The World I Fell Out Of

by Melanie Reid

  Later, after my first long drive – fifteen miles – I texted Dougie.

  ‘Maws a pure cruiser!’ he texted in fluent Glaswegian. It reminded me why I could neither stop fighting, nor labelling it fighting.

  But fighting implies casualties.

  One day I got an email.

  My name is —. I took early retirement in order to pursue my hobbies of horse-riding, hiking and tennis. I had a riding accident in Oct 20 – and am now a C3/C4 [damage at a high level to cervical vertebra in the neck] incomplete tetra. I have read many of your articles and my experience and thoughts mirror yours in an uncanny way. However, I am now thinking of calling it a day and treating myself to a final holiday in Switzerland. I have finally accepted that a f***ed spine does not always respect intensive physio and exercise. In fact, the more I do, the worse my horrific sensations and hypertonia become. I now know that this disgusting life will never be acceptable – 100 metres hobbling on a frame held by useless hands is pointless to someone who used to ride 4 or 5 times a week and walk 12 or more miles twice a week.

  Sorry to be so depressing but just wondered if you ever feel this way. If so, I would love to hear from you. I hope for your sake that you find a way to cope but I just want out now.

  Good luck

  Dear —

  If it helps, right now I’d like to book a flight to come with you. I’m really struggling just now … the pain and the fact everything gets harder instead of easier. And I’m in a trap of my own making, writing ‘inspirational’ columns. It is my family which keep me alive – I couldn’t do it to them.

  But here’s what I’d say to dissuade you (and I speak as someone who used to be The Times’s unofficial pro-euthanasia correspondent, cos my mother took her own life very bravely when she got dementia). 1) it’s not even 3 years yet and look where you started from. 3 years is nothing, in terms of nerve regeneration. I get so many letters from people still improving after 5, 10 years. 2) 100 metres is a bloody long way. I’d kill to do 100 metres 3) hands do improve … i’ve heard of amazing accounts of recovery 4) Switzerland’s too grotty for me.

  So I join you in the depression. I understand. But try and ride it out and things could improve

  Good luck

  Dear Melanie I so feel for you. I was so independent, arrogant really and so proud of being fit and healthy. I only took painkillers for injuries due to riding accidents, I loved my life and had no time for moaners. I cannot believe this has happened to me. Now I am so bitter – I see fat slobs waddling around – people I would have despised before and now I actually envy them because they can walk. I glare at people who smile at me and make way for me – and mutter, ‘Yes go on, make way for the cripple.’ I cannot accept this life – my muscle rigidity and pain have increased – my bike and standing frame are gathering dust and most of my carers leave more depressed than me. Anyway, I am going to Switzerland next Saturday – I can’ t believe this is happening – I had such a wonderful retirement planned, I know I can back out till the last minute but I don’t think I will.

  I really, really know how you feel and wish I could have met you. I wish you all the best for the future.

  Lots of love

  Dear —

  I replied, torn between empathy and a feeling of intense obligation. I respected her decision but could she delay her trip until she was less depressed? Could getting an assistance dog help? Or phoning the Samaritans? I told her that there had been a suicide in the extended family recently and I had seen the distress it left behind; there had been so many people who loved the person, but in his depressed state he didn’t realise. Although I totally respected her decision, I said, I hoped that she would keep fighting for a bit longer until the sun came up again – because I thought it might. And I sent her my love and told her I cared. I never heard from her again.

  The correspondence affected me deeply. Guilt flooded in and wouldn’t drain away – should I have asked for her phone number? Probably. Had I done enough? Probably not. Had I said the wrong thing? Probably yes. I felt I had let her down. Given her clichés as answers. Guilt, but yes, if I’m honest there was also a sliver of self-pity. How could I cope, on top of everything else I was dealing with? Following the recent tragedy in Dougie’s step-family, involving someone he was very close to, I was still deeply worried about his mental health. How, in these circumstances, could I do anything but support life? Gareth Williams, a medical sociologist, identified what he called the routine of narrative reconstruction – how someone after chronic illness can ‘realign past and present and self and society’; in other words, a way to make sense of events in our lives. Unconsciously, I suppose, without planning or strategy, I had begun, quite literally, a narrative reconstruction soon after I hit the ground. Writing about what was happening to me became a way of processing the trauma. I tried to be honest in my writing, but for the sake of those who loved me, it was inevitably forged as a narrative which was positive enough to sustain us all. I pulled my punches. I was my own spin doctor. Writing became a liferaft of sorts for the dark days, a way of processing and rationalising grief, during which I had made several mordant quips about escaping to Switzerland. Indeed, had I been without family, as this woman appeared to be, I might have done the same as her. Access to a humane way to end your life was to me as primal as the right of women to decide the fate of their own bodies with regard to fertility. Indeed it struck me that it was no coincidence that it tended to be the same small minority of predominantly white, religious, able-bodied men who wanted to pass laws about both issues. Why should anyone exert control over disabled or suffering people? Only those of us who day-in day-out gazed upon our own paralysed or neurologically impaired bodies and endured the pain and weakness and frustration had the remotest idea what it actually meant to inhabit those bodies. To us was automatically granted the absolute moral right to know what was best for us; we just needed the law to catch up. And so I had every sympathy with my correspondent but nevertheless felt culturally and morally obliged to encourage her to delay, to be certain. Perhaps I should have been more honest. Either way, those two suicides, close together, altered the way I discussed the right to die. I remained fervently in favour of a person’s right to a good death at a time and place of their choosing, and with assistance if necessary, but I could no longer be flippant.

  During that first year at home, I tried to put my situation into some kind of perspective. Things might have been so much worse, as I had long ago decided. How could I of all people complain? Being able to drive again, and to continue to earn a living, undoubtedly made life easier, both practically and psychologically. I was not good, though, at living in the moment and blocking off consideration of my future with an incurable disability. Introspection was toxic and I found myself in tears more and more. In an email, Zen Master tried to help. Imagine the future is like skiing, he said. As you approach an awkward turn, worried about the difficulties approaching, the mental apprehension feeds back and affects your physical ability to succeed in the turn. Similarly, if you play a musical instrument, the anticipation of a tricky bar coming in the tune affects the bars before it, which would otherwise have been effortless. The secret was not to fear what was coming, but to try and enjoy the present. When things got very tough in hospital he shrank his focus to a pinprick in time and visualised himself in the foothills of a peak he had climbed a couple of times. The approaches were hard, loose scree and boulders. He tried not to look up and think, ‘Oh my God, look how far it is.’ Instead, he would attend to his footfall, stop every now and then, catch his breath and look down and think, ‘I’ve come all this way already.’

  Best, he said, to try and live more lightly. He wrote, in a letter I cherish: ‘Rupert Sheldrake the philosopher writes of the “privilege of consciousness” – how we are probably the only species that knows that we exist. An elephant knows how exactly to be an elephant – but we don’t know how to be just a human being. We think outside the box. And maybe that’s the trouble. So, with th
at privilege comes immense responsibility. That consciousness we have, it soars far beyond us, anticipating, judging. It is unfettered and in the situation you and I have found ourselves in, we need to live more lightly; deliberately and consciously we need to come back to just being, like our beautiful horses munching hay in the stable. Not have an opinion about ourselves, our appearance, our pain, the awkwardness of movement, the indignities … It’s simple, but it’s definitely not easy.’

  I tried to allow the smells and sights of home, denied to me during my lost year in hospital, to take possession of me, tried to relax and wait, just be, instead of striving, striving, striving all the time, tight with effort. The sun warmed the front of the house. Pip, wriggling with life, went around smelling of fresh earth and dew, her nose covered in soil where she had been digging. There was so much simple delight to be had in her company. Staffies are comic, vocal little dogs, they converse in squeaks and burps, and mini-whines, or they rumble around scratching, upside down on the grass or the carpet, snorting like a pig. They’re also very loving.

  She was a constant low-key, undemanding presence in the house and there were intense, fleeting fondnesses, moments you should remember and cherish but never do. One Sunday morning, I spilt her biscuits all over the floor as I tried, over-ambitiously, to refill a big container. (I was always spilling stuff, especially food; Pip would follow me like a seagull after a trawler.) Dave turfed her outside while he cleared it up, which of course made her think she’d been banished for doing something wrong, and she sat outside the door trembling, gazing at us through the glass. Oscar-winning pathetic. The floor was swept. He let her in, her demonic jaws wide with joy like a Cheshire Cat.

  ‘Smile,’ he said. He adored her.

  And she smiled so hard her lips met over the top of her nose. Her tail whirring like a rotor.

  ‘It’s all Melly’s fault,’ he told her.

  And the clock stopped for a couple of seconds while the three of us grinned at each other.

  About then, there occurred a vivid coincidence. The acting books editor at The Times had asked me to review A Crown of Thistles by Linda Porter, about Mary, Queen of Scots, and I sat outside in the sunshine reading it, facing the hillside which rose just to the east of our cottage. The chapter was about James IV of Scotland, who in the late thirteenth century lived at Stirling castle, not that far from here. James had decided to fight the troublesome Earl of Lennox, based at Dumbarton castle, and thus in October 1489 the two armies marched ‘and met in the remote foothills of the Trossachs, where a little known battle raged for several days around the Field of Gartloaning’.

  Pip.

  The hairs on the back of my neck stirred, the book fell into my lap, and I raised my eyes in astonishment – because the field facing me, in our little hidden valley, was no less than the field of Gartloaning. Despite living here so long, I had never heard even a whisper of battle. I was living that famous quote from Casablanca: ‘Of all the gin joints, in all the towns, in all the world, she walks into mine …’ What chance, I mused, led to me to be sitting outside reading one precise page in one precise book, of the thousands published every week, which revealed a long-lost secret about a remote field – just as I was facing that very field?

  I checked with our local village heritage society – none of them had heard of the battle. I did what research I could on the internet, which confirmed both the battle and how little known it was. What felt thrilling was that we had evidence pointing to its veracity. Some years earlier, the boys had unearthed a two-pound cannonball from under a gorse bush on the hill behind the house. Up until then, its provenance had been an unsolved mystery.

  Some months later the warm arms of the house tapped me on the shoulder again, half-murmuring further ancient secrets. We had recently had a drainage ditch dug at the end of the house because the nearby well, marked on the earliest maps from two hundred and fifty years ago, had suddenly started to overflow and was causing a swamp. Things subterranean must have shifted in some way: perhaps a tree root had disturbed things; whatever, the ditch was dug. And one day Dave and his son Steve, standing chatting beside it, chanced to knock a boot against something solid in the discarded earth. When they explored, they uncovered another cannonball, a five-pounder this time, a beast of a thing. Such a relic, the wet clay still clinging to it, sang with history. It occurred to Dave that the last man before him to hold its weight in his hands was the soldier who loaded it into one of the first cannons, nearly five hundred years ago. Discussing it in the pub that night, a friend told Dave that a ball that size would never have been fired at an individual; it would have been aimed at a structure sheltering many enemies, in order to implode the wall inwards, hurting as many as possible. Following the logic, some kind of dwelling or structure must have existed on the site of our house since the late 1400s. I found that idea very heady magic, much stronger than any ley lines. I was deeply affected by the feeling of human continuity, stretching over so many centuries, bound up in the footprint of the place we called home. What had these walls witnessed, over so many years? What was absorbed in the stone, built and then rebuilt, from the many generations of people who had lived their brief lives here, scrabbling an existence from the tough land? Could I feed off that sense of place; the message that said although our time was brief, we were part of something bigger?

  Who touched them last? Some poor terrified soldier 500 years ago.

  A lot of laughter and kindness, I decided, had happened here, more so than strife. The place was still the centre of the earth, man. Whatever kind of quantum mechanics had funnelled time and the chaos of existence and brought me here, I was lucky.

  Some sacrifices, though, were harder than others. As I was to find out.

  CHAPTER NINE

  A Lost Body

  Much more of the brain is devoted to movement than to language. Language is only a little thing sitting on top of this huge ocean of movement.

  Oliver Sacks

  It was time, unavoidably, for reflection. I was two people now, not one. There was me – that was my head and brain, and my shoulders and arms; the bits where I resided. The small bit. And there was other me, the big heavy useless bit which didn’t work any more but which had to come too wherever I wanted to go. We were like conjoined twins, resentful, bickering, pulling in different directions, refusing to cooperate. Actually, the cognitive me hated the broken-engined rest of me, with a vengeance, but there was nothing that could be done. Fait accompli. We were utterly trapped, dependent on each other to survive.

  Because my spinal cord was not totally severed, I was never entirely alone. Being attached to an appendage that used to be a body was a bit like being haunted. I heard echoes and whispers of suggestion from the past. I happened upon the occasional sensation inside of muscles or tendons tugging, stretching, trying to fire. My ruined nerves tricked me – was that flicker real, or just the electricity of hope? – and tortured me with phantom pain. Sometimes, there was muscle memory when I tried to move, and it was as if I asked and my body remembered and instinctively tried to obey: deep, deep inside, I felt a flicker and a tensing of muscle … and then nothing more. There were many strange add-ons to paralysis. Because my natural thermostats were bust, I needed the temperature at least three degrees hotter than ordinary people. Often, my feet and legs felt boiling hot, but to touch were ice-cold. Some nights, when Dave swung my legs onto the bed and took off my shoes and socks, one foot was warm, the other icy. As the months passed, I began to grasp the intricacy and intensity of my condition – and the enormity of the damage. I have a friend who chopped off an index finger trying to clear a grass blockage in his lawnmower. The operation to sew it back on failed and he learnt, over a couple of years, to use his middle finger in its place. Now, he notices a strange phenomenon: when he moves to extinguish a candle, for instance, and the flame burns in the space where his index finger would have been, he finds his body recoiling. He is alerted to a burn on flesh that no longer exists; his eye–brain–
hand feedback reacts to a void; the air alone is singed. Paralysis is the opposite of this; the inversion of amputation, less spooky, more gruesome. The flesh remains but feels nothing, and can be badly broken, burnt or scraped without its owner realising. Newly paralysed patients, pushed in a chair, unaware that their foot has slipped off the footplate and is dragging on the floor, have scraped their flesh to the bone. Friends in wheelchairs, perhaps a little osteoporotic from loss of weight bearing, have broken bones in their legs and not realised. Boiling water, splashed across the thighs, was not felt, but sent other parts of the body into spasm in sympathy. Skin lifted into blisters, suppurated and was slow to heal, but there was no pain at the site – a deranged nervous system expresses its upset in more general and obscure ways.

  When your flesh is dead to you, feeling little or nothing, increasingly, you are dismantled inside. Without motor function, you become devoid of physical presence. Who are you any more? This must be what identity theft feels like. Remember how, when you were small, just you and the pavement in the sunshine, you would try and escape your shadow? Jumping to surprise it, hiding to shake it off. But you never succeeded. Well, now I really had lost my shadow and it wasn’t fun at all. Try as I might, I still didn’t quite believe it was for real; that I was a statistic, one of the poor sods who every eight hours in the UK suffers a spinal injury.