Cedilla

by Adam Mars-Jones

  Cheshire Far from Home

  In the Easter vacation of 1973, with very mixed feelings, I went to the Cheshire Home in Gerrards Cross for a respite visit. The name was mildly appealing, since ‘Cheshire’ had been one of the candidates for my middle name, because of exactly the Leonard Cheshire, veteran of the Battle of Britain, who had founded the Homes. The first Cheshire Home was actually Leonard Cheshire’s home – he lived there. He wasn’t disabled himself but was concerned for friends who were, and wanted them to have all possible control over their lives. I had a little fantasy about becoming something of a pet in the Home he had set up.

  Gerrards Cross was only a few miles from Bourne End. It was strange to drive so nearly home, and then to stay away. My only previous experience of respite had been the gloriously ramshackle all-male nursing home (‘næ wummen’) in Bognor, where I had gone after my knee operation. Clearly that establishment was an oddity, and more likely to be closed down double-quick than taken as a model anywhere else.

  Leonard Cheshire had been a Group-Captain. He would expect a certain amount of order and decorum. He wouldn’t want half-empty cups of tea or coffee left uncollected, let alone half-full pee-bottles. I couldn’t hope for ribald raillery. But a breeze seemed to be blowing through so many stuffy institutions, even Cambridge University, and I didn’t anticipate the Cheshire Homes would have double-glazed every window against every faintest zephyr of permissiveness.

  When I arrived, there was a sort of interview. It wasn’t called that, it was called an Informal Welcome, but I decided it was really an interview, and a proper interview at that. The ‘inter’ part of the word meaning mutuality. Back and forth. Exchange of views. I would expect to ask questions as well as to answer them.

  Mr Giles the Director told me what a privilege it was to be responsible for my well-being, which is just the sort of thing that puts my back up. I don’t believe it, and don’t see how they could expect me to. I don’t regard it as a privilege to look after me, so why should he?

  He went on with a nice flourish: ‘What I say to all our residents – I say “resident” however short their stay may happen to be – is that this is not a home, this is your home. You are what we exist for. You are our whole purpose. I may be called the Director, but I too buckle down and have been known to help with the washing-up!’

  As he spoke he held a propelling pencil over a printed form. I’ve always coveted propelling pencils but can’t properly manage the rotating mechanism that extrudes the lead. I have something of a talent for breaking them. The rotation factor does for me every time.

  Mr Giles asked for my name and address. ‘Which address?’ I asked. ‘Bourne End or Downing College, Cambridge?’

  This wasn’t very coöperative of me, since Gerrards Cross wasn’t near Cambridge and I had applied through the good offices of the High Wycombe local authority.

  ‘The permanent one, please.’

  ‘They’re both of them temporary, but I’ll give you my parents’ permanent address.’

  ‘If you don’t mind.’

  Mr Giles gave the hand holding the propelling pencil a soft shake, to disengage the cuff-link which was snagging the sleeve of his jacket. He asked for the details of what I could and could not manage without assistance. Did I have any special dietary needs? I said I had a very ordinary dietary need, which was that blood should not be shed in the process of feeding me. I pointed out that someone with my physical limitations would be much more likely to need help if he ate meat, hacking at the fibres of tissue as tightly knit as our own. He pursed his lips but made no reply.

  Then I started on my own questions. ‘Thank you, Mr Director, for making me welcome. Perhaps you can tell me where my locker is.’

  ‘Your locker?’

  ‘Where I can keep private things safe and secure.’

  He looked doubtful. ‘If there’s anything special I suppose I could keep it for you.’

  ‘So residents have no privacy?’

  ‘People come here for respite. For comfort and quality of life, not for privacy as a be-all and end-all.’

  ‘I can’t help feeling that privacy is part of the quality of life. Are the bathrooms lockable?’

  ‘That wouldn’t be appropriate. It is in the bathroom that many of our residents need most help.’

  ‘Well, I don’t.’ It was true that I didn’t need help to go to the lavatory as long as I could use my bum-snorkel, though bath-times were a different matter. I wasn’t planning solo acts of dunking with the help of a hoist. I was expecting full use of the facilities, viz. nurses on tap to make bathing a smooth and convenient process. Leonard Cheshire would expect no less. That was his whole idea, to have certain things taken for granted – and why shouldn’t privacy be one of them?

  The fuss I was making about this issue was purely symbolic, in the sense that I had brought nothing with me that needed protecting. But I had got used to the idea of a lockable door. There was a principle involved – why shouldn’t another inmate, less accustomed than me to standing up for himself, have somewhere to stow his girly magazines or the diary in which he vented his loathing of the staff? ‘I’m confident that you have a lock on the bathroom in your home, to prevent Mrs Director from trotting in at a moment that would not be appropriate. This office, too, seems to have a lock …’

  ‘You’ve made your point, John.’ I don’t know why people say that, when all it means is that you have articulated very clearly into an ear which is sealed against you. ‘We can’t hope to provide an environment tailor-made to suit every individual, however much we pride ourselves on our quality of care. You have high standards, which is all to the good, but perhaps there should be a certain amount of adult compromise. Of give and take. You should take us as you find us.’ Another vapid formula.

  ‘Certainly, Mr Director. And perhaps you will take me as you find me.’

  An abrasive little charmer

  It was intoxicating, it aroused my baser nature, to be dealing again with people who had undertaken an obligation, after so long negotiating daily life in an undergraduate setting where nobody owed me anything. Finally I could let it out, without too much fear of the consequences, the rancour of dependence.

  The Director’s propelling pencil descended again on his form. There was still a lot of blank space on it – I didn’t need ‘toilet attendance’ and I could eat for myself. Staff weren’t even expected to administer medication in my case. In those respects I was a model of the undemanding resident. Yet the pencil descended on a box near the bottom of the form and wrote a single word.

  In CRX days I had taught myself to read upside down. It was far the best way of keeping track of what was going on – the medical staff played their cards very close to their chests. I hardly needed that skill, here in the Director’s office, to pinpoint the word he was writing down as a summary of my character and attitude. He wasn’t writing down, ‘An admirable resistance to institutional conformity’, or even ‘What an abrasive little charmer!’ but simply ‘Difficult.’

  Presumably all the residents had been given roughly the same speech of welcome. They hadn’t been tempted to take it at face value. If they thought of themselves as being at home they kept it to themselves. They behaved like prisoners who had been told that if they behaved themselves they wouldn’t actually have to slop out their cells.

  I was shocked by the cowed atmosphere at meal-times. I know male undergraduates are boisterous and no reasonable point of comparison for a dining room full of disabled people, whether fully resident or in need of respite. I felt I could screen out the variables. This was different. This was a roomful of people, most of whom couldn’t walk, trying to live on tiptoe. This was numb despair, chewed thirty-two times and mechanically swallowed down.

  If the Director called in on the dining room people would actually eat faster (both those who needed help and those who could manage by themselves) as if to ingratiate themselves with him with a show of appetite.

  Early on in my stay I was
trying to strike up some conversation when everyone went quiet. ‘What’s the matter?’ I said. ‘Why the two minutes’ silence? Armistice Day isn’t for months.’

  ‘Shh! Mr Giles is walking past.’

  ‘Yes I see that. So what?’

  ‘It’s not respectful to talk when he’s doing his rounds.’ Apparently we were supposed to be good little girls and boys, however grown-up we were.

  ‘I see. We have to KEEP QUIET! when the director WALKS PAST!’ Intentionally I raised my voice, so that everyone winced. ‘So much for the home from home.’ As far as I was concerned this was a Cheshire Far From Home. A Cheshire un-Home.

  What the establishment needed was to have all its moral windows opened, every cobwebbed corner swept with a dynamic broom. I volunteered. Since the prevailing mood was of cringing, I set myself to swagger. Let everyone else impersonate refugees if that’s what they wanted. I would behave as if I owned the place. Obviously I had advantages – I was just passing through, and I had more mobility than some. It seemed worthwhile to show them that abasement wasn’t a necessary condition of life.

  I wasn’t trying to be popular. It was fine by me if I was hated by the other residents, just as long as I got the message across that we were worms by consent, and could just as easily choose to be pests.

  The Director wasn’t actively a bully, but his régime inflamed those who were. One cleaner called Molly had the knack of looking as wholesome as a pear on a dish as long as there were other staff members around, but came nastily alive when she was on her own. She carried the shark gene, the one that delivers sure knowledge of what can be got away with.

  She had no more right to tell people what to do than the postman, though I suppose she could legitimately ask someone to move so that she could clean where they were. Everyone lived in fear, though, and she took full advantage. She would hiss to some rather faded lady with multiple sclerosis, ‘I don’t want you talking to him. I won’t tell you again.’ Him being me.

  If I ignored her she would hoover immediately behind the wheelchair for an exaggeratedly long time, so that it was impossible to think of anything but the grimaces she must be making, or the passes with an imaginary knife.

  Everyone let her walk all over them, saying ‘Anything for a quiet life’ to themselves until they had no life left. Louise, the woman with multiple sclerosis, would wait until Molly was long gone from the day-room before she dared to whisper, ‘You know what? I wish I could whack her on that bum of hers.’

  ‘It’s a big enough target. Would you like me to do it for you? Save you the trouble?’

  ‘You … wouldn’t … dare!’

  ‘I think you know that I would. I will. Shall we sell tickets? Everyone will want a ringside seat.’

  ‘No. Just do it for me. Make sure I have a good view.’

  ‘Agreed. It will be a royal command performance, just for you.’

  So the next time Molly was in range (and bending over) I whacked her with my stick. Louise watched goggle-eyed as I undertook my little swing. The impact was less than mighty, and not only because of the padded nature of the target. My arms can only describe a brief arc, and to land the blow at all I had to lean over at a precarious angle. There was a muffled thwack, though I tried to convey by way of a certain solemnity that this was a community reprisal rather than an act of individual impulse.

  Weakness is not a weakness. Lack of physical force is not a character flaw. These formulas need work before they can turn into inspiring slogans, though on some deep level they are so clearly true. Till then, the strong must be whacked whenever the opportunity arises.

  Molly spat with rage, but I stood my ground. ‘There’s more where that came from,’ I told her. ‘I’m not afraid of you, and I’m only doing what everyone here would like to.’

  The ladder of pain relief

  Which was true, though my status as a visitor protected me. If I made a bad smell I didn’t have to sit in it indefinitely. I could trundle away, drive away if necessary, from any repercussions. The difference between me and most of the inmates made me feel virtually able-bodied, which was almost intoxicating. As long as I played the part of the resident vigilante I could forget that I was a resident at all.

  It was perversely invigorating to encounter actual opposition rather than passive difficulty. A level of energy which was hardly enough to meet the challenges of student life seemed prodigious in this setting. I fizzed with it. By my standards the inmates had hardly stuck their heads over the parapet of the day before they began to shrink back down towards sleep.

  The doctors attached to the Home earnestly collaborated on the goal of a quiet life. They prescribed with a free hand. I clambered up quite a few of the rungs on the ladder of pain relief in my time at the Cheshire Home.

  Under Flanny’s guidance I had broken with Ponstan and Doloxene, and had struck up a rewarding relationship with Fortral (pentazocine). She wasn’t trigger-happy with her scripts, though, and she knew what she was dealing with. She said, ‘We’ll try you on this stuff but you’ll need to be a bit careful. It’s not quite DDA but it’s not far off.’ DDA meaning Dangerous Drugs Act. That worked fine for quite a while, but now I needed something stronger.

  At the Cheshire Home Dr Pye started me on Omnopon (papaveretum) after I’d sweet-talked him a bit. Any gardener will tell you that the papaver- bit means poppy. You’re homing in on an opiate.

  Under Dr Pye’s guidance I learned to inject an ampoule of Fortral intramuscularly. I’d do it in the top of the leg. That provided exemplary pain relief, and even the ghost of a buzz. Ampoule – is there a more seductive word in the language?

  The nurse said, ‘He seems to manage it quite well,’ and Dr Pye said, ‘Let him have one whenever he wants.’ I became quite a dab hand with the needle. There was definite satisfaction in doing a neat job. I was making great strides in my effort to play doctor as well as patient, the worm Ouroboros medicating his own tail.

  The other inmates had their routines, and I had mine. On the first evening, after supper, I sang out, ‘So who’s for the pub?’ I didn’t really expect an answer, though I wasn’t quite prepared for the shocked quality of the silence that followed. It’s true that I would have been stymied if some of the residents had taken up the suggestion (Louise, for instance) but some of the cerebral palsy cases were more or less roadworthy. Their paralysis was largely psychological.

  I dare say that from the point of view of the more settled residents I seemed to be carving out a syndrome of my own, as a florid psychotic with delusions of invulnerability.

  My show of initiative shocked the staff as much as the residents. A nurse asked timidly, ‘When will you be back?’ To which I replied with enormous satisfaction, ‘Don’t know. Late. I don’t see that it matters. There’s a night nurse, isn’t there?’

  ‘Well, yes.’

  ‘There you are, then. Don’t wait up!’

  My exit would have been even more impressive if I hadn’t needed a certain amount of help to get into the car, but after that I was launched on the open road, destination the Black Lion in Bourne End.

  I was pretty sure that Malcolm and Prissie Washbourne, veterans of the Battle of Trees, would be there. If they weren’t I would chivvy the barman to roust them out with a phone call. They were there. Perhaps because they were already a few drinks to the good, they greeted me entirely without surprise. That’s the whole virtue of a local – people are always popping in. I ordered my usual lime juice cordial and mounted (with help) the stool next to Prissie’s. From that narrow throne I started to pontificate in the style which the elevation of the furniture seemed to demand.

  Prissie said I should write up my experiences for the local papers – or the national press, why not? It was hard to imagine that such an exposé of low-level misery would find much of a readership. Better, really, from a journalistic point of view, if the inmates were being starved and brutally bludgeoned rather than bossed about and subjected to ominous hoovering.

  After
the pub closed we went back to the Washbournes’ for a nightcap and to listen to some music. It amused them to be driven home the tiny distance in the Mini. It’s possible that Mum, putting out the bottles for the milkman, could have heard us talking as we left the car, or caught raucous laughter of a familiar timbre wafting over from the open windows four doors down. Neighbours might have asked her if that wasn’t my car parked outside the pub the night before, and seen later at the Washbournes’. Any of this would have given her pain, but there was no remedy for that. The Black Lion was the only pub where there was a welcome for me, and I certainly wasn’t going to stay in the Home in the evenings communing with the zombies.

  I didn’t leave the Washbournes’ that night until nearly one in the morning. Despite my bravado I wasn’t sure how I would be received back at Gerrards Cross. I could see no lights from the road. Perhaps I’d been locked out as a way of teaching me a lesson. Even Mr Toad has his moments of doubt, before he sounds the horn – poop! poop! – that summons his welcome.

  I needn’t have worried. Out swept a large and very capable woman, very Irish, who introduced herself as Eileen. She had hair dyed black and a face that was dark pink, almost the colour of blackcurrant fool. She looked at me merrily and said, ‘And you must be the bad boy John.’ She was in a high good humour, not in any hurry to have me go to bed. She was happy for me to sit up with her and keep her company.

  This was the first time I had properly understood that day staff and night staff are different. They’re as different as night and day. Day staff have too much to do, night staff have too little. Day staff want compliance, but night staff enjoy stimulation. Eileen wanted to know which pub I’d been to, who my friends were, my history and plans (precious few). She didn’t pry. She just wanted to know everything.

  Astringent, anti-tussive and vulnerary

  During my time in the Cheshire Home the nights gave back what the days took away, what with the Black Lion and the warmth of Eileen’s welcome. She taught me to play backgammon, and also to keep a keen eye on the pieces in case they moved of their own accord, which sometimes happened. We didn’t play for money but for sweets, Maltesers at first and then Smarties for preference since they were less given to rolling.