The World I Fell Out Of

by Melanie Reid

  She spent a lot of time reading: the Bible, mostly. Granny was a god-fearing Anglican in a Northern Ireland riven by religious divide. Averil would turn the thin pages by rubbing repeatedly across them with her clenched fist, her good arm. Her right one. Like mine. Mostly, she would spend her days copying out passages from the Bible into her diary. I remember seeing her write, the pages wedged on her lap under her face, the pen jammed between her rigid fingers, her right arm, wrist fixed, tracing faint, spidery lines on the page. She could not feed herself, and Granny would spend long hours spooning gruel into her mouth, followed by giant cups of weak tea. Occasionally, there were scenes when she became distressed, crying out incoherently, and I remember witnessing small, awful melodramas when her frustration would overwhelm her – and God knows she had reason – and she would put her fist to her nostrils and try to suffocate herself. We had to run inside, then, and tell Granny. As I write these words, I am filled with a profound sense of sorrow.

  Here again, time wrinkles a little; the gap between then and now grows thin.

  Averil died in 1966, just before her fifty-fourth birthday. By chance, on the centenary of her birth, 21 April 2012, a piece of music that I had co-written with the composer Sally Beamish, ‘Spinal Chords’, was broadcast on BBC Radio 3. The music was to express the challenge of paralysis. My sister, who also had a great affection for Averil, remarked that it was a beautiful coincidence to commemorate someone so utterly forgotten. Three years after Averil died, in 1969, some sufferers of encephalitis lethargica in a chronic hospital in New York were treated by Oliver Sacks with a new drug called Levodopa – L-dopa. A number of patients made a brief, almost miraculous recovery from the encephalitis, and started to walk and talk again as functioning human beings. Some bore witness to the horrors that had happened to them over decades of incarceration; some were convinced it was still 1920 and they were the age they had been when they fell ill. Sadly the effects of the drug did not last and mostly the patients relapsed into their frozen or catatonic state.

  Paralysis is a universal human terror. In the twenty-first century, engineers across the world – in the US, New Zealand and Israel – began to work on the idea of an exoskeleton for paralysed bodies: an external robot body you would strap on and walk again. It was not quite the magic bullet that L-dopa delivered, however fleetingly, but it offered the same sense of the curse being lifted from the afflicted. The fear of petrification – imprisonment inside ourselves – goes right back to fairytales, with a magical release for the good and worthy. The prince awakens the sleeping beauty; the stone statue returns to life; King Midas, through personal redemption, rescues his daughter from being frozen in gold.

  Everywhere, people in wheelchairs pricked up their ears and dreamt about wearing magic robot legs, even just for one day. My friend Annie wrote to me, reminding me of the Hans Christian Andersen tale of the eleven princes, brothers, who are turned into swans by their evil stepmother. Only for a few hours of darkness every night were they allowed to be human again, because their solitary sister was battling the spell by knitting stinging nettles into shirts for them. Princess Eliza gathered the nettles in graveyards and knitted away, under a vow of silence, her hands permanently blistered from the stings, for if she finished by a certain day her brothers would be permanently released from the spell. What we would give to be normal again, Annie said wistfully, wishing she could knit nettles, even just for a few hours of darkness.

  I tried an exoskeleton once, when a set of New Zealand-built Rex legs were brought to the spinal unit. They were vast, bulky things, a children’s toy Transformer brought to life, which held me upright and allowed me, whirring and clunking, to take a few steps until low blood pressure made me ask to be released and allowed to sit down. Disconcertingly, my brain tricked me; although I was safe, I felt as if I was toppling to the right with every step. I wish I could say it was mind-blowing and inspirational, but it just felt very scary. It would be interesting to try electric legs again, now my mobility has improved, but I doubt that for me they would ever be functional.

  We may all dream. It is only human to do so. When you are in a damaged body, or have a chronic condition, you never quite cease to tease yourself with that ‘if only’ and the ‘what if’. The universal fantasy of being allowed to re-enter one’s old body, however briefly, and experience life again. Maybe this is not just for disabled people; maybe everyone, growing old and weak, yearns to re-enter the kingdom of their youth for a while. I have discussed this with sufferers of Parkinson’s disease, who fantasise about knocking back some magic potion and then half an hour later springing to their feet to walk, talk and move – ‘just like,’ one woman quoted her granddaughter, ‘a normal walking talking granny’.

  Trying the exoskeleton called Rex.

  And what, I wonder, in our fantasy hour of freedom, or our week, or month, what would any of us want to do? It is a powerful thing, to open the prison doors to dreams. Would you want to play with your grandchildren? Or spend it making love one more time to your beloved partner? What seems certain is that you would turn towards contact with the human world; to people; to warmth, and touch and talk and the reassurance that you are a functioning human being, loved and connected. To escape severe physical disability’s hardest element of all, isolation.

  I think of Averil often. There are times when I catch glimpses of my twisted hands or hunched shoulders and it awakens deep childhood memories of her, but I appreciate how enormously lucky I am by comparison. She was a human being, a woman, with an identity and a vivid personality lost behind the mask. As Oliver Sacks wrote, how hard must it be human, to stay human, in the face of such unimaginable adversities and threats. Can we ever begin to understand the stillness and darkness of that arrested, frozen life, and the courage and humour? I remember those amused blue eyes watching me play.

  As all damaged people discover, spectating on life is scant compensation but it can be wryly entertaining. Think of us as your audience, you normals, think of us as a minority tribe of little people with big eyes, who sit very still in the shadows, watching you on the upper stage – you, the healthy, dominant tribe at its asinine best, squawking and fighting about stuff which you think matters and which we know doesn’t, always in a frantic dash to get somewhere as quickly as possible. Gathering our painful wisdom around us for warmth, and laughing at things which really shouldn’t be laughed at.

  CHAPTER EIGHT

  Home

  The eyes of others our prisons; their thoughs our cages.

  Virginia Woolf

  You are lucky indeed in life if you find where you want to be. Some people spend their whole lives searching for the place and never find it. Nearly thirty years ago we found home – those intangible warm arms, that beating heart – in a higgledy-piggledy old cottage, perched in the foothills of the Trossachs mountains in Scotland. There, in a hidden valley, up a long rough track, in a place where people would choose to go on holiday to get away from everything, we found happiness. Quite simply, after we moved there we never wanted to be anywhere else. It was, and still is, a primitive dwelling in the rural Scottish vernacular, metre-thick walls and only one room deep. Over the centuries, it seemed, whenever an extra farmworker was hired, or a son needed a home for a new wife, or a cow a byre, or someone required an outhouse, an extra room was tacked onto the gable end. By the time we came, the property stretched for eighty yards across the side of the hill and boasted traces of about six front doors. It had low ceilings, zero insulation and tiny rooms linked in a chain, and records showed that people had been living there for at least three hundred years. What the place possessed above all else was an intensely good feeling: it looked to the sun; its face was open, kind and welcoming. The people we bought it from, who qualified as authentic 1960s hippies, had brought in a water diviner. He had found a ley line, one of those mystical energy highways apparently emanating from the Highland Boundary Fault, running through the kitchen: this was why the cottage was so special, the reasoning went,
and had remained inhabited long after other similarly remote ones nearby had fallen into dereliction. Dave and I, cynical about mysticism, wondered privately if the diviner might not merely have traced a water drain, but refrained from scoffing: we might not believe in ley lines, but we were not about to question any harmless blessings. And certainly time showed how much people loved sitting in that kitchen, rocking with laughter and friendship.

  I adopted the same attitude towards the rowan trees which had been planted outside the front doors, a traditional act to placate the fairies. They were supposed to bring good luck and although I wasn’t remotely superstitious it seemed a little churlish and insensitive to cut them down. Respect old magic. Best of all, for me, a rough hill came with the smallholding, marginal land between us and the forest which the farmers did not want, but it sufficed for my horses, and there was a tumbledown old stable where the Clydesdale working horses once lived. Dates from the early 1800s were carved in the stone. It was a budget paradise. We hiked and rode and reclaimed bits of the hill from the gorse; and then rebuilt bits of the moss-laden farmsteading as we could afford it, relishing the unlimited space and freedom. Dougie had perhaps one of the most idyllic childhoods possible, running wild from morning to night with his friends from the nearby village.

  Dave learnt the art of dry stone dyking.

  Late one night, the phone rang.

  ‘Is that V—?’ said the voice, fey, smoky, asking for the previous owner.

  ‘No,’ I said. ‘Sorry. She’s moved. We live here now.’

  ‘Oh, you lucky, lucky people. Don’t you know, man, that place is the centre of the earth?’

  I laughed.

  ‘No, really. Take it from me, man.’ He drew deeply on a smoke. ‘Listen, I’m phoning from Germany. I’m an old friend of V—’s. You’re living in the centre of the earth. That place is just … special.’

  And perhaps it just is. We were never happier. In the beginning, fresh from two broken marriages, we had stretched ourselves to the limit to buy the house, and were totally broke. After a couple of years, living more or less on lentil soup and porridge, we remortgaged and had enough to put a new roof on the bones of the old stone barn. Inside we created a budget holiday house, furnished it from quirky hand-me-downs and unwanted second-hand furniture, and advertised with what was then staidly named the Scottish Tourist Board.

  The whole set-up was fairly eccentric but our holidaymakers seemed to love it. Seared in my memory is one conversation I had with a mother of two children, part of a family from London. We were leaning on the gate chatting while Dougie, who was about seven, played with the woman’s children in the stream at the bottom of the hill. They were about two hundred yards away, paddling, building dams. We could see their heads bobbing around busily, hear the occasional snatch of voices.

  ‘You know, that’s the furthest away my children have ever been from me,’ she said. ‘I don’t let them out of my sight. Don’t you ever worry here?’

  I tried hard not to gulp. ‘No,’ I said.

  I didn’t like to tell her that some days Doug went out to play anywhere within two square miles and I didn’t see hide nor hair of him for hours. She might have reported me for child neglect.

  If our home was special, it was also exceedingly hands-on. In such a remote, rough and ready place, you needed to be fit and active. Somehow, living there, you were almost part of nature itself; the distance between the 1700s and the twenty-first century was a very slim one. After my accident, the idea of going back full-time in a wheelchair to these beloved, primitive surroundings, to reinhabiting my old life, was terrifying. I had returned briefly on weekend passes while I was in hospital, but they had the feel of camping trips, away days from the place which was my real home. My awareness of my own disability, the acuteness of my handicap, depended very much on where I was and who I was with. In the spinal unit, with its smooth wide corridors, with wheelchairs more numerous than people, my paralysis was unexceptional. There was a safety blanket in the company of your own kind, and tacit reassurance in the fact that somebody else was always worse off than you, which guaranteed the presence of experts around to help. Besides, life in hospital was organised on our terms: the staff served us, the rhythm of the day, crude though it could seem, was designed around our needs. It was a secure place. We fitted in. We didn’t really notice each other’s wheelchairs; we saw ourselves as inmates serving time in the penitentiary. There was nothing usual or strange about paralysis, because that was all we saw around us, a landscape of normality.

  My old environment, though, was an altogether more fearsome place and there I felt my disability a thousand times more intensely. In this place, so well known to me but now so foreign, of course I wanted to be the same person as I used to be. I wanted magically to have my life restored, as if the walls of home, embracing me, could somehow do this. Home, beloved home – home would surely cure me, wouldn’t it? While deep down of course I knew it couldn’t. As a practical person, the gap I experienced between what I could now do and what I used to be able to do was ferocious. The process of coming to terms with this involved much frustration and grief. I was neutered; I wasn’t me any longer, not a can-doer, not a participant. Now I was irrevocably changed to an observer. The consequences of my accident started to become real to me and it was more difficult to pretend I was enduring the short-term hardship of a bush tucker trial. It was also scary, because I had full responsibility for my own care. Now I was the only expert in the building.

  There were many things I could not fight, in this world designed for upright human beings, and especially human beings with working hands. When I was on my own they tipped me over into self-pity and hysterical sobbing fits, when I would bend over my knees and cry uncontrollably until my thighs were sopping wet and my leggings covered in snails’ trails of shiny snotters. ‘Fucking hell,’ I would scream when I was alone, and I couldn’t reach a book, or had smashed a jug, or was unable to unlock a door. ‘Fucking, fucking, fucking hell.’ I wasn’t as accomplished as Grunt at swearing, back in high dependency, but cursing was great therapy, easing physical pain and reducing violence – perhaps, in my case, against myself. My wrists had strengthened to the extent that I could turn my hands towards my mouth and bite my nails – I did that ferociously as a kind of release. I remember the first time I was at home on my own after I came out of hospital: just me, no one within earshot, no neighbours, or passers-by, no nurses or patients. And it was as if a year’s worth of despair, dammed up inside me – it was as if in the solitude the dam burst. I started wailing, ululating and throwing the top half of my body around in grief, the way you see Middle-Eastern or African women behaving when they have lost their sons to terrorism. An absolute removal of inhibition, a primal expression, casting off the cloak of emotional control. I guess it was good for me. The dog, in distress at my distress, jumped in my lap and quivered; stroking her, I managed to calm down.

  The cottage, which was on six different levels, every room descending a step downhill, had been comprehensively ramped. It was like a skateboard track, downhill all the way from the living room to my bathroom … wheeeeee. It was sufficient; I could get around; I could exist here. Slow pushing up to the top of the house in the morning, fast downhill to bed at night. Just don’t forget anything and have to go back down to the bedroom too often. Good physio for the arms, I Pollyanna-ed it. Dave and I had been too long apart. He needed my practical eye. He’d taken a whim to prune what he thought were apple trees, but had instead massacred the flowering cherry. The paperwork was in chaos; he was burning heating oil like five-pound notes.

  In the night, I woke to hear a nurse in my room, only without the usual torch.

  ‘Who’s that?’ I called, thinking I was in hospital.

  There was an audible gasp from my sleepy husband, returning from a night-time pee.

  ‘You startled me,’ he said. ‘I’m so used to being alone.’

  Dave and I spoke briefly about whether we should sell up and move
to the suburbs, to a place all on one level, with a flat tarmac drive for the car, and a smooth pavement all the way to the local shops, handy for carers’ and doctors’ visits and independent movement. We did not linger long on the idea: for us it constituted a kind of spiritual death. We could not contemplate leaving this quirky, wild place; impractical though it was, our hearts were here. Houses hold power over you. Owning property, as E.M. Forster said, and Lionel Shriver has riffed into twenty-first-century literature, makes you feel heavy. Houses pin you down and can oppress you. For all its unsuitability, our cottage was light to own: it was happy to have us; we knew that, like the landscape, it would endure long after us. For sure, if we remained I would be more hermit-like, and we would have to try much harder to find carers willing to brave the track, but it was somehow an imperative. Here we could remake life, such as it was going to be. For me too, there was the added awareness that Dave had already had enough sacrifices thrust upon him without having to leave his beloved domain. He loved his space. The laird, we used to call him. Mr Territorial. If he saw a strange car coming up the track, or walkers, his hackles would rise, he’d reach for the binoculars.

  ‘Shooters to the tower,’ Doug would yell. ‘It’s young people! Wearing hoodies! Plainly drug dealing! Prepare to fire!’

  Dave took it in good part.

  Recreating life as a tetraplegic, though, was brave talk. Perhaps it would have been the same anywhere, because really it was less about space and surfaces than the psychological process of learning my limitations in an able-bodied world, of finding a different role to the one I had before. Practical frustrations tortured me, the little ones often more so than the big ones. It was one thing to know that I could not dash down to the barn and grab a spanner to fix a wonky light; it was another to realise I couldn’t actually grip the spanner hard enough to turn the nut. With one hand that worked not at all, and the other with minimal grip, life was extraordinarily curtailed, deliberate and slow. Slow! The word was not adequate. From being someone who could achieve twenty things in five minutes, I now struggled to make a cup of coffee in the same timeframe. And once made, I couldn’t carry it anywhere; I had to sit and drink it where I made it. If you want to immobilise someone in a wheelchair, you pass them a hot drink, or indeed anything they cannot either balance on their lap, wedge between their thighs or grip with their teeth. All around me I saw things that needed to be done – to be picked up, or adjusted, or tidied, or fixed or opened, instinctive stuff … and I could do none of them. I could only look. It was a very real torture.