simply because most people give up as a result of the received wisdom. He urged me to keep going with exercise. ‘Even if it takes years we will improve – although we don’t know what the end result might be. One thing’s for sure – if we don’t keep trying we certainly won’t find out. We have to make our endeavours an art form, a culture. I believe that a cure for spinal cord injury, whether from stem cells, nanosurgery or robotics, is going to happen. We must therefore keep flexible and stop contractures setting in.’

  Another man was an incomplete C4/5 tetraplegic, coming up to his eighth anniversary. ‘I am totally addicted to rehabilitating myself. As a result of continually abusing my body I have biceps and triceps, I can stand independently and walk various distances with gutter frame, Zimmer frame, parallel bars and a gym treadmill (.45 of a mile last time out). My consultant said I would plateau in two to five years, where have I gone wrong?’

  Said another woman, hit by a virus which damaged her neurologically. ‘Fourteen years ago I couldn’t move at all, or smile, or talk, now I can do all three … I have to say from long experience that doctors, nurses and physios often predict wrong, they all said I would make no recovery …’

  One woman told me: ‘I had a major stroke nine and a half years ago – and I mean major. I’m still getting changes now. I do plateau for ages sometimes and obviously sometimes I feel I’m wasting my time. Somehow, though, I don’t know how to stop trying. I was originally told my window for improvement was six months. It’s best to ignore experts when they say something you don’t like. It helps to be bloody-minded.’

  Another of my post-accident friends, Annette, was paralysed after she fell off a horse and damaged her neck at C6. After years of intense, and expensive physiotherapy, she was walking with a stick, swimming, skiing upright. She regained proprioception. And then there was Reiver, my old partner in crime and hope from the spinal unit, who was told he would never walk again, yet within four years was walking on a pulpit frame in the house. Even Snafu, I read in the paper some seven years later, had regained enough mobility to walk on parallel bars.

  As time passed, and my body settled down from its second hiatus, it did continue to improve in numerous tiny, slow-motion ways – a process that goes on to this day. My left shoulder, which had been very restricted since the original fall, loosened up a little. I regained more strength, movement and a modicum of grip in my left thumb. With my left hand, formerly useless, I could eventually lift a mug of coffee safely to my mouth. My right hand became much stronger than it had been. After several years, my fingers softened to the extent that I could interlock them and clasp my hands into a cat’s cradle. At night, instead of a sliding transfer from chair to bed across a board, I began to use the Topro Taurus stand, getting to my feet, turning forty-five degrees and then sitting down on the bed. My adductor thigh muscles relaxed and my legs no longer acted like scissors: when I walked on my frame, always now for safety with two people in attendance, I could place my feet deliberately without wearing ankle splints. With slowly increasing stamina, I found I could stagger up to a hundred metres, and climbed all ramps the length of the house in one go. With increased exercise, and more cautious eating, I began to lose weight again.

  Around my body, as the years have passed, there have been minuscule easings as nerves tried, however imperfectly, to rejoin. Often these changes were so small that I tortured myself I was imagining them. Waiting for nerve damage to repair is the longest long-game in the world. Ask anyone with a brain injury, or a damaged spinal cord, and they will express the same frustration about a wait that never seems to end. Skin and the flesh underneath, I came to understand, had different nerve supplies: firstly, I realised I had recovered some sensation under the skin – when poked in the ribs, for instance – and next, after seven years or so, I noted the return of some form of long-distance skin sensation over the whole of my body. It’s what a healthy person might feel, perhaps, if someone was stroking them through two or three thick duvets.

  Approaching a decade post-accident, this is where I am. None of it means I am in any way a functioning human being: I am still doubly incontinent, the motor functions controlling my main muscle groups are effectively dead, and my life is still that of a profoundly paralysed person, spent in a wheelchair. I am buggered, and I always will be. But it’s a long game. I can’t allow myself to be too cynical. If I
need reminding of this, I tap my chin and feel, in some strange nerve anomaly, a tingling in my feet. There’s definitely a signal of some kind running down my spine.

  Often, I call up the visual image of Zen Master’s little army of brilliant technicians working away inside me, trying to fix the wiring. I will believe in them for as long as I have a shred of evidence that neuroplasticity is an ongoing process. That little injection of hope – let’s call it extreme hoping – every now and again makes this grotty life much easier to live.

  A sports coach called Matt Fitzgerald wrote a book about triathlon called Iron War, suggesting suffering in extreme sport wasn’t a negative, but a positive. Triathletes belonged to a ‘pain community’, people who cultivated an inexhaustible appetite for voluntary suffering in pursuit of the triumph of the spirit over the flesh. Fitzgerald wrote: ‘Our earthly lives are doomed … in the billion year perspective utterly meaningless, yet we muster courage not just to survive and bear suffering but to create meaning … we can’t resist trying to see what we can do. Human beings … try when it’s hopeless, when it doesn’t make sense any more … we are heartbreakingly beautiful in this way.’

  Heartbreakingly beautiful? Has he seen me slumped on a shower chair, all tubes and bags and purple swollen feet? I wonder if Fitzgerald includes in his pain community those who have cultivated an inexhaustible appetite for involuntary suffering. The chronically ill and disabled, who have to create meaning for ourselves because we have no choice.

  I fully understand the addictive qualities of extreme sport, but I’m wary of the fashionable notion that suffering is essential. I suspect it’s a conceit of the healthy, a leisure indulgence developed by a society which has never been safer and healthier – or less aware of that. Jordan Peterson, guru and preacherman to the millennial generation, lectures students on YouTube that pain’s vital, pain’s the norm. And there’s that other comforting quote: ‘Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.’ Who said that? Ah yes, Lance Armstrong, the greatest sporting cheat in the world. The glory of suffering might be humankind’s biggest, ever-recyclable con trick, played upon itself.

  There were always days when I got sour and sick of my handicap. Then I’d feel resentful watching the unthinking, unknowing able-bodied masses walking around – upright on legs that obeyed them, with perfect, happy rounded buttocks; watching them unconsciously spring to their feet, lean over, reach, balance, hop, run, jog, dance. I still avoid watching people dancing; it makes me too jealous. And some days, I have little sympathy for heavily overweight people, spoiling their wonderful bodies; or healthy people comatose with alcohol, seeking oblivion for fun. Every disabled person, I guess, is entitled to open those valves of bitterness occasionally and mutter, ‘If you don’t want to live – I mean live, really live, appreciate every damn moment of being free and able – give me your body.’ There is no shame in it. We are unlikely saints.

  I think back to poor old Aunt Averil. Oliver Sacks, who worked such poignant magic with L-dopa on locked-in victims like her, appreciated the ultimate courage, approaching the heroic, of those who were imprisoned by the illness. They were ordinary people made great by their endurance, he said, with their lack of complaining, their inexplicable affirmation of life in the face of inconceivable depths of suffering. He quoted Friedrich Nietzsche: ‘Only great pain, the long, slow pain that takes its time … compels us to descend to our ultimate depths … I doubt that such pain makes us “better”; but I know it makes us more profound. In the end, lest what is most important remains unsaid: from such abysses, from such severe sickness, one returns newborn having shed one’s skin, with merrier senses, with a second dangerous innocence in joy, more childlike and yet a hundred times subtler than one has ever seen before.’

  Would that this was true. I don’t feel newborn, or profound; I’m not heartbreakingly beautiful in my suffering, or a triumph of the spirit over the flesh. I just want the cheeks of my bottom to stop aching and the bloody clock turned back. ‘You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering,’ said the melancholy nineteenth-century Swiss philosopher Henri Frédéric Amiel; like Nietzsche, obviously a forefather of Jordan Peterson. Only by constant struggle, a daily fight to ‘re-climb a thousand times the peaks already scaled, and reconquer the points of view already won’ was peace to be found. Oh really? From my perspective that isn’t wisdom; that’s just a bone-headed battle hymn of masochism, a post-justification of shitty events. Don’t people who’ve had tough lives and dealt with tragedies always say things like that to console themselves? On the whole, thank you very much, I’d prefer to have gone through life shallow and healthy, untouched by both suffering and deeper insights, looking after my loved ones, playing with my horses, doing step exercises to The Killers. Lots of people do get through unscathed, the lucky complacent buggers. But I didn’t. I was forced onto another path.

  CHAPTER FIFTEEN

  A Pocketful of Diamonds

  Hope is contagious.

  Barack Obama

  It was the summer solstice, the shortest night of the year, in the mountains of Scotland. Only four hours or so of total darkness and I had continued to walk through it, cautiously, methodically, eyes down, stepping into the small pool of light cast by my head torch on the path. Deep in Glen Falloch, with a sense of mountains rearing on either side of me, and the throaty, incessant roar of the waterfalls, I found myself alone. Time had absented itself and I was disembodied with tiredness. Eyes, mind, breathing – everything focused on the path, steps slower but rhythmic. There – one foot in front of that stumble stone. Now there – next foot on a welcome gravelly bit.

  In 1803, on the very same hillside, Dorothy Wordsworth wrote: ‘We heard, as if from the heart of the earth, the sound of torrents ascending out of the long hollow glen. To the eye all was motionless, a perfect stillness. The noise of waters did not appear to come this way or that, from any particular quarter: it was everywhere, almost, one might say, as if exhaled through the whole surface of the green earth … William says, if we were to name it from our recollections of that time, we should call it the Vale of Awful Sound.’ A picture of her came to mind, valiantly trudging with voluminous ankle-length skirts, poor girl. Cocooned by the exact same sound, sucking on the same cold Highland air, I was a hair’s breadth, a tiny swerve of time, away from Dorothy. I had by then been plodding stubbornly for twenty hours on an endurance charity challenge. A little delirious with fatigue, I began to wonder if in fact I was standing still. Perhaps if I just waited, both the dawn and the finishing gate would come to me. I did not know which to expect first.

  How to capture when night becomes earliest dawn? I think I was distracted by the faint smell of wood smoke and I lifted my head, scanning the darkness. When I turned my eyes back down to the path I realised the pool of light from my head torch had softened, and around me the darkness was in retreat. I could almost sense the textures and shape of the grass rising out of the ground. Attempting to pin down the exact moment was impossible, like trying to capture rainbows or bottle clouds: night became day in a drift of split-seconds. I looked up, and could now see where the mountains ended and the sky began. Below, on the riverbank, I could make out the shape of a tent and a suggestion of white smoke drifting from the remains of a camp fire. When I brought my eyes back to the path, the light of my head torch had vanished, conquered by daylight. Fumbling, vaguely out-of-body, I switched it off, blinking at the mystery and sheer exclusivity of it all. It was all mine. Strung out across the miles, lost to time, I had literally stepped across that gap between night and day; that place where the divide between the real and the spirit world was the thinnest. I felt I was the only person in the whole world.

  The memory has become an allegory of sorts. In my forties, the years before my accident, I had fallen in love with exercise. Walking, especially in the moun
tains, had become one of the most satisfying, primitive, reassuring, liberating things to do. Walking was to be human, to rediscover ancient things. Walking always took you somewhere and walking sorted you out, made sense of problems, and made you feel good. Sometimes Dave and Dougie came too, sometimes my girlfriends, and we went for a week. Ambitious walking was like regressing to childhood: you left behind the twenty-first century, your car keys, your mobile phone (because more often than not where you were going it wouldn’t work) and your responsibilities. Like a kid, all you had to do – your adventure – was to put a bag on your back, and get yourself on foot to the place where you were staying at the end of the day.

  So I walked a lot in the hills when I could. And then after the accident, when the most obvious thing that paralysis took away was the ability to walk, its restoration became an obsession. The ability to stand supported, wobbling on numb legs, and the fierce will first to make one foot to move, then the next, was powerfully symbolic. When despair threatened to wash me away, it held me together mentally.

  In reality, such a fierce focus on mobility, although it was exceptionally good physiotherapy, was less kind to my mental health. Constantly striving, delving and analysing my body was exhausting. It was also very easy for others to misinterpret it as some pointless masochistic drive for heroism, when deep down, I just wanted to be ordinary again. As the months turned into years … four, five, six … I became a bit stuck, as if becalmed at sea, waiting for winds that never came and stubbornly determined not to move on with my life. I’ll wait until I’m walking better became a refrain. A retired medical consultant, also an incomplete tetraplegic, wrote to me, urging me to accept that I was crocked and to start enjoying life. Life’s what happens while you’re making plans, and all that. He was plainly exasperated by my hair-shirtedness. ‘Buy yourself an all-terrain scooter and get out into the fresh air and live! You can’t sit inside waiting for ever.’ But when I did go anywhere, in those first few years, I would look up at the mountains and waves of bitterness would wash over me, because all I could think was, I can’t climb them any more.