Adam Mars-Jones - Pilcrow

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 .

Sidelong Heather monopolising

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

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.