Pilcrow

by Adam Mars-Jones

  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

  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.

  Less like melting

  One thing that many people have noticed, though, is that children die well. Children are better at dying, as a rule, than adults, but then adults react to this fact with sentimental wonder. No one ever asks why it should be that dying should become harder as people grow up – as the world interprets growing up. What is it that makes dying less and less like a melting, more and more like a tearing? It has to be the way we come to accept the conditions of life.

  I got only a mild dose of this conditioning. The great obstacles to enlightenment are the ‘I-am-the-body’ illusion, and the ‘I-am-the-doer’ illusion. The years I spent in bed were an apprenticeship in pain. The pain wasn’t always intense, it had its moods and its tides, but it never wholly went away. To see myself only in terms of my body was to define myself in terms of pain. I wasn’t tempted. Looking for an alternative was as natural as any physical reflex. When pain is continuous you come to realise that you have an aspect that pain doesn’t touch. Without conscious effort I started to construct a different mental organisation, in which I might be able to live continuously where pain was not.

  I had every incentive to develop a sense of myself that wasn’t dependent on sensation – since my sensations were so overwhelmingly negative. The road to satisfactory sensations was blocked by the piled-up wreckage of my health. If pain prevents us from remembering ourselves, then it is a great obstacle. If pain keeps us in the present then it is a great advantage.

  In the whole of the Western tradition there’s only one text, as far as I am concerned, that has any illumination to offer on this subject. It’s a poem actually, and it goes,

  There was a faith-healer of Deal,

  Who said, ‘Although pain is not real,

  When I sit on a pin

  And it punctures my skin,

  I dislike what I fancy I feel.

  A limerick, in fact, and not on the surface sympathetic to my philosophical position. It sets out to lampoon quackery and to champion common sense. It has no time for the transcendent. I get it, really I do. It’s droll. But how easy it is to draw the teeth of the satire! All it takes is some additional punctuation in the last line, leaving every word intact. The last line should read, ‘“‘I’ dislike what ‘I’ fancy ‘I’ feel.”’ That’s all it needs. Just a little re-pointing dissolves the mockery, and the final meaning is straightforward Hinduism.

  As for the second illusion: I was able to do so little for myself in those years that I lik
ewise loosened my ties to ‘I-am-the-doer’. If I was the doer, I was making a bad job of it.

  Unperceived daily waterfall

  When I tried years later in life to do yogic breathing exercises, pranayama, I found that some specialised respiratory patterns were already familiar to me. I had learned how to calm myself using only the body’s untapped resources. I knew how to raise or lower body temperature with different styles of breathing, and when the pranayama exercises called on me to inhale or exhale through a single nostril, I found that the knack was easily acquired or recovered. I’d already been practising in all innocence.

  It may be that I was also meditating in an amateurish way, without benefit of a mantra, seizing on any remembered object for contemplation until I had worn it smooth, turning it into a mental pebble cool to my mind’s touch. If the main obstacle to successful self-realisation is uncontrolled thought, then I had a head start. There was so much less for me to shut off, only a dripping tap rather than the unperceived daily waterfall of distracting sensation.

  From my bed I sniffed the wind and could smell the weather changing. I just couldn’t decide what exactly was happening. The emotional climate around me was complex and hard to read. There was change on the wind, undoubtedly, but the change didn’t correspond to the workings of a single season. It was as if the trees were shedding their leaves and coming into bud at the same time.

  Then Mum told me I would be going to school. Decisions had been made. It would be a school with other boys and girls in it. I tried to bank down my excitement, but still it came fizzing up. Going to school! I could wait a lot longer without moving, if that was to be my reward. I could wait another year if I had to, so long as school happened in the end.

  Mum and Dad didn’t spell out the exact character of the education that awaited me. They knew the things to say which would keep me happy. Yes, there would be teachers, many teachers and many other children. There would be books – any number of books – and there would be blackboards. There would be as many blackboards as I wanted. There would be chalk and learning, maps and sums and foreign languages. There wouldn’t be the Collie Boy. Her work was done.

  Contaminated tongue

  In fact her life’s work was done. Soon after she stopped teaching me Miss Collins ate some contaminated tongue and died. There must have been something quite hard and cruel inside me at this time, because I didn’t mourn her. My main regret was that she had taken with her, as she departed from the earth, one of the few delicacies that I would reliably eat. She had been wise to the whoopee cushion on her chair, but not the sliced tongue on her dinner plate. That got her good.

  Tongue had been just about my favourite food, being so silky and tender, and now I learned that it could be poisonous. From then on I could only look at it wistfully, knowing that if I was tempted to eat it again I would probably die. I hadn’t fully realised that tongue was meat until then – let alone what it really was. Compressed bovine lingual flesh. The possibility had never occurred to me. I knew that this silky food had the same name as the talking muscle in my mouth, but it looked nothing like. I assumed that there were two different words that only sounded the same. There are plenty of words like that. Like pain hurt and pane window. They might even be spelled the same, like bark a dog’s voice and the bark that was a tree’s skin.

  I tried biting my own tongue, even chewing it a little, to see if it had the same sort of flavour, but again there was no resemblance. Mum had worried so much about the weevils in flour, the worms that never grew despite my hopes, and all along she had been feeding me something really dangerous, something close to poison. I’d never take that chance again.

  So Miss Collins was out of my life, and her own, and there was also another good-bye that was harder to say. No pets were allowed at the school where I was going, so Charlie would be staying with Mum. This bit of news gave me a pang, but I got over it. Charlie was my best friend, but that had a lot to do with his being my only friend, and if I stayed at home with him I’d never get another. And besides, wouldn’t I be coming home at weekends? Yes, John. Every weekend? Not every weekend – some weekends. Now and then. And will there be holidays? Yes, every now and then there would be holidays. Then I’ll see Charlie on my holidays. Cheerfully I sold out my only friend in the interest of getting a proper education.

  At that age I wasn’t able to frame the crucial question: is that in fact what I will be getting, a proper education? What I wanted, really, in the way of education, was to watch boys wrestling without antagonism, wrapping their legs round each other and rolling back and forth. It stood to reason that school was where that would happen, if at all. What Mum didn’t mention, until just before I was due to go, was that there wouldn’t only be teachers and books at the school. There would be doctors and nurses and needles. Some of the needles might have tiny hooks attached. There might be invasions of my mouth and my bottom. Soapy water might be introduced there until I made a tuppenny mess. I would be going to school, yes – there was no real deception involved. There would be lessons, certainly. But I wouldn’t exactly be going to a school. I would be going to a hospital, and the school was tucked away somewhere inside it. The hospital would be there all the time. The school would put in an appearance now and then, as and when.

  She told me the truth eventually, in her own way. ‘You’re going to school soon, John dear, but it’s a special school. You see, this is a special hospital that is also a school. So they’re going to make you better and make you clever – all at the same time.’

  In fact I would be living in a hospital. To be specific: I would be living in the hospital mentioned in the famous article, the Canadian Red Cross Memorial Hospital, Taplow.

  Interlude: Great Western

  First I had to get there, to be schooled and hospitalled. Mum and I would travel to Taplow by train – but first we had to get to the train. A special ambulance would take us to the railway station. Before that, though, we had to get out of the front door, and that meant packing. I think the last day or two before I went to Taplow were the ones which taxed my patience most, in all that time of bed rest. Officially the sentence of bed rest might have been lifted, unofficially it went on, since there was so little I could do any more apart from lie down.

  Those last few days were my homely introduction to Zeno’s Paradox, the rule that nothing can ever happen, because something else has to happen first, and something else has to happen before that … I truly thought I would go mad in those days, just when my seat was booked on the Sanity Express to Taplow, wherever that was.

  I tried to think that packing was an adventure in itself. By ‘packing’ I mean watching Mum put things in a case I would never carry. She laid the things I would be taking out on the table and showed me them before she tucked them away. Spare pair of pyjamas, toothbrush, toothpaste, Mason Pearson brush with a handle, flannel and soap. Most important, as far as I was concerned, was a stack of pre-paid postcards, more important even than the sweetie tin filled with treats like Milky Way. Mum had addressed all the postcards to ‘Mrs L. M. Cromer’ at 5 Westwoods, Bathford nr Bath, Avon. I laughed at the sight of that bundle of cards, all of them under strict instructions to find their way right back to where they were now. It was a boomerang bundle! My hand-writing was atrocious if not actually non-existent, but Mum said it didn’t matter, I must write to her anyway and she would understand.

  Unreachable pounds

  If I dreaded the labour of writing, I was still in love with numbers, and I worked out the aggregate cost of the postcards in the bundle. I still had several unreachable pounds in my Post Office Savings Account. I felt in my bones that those pounds were as good as gone. The Post Office would probably pass a law that you weren’t allowed to withdraw money if you lived in a hospital, just so they could hang onto my (Dad’s lovely word) spondulicks.

  All I had in cash was 8s 5d, saved up from little gifts. Doing the sums in my head, I told Mum that I wouldn’t be able to write more than once a week or it would be
too expensive. We had a bit of an argument, with her saying that I could write as much as I liked – it wasn’t going to cost me anything. In my own small way I reasoned back, using the argument that the money for the stamps would have to come from Dad. If it came from Mum, she would only have to get more from Dad when it ran out. Dad had quite enough to do already, without having to work even harder to pay for stamps for postcards to be sent home by me, a boy who couldn’t even write properly.

  I reassured Mum that the family money problems would soon be over. After all my health problems were sorted out I would run a jeweller’s shop. Mum could come along and have any watch in the shop she wanted, absolutely free. It was only for now that we’d have to be careful about things like postcards. Finally Mum pointed that the money had been paid already, so it would be Wasting Money not to send all the postcards. Then I gave in, quite pleased for once to be over-ruled, after putting up a good fight on behalf of Dad’s solvency. I regretted it soon enough. I never heard the end of it, about John’s jewellery shop and how terribly sweet it all was.

  As far as I was concerned the postcards were the most important things in my little case, but Mum said my toothbrush and paste were vital. I must ask Nurse for a kidney dish, and I must remember to brush my teeth morning and evening. ‘And I do have ways’, she said darkly, ‘of finding out whether you’ve been using your toothbrush. You’ve been well brought up, and if I asked you now, you would certainly tell me the truth. But you may find out in hospital that advantage can sometimes be gained – just for a little while – by fibs.’