Pilcrow (23 page)

The thoughts I was having about Martin and Mikey weren’t to do with touch and excitement, they were to do with understanding how the world worked. In a sense they were scientific, but they were also hardly thoughts at all. They were more like stray wisps of feathery cloud, feathers of the mind drifting idly by, but clouds that gradually grew into suggestive shapes. I still had the idea that ‘mating’ was something painful for the man. The message relayed through Mum that Dad thought it very nice, as nice as I found the scalp-tickling contact of my Mason Pearson brush, hadn’t really made an impression. That was just British stiff-upper-lip. Certainly Mum had never given any indication that there was anything enjoyable for the lady about this activity. I decided that ‘mating’ was just a job that needed doing and you were pleased when you had got it out of the way, like heavy digging in the garden or building an aviary.

Still, there must be something which Mikey and Martin could do together. Even without holes, they must be able to mate to be ‘mates’. Maybe the fact that they both wore uniform, like Dad, had something to do with it. Maybe it was only nice when you did it with another man in uniform. Maybe you had to tell little boys that it was nice to do with a lady, because if men only did nice things with men, people would stop having babies, which was ridiculous. Maybe little boys were tricked into believing it was nice, but they would grow up and become men and after having two or three children they would realise it wasn’t nice at all. If little girls weren’t nice, which was already beginning to seem a possibility, then how could grown-up ladies be nice? Even if they were nice I would never want to mate with them.

When I needed to do a tuppenny, a nurse brought a terrible thing, something which I thought had no place in my life. A bedpan. I tried to explain there was another way of doing a tuppenny which didn’t hurt me, but they didn’t want to know. There was to be no deviation from standard procedures, and there was no privacy, of course, for the agonies of excretion. The nurses could have learned better practice from Mum in a matter of minutes, until they were using a kidney dish as skilfully as she did, not only for my benefit but for everyone else on the ward, but they were doing everything by the book, which seemed to be their only ambition. Standard procedure was the gold standard as far as they were concerned. Never mind that it was a
traumatic
assault on the patient.

The bedpan was always cold, as if it had been kept in a ’fridge, but I could have put up with that. But my body had no flexibility. I couldn’t support myself over a bedpan in a lying position (or any other). No wonder I moaned and made little groans. I wasn’t making a fuss. It was hardly the Princess and the Pea – it was more like the Princess and the Mattress of Broken Glass.

From the nurses’ point of view, my inflexibility actually made things easier, in terms of the laws of levers. All they had to do was lift me up by the ankles and jam the bedpan underneath me, and move on to the next patient while I tried to relax my bowels, ignoring the
rampages
of the pain in my joints. Then I would have to wait for the nurse to return, in her own good time, for the second stage of the ordeal: the wiping of my bottom.

The nurses weren’t actively unkind. I thought of them as iron
bedsteads
in human form. There was no padding. There were no frills about their care. Some of them would wipe your bottom in a
contemptuous
way, others more or less tenderly. When they came on duty, they’d be assigned to particular patients, and I’d pray not to have an uncaring one, a bum-scraper who seemed disgusted by the whole business. It didn’t help that the lavatory paper was the
cheapest
and most abrasive grade. Every sheet was stamped with the words ‘Government Property’, though it was mystifying that the Government should boast of its ownership – unless the Government wanted it back.

The ward where I was going to live was at the bottom of the
corridor
but at the top of the numbering system. This testified to the importance of Still’s Disease in the establishment. Children with Still’s were put in Wards One and Two, but they weren’t segregated by sex. The numbers wouldn’t have worked that way, since for some reason (as I found out with dismay) there were so many more girls affected than boys. Still’s patients went on to Ward Three or Four after puberty, depending on gender. Ward Three for the boys
becoming
men, Four for girls becoming ladies. After that there was Men’s Surgical and Women’s Surgical. Further in the distance were some TB wards. For the time being, though, while they assessed my medical status, I lived in a little side ward off Ward One.

Any large institution is like a small town, and I had to meet the various inhabitants in turn, the separate sectors of the population. There were so many different aspects to the place to encounter and hope to understand. I had to get used to doctors, nurses, cleaning staff and teachers as well as my fellow patients.

I was under the charge of a doctor and a professor. The doctor was Barbara Ansell, pædiatric rheumatologist, and the director was the famous Professor Eric Bywaters, the one in the magazine article, who had no cure to offer. I saw Dr Ansell first. It was Ansell who first ran her experienced eyes over the body which was the only thing I had to show her. The nurse told Ansell my name, and she said, ‘Hello, John,’ brightly enough, but she asked no questions. She didn’t need to.

One of the last things I had said to Mum before she left me at the hospital was, ‘Where’s the school?’ I could see the hospital, but not the school. And she could only answer, ‘It’ll be here somewhere. You just wait and see.’ She was right. In its own way that first meeting with Ansell was packed with educational matter. Learning doesn’t only happen in the classroom. Medical staff have lessons of their own to teach.

It was from Dr Ansell that I learned something that had both a medical and a linguistic aspect. After she had examined me, she said just four words – both to me and to her colleagues – but they were four words with a great deal of teaching power in them. What she said was, ‘The illness has raged.’

An exemplary sentence, one that deserves a place equally in a primer of grammar and in a text-book of diagnostics. The illness has raged. A demonstration of the implacability of tenses, and our
language’s
preferred way of conveying that an action has been completed and now belongs to the past. The tense is the perfect. The illness has raged. As a medical professional, Ansell was saying that my case was a special one. Thanks to the years of misdiagnosis, everything that might moderate the effects of illness had been avoided, and every course of action which would aggravate them had been scrupulously pursued. In the absence of a cure Ansell and her commander-in-chief Professor Bywaters could only offer palliatives. My case was so severe that it was beyond the palliatives suitable for other patients.

The illness has raged. The perfect tense had implications that needed other tenses to spell them out. The patient cannot walk. The patient will not be walking any time soon.

There was one palliative in particular that Ansell relied on to relieve the symptoms of her patients with Still’s. It was thought of as a miracle drug at the time, though it would be working no miracles for me. The illness having raged, my bones had hardened beyond the point where cortisone could bring about a dampening of pain and restore an element of mobility, as it did for others. Cortisone the ur-, the proto-steroid, first-born of a dynasty that promised so much. My symptoms were beyond the reach of steroids.

Even with cortisone to lessen joint swelling the other patients on Ward One had difficulty walking. I don’t want to exaggerate their easy station in life. Walking was not something that came easily to them. They didn’t walk fast or smoothly. They needed help from
special
shoes, they needed help from the odd crutch or cane, but they could get about.

I couldn’t. There’s a spectrum in Still’s Disease, just as there is with every other condition. I was stuck immovably in the ultraviolet. Lying down was all I could do. It seemed to be my talent and my fate. Ansell did all she could – she ordered built-up shoes for me, but even so I couldn’t stand up unsupported, in the state I had arrived at the hospital.

There was only one thing Ansell could prescribe, which was
physiotherapy
. For the first few months of my time in that hospital I was lifted from my bed and wheeled on a trolley to appointments with supervised pain.

Physiotherapy took place at the far end of the long corridor on Mondays, Wednesdays and Fridays, from nine to eleven. Sometimes the physios came to the ward and put slings and springs on your bed, but mainly it was a trolley trip down the corridor, past the smell of boiled meats and dishonoured vegetables coming from the kitchen.

My view from the trolley was of miles of pipes snaking and hissing along the ceiling of the great corridor. The porters looked down at me and I stared up and past them. The pipes were lagged with different colours, though some weren’t lagged at all. Some of them dripped water, either very cold or very hot. My first scald was a shock but I didn’t say anything. I’d quickly understood that this was a place where complaining wasn’t necessarily a good idea. Avoiding a
scalding
even became a kind of game. I learned to squirm away from the drips. The trolley trip became a sort of physiotherapy in itself,
helping
me to improve my squirming skills.

From time to time a loud voice echoed unintelligibly in the
corridor
. In fact it was the same lady’s voice that could be heard in every room, so often that after a while I hardly noticed it – the Tannoy. I grasped at once that it was ‘the Tannoy’ not ‘Miss Tannoy’, though I couldn’t help imagining the Tannoy lady sitting in a special room on a pile of cushions, eating chocolates to lubricate her voice while she spoke into her special telephone.

I liked the announcements best when I heard them in the corridor, because they were so blurred that you could imagine what you wanted to hear. I could half persuade myself that the Tannoy lady was saying, ‘Jesus to the side ward, please, Jesus to the side ward. I repeat: Jesus Christ to Ward One. Thank you.’ Just my luck to have a Visitor when I was otherwise engaged! I hoped he’d leave a note.

As I became used to hospital life and formed a more detailed
mental
map of the corridor ceiling and its ambushes, I turned dodging the drops into an organised sport. I would steer the trolley myself in a lordly way, not with my body but my voice. I was the captain and the porter was my crew. The captain doesn’t need to steer the ship
himself
, or climb the mast, or drop the anchor. All he needs is the voice of command. A voice doesn’t need legs.

So I’d call out, ‘Left a bit!’ or ‘Hard right!’ and if the porter was in a mood to play he might give the trolley quite a swerve. At first I issued orders more or less on a random basis, since I couldn’t see where the obstructions and free spaces in the corridor might actually be. Little by little I became more sophisticated in my driving. In time I learned to detect the presence of superior powers by the way even a coöperative porter, responsive to my commands, would suddenly slow down and abandon any deviation from the straight. Then I would sing out, ‘Good morning, Sister!’ from where I lay, before her face even came into view above me, looking down as if she was on the point of telling me off, the moment she had managed to decide exactly what it was that I was doing wrong.

The physiotherapists weren’t working out how they could get me to walk. That was far too ambitious. They were working out how to get me to sit. Without significant movement in my hips I could either stand – if supported – or lie down, but nothing in between.

The régime at the Canadian Red Cross Memorial Hospital, in line with the ethic of the period, was determined to get people to walk, however badly they did it. Wheelchairs were regarded as soft options certain to sap the fighting spirit. As assessed by this philosophy my case was paradoxical. It would take arduous months of physiotherapy before I would even be able to sit in a wheelchair for long enough to have my fighting spirit sapped.

The physiotherapy team weren’t addressing the disease, they were trying to reverse some of the damage done by the treatment. Still’s had affected my joints, and inactivity had made things much worse. Those years in bed had been a sort of kiln slowly baking my joints into hardness. Bed rest had caused my muscles to waste away, with the honourable exception of my quadriceps. The physios would do what they could with what I had left.

I had to get used to my built-up shoes. I had to learn how to use a wheelchair, and then in the distant future I was supposed to learn not to use it, to devise some approximation to walking.

It doesn’t sound as if sitting in a wheelchair is something you need to learn. It’s a chair, isn’t it? You sit in it. It’s not as simple as that if your hips are stuck in one position. My posture wasn’t fixed so that my lower half continued the line of the upper – there was a bend of a sort, so that my legs were at an angle of perhaps 160 degrees to my torso. I couldn’t sit, exactly, but I could perch on the edge of the seat. Because there was a little flexibility in the lower spine, I could make the
limited
bend appear greater than it was. I could even seem to be ‘sitting comfortably’, in true
Listen with Mother
style, but this was an optical illusion. All of it took effort. To start with, until my muscles became strong enough to hold me up, I could only sit in the wheelchair for short periods. Later when I went back home on weekend visits and even went socialising with Mum, I could manage reasonably well perched on an ordinary chair, as long as some kindly soul didn’t come bustling along with a footstool, in which case my body went hurtling backwards and all impression of ease went out of the window.

If I had Jim Shaeffer to thank for giving me a watch that kept my right elbow marginally active, then certainly Dr Duckett deserves some credit for helping me resist atrophy in one crucial area at least. In the history of my health, though, he is a complex figure.

It was only much later that I understood that cortisone had
actually
been tried on me, and then abandoned, during the years of
misdiagnosis
and bed rest. Dr Duckett had tried prescribing cortisone at one point, and watched in amazement while I ran around as if there was nothing whatever the matter with me. Yet somehow he misliked the drug, despite the apparent miracle of its working. He didn’t trust it. He told Mum that he wanted to discontinue the treatment – the results were just too dramatic. He was too experienced a physician to believe that any drug could just abolish an illness, when there was no question of curing it. It went against everything he knew about the relationship of the sick body with medicine.

The amazing thing was that Mum went along with him. Of course this was before she understood that a doctor might know less about what was wrong with her son than a magazine that someone had left in a dentist’s waiting room (rare condition or no, he should have done a bit of homework). But Mum had been a nurse, however
unsatisfactorily
and for however short a period, and nurses normally have a healthy disrespect for the doctors after whose decisions humbler
professionals
have to clean up.

Even about the big issue of misdiagnosis she was remarkably
forbearing
. By rights Duckett should have been disgraced in her eyes. Of course it’s always comforting to have someone to blame, but there was still an awful lot of taking-it-on-the-chin in the national culture.

Authority had prestige, right down to the level of village
policeman
and general practitioner. Even the postman had an aura
vulnerable
only to dogs. Mum accepted the mistakes of authority as having the force of fate, rather than anything as trivial as human error, and she never said a word against him.

In the earlier, lesser case of the steroids, she had taken his
professional
advice even when it was a substantial violation of common sense. Take the boy off these new-fangled drugs – they’re doing him far too much good.