Читать книгу Never Say Die - Lynne Barrett-Lee - Страница 11

While it was clear that my walking days were definitely over, it was still important that my back had the best chance of healing straight and strong. This mattered not only for posture but also for balance; I had a whole body to lug through life with me but only half the usual amount of sensation. The first six weeks of my time in Rookwood, therefore, were spent lying flat in my bed while the bones in my back healed in the correct alignment, supported by the operative rods.

During this time, as had been the case since the day of the crash, I had a catheter. This was not, however, considered ideal. The plan was that during the last two weeks of this stage the catheter would be removed and ‘bladder training’ would be undertaken, in preparation for what would be the next stage of my rehabilitation: getting myself up into a wheelchair.

How this training was to be achieved was a mystery. How did you train something you couldn’t feel? The theory, as explained to me, was simple. A proportion of spinally injured people, apparently, had ‘reflex’ bladders; it was hoped that once the catheter was removed, mine—whether I could feel it or not—would somehow re-learn what to do. That, given time and training, it would hang on to its contents until I prompted it to do otherwise. The regime, based on this, was simple. I was to drink at least three litres of fluid a day, trust in the miracle of autonomic physiology, and then, on the hour, to ‘express’ it.

The idea made me feel like a heifer. I must drink, drink and drink—three litres is a LOT—and then, once a bed pan had been shoved underneath me, I must make contact with my bladder by means of rhythmically tapping my lower tummy below my belly button, on the hour, to kickstart the process of emptying.

This wasn’t the load of mystical hogwash it seemed (no crazy chanting or joss sticks were required) but something that apparently had its roots in proper science. The theory was that the physical stimulation that the tapping produced would, more often than not, be successful. Tap it, it seemed, and you could turn on the tap, and your expressing would be a success.

There are lots of things that make the average adolescent want to curl up and die. But for most teenage girls, already beset by insecurities about looks, hairstyles, choice of clothes, numbers of friends and so forth, any angst that came under the umbrella ‘bodily functions’ was perhaps the richest seam of trauma a girl could ever mine. Bodily functions were personal. Private. Going to the toilet, particularly the nonwee variety, just wasn’t, as I suspect was and is the case for most women, something one generally shared. Something no human would ever want to share. Indeed, much of my and my friends’ time was spent in convincing each other, particularly boys, that we didn’t have bodily functions at all. If—horror—we had to use a loo in a public place for ‘number 2s’ we would stuff half a roll of loo paper down first so no one could hear what we were doing. Not something most people bring up in conversation but something many of us did, and, I don’t doubt, many women still do today.

For me—no different from anyone else in most regards—this represented a stress of monumental proportions from the moment the reality sank in back in Neath. And sunk in, it had. By now, though I doubted I’d ever actually get used to the idea, I had at least become to some extent inured to the humiliation that dealing with my waste products involved. Both my bladder and bowels needed evacuating, clearly, and I had learned to switch off that part of my brain that, if left to consider my plight for too long, would leave me both desolate and scared. It was almost too much to take in the fact that while I could put stuff into my body, someone else, for the whole of the rest of my life, would have to deal with what came out of the other end.

There seemed no way of sugaring that particular pill but at least, should this ‘training’ prove successful, I would be able to wrest a modicum of control from the wee situation, and with it, a measure of dignity.

Dignity, understandably, was in pretty short supply on Ward Six. If the muck-on-a-truck cart could lower our spirits, the ‘crap cart’ (again, imaginatively named by the inmates) was a thing of rare grossness. Didn’t matter if there were visitors on the ward. It was always business as usual with the crap cart.

It was almost impossible to ignore. Its clanking and clattering soon became a familiar sound, which heralded two hours of purgatory.

Literal purgatory, every other day. Beginning at the far end of the male ward, curtains would begin to swish and suppositories would be administered. All this would happen to the accompaniment of the slap of rubber gloves, squirts of KY jelly, and a running commentary on who was going to be next. The plan was for the suppository to be left for about half an hour before the nurse in charge would return to check for a result.

If you had a visitor, this was always an extremely tense time. All you could pray was that things wouldn’t get moving until the cart came back to you again. That nothing would happen while your visitors were at your bedside, not even your nearest and dearest, and certainly not your friends.

Not my friends, definitely. Didn’t matter how much I loved them, or they me. They were fifteen-year-olds. Which meant, I didn’t doubt, that they were not averse to recounting the gory details to all and sundry in the schoolyard at break-time. At times like this, I felt there was no way I could ever face anyone in Port Talbot again.

And then the evacuations started. To this day, I’m not sure which odour was worse: that of the results of the business of evacuation (which grew in sickening intensity with every new patient ‘done’), or the cloying scent of the air fresheners so copiously sprayed to—ineffectually—try to mask the first. Indeed, the two, in a fine example of Pavlovian conditioning, have become so inextricably intermingled in my brain that I still have major trouble finding air-freshening sprays that don’t take me, queasily, straight back to Ward Six.

But at least we could do something about my bladder. In theory, at any rate. Except it turned out that, however many fine qualities my bladder possessed, being ‘reflex’ didn’t seem to be among them. Which meant that the two-week training programme that commenced at the end of my fourth week at Rookwood (in preparation for my being transferred to a wheelchair in week six) turned into three and then four and then five…In the end it was to mark the start of a five-month-long period in which urine loomed fearfully large in my life. And this after a period when it hadn’t loomed at all. Going to the loo had become an artefact from my old life, something I simply didn’t do any more. My wee was excreted into a small plastic bag that hung from a hook at the side of my bed, and I played no active part in it getting there.

All that, however, was to change. Once training commenced a whole new routine established itself. Sadly, it wasn’t the one planned. What should have been a drink-tap-express situation was, in fact, something entirely different. I drank, I wet myself, my nightwear and sheets were changed, I drank again, I wet myself again, the whole lot was changed again. I now existed, it seemed, in a urinescented miasma. Though I obviously couldn’t feel that I was mostly lying in a puddle, I could smell it, and I well knew that visitors could too.

‘Please,’ I begged, ‘can’t I just have my catheter back?’

‘No,’ came the answer. It was out of the question. Catheters, I was told, were only for the sick. And unfortunate souls locked in comas. They, it was pointed out, obviously couldn’t help it.

But I couldn’t help it. The process wasn’t working. And to make matters worse, it was positively harmful. Lying endlessly in wee does no one any good. Apart from the obvious stress and humiliation, I began to succumb to an endless round of infections—something that never stopped in all my time at Rookwood. Nothing trivial: acute vomiting, rigors, crashing headaches. The latter, I learned later, were a part of my condition—to give it its fancy name, Autonomic Dysreflexia, a situation in which the autonomic nervous system (that part of the body’s electrics which controls functions of which we should be unaware, such as blood pressure, heart rate, gut function and so forth) over-reacts to a stimulus. In this case it was a response to the inflammation of my bladder; the inefficient emptying was causing the recurrent infections.

In short, it was my compromised body’s way of letting me know that all wasn’t as it should be in the areas I couldn’t feel.

Nevertheless, we persevered. The ‘we’ in this case being nurses with a clearly unshakeable belief that it would work in the end, and an unhappy and vulnerable fifteen-year-old girl with insufficient authority to stop the urine-soaked nightmare from continuing.

My compliance with the issue of bladder training wasn’t just about lacking sufficient assertiveness to question the regimen they’d decided upon, any more than it was about scientific fact. Doing as I was told, generally, seemed the best way forward, as events I witnessed early on showed.

In the next bed on my left, the final bed in the corner of the ward, was a woman called Lesley. She was thirty-one, had been admitted a month or so before me, and was already up in a wheelchair. Like me, she’d been the victim of a motorcycle accident, but the circumstances couldn’t have been more different. Lesley’s bike had been her own, and her accident had not been the result of any maniac driving; she’d been travelling, at no speed whatsoever, through some roadworks, and the bike had ended up in an unmarked hole in the road.

Fate had been especially cruel to Lesley. Given the circumstances, she could easily have expected to come through with little more than a few bumps and bruises. Instead, she’d had an especially unlucky landing, crushing her spinal cord at the upper mid-dorsal spine, resulting in the same level of paralysis as mine.

Like me, she’d lost the use of her legs, plus all of the muscles below the mid-chest level. Loss of these muscles had big implications for breathing, obviously, and also balance. I knew this because during the physiotherapist’s first visit to me after admission, she helpfully brought charts of the body, in order to show me what was what. They looked a little like police outlines of murdered corpses, and showed the stark consequences of different levels of spinal injury. Mine, and Lesley’s too, were shaded black below the mid-chest; this was the part of my body that wasn’t going to play an active part in the rest of my life.

Lesley and I agreed that in one moment the course of the rest of our lives had changed irrevocably. It was good to be able to talk about it to someone who was going through it too, but it was also terrifying. I think it was then, talking to Lesley, that things really hit home. That we were both changed for ever, that there was never going to be a cure, that this - all of this - was never going to go away.

Apart from our injuries, Lesley and I had marked differences; I was six feet tall, and needed an extension on my bed, where she was four foot eleven. Months later, when standing between the parallel bars in physio, we looked a little like Mutt and Jeff. We had also had very different treatment for our injuries: post her accident, she had been managed traditionally, with bed rest, whereas I had had my fractures stabilised with metal rods. She was adamant that the conservative line followed in Bristol (and also, ironically, at my parents’ choice, Stoke Mandeville) was the gold standard, while I found myself sticking up for Mr Davies’s operative approach.

I was probably not qualified to judge either way - we were both of us up the same creek without a paddle - but my sense of loyalty to my brusque consultant was keen. I often found myself bringing his name up in conversation and wondered if he wondered how I was getting on. I was later to find out that he was perfectly at ease. He’d sent me to the acknowledged ‘best place in South Wales’. Of the day-to-day horrors and humiliations of Rookwood, he obviously knew absolutely nothing.

Originally from Sheffield, Lesley was intelligent and funny, with long brown hair and a habitually determined expression. She’d had a good job in the Civil Service, based in Bristol, and also her own home, to which, it was sadly and increasingly clear, she would in all likelihood never return.

She’d also had a boyfriend but he soon became an ex because he simply couldn’t cope with her injury. She had very few visitors and, as a result, liked very much to be included when mine came - as one or both of them did every evening. At times both Mum and Dad and I found this intrusive - after all, I had Lesley to talk to all day; when my parents came, time spent with them felt very precious. But I was also aware of how lonely she was; how covetous of my lovely family.

Lesley too had been using a catheter, and, like me, she’d now been moved onto a training regime. It wasn’t working out for her either. But Lesley knew her mind and, unlike me, she wasn’t going to take things lying down.

However much we might wish it otherwise, there is basic human nature involved in all our interactions, and I was learning about that pretty fast. The situation of being helpless is not natural. It puts you immediately in a position of dependency, which is one in which no sane person wishes to exist. I no more wanted strangers to deal with my faeces than I wanted to have to deal with theirs. And I particularly didn’t want pity. Which was unfortunate because pity, in all its forms, was such a part of the experience of being as I was that you could practically sniff it in the air.

The position of my bed - indeed that of the last four beds at the end of the female section of Ward Six - felt like the end of the world. Geographically, from a hospital layout perspective, that was precisely where it was. A dead end. The end of a long ward at the end of a long corridor which was one of several spokes that fanned out from the entrance. There was, therefore, no passing traffic. Unlike Neath, with its endless bustle and activity and comings and goings, no one had cause to be at the end of Ward Six unless they had come to look after one of the four patients there. And apart from the nurses and various medics and domestics, the only people who had reason to be on Ward Six were the families and friends of people like me. People who for all the world wished it wasn’t so, that they didn’t have to find themselves regulars here. And who would? This was not your usual hospital ward, with its round of admissions and recoveries and discharges. The patients - and their visitors - were here for the long haul. Jolly farewells were few and far between.

You could see it in everyone’s expressions. The way, as they approached, to see whoever they were seeing, they reconfigured themselves to suit the gravity of the occasion. How they’d glance in your direction and then crave the chance to look away. You could sense they realised they were entering a desperate place.

I couldn’t blame them. I wished so much that, like them, I had the choice to leave, but, as time wore on and the extent of my disability dawned on me, the thought of the outside world was becoming just as frightening as my continuing confinement in the ward. I was so grateful for the love and support of my parents; being able to confide in them was the single greatest thing that kept me from the black hole that could spiral me down into overwhelming despair. With them beside me, I knew I could just about cope.

Lesley didn’t have that. All Lesley had was Lesley. And her way of avoiding the black hole of despair was to take herself off to the pub. Within ‘pushing distance’ of the hospital there were two of them: the Maltster’s Arms and the Black Lion. Both welcomed Rookwood patients. After one particular evening’s escape with some rare visitors, Lesley returned a little the worse for wear and arrived back rather noisily on the ward.

Noise itself wasn’t an issue - it was almost always noisy - but her stentorian rendition of ‘She was on the bridge at midnight…’, though completely hilarious to us patients, didn’t go down terribly well with the nurses.

By the time she’d reached the female end of the ward, she’d decided to stop serenading her fellow patients and was now keen to try and engage us in polite conversation about how we’d spent our own evenings.

Two nurses appeared behind her and told her it was time to pipe down. It seemed that, for Lesley, it was a final straw moment. Something had been steadily building inside her - something big. She suddenly erupted.

Whirling around, and in doing so almost falling out of her wheelchair, she told both the nurses to f**k off. Needless to say, this did not go down well either. In an instant, she was manhandled into bed, both cot sides were raised and her wheelchair was removed. Not just removed, either, but - or so it seemed to me - confiscated. Maybe it could be seen to have been a health and safety issue, but I didn’t doubt for an instant there was a power play involved. Indeed, the nurses seemed keen to make that fact very clear. In the fracas, I heard her tell the nurses she was wet, but they, by now, didn’t seem to care. As they left, having noticed me staring wide-eyed and horrified, one of them stepped across to my bed. Perhaps she had read my expression as one not of shock but of defiance. There can be no other explanation for what she said. Which was that I could expect more of the same treatment should I decide to step out of line myself.

I lay in bed, my heart thumping, long into that night, listening to the sound of Lesley’s sobbing. Her bed remained unchanged till the following afternoon.

If finding out all about power and control was proving taxing, there were other, less dramatic but equally important lessons to learn. Towards the end of my six-week period of total bed rest, one of the nurses, during a turning session, noticed some blood on my sheets. This development was not unexpected. Sister O’Rourke had already told me, back at Neath, that my periods would soon be returning, and, in some ways, their doing so was proof that my body was returning to ‘normal’ after its long weeks in spinal shock.

It was also, to my great ambivalence, a reminder that I was still a reproductively functioning young woman. A sexual being. But what was the point of having periods? I’d never been keen to have children anyway, but now it was academic because what man would want me? After all, Lesley’s boyfriend hadn’t wanted her any more, had he? How was I now - as a cripple in a wheelchair - going to be desired by any boy or man? Before my accident, with a mixture of embarrassment and pride, I had grown used to being wolf-whistled on a daily basis - whether in my school uniform or in my casual clothes. I had been proud of my body and filled with normal girlish glee that it could provoke this reaction from grown men. I had not yet been in love but, just like any other girl, I had hoped in due time to be swept off my feet and transported to a romantic ever-after.

My English classes had taught me the great love stories - Romeo and Juliet, Robin Hood and Maid Marian - and, like almost all girls back then, I’d watched the film Love Story and been enthralled by the love affair between Ryan O’Neal and Ali McGraw. That it culminated in the heroine’s untimely death from leukaemia now took on an almost unbearable poignancy. She’d been lucky; she’d been loved before it had happened. Was I likely to find someone to accept me as the cripple I’d already become? It felt impossible. I couldn’t accept me. I even envied Ali McGraw’s character’s tragically early but theatrically glamorous death; I could see no prospect of heaven on earth for myself, however short, before my own likely premature demise.

As with the business of my bladder, however, the resumption of my periods was not about sex. It was just one more embarrassment among many.

The nurse was brisk and businesslike about it. What sort of protection was my preferred choice? I told her I’d always used tampons up till now, and another nurse was dispatched to go and get one.

She returned soon after and it was duly inserted, while I lay there and considered the long-term implications my monthly period would bring with it. Exposure to the crap cart meant that while I remained at Rookwood there was little that could further mortify me. But after that? Would Mum do it? Would I find some way to manage? What did other women in my position do about it? All questions that burned but remained unasked and so unanswered. I was naturally shy about such intimate matters. It was bad enough living it, without having to discuss it.

Two hours passed and it was time to be turned once again. Another nurse this time, who also saw blood. ‘Looks like your period has started,’ she said.

‘I know it has,’ I answered. ‘Another nurse has already put in a tampon.’

I wondered at this point if I might have had a leak. My periods, after all, were sometimes horrendously heavy. Not so. The nurse made a closer inspection and, inexplicably to me, started laughing. And this wasn’t just laughing, this was serious laughing. The sort of laughing that left her fighting for breath and helpless with her unexplained mirth. It was some time before she got herself sufficiently together that she was able to share the cause of the hilarity with me and all the other patients within earshot, who I didn’t doubt were listening intently by now.

‘It’s been put,’ she explained, her eyes still wet with tears, ‘in - how shall I put it? - the wrong orifice!’

I imagine she probably thought I too would find this funny. Indeed, in the telling - and it’s been something I’ve told, often - it generally makes people smile. But at the time I could no more have laughed about what happened than I could insert the wretched tampon myself from a position lying flat on the bed. My natural sense of humour about such things deserted me. I was wholly, toe-curlingly horrified. I simply couldn’t believe that there was a nurse on the ward (a nurse who looked about sixty) who either didn’t know where a tampon should go or, worse, cared so little for putting it where it belonged that she just shoved it anywhere it would go. Where, I thought wretchedly, would she put my next suppository? I felt violated. I’d been lying bleeding for two hours, with a tampon in my rectum, entirely unaware that anything was wrong.

I didn’t know the reason - could she really not have known? - but one thing became blindingly obvious. That the trust I’d put, of necessity, in all the carers around me was misplaced. Was mistaken.

Was gone.