Cedilla (3 page)

I enjoyed the idea that my weight was a cosmic unknown, almost on a par with π, not to be apprehended directly but deducible by calculation. I savoured those few seconds in Jack’s arms, though I tried to keep my blood pressure low. The body heat blazed through the smock he wore, and I was blissfully cooked in his mystical matiness. This was a perfect moment and would have remained so, even if Jack had a fit of the Aztecs immediately afterwards, tearing my heart out with his large warm hand and throwing it down the sacrificial steps.

There’s never a photographer around when you want one, is there? I wouldn’t have minded having that moment recorded. A single radiant image to outweigh all the pictures taken of me in hospital over the years. Somewhere in the offices of CRX in Taplow there was a photographic archive documenting the scanty progress of my generation of Still’s Disease patients, effectively a rogues’ gallery, showing our every deviation from normal posture and shapeliness. We were habitual offenders, backsliders, recidivists, stubbornly attached to the mistakes our bodies made.

I don’t remember exactly what I weighed in those days. Not very much, but certainly more than Edith Piaf, since as everyone knows sparrows’ bones are hollow and extremely light. And mine are not.

The moment I woke up after the operation I knew something was wrong. Of course, ‘waking up’ misdescribes what happens after anæsthesia, or any other condition of absence. The world disappears every time we go to sleep, and the ego has to build it from scratch every time, to fabricate the morning. But the world as I reconstituted it in a side ward after the operation wasn’t up to the usual standards of realism. Everything was askew and wired up wrong. As I became more aware of what my body was telling me, its messages made less sense rather than more. I wasn’t in ‘a certain amount of discomfort’.
That wasn’t it at all. I was in stark pain, not the suburbs of agony but the main square, in carnival.

I couldn’t understand what was happening. It was wrong for me to be having pain on this scale, but that wasn’t the half of it: the pain was in the wrong place. The ‘certain amount of discomfort’ was scheduled for the left hip, but neither of my hips felt any different from the way it had before.

My throat was a different matter, scraped and swollen. It was in torment. When I tried to swallow I almost fainted. I could only think they’d done a throat replacement by mistake. They must have installed an artificial throat, a McKee gullet. Metal on metal. Those brilliant engineers had found nothing better to do than ram a motorcycle exhaust down my throat, still hot from the racetrack.

Everybody knows the scare stories, the scandals of botching. The sweet kidney yanked instead of the rank one, the innocent toes lopped and the guilty spared. Now it had happened to me. I coughed, and clots of blood came up.

Even a newly installed artificial throat should by rights be less painful than this. Perhaps they didn’t have the right size in stock, so they made do with what they had, which was far too big to fit the throat space available. The Extra-Large. Then it must have jammed, so they leaned on it until the metal tube forced a passage. They’d gone to work on my throat the way a clumsy burglar forces a lock.

I was rising and falling through layers of dreaming, shunning the surface where the air was so raw but then fearing that I’d drown if I went down too far.

I even dreamed that Judy Brisby, my Vulcan nemesis, matron of monstrosity, had tracked me down at my most vulnerable, sneaking into theatre while I was unconscious and going back to her old tricks of force-feeding. With no pilchards to hand she had made do with a kitchen funnel, and forced broken glass down it.

Force-feeding was of course one of the techniques used on hunger-strikers such as the suffragettes, a form of torture supposedly acceptable because the alternative was starving to death. In my chemical sleep I had been mistaken for a suffragette, when I didn’t even want the vote.

These were all good guesses, though I coudn’t quite work it out
for myself. Previous invasions of my body (appendectomy and so on) had been made under cover of gas. My body was used to that insidious process and raised no objection. I breathed in without protest the fumes of oblivion. Unconsciousness is how we describe it when the body recedes and the Self consults itself in privacy.

This time, though, the approach had been different. The protocols of anæsthesia had changed. This time the somniferous chemical came in through a vein and not the lungs, and my body didn’t like that one bit. It retaliated and it sulked. This body passed a vote of no confidence. My throat closed up and I quickly turned blue.

Then there was dismay in theatre. They had to do something fast, but the emergency procedure wasn’t obvious or easy. It’s a technical point of anæsthesia – if something goes wrong when you’re using gas you can just pump it out, and pump oxygen back in, clearing the fumes. You can’t do that with an allergen which is already in the bloodstream. You can’t just suck it out, any more than you can make a cup of coffee black when you’ve already poured in the milk. So when something goes wrong after you’ve administered something intravenous it’s action stations. If not panic stations.

Desperate measures were called for, desperate and damaging. The theatre staff had to keep my throat open no matter what. They assaulted me to do it, jamming a laryngoscope down my throat.

In a way, though, I conspired with those who hurt me. For years I had imposed myself on the world by the firmness of my sentence structure. I didn’t let anyone take me for a child, though my size might excuse that delusion. Now this successful insistence on adult status worked against me, and I suffered for it. I had managed to persuade the hospital staff that they were dealing with an adult, but the throat they needed to penetrate if they were going to save me was, indeed, child-sized. An adult tube wouldn’t go in. There were no child-sized tubes in the theatre. They made do with what they had. They forced the adult laryngoscope down my closed throat, and they brought me back as best they could. With the same fused old hips I’d gone to sleep with, plus a throat newly lined with barbed wire.

All this I learned from Jack Juggernaut in tiny instalments, gradually building up a coherent story. The first thing he said gave only the most general impression. It sounded in his basso croon like something from an ancient blues song: ‘Little man, they’ve done you wrong.’ I didn’t like being called
little
, but
man
more than made up for that.

I didn’t know whether I wanted to be held and not let go, or never touched again. Jack told me my mother was on her way, and I tried to remember that she was really an obstacle to any further independence, but it was too much of an effort. The last thing I wanted to be was someone who cried for his Mummy when things went wrong, but for the time being that was what I was.

When Mum turned up to comfort me, saying, ‘What have they done to you, my poor boy?’, she was dragging Audrey with her, redfaced and raging.

The way Mum looked was a bit of a shock. She had taken the scissors to her long hair. Short hair had been fashionable for some time, but it had never been her style. We would all take a while to get used to it, even after she had tidied it up a bit.

Her new look wasn’t an experiment in fashion but a desperate measure. As a toddler Audrey would only go to sleep if she could play with Mum’s hair. She would select a single dangling strand and wrap it round her fingers, holding it close to her face. She would tickle her nose with it, breathing in and out very quickly, releasing and capturing some essence which guaranteed sleep. As Audrey grew and she fitted less neatly on Mum’s lap, these demands came to seem less charming.

Eventually Mum started to put her hair up with hairpins, reversing Rapunzel’s strategy by winching the magic ladder up out of reach of the suitor below. Audrey only became more frantic to reach the enchanted strands. She retaliated by stealing and hiding any hairpins she could find, so that Mum would be forced to let down her hair. Audrey would bury the pins in the garden.

Audrey may have loved Mum’s hair, but she wasn’t quite so fond of Mum herself, particularly when Mum withdrew the most important part of herself. Audrey would rage and grieve. Now Mum had been driven to the extreme step of cutting off her hair just to free herself
from the fingers that reached for it with maddening possessiveness whenever Audrey was drowsy. And Audrey wasn’t happy about the change.

The nurse approached Audrey with a bargainer’s smile and said, ‘Wouldn’t you like a lollipop instead of that silly thumb?’

To judge by the muffled timbre of her voice, Audrey pushed the thumb even deeper in as she gave her answer: ‘
No
.’

The nurse persisted, with wheedling of a different character. ‘A shame for such a pretty girl still to be sucking her thumb.’ If I had been able to groan on anyone’s account but my own at this point, I might have done it. Audrey was not an easy child to chivvy. She didn’t take it well. The comment which the nurse had just passed made it significantly more likely that Audrey would tuck her bouquet under her arm on her wedding day, the better to jam her thumb into her mouth below the veil.

In the short term her response was also characteristic. ‘
You don’t
know what’s in my garden
,’ she said, with vicious emphasis. ‘
You don’t
even know I’ve got a swing!
’ At an early stage – perhaps in the womb, where so much is learned – Audrey had developed the knack of winning arguments without going to the trouble of joining in.

I tried not to sob when Mum sat down by the bed in my side ward, partly to preserve some last shred of dignity (some imaginary last shred) and partly out of self-preservation. Sobbing constricted my throat. It aggravated the pain to which it offered the relief of expression.

There’s no gold standard for pain, no agreed yardstick. To be truthful, any yardstick would have to experience the pain directly, to flinch and writhe in the very throes of measurement.

Obviously it would be useful if doctors could quantify the amount of pain caused by a particular procedure, so as to compare it with other routes to the same therapeutic objective. Patients might eventually be offered a choice between paths through pain, in which personal preference would play a part. There are those who would opt for the agony-sprint, others for the long haul of sub-acute torment.
Torturers of course could make use of the same figures in their own calculations.

An attempt was made at the University of Uppsala in the 1950s, with the participation of local hospitals, to codify responses to pain. In practice the answers people gave were inconsistent beyond the resolving power of statistical correction. It was impossible to screen out the variables, even after the questionnaires were twice redesigned. Pain itself seems to be mutable, so that sometimes it becomes more intense with repetition, while at other times it dulls into numbness. Flirtatiously the toothache lies low, the moment it has led you trembling to the dentist’s chair.

The Uppsala research led nowhere, in the end. It offered a poor return on the krona. So all that remains of the idea is the name of an imaginary standardised unit of pain – the dolor – while the actual project of a workable dolorific calculus was abandoned. So Mum and I couldn’t have a conversation, seasoned patient to ex-nurse, on the level of ‘Mum, it was agony! It was an 88!’ – ‘You poor thing, JJ. Childbirth only averages 55 – and I should know!’ Our exchanges were much vaguer, with tears on both sides.

Deprived of Mum’s attention for those few seconds, Audrey saw her chance of winning it back with interest. She went very quiet, which should have made us suspicious right away, but Mum was preoccupied with soothing me.

Nurses were popping in and out of the side ward every couple of minutes, and Audrey must have taken advantage of one such entrance and exit to slip out herself. So far she only did what any stroppy six-year-old would have done, but in the latter part of the escapade she showed her quality. When Mum had raised the alarm and charged off to lead the search party, she somehow managed to sneak back to where I was. From my position in bed, traumatised and now also upstaged, all I saw was the door of the side ward swinging open and then closed. No head showed at my level. Then a little later Audrey gave a loud and very stagey yawn and stood up, saying she had had ever such a lovely sleep and where was her Mummy? I pressed the bell for a nurse and slowly the fuss died down, with Audrey sticking to her story that she had never left the room. She even said that I had seen her, which was physically impossible, though it also meant I couldn’t
flatly contradict her story, however little I was tempted to believe her. I could see Mum wavering. It wasn’t that she was convinced, she just preferred to think that she wasn’t sharing her home with a manipulative little madam.

Audrey was back in a merry mood. She seemed to think the whole thing was funny, which in a way it was. Mum had longed for years with so much intensity to have a daughter. She dreamed of the completion a female child would bring. She had wanted to be so close to someone that they could almost hear each other’s thoughts, but now that it had come true she didn’t really enjoy it that much.

It was a little breakthrough for Audrey. She had always been a good liar, but now she was an inspired one. She had acquired the knack of being the first believer of her own untruths, letting them radiate unstoppably outwards from that secure core of falsehood.

If Mum really wanted a child who couldn’t get away, I was much the better bet – not that I consented to any such transfer of her hopes, but I could see the truth of the situation. Audrey was already a lost cause. She was supremely well armed, with slyness and subterfuge. She exercised charm relatively late in any negotiation, just before the nuclear tantrum of last resort.

The diet for traumatised throats favoured by at least one of the matrons at Vulcan (a fanatical advocate of dry toast as a healing agent) hadn’t reached Wexham Park, or if it had the staff felt too guilty and embarrassed by my particular case to implement it. It was ice cream and jellies all the way, and I didn’t need to look toast in the face for weeks.