Patient

by Ben Watt

  I felt low to the ground. The suspension was hard, the revs high. The clutch was leapy under my foot. The gearstick hummed in my hand. Wind whistled through the half-opened vents and the cracks in the doors. I was exhilarated and I was frightened too, but I didn’t say it. And we were bubbles within a bubble. In an egg. Eyes forward. Watching different versions of the world fizzing by through a smeared windscreen. Speed. Light. Sound. Memory. All the little things that keep us different and make us the same. And my hand was only six inches from hers and I could have reached out and I know she would have responded but I didn’t, and I kept it loosely on the gearstick and felt the tarmac hurtling away from under me.

  Eight

  Galway’s damp, briny air is making Tracey’s hair fall flat. We round a corner near the Spanish arch and a gust of squally air brushes my lips with salt. We pass along by the quay and upstairs into the quiet early evening of a restaurant, where we settle down to the last meal of our summer tour. Grilled sole, boiled potatoes, oysters and Guinness – low fat, low fibre.

  It’s July 1993, nine months since I left hospital, and in the past few weeks we have played seventeen concerts, touching all points of the local compass save the far south – Glasgow, Ipswich, Guildford, Galway.

  My blood tests have been consistently good. I have reduced my drugs to less dependent levels, and the disease is currently showing no signs of returning. With it contained, in many ways I am left only with the shadow of the damage it caused, which is only what someone else might be enduring after major abdominal surgery following bowel cancer or a bad road accident or a shrapnel wound.

  I marvel at the baroque descriptions in the final medical report of my hospital admission that I now carry with me – ‘epigastric abdominal tenderness and mesenteric angina’, ‘multiple organ tissue eosinophilia’, ‘small-bowel ischaemia and infarction’. My gut locks up every few weeks, but I can deal with it now on my own without needing an emergency bed. The old hospital has closed. It has been merged into the new Chelsea and Westminster. It seems strange thinking of not going back there again if I ever need a bed. I think of the empty rooms quite a lot. Like a disused airfield.

  So what do I eat with only 15 per cent of my small intestine left? Well I could begin with what I don’t eat. No cheese, no butter, no oils, no eggs, no whole milk, no nuts, no pulses, no pasta, no chocolate, no cake, no crisps, no pastry, no biscuits, no brown bread, no greens, no lamb, no sausages.

  So what does that leave? Well, lean grilled and roasted meats – chicken, venison, beef and turkey. Most grilled and poached fish except the oily ones like salmon, sardines and kippers. The insides of baked potatoes, or boiled spuds, white rice. Twenty-five per cent of my diet is made up from white breads. I eat vegetables with a high water content and low dark-green-leaf content – courgettes, depipped tomatoes, onions, lettuces, mushrooms. And low-pip mushy fruits – strawberries, grapes and peaches. Low-fat yoghurts and Frosties. Meringues are good. All the fat of an egg is in its yolk, none in the white. I drink skimmed milk, fruit juices and Coca-Cola. Sugar is my friend. I once spent £100 asking a top gastro-enterologist in Harley Street what improvements he could make to my diet, and all he could think of was boiled sweets.

  I’ve learnt to use other rich flavours to make up for a Western diet’s reliance on fat and oils – soy sauce, mustards, balsamic vinegar, honey, ginger and lemon juice, fresh herbs. Alcohol has become central. Other expert advice from a leading doctor recently was beer and brandy. High in sugar. High in calories. Alcohol is absorbed through the stomach, not the gut, and the rest is water. It’s hard to beat a pint of Theakston’s.

  Of course the big drawback in all of this is quantity. Small portions. No snacks. Ironically, in some aspects it bears a resemblance to many common slimming diets, but it differs in its strict avoidance offibre and exacts a high penalty for misjudgement of amounts. Spasms, colic, diarrhoea, enforced fasting. I keep a meticulous diet diary, balancing daily nutrients like an alchemist. My small intestine is now very abnormally shaped. I lost almost all my jejunum (the long middle part), the part that absorbs most of the goodness from food, but I have been left with the majority of my ileum (the lower part), which takes its time over any remaining food digestion and absorbs water and essential minerals in a slowing-down process. I suppose if I had to lose either I’m left with the better option. My colon, the large bowel, which tumble-dries the waste, is unaffected.

  I hover around eight and a half to nine stone. Not a lot, I know, and proving to be almost impossible to improve upon without resorting to unacceptable measures like a naso-gastric drip feeding me liquid sugar or bucketfuls of high-calorie stir-ins – powdered glucose with supposedly no additional sweetness. I tried them and they just depressed me. My weight is stable at least. I wear twenty-eight-inch-waist trousers, having been a thirty-six and buy shirts in small not large any more. I once touched thirteen stone in 1989. I watch my friends ballooning into middle age.

  I’ve started having nightmares. They are not frequent but always located in strange, unrealistic landscapes where I’m under pressure from childish monsters and outsized shapes and shadows. Often the narrative is similar – a situation where if people don’t act on my behalf immediately I will be in serious danger, or worse: they cannot see the imminent danger I’m in, because it appears unthreatening to them. These dreams can cause me to shout out in my sleep, waking Tracey, or sometimes she will wake to hear me grizzling quietly and have to shake me gently awake. Are they spectres of all those unresolved days of non-diagnosis or the moments of anaesthetic and resection coming back to haunt me after all?

  Occasionally I will sweat heavily in the night for no apparent reason. No rising temperature. No spike. No fever. Just some kind of a disturbance. I wake and think I have just had a bad dream, but cannot remember. Only the damp sheets point to one. Sometimes my temperature can drop instead, unexpectedly, and I can get the shakes and shivers and need extra blankets or a heating-pad to get me warm again. I will fall asleep under all the swaddling, only to wake roasting half an hour later. I prop myself up on pillows and lie awake, cooling down for forty-five minutes, listening to the pockets of air popping and puttering in my belly, the whining of the territorial tom-cats down in the neighbouring gardens through the open window, the clank of metal bins being filled behind the high-street restaurants after kicking-out time, or just the tick, hum, click of a house at night. But mostly my nights go by uneventfully, albeit in fits and starts – two hours here, three hours there. I sleep so lightly mostly, like I’m only just below the spun coating of waking and I could open my eyes and sit an exam at any moment. The drugs probably play a part in this, regulating and seeping and frothing through my body at night.

  As for the cause of all this enforced change, I am told that with this illness I am at the forefront of medical knowledge in the fields of immunology and rheumatology. Until the late seventies and corticosteroid treatments most people with serious Churg-Strauss Syndrome died. Many of the defining features of the disease as outlined by Churg and Strauss in 1949 were discovered at autopsy stage. It is, needless to say, extremely rare. Thirty cases were reported in twenty-five years. Even in a major study at London’s Hammersmith Hospital between 1976 and 1982 only sixteen contemporary cases were presented, to which a hundred or so other potentially but inconclusively related cases were added from medical literature. It should be said that these low figures are partly due to the narrow range of criteria needed to define the disease, and to the fact that most of the criteria appear in other related conditions, often deflecting a full diagnosis.

  The future is largely unbroken ground, and no one can give me a truly confident prognosis. Blood tests will show the first indications of climbing eosinophils, pointing to unusually vigorous immune activity, so I go to the hospital every couple of months. I sit in the out-patients’ clinic for my regular check-ups, with little old ladies in with their creaking knees, and read leaflets on the more common related conditions – lupus, rheumatoid ar
thritis – each of them centred like mine around a dangerous imbalance in the immune system.

  My asthma has returned a little bit, but that is apparently common. With careful steroid and immune-suppressant treatment things look promising. Survival rate is up to 90 per cent now. There is even a chance of a full withdrawal from the drugs, but the disease would always be in the background and if it were to return its pattern might not even follow the same triggers. The same factors would have to be present – genetic quirk, a series of viral or allergic catalysts, blood abnormalities – but, like a mosaic, the same fragments could make a different picture when placed side by side in a different order. All anyone will say is, ‘With any luck …’

  But I won’t be held back. We played in London last week. Half the hospital came. Most of them hadn’t seen me for almost a year. Dr Mackworth-Young was stunned. He could only ask Tracey how she remembered all the words. I find my voice has a new-found strength to it, a greater projection, more meaning. Does it resonate more in a hollower body? The sound is on a taut string, vibrating, humming like overhead electricity cables. It comes out of my mouth alive, and restless to communicate energy and understanding.

  The room at the Ardilaun that night in Galway was packed. Chandeliers hung from the low ceiling. The festival atmosphere was strong and willing. We played our songs for an hour and a half. People clapped and drank. It was good.

  A month after Galway – almost a year after I left hospital – we took a holiday. We flew to New York, took a train into Connecticut, and hired a car. The doctors said I might as well go for it, so I did. We drove to Cape Cod. It was early September. My skin tanned and stretched over my ribs like deck-chair canvas. My scars wouldn’t change colour, not even the little ones on my wrists and chest. They stayed white, like marker flags on a playing-field. In the driving-mirror I noticed how I now have crow’s feet in the corners of my eyes and the skin hangs looser on my cheeks even though the sun had tightened them and polished them up like a hazelnut. My eyes stood out from my face with the grey-blueness of sea views on clear November days on the Humberside coast. My face was like a new friend.

  With Tracey beside me it was all too corny for words. On the American road. Babe in the front of a rented car. We couldn’t stop smiling. Hospital taught me a new language with a different rhythm that goes on inside our heads all the time, a ceaseless stream and current of thoughts and words, babbling and pulling through all our waking hours. I learnt to listen to it, like listening to the sea from a bedroom window. At first you don’t hear it, and then you realize that it is underpinning every sound, and it has its own rhythms and pulse. And it took me elsewhere, shell-less, into myself, where meaning came from loneliness and calmness, acceptance, adaptability, gratitude and making peace with oneself.

  But there in the car we were talking the old language again, and it was good. When Richard Ford said that love was transferable, I think he meant (with typical realist lyricism) from place to place and person to person, but it can also mean from time-of-life to time-of-life, deepened by change, in the same place with the same person. It is, I suppose, the shell on our shell-less back – a place to live in, to hide in, to carry with us, protection. Without it I feel we could all be nothing. Crushable.

  ‘Enjoy yourself,’ a doctor said to me before we left. ‘You’ve not had the luck.’

  It goes without saying that good and bad luck are only two sides of a flipped coin, but even when good luck prevails it is the proximity of bad that often bothers me and I can’t enjoy myself but can only reflect on how close I am to the other. We climbed a remote mountain on the isle of Eigg once. Near the top, wearing only stupid sandals, Tracey slipped. I caught her just in time and pulled her up. She could have fallen a long way. We were so badly dressed. We sat in the low, swirling cloud, lonely, fortunate and foolish, wanting to be home, frightened by bad luck’s proximity.

  It doesn’t do to dwell on my bad luck, nor does it do to bury it, but it takes time to understand it and to round it into the good times. I thought that as I was driving.

  The sun was warm and the sky as clear and fresh as the morning glory that grew by the roadsides. Gulls wheeled overhead in the coastal towns. In Watch Hill, Rhode Island, where we stopped overnight, there was good surf and warm waves. The morning before we left, I slipped into a new pair of size small mustard-orange shorts with a drawstring waist – half price in an end-of-season sale – and waded into Long Island Sound. The sandy floor was gravelly and pebbled. I stuttered forward and then leant out, timidly pulling myself through the water in a half-hearted breast-stroke. My stomach muscles felt weak. The waves were welling up, swollen and strong. I bobbed above them. I could see Tracey on the shore, under the umbrella, watching me all the time.

  When the big wave came I couldn’t rise above it. It crashed down on my head, surging and bubbling. It dragged my body down. I let go for a moment. I felt free and unafraid. I gave myself up. And then I was staggering to my feet in the shallows, happy and victorious. And I could see Tracey on the beach, laughing and clapping her hands.

  A Note on the Author

  Born in 1962, BEN WATT is a musician, singer, songwriter, DJ and author. First published in 1996, Patient: The True Story of a Rare Illness, was a New York Times Notable Book of the Year, a Sunday Times Book of the Year and was shortlisted for the Esquire Non-fiction Book of the Year. His second book, Romany and Tom, was published in February 2014. He is perhaps most well known for his twenty-year career in altpop duo Everything But The Girl (1982–2002). He is also an international club and radio DJ, and since 2003 has run his own independent record labels Buzzin’ Fly and Strange Feeling. Having recently returned to songwriting and live performance, his first solo album for thirty years is expected in 2014. He lives in north London with his wife Tracey Thorn and their three children.

  By the Same Author

  Romany and Tom

  First published by Viking 1996

  This electronic edition published in 2014 by Bloomsbury Publishing Plc

  Copyright © Ben Watt, 1996

  The moral right of the author has been asserted

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