Pilcrow (19 page)

As for Mum and the dentist’s, what happened was that she went to have two teeth out. She read an article in a magazine while she was waiting to be seen. She had always been more of a magazine person than a book person, even away from waiting rooms. Over time
magazines
had rewarded her with household tips, recipes, sensible opinions and even the idea for keeping and breeding budgies – that fulfilling pursuit, that life-saver. Now the world of magazines punished her with something it normally kept at arm’s length, brute fact, not to be bargained with. Not to be cooked, cleaned, common-sensed or
hobbied
away.

Mum was going to have two wisdom teeth taken out – only the upper ones, which isn’t normally traumatic. It’s pretty much in and out. The dentist was only going to use a local anæsthetic. It’s the
bottom
ones that give the grief. Mum was half-way through reading the article when her name was called. At that moment her whole world was going smash. She didn’t even think of cancelling the
appointment
. It was something people just didn’t do in those days. She would keep her appointment with the anæsthetic needle and the extraction pliers, but as she stood up to go through into the surgery she slipped the magazine into her handbag. She was only stealing a second-hand magazine that no one else was likely to want anyway, but this was by her standards a steep descent into lawlessness. The abandonment of morals showed that she was in shock. She held the handbag tightly against her, despite the dentist’s cajoling, all the way through the raid on her mouth.

The dentist injected her in the gums, each side, and also in the palate. When he does that it feels as if someone has stuffed a shoe in your mouth. He tells you that you’ll feel as if you’re unable to
swallow
, although if you try you’ll find you can.

He tested the inside of her mouth with a probe, to make sure that the anæsthetic had taken hold, while she held the magazine against her heart.

I don’t think dentists enjoy inflicting pain any more than any other health professionals. I quite enjoy my own sessions in the chair. I find the dentist’s working position comforting, leaning over me from behind, so that I can sometimes rest my head against his chest. I enjoy the warmth transmitted through his smock to the crown of my head. There’s a soft connection there, where the bodies touch, as well as a harsher one where the scientific illusion makes its investigations,
usually
with something sharp, into the ‘I-am-the-body’ illusion.

The anæsthetic deadens pain, but it has no power to muffle the
disconcerting
sounds of extraction, which are transmitted sharply along the bone to the ears so close by. The groans of the gums are silent, but the teeth creak and crack under the pressure of the pliers in the moments before they give way. The sounds they make are very much like iceberg calvings, frozen sunderings. Cracks echo from an arctic distance as the dentist consolidates his grip on the condemned tooth and starts to pull, yanking its roots from bone.

Mum’s dentist was a competent one, and he didn’t take long to
perform
the extractions. He asked her if she wanted to see the teeth he had removed, but she didn’t hear him. She was already pulling the dog-eared magazine from her bag. He showed her the teeth anyway, with a touch of professional pride, explaining that one of them had been infected and would have given her grief before too long. Between his pliers the crown of the tooth was mush. She barely glanced at it. Her eyes strayed only for a moment towards those
shattered
trophies before they returned to the pages in her hand.

The dentist asked Mum to open her mouth, and when she obeyed him he popped in a little cotton-wool bolster on each side, to absorb the blood. Her mouth was still numbed, and she found it hard to close her mouth round the cotton wool. Then she wandered into the
waiting
room again. She sat there, as if she was still waiting for her appointment, until she had read the article to the end. Her legs had received no anæsthetic, but she didn’t trust them yet to carry her home. Normally she was the one who did the pouncing in waiting rooms, with sad or happy stories, bed rest or budgies, but now she had been pounced on herself.

The article she read was about a special hospital where they sent sick children, children whose joints swelled and then locked, whose first symptom was a pain that kept coming back at the same time of day. As the article described them, they were children exactly like me. They didn’t have rheumatic fever. What they had was systemic
juvenile
rheumatoid arthritis, known as Still’s Disease after George Frederick Still (1868–1941), the professor of pædiatrics who first described it.

She read the article again and again, trying to find something in it that didn’t fit my case. The fit was horribly perfect, the symptoms identical. The only discrepancy was the diagnosis. The only thing that didn’t fit was what the doctors had told us. Lightning had struck twice in exactly the same place – in my joints. The first strike had been destructive enough, but this second strike was worse. It seemed to blast with a sort of irony.

Mum rolled the magazine up without looking around and put it in her bag. She was smoother in the business of stealing now. She was hardened. She passed her hands over her face, and braced herself against the chair to stand up.

Only on the way home did unnatural calm give way to hysteria in its other form. Granny was sitting in the kitchen with a cup of coffee when her daughter came flying in, her swollen mouth stuffed with blood-soaked swabs, hardly able to speak, making sounds that were more like howling than anything else.

Mum should have remembered who she was dealing with. It was a point of principle for Granny not to be taken by surprise. She said, ‘Laura, dear, whatever’s the matter? You look like a molested
guinea-pig
.’ Mum spat the swabs out into the sink, making fastidious Granny wince, and she tried to explain, though the anæsthetic did her articulation no favours. She was trying to master a new language.

‘I can’t understand a word you’re saying,’ said Granny impatiently. ‘Calm down and then start from the beginning.’ Instead Mum thrust the magazine at her, stabbing at the fatal article with her finger.

Granny didn’t like wearing her reading glasses, even in front of close kin. Her eyes flickered over the pages, but it may even be that she didn’t take in the full details. She gained an impression, and that was more than enough, usually, to enable her to marshal her forces.

‘Oh
that
,’ she said, pushing the magazine back to Mum. ‘The daughter of a very dear friend got that. I sent them both along to the top man. She’s cured now, quite cured.’ Granny couldn’t break the habit of knowing best, however little she knew.
Send along
was a very characteristic phrase. She popped people with problems into the post, making sure they were properly addressed to the Top Man, and then everything was sorted out.

Mum pushed the magazine back in her turn, and this time her
finger
was jabbing down onto one word out of the many in the article. Granny put her face near the paper, then pulled her head back and looked down from an angle. And still the word was
incurable
.

The sensations in Mum’s mouth began to alter, as the pain that had been postponed returned in instalments to take the place of chemical numbness. She waited for her tea to grow cold before she drank it, and then, fortified by the national drink, she set off for Dr Duckett’s
surgery
. Mum practically barged in, which wasn’t at all her usual
hating-to
-bother-you style, her sidelong Heather monopolising. She was beside herself, adding queue-jumping to the crimes of the day. Duckett was simply baffled when Mum produced the fateful pages. ‘Oh it won’t be that,’ he said. ‘I can set your mind at rest. That’s just something they teach you about at medical school, for completeness’ sake. You never actually see it.’ But I suppose somebody has to have it, if someone has gone to the trouble of naming a disease. It simply hadn’t occurred to him. As Dad put it when he heard, ‘It wasn’t on his radar.’

Granny got to work on the Top Man angle. A week after Mum’s appointment with the dentist she put in another appearance. She took a piece of paper out of her handbag, and also, this time, her glasses case. She put the glasses carefully on her nose, now that there was something worth reading, a name written in her own hand-writing. ‘The top man in this field, Laura,’ she said, ‘is a Professor Eric Bywaters. As it happens, the friend of a distant friend.’ Mum just stared at her. It was the same Bywaters who was heavily featured in the fateful article, and he held out no hope of a cure.

After that first time, Granny made no further reference to knowing someone whose daughter had had Still’s but was now cured. She
didn’t
  admit to having been wrong – it wasn’t quite such a crisis as to call for that. She certainly didn’t apologise for holding out false hope at a terrible time.  

The emotional weather outside my room went through some
convulsive
changes, but I can’t say I noticed at the time. Despite Dad’s kind words about the prospect of me commanding the scene as an actor, all this drama took place while I was off stage. Mum had explained ‘the facts of life’ to me very promptly, even prematurely, but now she held off from telling me what turned out to be the facts of my own. I learned things in small doses over a long period. There was a slow process of filtration. Information entered my system by a sort of drip-feed.  

Rheumatic fever and Still’s Disease weren’t as different as chalk and cheese. They differed as one cheese differs from another. In one way they were much of a muchness: there was no cure for Still’s Disease, any more than there was for rheumatic fever, so Mum and the doctors hadn’t missed out on some magic potion to make me better. One day (the day Mum said good-bye to her wisdom teeth) she had woken up the mother of a pain-ridden, immobile child, and she had gone to bed that night the mother of someone very similar. Eventually both
diseases
die down in their chronic forms, leaving different types of
devastation
.  

There’s a certain distinction, too, in suffering from a condition that has a personal name attached to it, like Still’s Disease – to be afflicted with a condition that someone had to go out and
find
. An outcrop of illness that an explorer planted his flag on. It feels more adventurous, somehow. A named disease seems more select, less suburban in Mum’s terms, even if a few named diseases are rather common, like Parkinson’s. There was an additional distinction that Still could claim: he had named a disease on the basis of an MD thesis, an achievement he shares with only a tiny handful. Raynaud, Tooth (though Howard Tooth only managed to hitch his name onto Charcot-Marie-Tooth Disease with the help of a hyphen).  

Mum cared nothing for cachet at this point. What she cared for was a crucial difference between the two conditions, and that was the
palliative
treatment suitable for each. That was where she was entitled to feel guilt and regret, rage and despair.

A boy with rheumatic fever would have been doing exactly the right thing by staying as motionless as possible, as I had, for those years. A boy with Still’s Disease had different obligations. His job would have been to keep his limbs in constant gentle movement, so as to minimise the seizing up of the joints. As his joints became caked with rust, he should have been keeping them oiled as best he could, with continuous mild activity. I had done nothing of the sort. I had been lying down on the job, and bed rest had let the disease’s effects run riot through my body. Still’s Disease had taken away my power of movement without meeting even token resistance.

My years as a bedbug left me with a diminished stature and a
defective
apparatus. When I went to bed, Peter was comfortably smaller than me. By the time bed rest had done its work, my imaginary friend was not only real but taller than me.

The effects on my legs and arms were different. My legs are more or less standard in their proportion, while my forearms are distinctly short, in relative as well as absolute terms. By this time I had almost no movement in my left arm. The wrist and elbow were fully
ankylosed
, so that any motion had to come from the shoulder. I pay the price for such efforts in the form of a frozen shoulder, particularly if I get cold at night.

My right elbow has a certain amount of movement, so my right shoulder is spared problems of that sort. Nobody has explained to me how this discrepancy between left and right came about. If I choose to think that my right elbow would have gone the way of the left, if I hadn’t kept it moving with my daily shakes to keep Jim Shaeffer’s watch wound (I fight the temptation to acknowledge his contribution by giving him the honorific spelling
Shæffer
), then likewise there is no one to over-rule me.

Below the waist mobility was long gone. The hips had a little play in them, but knees and ankles were locked. As ornamental objects my legs failed to redeem their deficits as instruments of walking. They were thin, thanks to the wasting of my muscles, though the joints were enlarged. The right knee was bent forward, the left to one side. I had indulged in no wilful contortions, and still the wind had changed and I was stuck with their skewing.

Despite all the damage, I can’t manage to regret the years I spent in a particularly intense state of isolation. That period of under-stimulation was very important for my development. I was thrown back on resources that I might not otherwise have discovered for many years. Health impels us toward the outside world, sickness brings us home to ourselves – that’s something Aldous Huxley says.

I was forced inwards, and so started to make experiments in
self-enquiry
at an unusually early age. I soon became bored with my own personality, as much as with my surroundings. I decided there must be more to me than the ‘John’ who felt pain and hunger and the desire to make mischief, just as there was more to the world than the room which confined me.

In the course of mundane education, children learn to ask the
question
‘Who am I?’ only in the narrowest contexts – whose child? Whose sibling or friend? Whose pupil? We push children outwards towards the world, and demand from them nothing less than full
participation
in illusion, from the earliest possible moment.
They’re going to hang that blonde lady because she shot a man who wasn’t her husband, but also because she isn’t really blonde and no better than she should be. No,
darling
, a mushroom cloud isn’t made of mushrooms
. We defend children from the reluctant inwardness of tedium. Terrified of their boredom, we make them fear it themselves. We addict them to distraction and then feel better.