The World I Fell Out Of

by Melanie Reid

  All this was gone. There could be no disguise or reinvention through clothes. Clothes did not flourish in stillness, without sway or flow or hang, because clothes were about allure, about the body within. Whatever I wore, I always wore a wheelchair. Searching for a physical identity now in front of the mirror, I felt akin to a horse wearing blinkers. I could see in front of me, but everything to the sides and behind was hidden. I wasn’t three-dimensional any more; I couldn’t turn and glimpse myself in flight to check me out. I had no real sense of what I looked like. There was little communication in stillness and I was now, by definition, permanently still. How we walk, sway, tilt our bodies, wear our clothes, reveals everything – defiance, pride, comfort, depression, power, confidence, taste, ambition, disguise, seduction, aspiration, approachability. I had time to observe these things. I learnt that, once lost, the final twirl in the mirror was a glorious thing, a basic human freedom now removed. I learnt that I couldn’t even remember how to twirl when I rehearsed it in my head. Silly, isn’t it, that you could forget something like that?

  I felt degraded. I could look smart – but I wanted to look desirable. Some mornings, I held morally dubious debates with myself. Perhaps it would be preferable to be blind. Then I could still dress proudly, knowing I continued to look nice. No need to feel embarrassed, or worry about pitying glances. Then I could sustain myself privately in the dark with internal, imagined pictures of myself. Then I could still dance, and make love. As it was, a sense of self-disgust was reinforced every day. When I ventured out, getting me in and out of the car seemed akin to transporting a large circus animal. Intimate, a bit sweaty. But not in a good way. And as I did my awkward, effortful slide across the transfer board from wheelchair to car and back again, I was conscious of all the hidden helpless bits I could do nothing about: my atrophied buttocks, my slumped back, my clothes, unfelt, ridden up like crop-tops. Burning in the ashes of my personal vanity, the internal dialogue. ‘Apologies if this isn’t very elegant, chaps. Apologies if my backside looks big in the baggy leggings. Because to be honest, I can’t look over my shoulder to examine it in the mirror now and I’m sure it’s not a nice sight. And to be honest I might even be presenting you with a less-than glorious builder’s bum, but I have no way of knowing, because I can’t feel uncovered flesh, and you’d be far too polite to tell me.’ Physical pride. Femininity. I had to let them go, fluttering from the window, letting the past fall away.

  It became a comfort to adopt reclusive attitudes: that tweak of the dial that said, stop trying, stop going out, make it easy for yourself. The party’s over. Who cares what you look like? I ceased to worry that one pair of reading glasses was held together with Sellotape and the other so stretched I had to hold them on my nose. Would anyone notice if I didn’t wash my face? Why bother with mascara, earrings? I stopped flossing my teeth and there were periods when I stopped brushing them. I did no kissing any more. It became apparent how serious self-neglect begins. I stopped getting my hair coloured. I lived and slept in the same T-shirt between weekly showers, wore jumpers riddled with holes and, perpetually, the scabby trainers. What did anything matter? I missed boots so much. Early in my time back home, I bought three pairs on the internet in blind hope, and none would fit on my watermelon feet even after being cut open. Paralysed feet were incredibly difficult for carers to force into boots. Do undertakers have the same problem putting shoes on dead people? So I continued in the size 10 trainers, two sizes too big, but that was the only way to prevent pressure points. Grey boats of protection, easy for carers to put on. The kind a middle-aged man with severe learning difficulties would wear. I didn’t care any more.

  Before my accident I had been in some of the best shape of my life, trimmed down to size 12 jeans – a statement which now rings with futile vanity, a pathetic boast. The When-I club. In hospital I became as slender as I’d ever yearned to be, although the bitter irony did not escape me. Once, in my shower chair in front of a small hospital mirror, I caught a first post-accident glimpse of myself naked – great bony shoulders, visible ribs and hollow armpits. That was the look I once craved, but never slumped helpless in a chair. By then I could have got into a pair of size 10 jeans, I realised, except it would have been physically impossible unless I was suspended from the ceiling and a team of carers pulled them up my legs as if they were filling sausages. Now my carers dressed me in easy-to-put-on leggings, long-sleeved thermal vests, old cashmere jumpers and fleeces, layering to keep warm. As wardrobes go, it was a bit like being in prison, or on a never-ending camping holiday. One evening Dave and I decided to go out on the spur of the moment and I went to try and change my top half, by myself, into something nicer. What would in the old days have required a five-minute twirl turned into a farce. A lovely French shirt was useless, because I couldn’t do the buttons. The velvet-trimmed T-shirt exposed a Buddha midriff bereft of muscle tone. Eventually, I got stuck, half in and half out of my favourite special tweed and satin jacket, one arm jammed, the other armhole hooked behind me on the wheelchair handles. I couldn’t move my chair and had to summon Dave using the mobile phone round my neck to rescue me. Trying to look nice, huh? My clothes were saying no.

  At first, I felt furiously envious of women who look stunning in clothes, whose bodies still signalled attraction. Who still had everything I had lost. I tried to resist the inevitable lure of the miserabilist high ground of disability: the sour voice that said my incurable suffering trumps your trivial pursuit of a designer label. You want Gucci? Me? I just want to walk. Later, those feelings died and I began to appreciate women who were happy in their bodies. It was wrong to be bitter – most women, like me, just wanted to look nice. I was just glad they could.

  Loss of control over bodily functions was another profoundly desexualising thing. Under the laws of nature, double incontinence was for babies, toddlers and the extremely elderly – it wasn’t for adults. It was an anomaly, a weakness, a breach of the proper order, as far from attractive as it was possible to be. Shit ain’t sexy. For Dave, in the early days, helping his wife onto a shower chair so that she could spend an hour poised over the loo trying to persuade her bowels to work, was not a turn-on. Neither were the dreadful times when I had bowel accidents, either in bed while he lay next to me, or dressed in my chair, when he had no choice but to help me out of soiled clothes and onto a shower chair. This was a man whose stomach, decades before as a young father, was too sensitive to allow him to change his children’s nappies without retching. Not many people have seen severely disabled bodies with very few clothes on and certainly my own was the first one I saw. And I enforced the novelty of it on him. Not a pretty sight, not by contemporary standards of beauty. The human body was not designed to be immobile; neither was its sphincter meant to fail. My pee drained out from my abdomen just above the pubic bone, the antithesis of sexually alluring, and everywhere I went, my leg bag went too to collect it. Touch me, and you just might be grabbing a bag of cold piss.

  Then there was the wheelchair itself, a cold hard metal appliance doubly antithetical to any kind of touch, let alone a sexual one. A wheelchair was a physical and mental stockade to keep you apart. Like a departing train. Stand back. Doors closing. Mind the gap. Easy, casual, precious human contact disappears once you are in a chair – all those loving pats and brushes and caresses of family life. When that spontaneous benign intimacy – bumping playful hips, falling asleep on someone’s shoulder on the sofa, squeezing up together at the table – is removed from you, you don’t half yearn for it. Touch becomes deliberate. You must organise it. When you want to hug those you love, they must bend out and down, cantilevering over your square metal skirts, your hard corners, while you reach up, try and sling your good arm over one of their shoulders. You kiss cheeks, feel their face on your collarbone perhaps, but you are denied the proper, lovely, torso-close, full-body experience of a full-fat, five-star bear-hug, lingering and comforting. ‘One is always nearer by not being still,’ wrote Thom Gunn in his poem ‘The Sense of Mo
vement’. And so touch became a new hunger for me. I watched the TV news, and everything I saw featured it – handshakes, back slaps, rescuers hugged by the rescued, protesters arm-in-arm, concert-goers swaying together, goal-scorers disappearing under a pile of happy, flailing bodies. Everything involving human events drama necessitated touch. Whereas I moved through life as a diver in a shark cage moves through a busy sea. I could stick a clawed fist through the bars but handshakes were insufficient to bond.

  Disability taught me many things, but one was the tragedy of how risk-averse we were becoming about touch, even those not in wheelchairs. Human contact was being demonised by paranoia about abuse, to the extent that teachers, carers and adoptive parents were running scared of touching children. Collectively, something vital for human nurture was threatened. Life is made wonderful by touch, but we take it for granted until we lose it. Life is saved by touch. Literally. According to Francis McGlone, a professor of neuroscience who specialises in touch, premature babies who are stroked put on fifty per cent more weight compared to those who aren’t, are able to leave hospital six days earlier, and a year later have better mental and physical abilities. This research is perfectly framed by a case of the premature twins, struggling for breath in separate incubators, who on their mother’s pleading were reunited. They immediately put their arms around each other and began, dramatically, to thrive. They had been starving for touch. Without nurture and touch, or when locked in orphanages, babies die.

  Infants bump and jostle with playmates all day. Children denied smart phones do the same. Adolescents, now wonderfully huggy and tactile, drape themselves around each other, link arms, take selfies cheek-to-cheek. Us Brits, we’re getting refreshingly better at expressing the joy of being together. As they grow, the young become lovers and then have their own children, when the touching, hugging cycle begins anew, transformative – satisfying their babies’ need for contact with their parents’ skin, essential for them to thrive. Humans of all ages reach out and touch each other, tired or lively, insecure or confident, happy or sad, needing play or conflict. Team sport is the perfect antidote to isolation, the pre-match huddles, the celebrations, the fans. Other gregarious mammals are the same – dolphins, horses, cows. Watch them: they love to rub, jostle, play, lie down together, just like us taking pleasure from skin contact with their own kind. This is something much more profound than sex.

  When you’re disabled, however, this often vanishes. You join many other solitary people, spectators in lonely, uncomforted skins, unable to re-stoke their souls with the kind of non-sexual intimacy humans require. You hunger, then, for any kind of touch. Paralysis means you’ll be hungry whatever happens. Normal skin sensation had been removed from eight-five per cent of my body. Only my right hand, the outside of my arms, my shoulders, neck and head could feel. I could lie in bed and Dave, who knew my heartache, would sleep against the length of my body, trying to comfort me, but I was unaware he was there. My skin didn’t talk to his skin any more.

  My self-esteem as a woman took a particular beating that first winter in hospital, when, exceedingly vulnerable and probably quite close to a breakdown, I let myself be used as someone else’s emotional lifeboat. By the time I had moved into the single room, my fingers had improved to the point where I could use my mobile phone. This meant I was no longer guarded by Dave; and some people began to get in touch. Texting. Could they come and see me? It felt like pressure. I was a creature emerging from hibernation, a snail that had lost its shell. Everything was bright and fast and dangerous; it was as if I had lost my skin and had no protection from anything. Superwoman was now prey.

  Out of the blue, someone I knew through the horse world texted me. He had always been a bit of a lame duck and I had been kind to him in the past. Now, at the precise point that the doctors perceived I was exhausted and advised me to stop writing, Gollum latched onto me. He started to phone me, in the afternoons at first, then late at night, long rambling calls about his problems, seeking emotional support from me. He had left his wife, he said. He was seeing someone else. He’d lost his job but found another. Tragedies from the past, always somebody else’s fault, were pressing on him. The conversation was always all about him. Looking back, I don’t think he once asked me how I was. He would phone drunk and I would still try and counsel him. I was too weak to hang up. Only later did I realise how unfair and wrong his behaviour was; you might even define it as a form of abuse. I was a complete mess and in that state the unlovely Gollum became almost the ghost of all I had lost. Who’s gonna love you now? As I lay in the dark and listened to his incoherent ramblings, horrified by his presence in my life but unable to escape it, I pretended, briefly, I was still a desirable woman.

  He came to see me once in hospital, a moment when reality was restored. As he stood there, boasting about his newly restored prosperity, and I dutifully listened, my bowels decided that they should come to my rescue, and they delivered me of a small, silent, wet fart. The faint but unmistakable smell ring-fenced my chair, humiliating me utterly, but it did mean Gollum left very quickly. His phone calls ceased. Who’s gonna love you now, indeed. Thank you bowels. Now I knew the answer for sure. What a black comedy life was, indeed.

  There was a Christmas party in the spinal unit and they brought in a rock band. In Glasgow, tribute bands are a thing apart. They attack the music with the disinhibition and volume of those who believe they are stars, not just those who pretend. This band were Kings of Leon, and of course their biggest hit was ‘Sex Is on Fire’.

  We sat, ringing the room, us poor souls in our chairs, our neck braces, our incontinence bags and our tubes, some of us with hands too damaged to clap. And then came the chorus, and the band raised their arms. They wanted us to join in the chorus with them, so they pointed – you! – and so the room full of terminally frozen bodies obediently chanted that yes, their sex was, er, well, maybe, on fire.

  Sometimes nothing is ever too dark to laugh at.

  With hindsight, fear of sexual annihilation was what made me a fleeting victim of Gollum. And fear of sexual rejection is another of the four primary causes of negative self-image among disabled women. That was another of those real No shit, Sherlock statements. If, when you were able-bodied, you never felt supremely attractive, then you can imagine that when you become profoundly disabled you’re beaten before you start. No surprise there at all. A young woman, who had been disabled since she was ten, told me she had been stopped in the street by men who said, ‘It’s such a shame you’re in that thing, you’re beautiful.’ The first few times she smiled sweetly and thanked them but now she ignored them. She was twenty-six and soon to qualify as a lawyer – an attempt to regain some of the status her disability had stripped from her. Poignantly, she said she had never been desired or kissed – ‘damaged goods indeed’. Compared to her, I realised just how lucky I was.

  In the spinal unit, rightly however, they took sex very seriously and were much more grown-up about it than we were prepared, or capable, of being in the immediate aftermath of our injuries. There were specialist out-patient fertility clinics for longer-term paralysed people. For us, as raw in-patients, just beginning our new life, there were education sessions on sex with a body which didn’t move. Men and women separately.

  ‘It is,’ said the nurse in charge, a no-nonsense blonde, ‘perfectly possible to regain your sex life after a spinal injury.’

  Peony, sixteen going on thirty-six and more knowing about sex than most of us put together, rolled her eyes. She’d dived into the shallow end of a swimming pool in Spain and broken her neck.

  ‘And paralysis does not affect fertility in women, so you must be aware and use contraception accordingly.’

  There was me, in my fifties, and Periwinkle, who was older and had a disabled husband. Daffodil, forty-something, who had been injured in a car crash. Foxglove was a young woman who had come off a motorbike. We kept polite faces, refrained from scoffing. It was all true. Spinal injury does not affect pregnancy: lots of par
alysed young women have babies and that’s a fabulous thing. Generally, carrying a baby is easier every way if you’re paraplegic rather than tetraplegic, less risk to your body. Given the extra physical complications of a high neck break, having a baby would be much more problematic. Once, I was contacted by an able-bodied man who said he was, as far as he knew, the only child born of two tetraplegic parents. And there was no doubt the subject held dark curiosity for many people, not just us. Later I met a woman who had broken her neck and become friendly in the spinal unit with a similarly tetraplegic man who made video porn films. He tried to persuade her to make a film together, her hoisted on top of him. ‘We’d make a fortune,’ he advised her. ‘People pay big money for that sort of thing.’

  When it came to the mechanics of sex for paralysed women, complete injuries were to be much favoured over incomplete, because of those soft and floppy legs. The intrinsic physical difficulties for people like me were what utterly defeated and therefore amused me. My legs were heavy and most of the time rigid with spasm. My adductor muscles clamped my knees together with a force that would delight the most demanding nun in a convent school. I was as unmanoeuvrable as your average second-row forward in a provincial rugby team – and, let’s face it, about as alluring. I even had the same hairy legs because I couldn’t reach them to shave. To get my knees apart would require a heavy-duty car jack. If making love was best suited to soft, supple, sensual, giving, eager limbs, then I was in the wrong movie.