The World I Fell Out Of

by Melanie Reid

  Until you live in a wheelchair, you never realise just how little you can do with your hands if you want to move at the same time. Both hands are needed to propel and steer using the push rims on the wheels; and those rims are only an inch off the floor and half an inch from the outside wall of the tyre. Your hands are only ever as clean as the rims. And if you are cursed, and your push rims get mucky – on the yuck scale, dog turds are the worst, closely followed by syrup or cooking oil – your hands are immediately contaminated too. Then, if you can’t call on anyone for help, you must maneouvre into a position at the sink where you can wash – first your hands, then, very laboriously, leaning out as if in a racing dinghy, the rims. You will think they’re clean, but they won’t be, for there will be some on the spokes, or you will surely have missed a bit. So you must wipe them again. Only then can you move again. On a good day this can take up to forty-five minutes. And it is deeply tedious.

  Your hands, in effect, replace your feet: the palms grow thick and calloused from pushing, mimicking the skin on your heels. Your shoulders hunch with the lifting, leaning and pushing, and after a while your neck bows and thickens, your upper body dowager-humps, adapting to a job it was not designed to do. Role-reversed, the top half of your body becomes the propulsion, the engine, rather than the decorative bit that used to float along admiring the view. Meanwhile, your world shrinks indescribably, as if overnight you have been released onto the pages of The Borrowers. The only things in easy reach are those at shoulder height or lower, and no more than half an arm’s length away, for your chair will not allow you any closer. If you work at able-bodied heights – the kitchen worktop, for instance – you are always operating your arms above shoulder height, which is exhausting even for the able-bodied. Cooking was a clumsy process, chin resting on the bar of the Aga, watching from close up the chemical reaction of heat and food in the frying pan, elbow high above my head as I stirred blind, dropping and clattering and breaking dishes. I tried, several times, to get Dave to sit in a wheelchair and see how difficult it was to perform the most simple tasks. He refused. There is only so much reality a man can take. He did not want to experience my struggle. I have heard of professional three-day event riders who are equally averse to sampling life in a wheelchair. Perhaps it is superstition. Or perhaps they just don’t want to know, to dwell on the consequences of the dangers of their sport.

  Independent, mostly, during the day, I needed help at both ends of it. I could not get up, dress or wash myself, nor, at night, could I lift my lower legs onto the bed. I battled the need for night-time assistance for a long time: and there were a few brief months when I managed, by dint of a transfer board, a sliding sheet, and a horrendous amount of strain on my shoulders, to get into bed by myself. I would use a transfer board topped with a sliding sheet – a loop of slippy nylon – to move my backside from my chair to the end of the mattress and then lean backwards, hauling myself up the bed towards the pillow on my elbows. It always felt precarious, transferring alone, and the strain on my arms was too much, as was the further rolling and pushing required to take off a pair of leggings while I was lying on them. I timed myself: from leaving the chair to pulling over the duvet took an hour. Within two years, as my shoulders wore out, I gave up the ordeal and always sought help from someone. There were certain elements to my life where it was foolish to persist in being independent – it gobbled valuable time and energy better devoted to other things.

  At night, it became Dave’s chore to throw my lower legs onto the bed and pull off my leggings for me, the least sensual of operations. We both would much rather have it that way than be visited by carers coming in the evening. Mornings were bad enough: we were learning the reality of loss of privacy which serious disability brings. Privacy, like health, was another thing you took utterly for granted until it was taken away from you. Now, every day, a succession of entirely pleasant semi-strangers trooped into the house. First the district nurse, to do my bowels, then the council carers to shower me. It was essential, but it felt like an invasion.

  When you are very disabled, a real tension exists between dependence and a loss of privacy. The two needs tug against each other; flourish alongside each other; you suffer both simultaneously. The loss of privacy is often the more profound. I had grown accustomed to being reliant on people I hardly knew to wash, dress and roll me. I could, without any embarrassment, ask these women to peer at my genitals and tell me if they looked sore, because I couldn’t feel anything, and question whether they had dried between my toes as well as I would have done. Our bedroom, once a private place, was now a functional, public space, shelves stacked with medical supplies. For Dave, Mr Territorial, someone who didn’t like to be organised, the sacrifice of his home was considerable and difficult. Not only did it impose set times for him to get up, but it imposed outside expectations on him. Spontaneity was cancelled. Our house was not big enough to allow him to retreat. Privacy denied is wearying, draining, like loss of freedom. Later I heard about the case of a young ex-serviceman, dreadfully disabled in Afghanistan, who needed someone with him twenty-four hours a day. The fact he could never have private time, on top of every other indignity, depressed him. The charity Canine Partners paired him up with a dog which was trained, on his command, to press a button and summon help. It may seem nothing to an able-bodied person, but it was huge for him: it meant he could spend time alone in a room every day with his thoughts. Just him and his dog. Dave and I understood that so well now.

  My old domain had slipped out of my control, because of my physical incapacity. The stables, barn, fields, garden – all outside territory became impassable. Inside I pursued the same small, well-wheeled track from bathroom to bed to kettle to kitchen table. At the bottom of the tiny, narrow stairs I would look up and find my memories of the rooms upstairs fading, floating away to join childhood memories of places I had loved. Daily, I tormented myself, trying to push back the boundaries, to find home again, that place where everything would be all right and all would end well. Home: that sanctuary which existed for me, forever framed in the lovely lullaby ‘Morningtown Ride’ by The Seekers, which my sister had sung to me when I was a little girl on the back seat of the family car, where we rocked and rode with each other, bound for that elusive safe haven out along the bay.

  Music of any kind still had the capacity to disarm me emotionally. But that tune, on the achingly rare times I caught it on the radio, made me sob. It expressed the search for somewhere exquisitely, intangibly, irreplaceably, precious. You always knew Morningtown was a fantasy place – but now you knew, with crushing certainty, that you were never going to find it.

  Like a wounded animal, I created a lair mentality. I existed in the rooms of the house which I could negotiate, and fed upon the view from the windows, leaning from my chair to try and see more. From the living room I inspected the uneaten grass in the field behind the house, fantasising that one day I’d see the big handsome chestnut gelding idling by, giraffe-necked, stealing the odd tasty shrub branch from the garden with prehensile lips, like he used to do. And in his shadow the pony, eyes bulging with guile, muzzled to prevent death from over-eating, reaching through the fence to tease at even tastier morsels. If I could just catch a glimpse of them, even in my peripheral vision, maybe it would be proof this was all a bad dream and I’d wake up and everything would be all right again. Maybe they were there, Terry and the pony, maybe they were just a little further along the fence and I couldn’t see them.

  The whimsy reminded me of a time when I was very small and fascinated by mirrors. My siblings Andrew and Lindsay, thirteen and eleven years my senior, told me that that mirrors were magic windows. A family of magic people lived behind the glass, and when we came along they jumped out, dressed as us, and imitated us. ‘If you stand at the edge of the mirror, and you pop your head round very, very quickly,’ said my tormentors, ‘you’ll catch them unawares. They’ll be doing something else.’ Thus I would flatten myself against the wall beside the huge gilt-fram
ed mirror in the hall, darting my head round the frame periodically, to try and outsmart the child who was pretending to be me. Andrew and Lindsay loved the game; it stopped their baby sister pestering them. Now I was playing magic mirrors again, just a different version – I peeked through windows for the pictures they had framed eighteen months ago. They were never there. Or maybe, just as when I was four, I simply wasn’t fast enough.

  Emotionally, I felt as if I had been born without skin. Belongings assumed a loaded significance. About a year before my accident I had bought my first dressage saddle, a gorgeous thing, elegant and slim, evolved from centuries of the art of high equitation and the interface between rider and horse’s body. Dressage saddles are timeless classics of haute ecole – as achingly well designed and gracious as any haute couture from Chanel or Balenciaga; I had always wanted one but never been able to afford it. It was the equivalent for another woman of buying a Gucci coat or a Dolce & Gabbana handbag; a totem of desire and self-reward. There comes the tipping point where every girl says to herself, I’m getting old, I deserve one. In the end, I bought a beautiful second-hand saddle, using my credit card. When I was in hospital Dave, God love him, paid it off in instalments and lectured me like a Presbyterian minister every time he sent off a cheque.

  It took months at home before I was strong enough to venture down to the barn where I had kept the horses – largely untouched, but now with the feel of the Mary Celeste. Dave came with me; we were both pinched with tension. The night rug which I had slung off my horse before I went off that fateful morning was still doubled neatly over a loose-box door, but now thick with dust. I couldn’t bear to go near my tack room: I knew the smell would, like hearing music, strip away my defences, but the urge to see and hold my saddle, to mourn a little, was too strong. I asked Dave to bring the saddle out to me and put it on my lap: an act of masochism, I suppose, but also an acknowledgement that I would have to start toughening up if I was to continue living here with the ghosts. When you’ve been around horses and their tack all your life – indeed, around anything: babies, dogs, tools – you handle those items with inner sight, an unconscious understanding and familiarity. Bridles assemble and disassemble in your hands in the same way as you plait hair or a craftswoman does her knitting. Saddles fit in your hands and arms, balance happily against your crooked hip. But my arms, of course, could no longer hold the weighty, unwieldy thing, my hands could no longer stroke its curves. Only my eyes could feast on the familiar and they were blind with tears. We retreated back inside and I yearned for that skin thickening to speed up.

  If my relationship with house and possessions had changed, then an even bigger revolution had taken place in my relationships with people. ‘The fidelity of our bodies is so basic that we never think of it – it is the certain grounds of our daily experience. Chronic illness is a betrayal of that fundamental trust,’ wrote Arthur Kleinman. That word ‘betrayal’ was key. I felt like a general whose soldiers had deserted en masse and left him naked on the hillside. Betrayed, I was discovering that a normally functioning mind and body are central to the reciprocity of everyday life. We look after ourselves, don’t we? We interact, we transact with each other, from positions of strength. From being a mistress of my universe, a giver of energy and assistance, now I was dependent, vulnerable to rejection; and I had to spend my days calculating the appropriateness of my demands on others when I could offer precisely nothing in return. I could offer only love, or friendship, or wages. How to get by without being a nag or a burden? If I expected too much, demanded too much, they might dislike me. This was an entirely new landscape to negotiate. Every time I opened my mouth a stream of supplication emerged. Could you … Would you … Please pass me … Sorry but I can’t reach … Help me … Oh, I’ve dropped … Continually, I assessed the size of my goodwill overdraft, drawing on other people’s kindness. I can’t ask Dave to do that as well … I’m not too uncomfortable, I won’t wake him to get him to move my legs – I’ll wait till the alarm goes off … Will my carer be upset if I ask her to … I wonder if my cleaner would mind …

  When the reciprocity of everyday life is unbalanced, especially in a culture which emphasises independence – and my family’s did, especially – then you feel insecure. It felt like a particularly cruel redundancy, taking away my self-worth. The most frustrating thing was my inability to slot back into my domestic role as the powerhouse, the doer of practical things for others. The mother lode; the family services industry. Don’t most women, even the most feminist of us, still fulfil this? One Sunday morning Dougie, stressed to his limits by exams but nevertheless taking time to visit me, dashed back to university on the other side of the country leaving his flat keys behind him; and Dave, also stressed or maybe just more blond, put £70 worth of petrol in a diesel car and was stranded elsewhere. Once, I would have solved their problems by teatime, jumping in a car to hand-deliver the keys, rescuing Dave on the way home. Miserably, I could only sit at home, take the phone calls and commiserate; I wasn’t even capable of posting the keys next-day delivery, because my hands weren’t good enough to tape up the package, were I even capable of getting to the post office.

  Later the same week poor Doug phoned me the evening before an exam, exhausted, cracking, with a blinding headache and no food in the flat but breakfast cereal. Poor guy had been through so much grief, and was trying so hard to catch up with his studies and do well. He needed Migraleve and a hot meal and never mind how far away he was, I needed to go to him. Any mother, bound by those universal tramlines of responsibility and indispensability, would have sprung into action. Because mothers don’t get sick. Dougie was by then twenty-one years old, but it didn’t change anything. Whatever I was doing, there was always a space reserved just for him. I was still his mum and he needed me. The accident did not take away the purity of that, but it limited its practicalities.

  He had written this poem about me when he was about eight.

  My mum is fun

  She rides her horse through bogs

  She runs up rivers and climbs through bushes

  She’s very messy

  And she’s SUCH a fussy speller

  But my mum is fun.

  After my accident, this big, sweet, happy-go-lucky young man had become a Trojan, lifting and maneouvring me as if I was a baby, trying to be uber-cheerful for my sake. Now, as he broke under the strain of all he carried, I could do so little in return. As a mother, your deepest fear is not being there for your child. There was no possible way for me to jump in a car and drive a mercy mission to him. Nothing to do except suppress my own emotion and parent him by phone, both of us torn pitifully between our old identities and the new. But my inability to fulfil my role filled me with melancholy. Later, when the inner Pollyanna had had the chance to reassert herself, it occurred to me that in fact things could have been worse: he might not have phoned; or I might have become tearful talking to him. Sometimes hearing a voice is enough.

  He scraped through the exam.

  Before my accident our house was a fairly blokey, low-maintenance one. Dave, Doug – by then, a student, on and off – and me. Band of Brothers stuff. They bonded over Platoon, Jarhead, The Guns of Navarone; from the next room I learnt the dialogue off by heart. Sometimes, to get their attention during a war film, I would dive onto my front through the living-room door, shouting Daka-daka-daka-daka-boom! and pretending to machine-gun them. I enjoyed the company of men. We took each other for granted and were secure, happy and busy doing our own thing. Women, however, will understand when I say that while I knew they adored me, it was only occasionally either of them really noticed that I was there. ‘Is there something different about you, Mum?’ after I wore a dress for the first time in years. ‘Are you upset about something, darling?’ after I wept for an hour at a sad film. And ‘Ew, that smells like fly spray’ (both of them) after I got a new perfume. However, in our new, post-nuclear-bomb world, we had to reconstruct roles and relationships afresh. From being a key member of the plat
oon, unifying them, pulling my weight, I became the desperately wounded, needy comrade the boys had to carry on their backs for the rest of their lives. Roles were thrown into reverse so quickly that you could hear the cogs crunching. At home, they took up watch over me. It took me a while to understand that when something terrible happens to you, it is often much more shattering for others to deal with. This is certainly so in the early stages when you are focused on survival while they must deal with the wider picture – without their main emotional prop to support them.

  Both practically and emotionally, Dave and Doug had stepped up to the plate heroically. They hid their distress and put their lives on hold. Terrible injury, unavoidably, destroyed the natural order of things and neutralised me as a mother to the extent that the most I could do for Doug was not to weep too much. I had to detach somewhat. Hide my distress from him. Hide it from everyone, even myself. If there was a pattern established, it was that we all acted like brave soldiers, camouflaging the very worst of our raw emotions from one another. I’m not sure that Band of Brothers stuff is to be recommended, post family trauma, and with hindsight I have often wondered if I should have taken the lead and handled it differently, encouraging more discussion and disclosure between us. But somehow at the time, in war, in crisis, the horror was all too immediately apparent and understood, and we adopted a less-than-contemplative survival strategy. On the occasions when I tried to get them to open up, they shrugged and squirmed and said, ‘Just got to get on with it.’ Expressing their feelings through practical action was much easier. Doing stuff to try and make it better. For Doug, it was a crash course in determination and maturity; through gritted teeth he managed to keep his studies going. Many would have given up. One day he came home as a surprise, lifted me into his beat-up little car and drove into the forest, where he put me in my chair and pushed me miles down the tracks, deep among the trees.