Patient

by Ben Watt

  ‘It’s boring. I want a Pepsi. Can I get a Pepsi now? I’ll use my own money.’

  Dad exploded. ‘Right that’s it. All of you. Out. Come on – out.’ He rapped his son on the head with his newspaper. The boy started to cry loudly. Really loudly.

  I knew it. I knew it. We should have quit while we were ahead.

  ‘Arrrghh! Mum! Mum! He hit me. He hit me.’

  Mum was bristling now. She turned on her husband. ‘You brute. What would Nan say if she could hear us all squabbling in the hospital where she’s at death’s door?’

  ‘She probably could hear you with all the noise you’re making. Come on. We’re going.’ He levered himself out of the sofa.

  ‘I’m not going with you in a mood.’ She folded her arms and sat back. Both kids were crying now.

  ‘Look,’ said Dad. ‘There’s a bloke here trying to watch …’ He gave up. ‘Just come on. Up. Out. All of you.’ He gestured to them all.

  They all got up. He ushered them towards the door like a farmer shooing sulky geese, while we stared at the TV like nothing was happening.

  My fever responded well to the antifungal therapy. The barium from the second meal started to come through. The commode was full of it. It looked like Key Lime Pie. Within another forty-eight hours my temperature had stabilized one degree above normal. I was fed vitamin syrup, which made me puke, and iron tablets, which didn’t. I was anaemic and undernourished, but the Prof was worried I had spent too long in the hospital and seemed in danger of becoming soft-boiled, hospital-ridden, dependent. I know he had been hoping to discharge me a lot earlier had things not turned out so unluckily. He thought I should try some time at home, and so on the Friday of the August bank holiday, with my weight at only nine stone four and barely on my feet four days after a massive blood infection, he said causally that if there was no deterioration in my condition by the following morning and my temperature stayed down I could go home for the weekend. He left. I just stared at the ceiling.

  That night new pains began in my chest and lower back. I couldn’t twist or sit up. Paul, the houseman, was on duty. He was on a ludicrous shift, expected to be on call in any emergency for a mind-numbing forty-eight hours. He had just gone to snatch an hour’s sleep. I didn’t really want to disturb him. He worked hard. I liked him. The pains got worse across the base of my back and over the front of my ribcage. I lay still for another hour, until I couldn’t breathe without discomfort, and then said I ought to see someone. Paul arrived ten minutes later. He said it could well be muscle strain from my trial walk on the stairs earlier in the day, but he wanted me to go down to X-ray straightaway to check for shadows. It was 2 a.m. on the eve of my possible discharge. I didn’t want to think about home any more. I was collected by a porter.

  The corridors were quiet and the lift was cold. I was taken to X-ray down in Accident & Emergency. The Page Street department was closed for the night. Down in the dim back corridors on the ground floor the last thirty years seemed to have passed unnoticed. No major redecoration could have taken place for years. The fittings were utilitarian and coldly functional. Bare bulbs in steel-grey pendant tin-hat shades hung from high, shadowy ceilings. Colours were muted and dull. Signs were illuminated by low-wattage lights. Pale milky-white letters. Black pipes. It made me think of wartime, pallid skin and death. We passed a couple of the night admissions. Blood-sprayed Air Jordans showed from under the curtain of a silent cubicle. An Italian was trying to get into the service lift. He was lost, looking for his daughter. The porter had to stop him and point in the other direction.

  In the X-ray room I could barely move. I stood up from the wheelchair and gripped on to the chest X-ray periscope, a sickly koala on a tree, and then I was eased down on the hard trolley for abdominal films.

  ‘Breathe in and hold it there.’

  I took a shallow breath. The machine clicked hard and buzzed.

  ‘And breathe normally.’

  The X-rays showed up nothing. Back upstairs I slept a little after a shot of Voltarol.

  In the morning I felt in less pain. The Prof – amazingly – said I could still go home. I lay in the bed for a moment after he had gone, just looking round the ward, unsure of what to do next. My drips were gone. I could have called Tracey there and then, but I didn’t. Instead I picked up my washbag and shuffled to the bathroom. I took a shallow bath and combed my hair. I spoke to myself out loud. I brushed my teeth. I dusted myself with talcum powder. I turned around. I was aware of every choice I made. Everything was self-conscious, super-real. All mobility seemed to come from a multiple-choice test going on in my head. Do I open the door? Do I stand here for another minute or two? Do I go home now? Is this how prisoners feel when they finally get to go home? I slid the door back and walked out to the phone to call Tracey.

  ‘How soon can you come down?’

  ‘Why? What’s wrong?’ She was immediately alarmed.

  ‘Nothing’s wrong. Can you come and get me? They say I can come home for the weekend.’

  ‘What? Are you sure?’ She thought I was woozy with drugs again.

  ‘Yes. I saw the Prof. Honestly. How long can you be?’

  ‘I don’t know. An hour. Look, are you sure? I’m only just up. I’m just having some toast.’

  ‘Oh. OK. But come soon. See you soon.’

  ‘OK. Bye. Are you sure?’

  ‘Yes. Bye. Oh, can you bring me a belt for my trousers.’

  And I put down the phone, the blue phone on wheels in the fourth-floor corridor, and looked down the corridor at the people in it, the strung-out teenager nurses, the languid service staff, the young, confident, overtired doctors and the creeping patients. I thought of moving and getting up, but instead I sat there for ten minutes just looking at the back of my hands.

  I was worried about my main scar. It hadn’t healed neatly. When the last set of staple clips had been removed a couple of days earlier it was clear that the two sides of my belly hadn’t joined properly and a hole the size of a penny piece was opening under the strain. Seen from above, it looked like a Jammy Dodger. It was infected and had started to ooze a bit. One of the Prof’s team had popped down to look at it and had pinched and poked it in a very casual manner. It was being dressed twice a day with salt-soaked non-stick seaweed dressing. I could never understand how it would join up again, but nurses told me that skin and flesh in the belly repair themselves differently from a cut finger, building up tissue and filling in the gap. I was worried about looking after it myself.

  Tracey arrived. The clothes I had turned up in nine weeks earlier were brought up from the Patients’ Property. Everything seemed huge. I felt like a tortoise in its shell – thin, wizened, reptilian, my neck thin, my head small. I felt as though I could start walking and be able to take half a step forward before my clothes even started to move. I thought of David Byrne in Stop Making Sense. I belted my trousers loosely at the waist, afraid of my gauze dressing and my funny belly.

  Paul, the houseman, came up from pharmacy with a bag of drugs to take home and told me to report back after the bank holiday. I felt like a soldier going home on compassionate leave. I said a few goodbyes, but I knew I would be back. Tracey took my elbow, and we just walked ever so slowly downstairs and out on to the street.

  Seven

  The house was a tall, dark box of bricks; no lights, no family at the door; a huge space in which, as I paused in the hall, I felt my thoughts go spinning and careering up the stairs one by one, ricocheting off the walls, pulling on the handrails, leaving fingerprints on the paintwork. The carpet smelt as I remembered. Underlay. Sea grass. It made me think of dust again. The kitchen ceiling was too high. The window out to the garden was smeary. Tracey had shuffled things into piles. Tidy but not tidy. So unlike me. There was washing-up for one by the sink, unwashed breakfast things for one on the table, a rented video ready to go back, take-away menus. It seemed a lonely place, a place kept on hold. Lifeless. In the emptiness we were arm in arm, Tracey’s footsteps a patient
copy of my Zimmer-frame moonwalk. I could hear her head fizzing like pylons, her thoughts like pinballs, crashing around under the glass.

  We stood and just cried. Happy. Unhappy.

  We went back to the hospital after the bank-holiday weekend. We got there at 7.30 a.m. to see the team on their morning ward round. I shuffled into the ward to get undressed and back into my bed ready for their arrival, only to see them all gathered round it. I was alarmed. What had they found? Were they waiting for me to tell me bad news? My palms tingled. And then I saw there was someone else in my bed and I wasn’t on their minds at all, and I suddenly felt a painter being loosed and I was floating on my own, and the ward suddenly seemed big and not mine.

  A nurse tapped me on the shoulder and we went over to the day-room. A little while later the team came over. I told them I was OK. I didn’t know whether I wanted to stay or not. Home had been unrecognizable. Big, empty. I had crapped barium all though Saturday, slept on the little spare bed doped up with Voltarol and Ibuprofen on Sunday, and vomited back scrambled egg on Monday. My temperature had stayed down, though, and my white-blood-cell count was stable, so they said I could go home for good.

  DISCHARGE LETTER

  WESTMINSTER HOSPITAL

  Horseferry Road, SWIP 2AP

  Patient: Watt, Ben.

  Date admitted: 27 June 92.

  Date discharged: 1 September 92.

  Diagnosis: Churg-Strauss Syndrome.

  Operations/Treatment: 1 × diagnostic laparoscopy. 1 × diagnostic laparotomy. 4 × laparotomy and small-bowel resection.

  Recommendations for Future Management: Small-bowel diet. Vitamin and iron supplement.

  Domiciliary Services Requested: Nil.

  Fitness for Work: I recommend that this patient remains off work for four weeks.

  I ate wrong things for a while. Nobody knew what I was going to be able to eat, and the Dietetic Department was no real help. The single sheet of A4 from the dietitian was too depressing to look at and only told half the story: ‘A low-residue diet avoiding foods rich in dietary fibre, the substance in plant foods which we cannot digest. Avoid all fruits. Avoid all vegetables, beans and nuts, wholemeal bread and high-fibre cereal.’ It encouraged substitution with white rolls, cream crackers, cornflakes, milk puddings and build-up drinks. Eat butter, eggs, large servings of meat, it said. Madeira cake, ice-cream, hot chocolate and evaporated milk. Nobody drew my attention to the fat content of these foods and the huge difficulty I would have in digesting fat, or to the fact that many vegetables and fruit are water-rich and therefore easy to digest. I ate far too much fat on my meat and too much dairy produce, often emptying my guts in one go, the shit sometimes rising above the water-line in the bowl like an atoll. Sometimes I would vomit back my last meal as it went down, and then smile at Tracey and say how much better I felt. It seemed natural. It was how I thought it was going to be for the rest of my life. I was just so grateful to be home. At one point I thought I was only going to be able to be at home for six days of every week, returning to hospital for a night of drips and drugs for the rest of my life.

  I started on my long-term drug therapy aimed at controlling my immune system, involving slowly reduced amounts of steroids and immune-suppressants. My voice fmally came back. I slept in the afternoons, shuffled round the house in big jumpers, let Tracey take my temperature every few hours, sat with hiccups for a while, spent long periods just sitting on the bog with my trousers down doing nothing. Thinking. Looking out into the garden. Comforted. Somewhere safe. My spine remained curved for a long time. Standing up straight seemed an unengineerable feat. My shoulders fell forwards. My arms seemed really long. My muscles and bowel and scar tissue ached and tore and stretched. I felt like an underweight fast bowler after the first practice of the season.

  I dreamt of our house. Of the day we moved in. Almost a year to the day before I was admitted into hospital. And I dreamt vividly of the weeks that followed and all the building work. There had been dust in the air all the time. The banisters were permanently covered in a film of brick-dust and cement and plaster. I would wipe them down in the morning, and by the evening it would be back again. The carpets we had pulled up were matted with cat hair. Torn off corners of fibreglass cladding from the insulation panels lay on the floors in the basement like snagged sheep wool. The joiner said he wouldn’t go in the same room without gloves and a mask. He said the particles of glass were so fine they got under the skin and into the lungs and never came out. I stood back and watched the sanding-machines throw up powder storms of shellac and wood shavings. At night I imagined the dust was in my ears, on my pillow, in the fridge. For three days we slept on a sofa-bed that had been stored in a removals firm’s container on an industrial estate in the East Midlands. It smelled of damp and mustiness and wood smoke from the cottage where it had been before. One morning. I tore out a fitted kitchen with my bare hands, ripping up cork tiles and sheets of hardboard, kicking out plasterboard panels that cracked in half leaving chalk lines of plaster on the walls and floors, and took off ceramic tiles with a chisel, chipping away until the stubborn ones crumbled or exploded in a puff of clay. When the fresh deep-pink plaster wouldn’t dry out in the basement we used a dehumidifier to suck the moisture out of the walls. The rooms were airless and stuffy. I used to go and stand in them for a few minutes and scrape the fungus off the damp corners where the plaster met the brickwork. We wore dust-masks all day and opened windows, and I got out whenever I could. I kept an eye on my asthma, watching for any signs of deterioration, but it seemed unaffected, no different from usual. In the dream, though, I am blaming myself

  I told this dream to Dr Mackworth-Young. He said there was no reason to blame myself and it was too simplistic to try to retrospectively attribute my illness to one single moment. He said of course it was highly likely that the building work and renovations could temporarily aggravate an asthmatic, but there was no evidence to prove that they alone could precipitate life-threatening autoimmune disease. He said the world is full of hundreds of thousands of people who suffer from bad dust-related asthma who never ever develop anything else, and the fact that only a minuscule proportion of people does suggests that it is to do with something specific within those few individuals that, at a certain point in their lives, would respond adversely to any amount of antigenic stimulation. It is likely that I just have a predisposition for hypersensitivity in general, genetically configured or inherited. I could go and live on the top of a mountain, breathing in clean, fresh mountain air away from all pollen and dust, but I would quite possibly develop a new set of local allergies given time – all initially harmless but all in the end as potentially damaging when presented to my immune system at a given moment. Another doctor has recently pointed out I might as well blame myself for every time I have ever hoovered a floor or slept in an unfamiliar hotel bed. We come into contact with common allergens every day.

  Looking back, I suppose I could point to similar moments that could have been a catalyst but weren’t, suggesting that my final destructive response was indeed less to do with one big trigger and more a subtler combination of a genetic fault mixed with chance and bad timing. I have swept the soot out of industrial boilers as a holiday job, played long days of sport on freshly cut outfields right through my twenties, spent claustrophobic weekends in front of smoking wood fires, redecorated flats, lived and worked for two months in smog-filled Los Angeles, all with no immediate detectable adverse effect. So did any of these moments make any difference at all? It is like trying to answer whether the life experiences of a crazy person contribute to or cause their craziness or whether they were just crazy all along.

  I still find I wonder about the last few tantalizing weeks before my hospital admission. The fatigue and fevers and palpitations suggested a body already in distress, but did those earlier winter weeks of increasingly strong antibiotics for unlikely chest infections weaken or disrupt my immune system at a critical moment? Did I in fact suffer one key viral infection, a co
mmon cold even, that tipped the balance? I think about the homeopath’s tablets. If homeopathy works on the basis of administering a critical amount of that to which one is allergic to encourage the body to fight it on its own, did the tablets unwittingly light the touch-paper on an already volatile situation? I read an article recently about a woman who spiralled into fully blown autoimmune disease seemingly after ingesting Chinese herbs taken to combat her long-term worsening allergy. And what about my trip to Japan and its link with food poisoning? Ironically, some weeks after my hospital crisis was over, David Lindsay even revealed that, while most of the early parasite tests had come back negative, one had actually returned late and was inconclusively borderline-positive.

  More broadly, heredity, environment and diet and their relationships to the aggravation of allergy are all areas of current popular fixation. I read and watch TV programmes about genetic markers, T-cell imbalance, plant spores, acid rain, car fumes, aerobics-induced lung sensitivity, household chemicals, English dust mites versus American dust mites, wool blankets, indoor pets, sealed living conditions, post-viral weakness, overdependence on antibiotics, mutant flu strains, dairy produce, additives, red meat – the list is endless, and in the end I can only conclude that some of us are gonna get hit and some of us aren’t.

  A bad day. I’ve been home a week. I can’t sleep lying down because my back and belly hurt so much. I eat and then just fart all day, my guts heaving like sulphur pits and geysers where the crust of the earth is thin and hot, like some desolate Icelandic landscape. I eat and then vomit my food back undigested. I eat and then shit out the entire contents of my bowel, and watch them floating in the bowl like a sludge of ginger nuts or melted Caramac. I can’t walk without cramps, or a permanent stiffness in my groin. My shoulders won’t straighten. I walk to the shops with my hands instinctively hovering over my belly. I walk like prisoners walk whose ankles and wrists are chained to a central body belt, hunched forward, restricted. The small hole where my stitches haven’t healed properly is oozing every day. I soak non-stick seaweed gauze dressing in warm salty water and fold it diamond-shaped with tweezers, and then leave it in the hole to help it heal, and watch daytime TV with the sound off. My hair is thin and lies flat, full of static. My scalp is dry. I use moisturizer on my head. My fingernails and toenails are too soft for scissors. I sit at the kitchen table and want to roar. I want to throw back my head and roar like a circus bear, but the tears won’t flow properly. They seep out like water through rocks. My head is in my hands. Is this what grief is?