The World I Fell Out Of

by Melanie Reid

  It was housed in a clear bag glued to my skin. I lifted the bedsheet and sneaked glances at it, watching for signs of life. Occasionally, it burped dreamily at me from behind the plastic, just like a sea creature. That, I realised in slow wonderment, was what in a former life was once a fart. But what was it like, that former, healthy, thoughtless life? I could barely remember it now. Two days after the colostomy operation, I was shattered, perhaps justifiably after two major operations. My body was so battered I felt at times like giving up control and letting it drift completely into the hands of others. Stop trying. How tempting that was. Everything hurt. The orthopaedic physios got me standing, weight-bearing, both knees straight, both feet flat on the floor, but the pain was such I only lasted a minute, then maybe another twenty seconds, before the grey mist and the nausea swirled in.

  I felt it was a victory to have managed that much, however, and perversely, according to the gospel of Pollyanna, I took some comfort from the fact I was feeling pain. The nerves were most certainly not dead. Every day came tiny improvements and the walrus was taking its leave, my thigh shrinking back to ordinary size. The wound ached, the knee rolled inward, and the pelvis was like piano wire, but the agony receded. By now I was on a new learning curve: visits from stoma nurses to give me lessons in how to manage my new acquisition. Happily my damaged fingers could do it. My stomach resembled the Pompidou Centre, all my vital service ducts down the outside of the body.

  Nobody lingers long in the modern hyper-managed NHS, where beds are so precious. Only the old ladies with broken hips log-jammed. Some were operated on but lapsed into confusion from the shock and an inevitable urinary infection, and you could see them starting to slip away. Most were waiting for beds in care homes. Some would never stand again; never return to their own homes; within a few months a horribly high proportion would die in hospital or in a care home. One woman in her nineties, in the bed diagonally opposite me, had the imperiousness of a retired academic, or a former headmistress when she arrived. Her broken hip had initially been misdiagnosed: such was her tenacity, her scorching resilience, that she had been dragging herself around her flat for a week before she had eventually convinced them something was seriously wrong. Her desire to live was magnificent: she gazed around like a hawk, listening to conversations, tidying her possessions on the bedside table, establishing control in her new settings.

  She overheard me explaining yet again through gritted teeth to a new physiotherapist how I was already a tetraplegic from falling off a horse, and yes, I’d fallen off again, but I was determined to keep walking.

  ‘Are you the writer Melanie?’ she called, crisply, after the physio had gone.

  ‘Er, yes,’ I said, embarrassed. ‘Probably.’

  ‘I read your articles.’

  ‘Thank you,’ I said, for want of anything else.

  ‘You’ve fallen off another horse, then?’

  However I tried to explain it, it sounded more unconvincing every time.

  She appraised me with fierce eyes, and talked no more. Shortly after that she was taken away to be operated on. The next day, she lay, hardly visible under the blankets, a lost soul, deflated, demented, passive, her flame snuffed out by the ordeal and a urinary infection. Later that week I wheeled to her bedside and tried to talk to her, but she was just a shell. Just another statistic. I have no idea what happened to her, but it makes me sad to think.

  To see it first hand, to share the distress and confusion of these old ladies through the nights, and witness the difficulties the staff had nursing them, was a deeply humbling experience. The reality of the NHS, though, is that entertainment is never far away. On my ward the only other patient under seventy-five apart from me was a woman my own age who was by her own admission a frequent in-patient. She was in constant need of drink and fags. She was being kept in for observation because she was suffering bad intestinal pain, but had been told she must stay in bed and shouldn’t go out for a smoke. She didn’t like that.

  ‘This place is doing ma fucking head in,’ she cried repeatedly.

  Mine too, I thought, and yet again we only had our lifestyle choices to blame. We take our risks in different ways. Later, after she’d sneaked off for a fag and her son smuggled her in some alcohol, she was more content. As everyone else in our bit of the ward was away with the fairies because of urinary infections, she turned her attention to me.

  ‘Ah’m fucking bored, hen. Have you got any magazines to read?’

  I gave her all I had, which was, genuinely, a copy of a Sunday supplement filled with Gwyneth Paltrow recipes for a detox lifestyle, mung bean soup, balsamic-macerated berries, quinoa granola and spelt flour. My neighbour didn’t talk to me much after that.

  Soon after that I went home. My pelvis and lower back had seized up and now, morphine free, I was in constant pain; a new kind this, buzzing red hot from the waist down with a mixture of neurological spite and muscular-skeletal venom. Every time I tried to move I could feel one bit grinding against another; my body was like some decrepit piece of machine left to rust and now far beyond the reaches of WD-40. I felt very sorry for myself.

  Pollyanna had had a bruising time, but her small voice endured. Just about.

  CHAPTER FOURTEEN

  Am I Human or am I Dancer?

  I’m out of bed and dressed – what more do you want?

  Banksy graffiti

  It was going to be a long road back. Even Robert the Bruce’s spider, I suspect, would have said, Bugger this for a game of soldiers, and gone off to find somewhere easier to build a web. ‘Your body has endured two major assaults. Write off at least a year,’ said one of my consultants. Everyone else agreed: Please give your body time; it’s been through a lot and it’s understandably mangled.

  Spinal injury started to feel too big an enemy; it seemed determined to break me. It or me. A never-ending tie-break in the final set and I was facing yet another advantage point against me. A prison sentence with no hope of parole. The expression ‘life-changing injuries’ was the discreet euphemism used when someone had suffered brain injuries or broken their spine. What I was only beginning to grasp was that life-changing injuries led to further complications which changed your life even more. Ill health created more ill health. For every action there was a consequence. For all that I was paralysed and supposed to be unfeeling, the skin around the hip scar ached like bad toothache. At the colostomy site my tummy bulged, lopsided, my body out of alignment like a beaten-up teddy bear. Plus, the physiotherapists’ adage that there was a 4:1 ratio of muscle loss to length of layoff haunted me. Every one day I failed to do any walking, however minimal, what pitiful muscles I had were wasting and would take four times as long to return. I started to wake in the middle of the night and convince myself that I was dying of all kinds of hidden nasties. Maybe other things had gone wrong – with my luck, they would, wouldn’t they? – and I would be dead by morning. But because I was paralysed I couldn’t tell and I would just whimper my last in the dark. I began to live in constant fear about my health and my brain grew tired with worrying. I was certainly losing my grip on my assumed identity, Mrs Happy Smiley Make-the-Best-of-it Tetraplegic. I was sick of being disabled and angry that I couldn’t find a way out.

  Much of this I had to internalise. Dave, poor guy, was supportive and non-judgemental. What he told his mates in the pub may have been different. He did not get angry with me; and my reciprocal duty, I felt, was to pretend that I was cheerful and getting better speedily. So I hid my sense of hopelessness. I said ‘I’m fine’ a lot. I was getting good at damage limitation where my family were concerned. Hopefully I managed to conceal the worst of it from Dougie too – I broke the news of the fall to him in a phone call after the operation, making light of it, playing down the pain, emphasising the black humour, trying to spare him worry. Certainly he didn’t have to make any mercy dashes to hospital. He was facing his finals; he had enough on his plate, but he was immensely kind and in that heart-wrenching parent–child role-rever
sal, he made me promise to phone him and talk stuff through, any time at all I needed to, if I was ever feeling really miserable.

  Helen Gray, the wise and warm district nurse who had supported me ever since my initial accident, and a woman who had become vital to me, gave me a stiff talking-to. After she’d got me into my chair in the bedroom one morning, following my monthly catheter change, everything got the better of me and I started howling. I couldn’t do this in front of my family. She hugged me and let me sob on her shoulder. Then she sat on the corner of the bed and appraised me.

  ‘Take the extra-strong pain relief. Stop imagining stuff. Give yourself time. Most of all, stop dwelling on the unfairness of it all.’

  She opened her hands, palms up.

  ‘We are where we are,’ she said.

  Of all the truisms of healthcare, I thought that was the best. It helped me. I wondered in passing how often she had said it to palliative care patients. What had happened with Nelly and the events that followed had really crushed me, dealt a much bigger psychological blow than I admitted to anyone. Out of loyalty to Sara and Riding for the Disabled, and to a certain extent because of my own embarrassment, I could not write about what had really happened in my newspaper column. I made oblique mention of a fall – after all, as I now knew well, falls came in a wide and diverse variety. Only family and close friends knew the truth. I had seen how the real story would be perceived by the outside world and I felt stupid and defeated enough.

  For the first time, I started to acknowledge that everything which had fuelled me – all the fighting and the physiotherapy, the perseverance and defiance – was maybe a waste of time. Up until that point, I had stubbornly proceeded on the basis that I was going to regain more function, that my trajectory would be upwards, that my health would improve. This positivity was the strand that linked everything. Every time I had an operation, I used to quiz the doctors about whether it was reversible. The procedure to drill the hole into my bladder. The colostomy. ‘Yes, yes,’ they said, ‘these things can all be reversed.’ My bluff had been thumped out of me when I hit the floor of the riding school. Whereas before I had half-believed my own publicity and bluster, now I had to recognise that I was very vulnerable, and moving deeper into the permanence of disability. A new feeling of isolation ambushed me in private moments. There were occasions when I wept with the intensity of a child lost in the supermarket, crying for my mother to come back and make it all OK again. Like Tolstoy’s Ivan Ilyich, my misery made me regress to the place where I could be petted and pitied like a child.

  Hope faltered. Reversible operations would never be reversed. When I pulled apart my clothing, top from bottom, I looked down at an abdomen which was now a fully occupied waste disposal area. An industrial depot. Close to my left hip, the sea anemone of my bowel, stitched to the surface, mobile behind plastic. To the middle, the cursed catheter tube, gateway to a vital organ and repeated infection. To the right, a large patch of Tegaderm, transparent sticky plastic which stuck the tube to my skin and guided it towards the drainage bag on my thigh. (Made, I had been fascinated to discover, by 3M, the same people who make Post-its; I mean, who knew?) All in all, a less than alluring landscape. Who’s gonna love you now, huh? I mean, really?

  Who’s gonna to love you now? My abdomen was a crowded industrial area. (John Callahan)

  An email pen pal, Jeannie in Australia, cheered me up with admirable brevity. ‘Isn’t it marvellous how brave we can be when we really don’t have any choice apart from topping ourselves?’ It is indeed.

  It took me a couple of months to understand how the colostomy had revolutionised my life, handing power over my bowels back to me. I could manage the functions of my own body, sitting fully dressed in my chair. I would have to wear stretchy-waisted trousers for the rest of time, but it was a price worth paying. Gone was the unbelievable torture of hauling myself onto a shower chair every morning and sitting over the loo; gone too were the bowel meltdowns which had been making my life unliveable and turning me into a hermit. Now I could, with help, simply wash in bed every morning; I was liberated to travel to places overnight without taking a shower chair and a special carer: and I could stay in accommodation with less than perfect disabled facilities. Not only had my misery quotient been slashed, but my life had to some degree been returned to me.

  A certain pattern descends when you come as an adult to disability. You have a problem, you learn how to manage it. For as long as things proceed on an even keel, that’s fine. You become a little complacent and relax a bit. Then more things go wrong, only in a different way, and you’re forced to raise your game and learn from scratch how to handle them as well. A forced learning curve on the graph, always lifting away from the flat line of normality. Thus it was one day at the hairdressers. Which was the bigger torture: getting my hair done or leaving it dingy? Hairdressing salons uniformly had fixed seats in front of their wash basins, all of them too low for me to transfer onto, but in order to cheer myself up with some blonde highlights, I had to get my hair washed on the premises. One place where a friend went had an electric seat for arthritic elderly ladies, which slid out and raised up in front of the basin. There I ventured and, after the laborious procedure of getting foils put in and waiting for the dye to work, I had to transfer from my wheelchair to the wash basin. But the seat was not ideal, the nylon cape I was wearing caught under me and trapped me; my hands slipped and I flailed and tipped backwards. As happened when I got flustered, my body went into spasm, and my legs stuck straight out. Alive but helpless, I was six feet of rigor mortis on the brink of sliding onto the floor – and without company because Dave had left me at the salon. He knew I’d be fine. Ha. But there I was, on my back, half off a chair, shrouded in black nylon, and blinded by great folds of silver paper hanging over my face. The young assistant tasked to wash my hair stood back, eyeing me with horror, unsure what to do.

  ‘My nan manages that seat OK,’ she said helpfully.

  Other clients in the salon averted their eyes to the circus but watched covertly in the mirrors.

  ‘Bend up my knees so my feet are on the floor,’ I pleaded. She was just a kid; she didn’t want to touch me.

  ‘Now stand there and block my knees.’

  In situations of obvious helplessness, you change the atmosphere in a room. You’re embarrassed barking orders. Normal people are equally embarrassed, anxious, unsure what to do. You are making them feel uncomfortable. You are exerting a horrid kind of power over them. They wish you’d go away. People with mental ill health, behaving oddly, create the same aura. I thrashed around a bit more until I managed to sit up and balance. She washed my hair and I was able to transfer without incident back into my chair, anxiety levels at maximum. I thought I’d be fine now, but I wasn’t. Back in front of the mirror, I was assailed by the pervasive smell of poo. I hitched up the cape surreptitiously and peeked. The miracle of the stoma bag, the thing that had changed my life, had failed. Come unstuck. I hadn’t realised such a thing could happen. But there I was, with wet hair, and quantities of nervous poo spilling out of my stomach under my clothes.

  What does one do in such circumstances? Where lies shelter, or a shred of dignity? They didn’t teach me about this in hospital. The salon did not have a disabled toilet. Desperate, desolate, mortified – the smell was intense – I excused myself temporarily and managed to get myself out of the shop and onto the pavement. I began to wheel back to the car. I phoned Dave, who fortunately was not far away, and he fetched a bucket of water from the salon. Cold, in the mop bucket, because he’s a man. We reached the car and I huddled into the gap behind the open driver’s door, wishing the earth would swallow up me and my lapful of poo. It was at that point, in the timing of a comic script, that a tall distinguished-looking man in an overcoat and a hat, who had been hovering, approached us.

  ‘Excuse me,’ he said, coming right up to the door.

  I looked up at him, cowering like a seal pup.

  ‘Are you Melanie Reid?’


  ‘Er, yes,’ I said, jaw clenched in despair.

  ‘Forgive me.’ Oh no – he was leaning over the door. ‘I just wanted to say how much I admire your writing and your tenacity.’

  As my mother would have said, always be polite. Courtesy under extreme duress. ‘Er, thanks so much,’ I blurted. ‘Really kind of you … er …’ And forced an embarrassed, pleading smile. Thinking, Please go, please, please, please.

  He paused there, as if hoping I would say more. Maybe he read the desperation on my face. He took his leave.

  Despite the situation yet to be dealt with, when he was out of earshot we burst into mildly hysterical laughter.

  ‘Now that,’ said Dave, ‘is what you call fucking incredible timing.’

  Huddled in the lee of the car door, using the cold water, I did the best I could to clean myself up, sluicing water over my bottom half. It reminded me of sluicing down the legs of a horse after a competition, or after a sweaty journey in a lorry. Like a cub scout going wild camping for the first time, I did an al fresco change of stoma bag, then loaded my lap with jackets from the car, and returned, apologising, to the hairdressers to get my hair cut. The easier option would have been to go home but I couldn’t bear to have come this far, gone through such trauma, and fail in my goal. Besides, by now the germs would be washed everywhere, reinfecting me; there was nothing I could do about that, either. A certain peace comes with resignation.