The World I Fell Out Of

by Melanie Reid

  Janis Joplin sang that she’d trade all of her tomorrows for a single yesterday, and that was still how it was for me.

  Something happened, though, gradually, along the highways and byways of wheelchair life. Getting a serious spinal-cord injury is like rebirth as a new, unfamiliar, radically altered person. You’re starting again in a strange world and you have to grow up all over again. From infant to dependent child, to self-conscious adolescent to some kind of maturity – this stuff doesn’t happen overnight, psychologically or physically. You don’t wake up the day after ground zero and say, Right, that’s just the way it is, I’ll just get on with it – not unless you are devoid of imagination or are some kind of passive, secular saint. Were I to be happy and mature in my new identity, whatever that might be, I had first to accept my injury. And in a funny way, that happened while I was unaware. Just as I had stepped across the mysterious gap between night and day that June morning on the mountain path, body and mind separated from each other by fatigue, the same thing has happened to me now. First there was the darkness of denial, and then the unpindownable dawn of acceptance, so that when I raised my eyes I could look at the mountains and think, well, actually, I’m rather lucky to be here to see them.

  I have made a dignified peace, finally, with the dilemma so beautifully encapsulated by John Hull about his blindness. ‘If I were to accept this thing, if I were to acquiesce, then I would die. It would be as if my ability to fight back, my will to resist was broken. On the other hand, not to acquiesce, not to accept, seems futile. What I am refusing to accept is a fact.’

  In life there are golden ages, but the frustrating thing about golden ages is that you don’t appreciate you’re in one when you’re in it. It is only later, looking back, that you understand what you had. There are golden ages in offices, when a team of talented people, well-led, spark off each other, laugh a lot, go to the pub together, and produce the highest-quality work. Friendship groups have golden ages, when serendipity decrees that everyone you know and love is living in the same flat, or the same city, and you spend great times together, relishing the company and the fun, convinced this is so good it must somehow last forever. Families have them too, decades unmarred by death and divorce, bolstered by prosperity and love; and of course as individuals, we have golden ages of health, achievement and romance. You can have a golden age with a wonderful, kind horse which is never sick or sorry; or a dog that is more special than most. The art of living well, I think, is to understand how swiftly you get old, and to learn to identify golden ages as quickly as possible. And the real secret is not to be always looking forward, plotting the fulfilment of tomorrow, the job you haven’t yet got, the perfect partner you haven’t met – or indeed the amazing horse that would do everything effortlessly and the bigger horsebox you’d need to take it places. Instead, focus on what constitutes your life at the time and love what you already have.

  Now, I try very hard to do that; to understand that I am actually, despite the wheelchair and the lost body, existing in a golden age of sorts. No person has ever felt more loved than I do; and I am liberated to tell people how much I love them, which is a powerful thing. I have been fortunate enough to squeeze, as it were, into the back of the church at my own funeral, to read the cards sent to my anguished husband, smell the flowers, and catch some of the loving words and warm tributes. Wisdom can be hard won. I’ve learnt that we can choose to find happiness, whatever our circumstances. Most people, noted Abraham Lincoln drily, are indeed as happy as they choose to be. Or as Anne Shirley of Green Gables preferred it: ‘You can nearly always enjoy things if you make up your mind firmly that you will.’ By the nature of what has happened to me, I have, along with anyone else with long-term health issues, a ringside seat in this debate. The misery of paralysis could have blown away my family; could have destroyed me. Together, inspiring each other, Dave and Doug and I chose a different route. In writing, I found a form of salvation: I had no religious or spiritual roadmap to follow, no role to adopt, just a blank page of biographical narrative to create. I could only be myself, navigating a new, alien, terrifying landscape, trying to dodge the clichés and the maudlin, seeking for a way to laugh, however darkly, because it stopped me crying.

  When you have a serious health condition, there is pressure from all sides, including yourself, to fit the hopes and gloss over the fears of others. You have to evaluate a medical system which does not have the resources to take you as far as you might like to go, and which is therefore constructed to damp down expectation. You will experience immense generosity of skill and character from health workers and medics but you will also encounter other disabled tribes and lobby interests, who have appointed themselves the tyrants of How to Be and regard you as a traitor if you don’t fit their mould. You will make your own mind up. John Callahan, the quadriplegic cartoonist, once drew two sheriffs in wheelchairs drawing their six guns on each other: ‘This town ain’t accessible enough for the two of us.’

  Staying alive, in the beginning, was the hardest thing I have ever had to do. Funny, after Glen Falloch, I remember telling people that the mammoth endurance walk which led me there was the hardest thing I’d ever done, both mentally and physically; and that I would never do anything like it again. I nurtured that achievement as a personal treasure, a mental trophy for extreme endurance. How ironic, in the light of what followed, that exhaustion and bad blisters should impress me so much. And how fortunate it is that we have no concept of what our future holds. When you confront your own death, and but for the smell of roses attend your own funeral, you emerge with a more vivid understanding of what it is to be alive – what Andrew Marr, post-stroke, described as the pungent loveliness of life.

  I coped in the beginning by deciding that false hope was better than no hope, on the grounds that if you don’t aim for the stars you’ll never reach the top of the hill, or if you don’t shoot you’ll never score, and a whole host of similar corny truisms. Isn’t that what you have to do with identity theft – never give up looking for traces of your stolen self? Hope has never left me, but it coexists with acceptance. And now I can appreciate what I still have. My transcendence, my subsequent night to dawn, has been to go from being alive to living. Too much of a healthy life, when you take it for granted, is spent in a whirl of plans, achievements, expectation and wanting, trying to bend time to your will. Only when this is taken away from you do you start to understand the simplicity of being where you are, with what you can see, and the wind you can feel on your face. Buddhists, of course, have known this for two and a half thousand years; and, in the twenty-first-century West, the mindfulness movement has borrowed some of their tenets and turned reflection into a billion-dollar industry, but really, it’s unnecessary: you just have to stay still, focus on the beauty of ordinary things and let the world spin on without you.

  In that spirit, then, Dave and I appreciate that for all we have lost, what we still have is precious. We are growing old together, the gap in our ages wiped out by my disability. When I can, I try and cook for him. We find happiness in sitting in companionable silence together, or watching the news, or perhaps meandering down the track with Pip, laughing fondly at her. She is a dear sweet old dog now, but still incorrigible. Life may be smaller, but life is still immeasurably good.

  And then there is Dougie, who after he went to London got a job in a shop on Carnaby Street for the winter and sofa-surfed with friends while he tried to find a career. He hid it well, but it was a tough time for him and he was a little lost. I worried, because he had already had to cope with so much. I longed for things to be easy for him, for a good job or an interesting career to fall his way – as every mother does, but in my case perhaps more keenly. I had transgressed the natural order of things: the mother who had caused her son grief which he did not deserve and she could not redress. Again, as when he was a student, I could not spontaneously jump on a train or in the car and go and see him, take him out for supper and cheer him up. He never read the Pollyanna
books – I spared him that – but my son was nothing if not resilient – hard times do that to you, I think – and he had the support of wonderful friends. His dream was to become a commercial pilot, and that’s what he eventually managed to do: after months of dogged application he was accepted onto a training scheme, took out an eye-watering personal loan, and learnt to fly.

  ‘I can see our house from here.’

  Now, some years on, he has found his own golden age. He’s done it, and I am alive to see it. He’s a first officer for a big airline, flying out of London. He sends me pictures of buildings and European cityscapes on WhatsApp, with the message ‘Guess where I am?’ I hear happy snatches of his news in London, that frenetic, fun-filled, friends-rich twenty-something life. For me, it is blissful. Earthbound, wheelbound, I have seen him grow wings and soar, just as the cliché of parenthood suggests one should. My guilt, about my impoverished ability to be a proper mother, eases.

  One day, as I was finishing this book, he messaged me to tell me to look out at 5.15 p.m. for the landing lights of his plane; he was on a flight plan with an approach to Glasgow which came in over the hills several miles to the south of our home. When he was smaller, we used to watch the lights of the inbound aircraft, lingering in the night sky over the Campsies. I sat at the end of the garden at the appointed time and – There! There! – for about seven seconds, along the horizon, was the tiny black dot of a commercial jet making its descent. Dougie in the cockpit. I’d seen my boy piloting a plane, albeit from ten miles away. A sweet, private, heart-burst of embarrassing proud mother syndrome.

  At home, those distant hills, the sky, the trees, all bring daily comfort. With my acceptance of my situation slowly came the compensation of nature, the slow and quiet kind that you miss until you stop moving yourself. The writer and birdwatcher Simon Barnes says the wild world is full of attainable miracles. ‘Life in the twenty-first century is like being perpetually stony broke, unaware you have a pocketful of diamonds.’ And I have chanced upon those diamonds by sitting very still, moments of breathtaking fascination watching tiny things move around me. The thrill of the minutiae. All you have to do is stop and look, but so few of us do – heedless of gardening and the buds that come from the cold soil, happier to crush a beetle underfoot than watch it try to negotiate the kitchen floor. Becoming a born-again birdwatcher meant I was privy to precious theatre – a tawny owl which one memorable night came and sat under the outside light about seven feet away from the French windows. As we watched, holding our breath, it examined us with its wide, ruthless face, then casually floated down, three times, to swallow mice – whole, wriggling. It was as vivid, as intimate, as the best of David Attenborough. I had a ringside seat for a sparrow hawk on foot stalking around a shrub just outside the window, like a Nazi trooper, trying to locate the robin it had struck but missed in flight. And then, one autumn, I witnessed an extraordinary twenty minutes of frenzy and clamour when a flock of redwings descended on the rowan tree at the front door, heavy with red autumn berries, and stripped it like locusts. In my old life, I realised, I would have jumped out of my car and I might have noticed, in passing, that the tree was suddenly denuded. Now I was catching the secret dramas. These were close to privileges of a kind I could never have imagined.

  In this way, you learn, very slowly, to rediscover joy. You may not be dancer, but you are human. You are here for moments when you think: well, actually, life’s not that bad after all. You tell yourself: not only are you still alive to have seen such wonderful things, but, yes – admit it, and I’m not good at this – you appreciate it more than you might otherwise have done.

  None of this is to say that I’m yet skilful at being disabled; in fact, I can see I’m still not much past stage one, unconscious incompetence, and not yet at stage two, conscious incompetence. The inner superwoman is not dead. She still lurks inside me, a truculent spectator; I can find myself hawk-like, observing and silently micro-managing people in my head, consumed with the knowledge that I could once have done what they’re doing much better than them. What a delusion. The fool doth think he is wise, but the wise man knows himself to be a fool.

  ‘The thing is,’ says Dave, looking ineffably superior, ‘is that I know I’m stupid. You, on the other hand, have a long way to go to accept your frailties.’

  Slowly, very slowly, I have started to reintegrate with society. It’s not easy. Going out in public in a wheelchair is physically difficult and psychologically demanding. The feeling of slowness and vulnerability is intense. I dislike when I enter company and everyone makes a fuss, standing up and rearranging furniture around me. The barrage of incoming How Are You-s? People are just being kind, but the end result feels like they’ve used the Tannoy: ‘There’s a cripple in the room!’ Can you imagine trying to socialise in a crowded room in a wheelchair? It’s impossible. You just get jammed in one place, parked always at fart height, neck bent back, aching with the strain of looking up. You cannot mingle. Accordingly, all conversations in wheelchairs outlast their natural lifespan. Small talk is replaced by overly heavy talk. Your radar for the people you’d prefer to avoid is rendered useless, whereas you yourself are the most obvious person in the room. Your body language is neutralised. You can’t do what everyone on two feet does, which is to dance the subtle waltz of social gatherings, bouncing and drifting from person to person, ducking and diving, seeking lightness, laughs, gossip. Going to the loo becomes a crowd-parting performance – the Tannoy blares again: ‘Cripple heading for Ladies! Make way!’ – rather than a useful way of escaping from a conversation which has run its course. Or maybe, of course, I’m just an anti-social git. There is definitely an element of that.

  These feelings I have learnt to internalise, to the point where they don’t bother me so much any more, and the smiles and gracious thank-yous which I hide behind are less forced than they were, because people have nothing but goodness in their hearts towards me. And yes, of course, it is lovely to get invited to things. And yes, inevitably, when I venture out there are times when I do need help getting through doors or up kerbs, and then I am profoundly grateful not to be ignored when I ask for help. Perhaps, in a wheelchair, you always want it both ways. Of course you do. You want to be ignored for your chair, and treated as you would be on your feet. Yet you expect subtle special treatment. You want to meet sensitive people who understand your plight instinctively. You want every door, every slope, kerb and car park to be so wheelchair friendly that you can zip through life without drawing attention to yourself. You want to socialise, but on your terms.

  After about eight years in a chair, I felt grown up enough to go to London by myself on the train – a long journey from Scotland but a manageable, calculated risk that nothing too bad would happen that I couldn’t cope with. When you travel in a chair, you book a space for it to park in and you book special assistance at the stations – expert helpers to get you on and off with ramps. And the system works very well. You’re placed next door to the loo and the buffet brings you what buffets bring – remember, life is too short to moan about food. The only thing you can’t do is move anywhere else in the train. Or legislate for who might sit opposite.

  On one particular journey a man got on at Birmingham (I was lucky; it could have been Carlisle) and from behind put a heavy hand on my shoulder.

  ‘This seat free, mate?’

  I nodded. Offended at being touched, but by definition powerless.

  He was the train companion from hell. He was drunk, but holding it together in that menacing way that heavy-duty alcoholics can. The smell of booze from his body pervaded our end of the carriage. A Londoner, a big powerful tattooed white man in his forties, he had the hardened flintiness of someone who could survive on the streets or in prison. You wouldn’t want to cross him, let’s say. Worst of all, he wanted to talk. Jesus, I thought, darkly amused, it’s like being back in the spinal unit. It was almost funny, except it wasn’t, because I could go nowhere.

  At first I managed to avoid catchi
ng his eye and so he pestered the passenger opposite, who was with his wife and new baby. He was talking nonsense, but it had an edge – he demanded a response. He knew he was a pariah and he wanted his presence acknowledged. The father humoured him briefly. My opposite number consumed two cans of super-strong lager and two whisky miniatures, in swift succession, and then fell asleep. Aware I was clenched with tension, I relaxed.

  Half an hour out of London, he woke. He leant across the table to me.

  ‘Good book?’

  ‘Er, not really.’ It was a proof copy I was reviewing. Immediately I realised it was the wrong answer.

  ‘Why you reading it then?’

  I half smiled at him, ducked my head immediately. Rigid.

  ‘Is it your job then?’

  ‘Sort of.’

  He smiled wolfishly. ‘I knew that. You’re not reading it like normal people read.’

  I kept my head down. I felt totally invaded. He was pathetic, but he was also scary. It was clear he had identified in me someone lower down the food chain than he was. Had I had legs, at this point I would have got up and moved away. The silence grew, and I was aware he was studying me.