The World I Fell Out Of

by Melanie Reid

  An intrinsic problem was not being able to exercise on my own. Rapidly, I realised I could not continue to call upon my friends’ goodwill to turn up once a week to do a shift with me. It was far too much of an imposition, especially when there was no end in sight. At that point in my walking I still needed orthotics, a splint upon my right foot to stop the leg dragging, worn inside my trainers. Dave lacked the patience for the fiddly business of putting them on. And both he and several emphysemic girlfriends – too many fags, girls, too many fags – found it hard pushing me back up the rough stony track to the house from the gym. Some physiotherapy students were organised for me but I felt that I was taking advantage and dropped them abruptly, shamefully. My bad manners upset me even more. The sense that I was asking too much of everyone overwhelmed me.

  Wonderfully, my own body began to help me. Slowly my leg improved to the point where I no longer needed the splint. My feet would lift on demand and no longer dragged. Another big advance came after we went to a major exhibition of disability aids and Dave, on impulse, tempted by the end-of-show knock-down price, bought me a Norwegian-made machine called a Topro Taurus, a heavy-duty walker which I rested my elbows on. It was a kind of light-weight cousin of the vast Arjo walker I had used in the spinal gym, only with the added advantage that this had a battery in its stem which helped me rise to a standing position. I could operate the lift with my right thumb. This was a breakthrough. Over the years the Norwegian, as we called it, has become a stalwart friend, a life-changing, brilliant piece of kit. I continue to use it every day to exercise and to get into bed; there is no exaggeration in saying it has saved my sanity and my body. Alone, I can safely use it to stand by myself and stretch my legs. With someone in attendance, I can practise walking. No NHS therapist I spoke to had ever seen or used one, but every therapist who saw mine was seriously impressed. How many other similar superb devices are languishing, unexploited, because they cost too much to contemplate? In a properly funded world, every geriatric and stroke centre would have multiple Topros, or similar.

  Snakes and ladders has its origins in an ancient Indian morality game. The lesson being that one climbs up and attains salvation by doing good, but plunges downwards to a lower life by doing evil. There are fewer ladders on the board than snakes; and the snakes tend to be longer than the ladders: a calculated reminder from the spiritual authorities that a path of good is much more difficult to tread than a path of sin. As a metaphor for being paralysed I found it apt; what I disliked was when a certain brand of religious people wrote telling me that ‘God puts you where he wants you to be, but the reason is never told; it is for you to discover.’ This divine predestination stuff infuriated me. My issue with religion, much as I tried to respect others’ faith, was that it failed the ultimate test of humanity. When terrible things happened at random to lovely people, or natural disasters swept away thousands, it belied the existence of a protective loving divinity. Were we to turn scornfully to God or Allah or whoever and say, well, where exactly were you? How could this happen on your watch? Wasn’t it your job to stop that? Do you take us for fools?

  Even as I got angry, though, I felt I betrayed the friends and strangers alike who prayed for my recovery. Their love and kindness brought undoubted positive energy and I gladly accepted support from any quarter. Snakes and ladders weren’t just the Christian myth of paradise and the fall; they were a symbol of the unpredictable secular vicissitudes of life; a game of optimism versus frustration; a supreme test of patience; an eternal reminder of Robert the Bruce learning to try, try and try again from the spider spinning his web. They were about biological and psychological survival. When you’re recovering from any life-changing illness or injury, you will always land on the snakes more often than you encounter the ladders. You also learn, painfully, that the snakes never go away. Happily, though, neither do the ladders.

  Another thing that never went away was the support of people who read my writings in the paper. They were the ultimate kind-hearted strangers, good Samaritans who stopped their own busy lives to drop me words of encouragement. Here was muscular christianity with a small c, Kindness with a big K, the things I very much identified with. Some of them were also delightfully eccentric. They knitted me bedsocks, sent me stuffed hedgehogs, silk pillowcases, sweet pea seeds, hand-made jewellery, offered me shares in racehorses, wanted to take me skiing, carried my picture up mountains, ran marathons with my initials tacked on their headband. Potters potted mugs with lots of handles on them for my crocked fingers. One emeritus professor in his nineties, an Oxbridge scientist, sent me a hand-built prototype of an electrical stimulation invention which he believed, if I connected my fingertips to it, would resolve my issues.

  Someone in particular shines a light from that time, someone called Judith from Twickenham. She had very distinctive handwriting. I knew no more of her than that. While I was in hospital, she sent to the spinal unit spectacular boxes of chocolates – I mean truly spectacular, like nothing I or anyone else had seen before. They were Hotel Chocolat extravaganzas, at a time when the brand was young and little known in the UK; display boxes a metre long filled with handmade sweets of a beauty and intricacy akin to an art form. We kept the boxes in the occupational therapy kitchen and they were brought out every day for hand therapy: it became part of the tetraplegic daily goal-setting, to be able to reach, remove and place a chocolate in our mouths.

  Over the months, Judith sent three of these monstrous treats. Later, when I had returned home, she located me via head office, and another box arrived, again with no sender’s address. Frustrated at being unable to contact her, I put a mention of her gifts in one of my columns. Thank you, I said, to Judith from Twickenham for your mysterious ability to track me down wherever I am. And then filed the memory of her kindness, and the unusual fun and pleasure it had brought, to the back of my brain.

  Fast-forward a couple of years, and I was invited to the Cheltenham book festival, where I was interviewed by Libby Purves. Afterwards, a small number of the audience stayed behind to speak to me. As I chatted to the well-wishers in the darkening twilight outside the tent, I was aware of a tall man in a tweed jacket hovering at the back of the group. Eventually, only he remained: a stooped, distinguished, older man, hesitant, shy.

  ‘Hallo,’ I said.

  ‘Er, yes,’ he said, shaking my hand. ‘My wife, such a great fan of yours. Er, you might remember … Judith from Twickenham …’

  ‘Gosh yes,’ I cried, with a rush of enthusiasm. ‘Of course I remember!’ I told him how much the gifts had meant, how much fun we had had with them, how I had longed to get in touch to thank her properly. ‘I even tried to find you on the voters’ register in Twickenham.’

  ‘We moved to this part of the world.’

  ‘OK, well, I’m so glad you’re here. She has been so kind.’

  ‘Ah, but you did mention her in one of your pieces. That meant so much to her. She was thrilled to know they had reached you and been enjoyed.’

  It was almost dark under the tent awning. I beamed up at him. Brightly looked around.

  ‘Where? … Is she? … Was she at the event …?’

  ‘Oh no. You see, she died a few months ago. But she would have loved to be here.’

  ‘Oh …’ I was silenced. I reached out and took his hand, saw in him the grief and the stoop of loneliness, the unquantifiable yearning. There were tears in his eyes. I didn’t know what to say, in that shared moment of intense grief. My companions and the organisers, who had been chatting behind me, were restless to be gone and interrupted our conversation.

  ‘Yes, well, mustn’t keep you,’ he said. ‘It has meant so much to meet you. Goodbye.’

  And that is my memory of him, alone and stooped, walking away into the gloom.

  ‘Thank you,’ I called after him. ‘Thank you for coming to talk to me.’ And in that encounter, I realised, lay all the sweetness and sorrow of life.

  CHAPTER TEN

  Just Like a Woman

&nbs
p; I tell you, hopeless grief is passionless.

  Elizabeth BarrEtt Browning

  The tale was well rehearsed but unfathomable; a riddle I repeatedly tackled but couldn’t solve. The body was lost, but where was the woman inside? Was I a woman any more? I looked for her in the mirror, but this, I soon realised, was the special corner of hell reserved for me and the likes of me. Some days, I would spend a long time there searching. Gripping the hand basin in my bathroom, I pulled myself forward, trying to recognise the folded-up creature with the haunted face, peering over the bottom of the frame. You’re still not there, Mel. You’re not you. And then the killer question – Who’s gonna love you now, huh?

  I had changed so much. My nose had been broken and the right eye, heavily bruised by the impact, was subtly rearranged, asymmetrical, the eyelid drooped. There was now a macular distortion on the retina; that eye saw a bump in straight lines. On the plus side I didn’t need glasses for driving or watching TV any more. There was a permanent white scar on my right upper lip, split when I hit the ground, and on my throat a four-inch red line, a cat’s scratch, where they had plated the cervical vertebrae. Trauma ages the face less than subtly: pain accentuates the lines. It was as if while suffering roughens you inside, coarse sandpaper on the soul, it scours you outside just as cruelly. When I cried, baggily and often, I looked like a Shar-Pei puppy, features folding so intensely into themselves that often, as they say in Glasgow, I looked like someone who had been sat on when their face was still hot.

  Once, years before, I interviewed a beauty queen, who arrived in tears because she’d bumped her car, and I remember watching, enthralled, as the tears welled up and tipped slowly and sensuously down her peachy cheeks. My God, I thought enviously, what skill, to look gorgeous even when you weep. I was her polar opposite. Besides, my skin felt dry and harsh – I hadn’t worn moisturiser since I fell to earth, for the simple reason that it was too frustrating a) to get the lid off the cream and b) to apply it with clawed and crooked fingers. The absence of that ritual felt like the removal of a basic woman’s right – soothing cool cream across your face, with supple gentle fingers. My skin yearned and itched when I saw face cream adverts for L’Oréal, Clinique, Clarins, Nivea, but daubing cream on clumsily with my knuckles didn’t assuage it.

  In the early days, lying in hospital, when all that mattered was survival, I had amused myself satirising the shouty puffs on the front of a typical woman’s magazine. The stuff women agonise about. How to lose two stone in two months without trying! Get your man to pay you more attention overnight! Grow long, luscious fingernails! Banish bingo wings for ever! Get a figure like the stars! Slim down those chunky runners’ calves! Forget expensive colonic irrigation – try the finger of Rosebud the NHS nurse! Put your femininity to the test! It’s easy, girls. All you have to do is break your neck. So much superficial angst, irrelevant before, had become vanishingly trivial. But beneath the flippancy, that dark question lurked, ever-present: Who’s gonna love you now? And I would get a flashback to the helicopter, Dishy Daz the winchman leaning over me, and my fleeting certainty of sexual bereavement. The knowledge that no man would ever again lean in desire.

  In happier days. Like Harris Wittels, Dave knew every woman had a twenty per cent crush on him.

  Quite early on, certainly within the first few months, I initiated The Conversation with my husband. He was a sexy man; I was to all intents and purposes a dead body. Being best friends suddenly didn’t seem to be quite the glue it once was. Besides, if you were going to pick a caregiver, some saintly, practical, selfless, patient man who would devote himself to a terribly disabled wife, you would not pick Dave. In a million years, you wouldn’t pick him. Dave was loyal, shrewd and wise and he adored me, but he was also the ultimate entertainer and seducer whose greatest skill was making people laugh; an irresponsible, irresistible, incorrigible, flirtatious, harum-scarum, hard-drinking man’s man and ladies’ man who shied away from sickness, difficult stuff and sacrifice. I’m sure he thought, like the comedian Harris Wittels, that every woman had a twenty per cent crush on him, and he was probably right. He really didn’t cope with negative things well. Perhaps I had read Jonathon Livingston Seagull too many times as an impressionable teenager, but I always reckoned that if you loved someone, you set them free. In my particular circumstances – well, it seemed only polite. Courtesy of my mother, I had a certain amount of sacrifice in my DNA.

  ‘Listen,’ I said. ‘You know what I’m going to say. I think you should leave. I think we should, in the gentlest, most loving way, agree to split. This wasn’t in the contract you signed up for. I’m not a woman any more, or a wife. You’ll never cope with this.’

  ‘Don’t be so bloody stupid.’

  ‘Please. You didn’t ask for this. It’s only fair you go, find a life with someone else; we can sell up, each buy a house.’

  ‘Don’t be ridiculous, you’re stuck with me, just as long as you don’t mind me going to the pub. I’m going nowhere.’

  And he never has, instead evolving in a way nobody who knew him before could ever have imagined.

  I found myself in a classic situation. The writer Susan Lonsdale speaks of the common assumption that women with disabilities are asexual, both as viewed by others, and as they regard themselves. Women are haunted by the loss of self-images from the past and concerned about the person they have become. Women are socially identified with their bodies. ‘A woman is taught very early on to be conscious of her body shape, body size, body smell, her hair (including where it should be as well as where it shouldn’t be) and her facial features – in short, of her physical appearance. The diet and fashion industry reinforces this concern for much of a woman’s life, as a teenager and an adult.’ This ‘norm of attractiveness’ is precisely the thing you lose when you become disabled, and the void is filled by negative self-images. Lonsdale identifies four factors which foster this, and unsurprisingly one is the negative perception of the outside world. People look at you in pity, if they look at you at all. Attractive young women get it worst – the sentiment, often thought, embarrassingly often blurted out by the unthinking: ‘You’re too pretty to be in a wheelchair.’ As if, somehow, being disabled equates with ugly. As if only less attractive people aren’t wasted when they are disabled.

  My unconscious prejudice was the same, even from the disabled side of the divide. When I tried to associate the concept of beauty with disability, it was a dead end. This was a place where my intellectual compass failed. I had many reasons to live, but the secret thrill of looking good, of being admired, of being a player in the great competitive game of physical attraction, with all its hurts and joys, was no longer one of them. I genuinely could not find any beauty in my body in my chair; only loss. When I made an effort with mascara and a pretty scarf, friends would say gamely, ‘You look lovely today’, because they were kind and wanted to encourage me to feel good. ‘You’re still you inside.’ But they knew and I knew and they knew I knew. When I looked, I saw a shipwreck. A wheelchair first, and then that strange, still person in it, her dowager’s hump growing, her middle settling. That wasn’t me. But it was. And my appearance and my helplessness combined were so asexy, unsexy, that I cringed.

  Personal vanity is a curious thing. In the past, genuinely, I had not spent much time on my appearance. I spent money on horses, not on clothes. Once, I contemplated cosmetic Botox for a deep line between my eyebrows where I’d been scarred by an encounter with a swinging horse’s head, but had told myself not to be so silly; now, my face addled with suffering, I received cynicism-free NHS Botox to relax my paralysed fingers and legs. Never burdened by classic beauty, I was always aware that my sexual identity resided in my sense of fun, my dynamism. Movement. Get-up-and-go. I made the best of my appearance by smiling a lot, but most of all by keeping moving. Stand tall, talk with your hands and arms, address tall men eye to eye, drop a hip to speak to smaller men. Don’t get trapped by bores. Don’t stay too long in one place. Step out one long leg and sw
ing tactfully to another conversation. Let the energy swirl behind me. That poignant old mix of insecurity, insouciance, bravado which, as I grew older, morphed into confidence and independence, a lack of reliance on men.

  Gone too was sensuality and sexual movement. Never mind spontaneity; when your limbs do not work and you cannot feel, you can hardly make lunch, let alone love. Sometimes, after my accident, Dave admitted that he would see a couple walking in the street together, hand in hand, laughing, bumping shoulders like mates, and he would feel a terrible pang. Movement was central to everything, repeating circles of cause and effect. Attraction needed movement. Movement needed clothes. Attraction needed the right clothes. Sex needed movement. Clothes needed movement. Without movement, the link broke; the equation failed. What then did a woman consist of?

  In my stillness, in the vacuum left where movement used to be, I analysed how people behaved in front of mirrors. Every morning, you dressed your identity, picking clothes in an act of happy self-seduction; an age-old ritual in search of improvement, beauty, confidence and disguise. You put on the items which you hoped took you from what you were to what you would like to be. In moving, your identity was found – uncovered by your side step, your hair flick, your opening arms and your fluid, private twist in front of the mirror. The bond you had with your own reflection was lifelong and far more intimate than that with a lover. That autopilot drill: front view, then side profile, then the glance over the shoulder for as much of a back view as possible. Finally, the twirl back round on the heels, hair flick, chin raise – and the glimpse of yourself as you wanted to be seen. My relationship with the mirror used to be brief and fast. Sometimes just in order to say, Yes, I still exist. But most times, for speedy reassurance: hair OK; mascara unsmudged; damn, these boots are gorgeous; quick twirl; no dandruff; OK, that’ll do, good to go.