Never Say Die. Lynne Barrett-Lee
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