Adam Mars-Jones - Pilcrow

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.

Language lesson

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.

Years in a kiln

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.