Patient: The True Story of a Rare Illness

Patient: The True Story of a Rare Illness

by Ben Watt

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Overview

In the summer of 1992, on the eve of an American tour, Ben Watt, one half of the Billboard-topping pop duo Everything But The Girl, was taken to a London hospital complaining of chest pain. He didn’t leave for two and a half months. Watt had developed a rare life-threatening disease that initially baffled doctors. By the time he was allowed home, his ravaged body was forty-six pounds lighter and he was missing most of his small intestine. Watt injects pathos and humor into his medical nightmare, writing about his childhood, reflecting on his family and on his shared life with band member and partner Tracey Thorn. The result is a provocative and affecting memoir about life, illness, and survival.

Product Details

ISBN-13: 9780802135834
Publisher: Grove/Atlantic, Inc.
Publication date: 08/10/1998
Pages: 192
Product dimensions: 5.50(w) x 8.25(h) x (d)

About the Author

Born in 1962, Benn Watt is a musician, songwriter, and DJ. He is also an acclaimed author; his most recent book is the memoir Romany and Tom. He is perhaps most well-known for his twenty-year career in alt-pop duo Everything But The Girl (1982-2002). He is 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, “Hendra”—his first solo album for thirty years—is now available on his new imprint Unmade Road. He lives in north London with his wife Tracey Thorn and their three children. Follow him on Twitter: @Ben_Watt

Read an Excerpt

CHAPTER 1

It's June 1992. I am lying perfectly still on top of the sheets on a wide, clean bed in a private hospital near Harley Street. I have my shirt off. I am having a heart test - an electrocardiogram. The nurse has just left and sent a doctor to see me. The doctor has just popped her head round the door and asked me if there is any history of heart disease in my family. I said no. She tells me she won't be a moment. The door closes. I am twenty-nine. A few minutes pass. A man enters. He is wearing a crisp pink shirt with a white collar. He has kind eyes and a racing-driver's moustache. He looks like he knows a thing or two. He smiles and sits on the edge of my bed. There is bad news and bad news. The bad news is he thinks I am in the middle of a long, slow heart-attack, and the bad news is, if not, then he thinks I am about to have a massive one. I smile back.

I have had difficulty walking and breathing for ten days. Pains in my chest. Pains in my belly. Aching pains in the joints in my left arm. In my calves. I've been clutching hot-water bottles, sitting under a blanket staring out at the garden. I've been rocking back and forth on the kitchen chair for sometimes three-quarters of an hour, pressing my hands against my ribs, crying, talking to myself out loud, telling Tracey not to worry. She has stood before me, pale, not knowing whether to act. Later, I have lain in bed with the light out, Tracey beside me, and stared up at the dark ceiling, and listened to her staring too.

My lungs feel raw. I am taking massive doses of inhaled steroids. My asthma has been chronic. The other day I cried in front of my GP and walked out. I am seeing an acupuncturist twice a week. Yesterday I cried in front of her. She says my energy is alarmingly low. Last week I saw a homeopath. I told her all I know. I began at the beginning. She gave me tablets. Since then my asthma has improved but the pains have increased. Is this meant to happen? Is it even connected? I don't know what to do. The taxi was late. I had to rush. I had no breath. I walked like an old man. In the waiting-room, I had to ask the nurse for a glass of water. I read the property pages in an out-of-date Country Life, and now I have been told I am having a heart attack.

In many ways that appointment at the London Clinic was really the end of a beginning that had been going wrong since Christmas. I'd been a mild asthmatic for a few years, but as the new year came I was unable to climb the stairs and my lungs were just aching all the time. I would often wake in the night gasping for air, inhaling as though through thick gauze, and for a week in January I had to stay in bed all day, weak and still, frightened to breathe. I was treated with three strong antibiotics for a possible chest infection. They did nothing. Probably viral, my GP said. All the same, I moved from the basic Ventolin inhaler to the harder stuff-Intal, Serevent then Pulmicort. When my GP finally referred me to a consultant chest specialist, after four more bad weeks and two short courses of oral steroids, my symptoms were confirmed as still nothing more than those of a recognized asthmatic with a history of hay fever - I'd had skin-prick tests in 1989 following bad sinus problems, which had detected a not-uncommon hypersensitivity to household dust mites. The chest specialist gave me turbohalers. The big ones. The 400s. My GP didn't want to pay for them.

Things improved temporarily. I took a week's holiday in Crete, thinking warm fresh air would help, and even flew to Japan with Tracey and the band to play ten days of concerts where I couldn't take deep enough breaths to sing all the words. But within another fortnight I was home again and in trouble. I went back and asked the chest specialist how serious he thought things were. He said four out of ten. I couldn't believe him. I was up to 3,200 mg of inhaled steroids a day.

At home we tried to keep the house scrupulously clean, vacuuming and dusting three times a week. We bought a special vacuum cleaner for asthmatics, as well as bedding and pillows that discouraged house dust mites. I bought my own peak-flow meter to monitor the strength and puffin my lungs and just watched my breath get shorter. I would flake out early in the evenings, my body gripped by lassitude and viral pains in my shoulders and my elbows. All day I would monitor my food intake, trying to find a pattern that might link my asthma with something I was eating. I avoided dairy produce, caffeine, red wine, shellfish, oranges and tomatoes. I tried supplements - multivitamins, evening primrose oil, garlic oil.

By May, all evening meals were leaving me wheezing badly. My eyes would be shot with blood for twenty or thirty minutes at a time. I would have fast furious sneezing attacks - repeated sneezes one after the other, bang, bang, bang, for four or five minutes. I took up the Alexander Technique to try to relax and to open my lungs a bit more. I had a few lessons and would finish supper by lying on the floor with my knees up, trying to calm the pounding in my chest, the palpitations in my arms and my flushed neck and face. Friends would come round and I'd say it was normal.

In the days running up to my electrocardiogram my asthma suddenly seemed to ease off. It was like a storm passing over. I thought maybe the homeopath's tablets were working, but on the afternoon before the test I had forty minutes of chest pain like never before. I called the chest specialist myself and told his secretary I had to see him. I thought it was an emergency. I'd pay privately. She fitted me in that evening. I went down with Tracey. The taxi-driver thought we must have just argued we were so quiet. We were both scared. The consultant was measured and calm. My distress seemed to make no impression on him, but he arranged a private chest X-ray and an ECG for first thing in the morning. That night at home I lay curled up in the middle of the bed and thought if I took one more breath my chest would burst open.

Even so, looking back on that morning at the London Clinic I couldn't help thinking I was being wheeled fully clothed to a waiting ambulance for the wrong reasons. A heart attack seemed so removed from my experience and, moreover, the homeopath had said I'd get worse before I got better. I was a young man, a treatable asthmatic, not an old man with a weak heart. A bed had been found for me in the Coronary Care Unit at Westminster Hospital. The unit at my local hospital, the Royal Free, was full, with three waiting. Coronary Care? How old was I? It must be a mistake. Cruising through central London I felt bewildered. The ambulance man asked if I felt OK. I said I supposed so. It was summer outside. Tracey was on her way.

When we arrived it was midday. The place was humming with people. I was checked in by a receptionist and left against the wall by the men's loo.

'You be all right?' said the ambulance man as he was going.

'Yes. What now?'

'Don't try and get up. Sit quiet and someone will be down in a minute. Take it easy.'

He left.

Take it easy. Don't try and get up. I sat calmly in the wheelchair, expecting a seizure at any moment. He'd left me facing the wall. I felt humiliated. Disabled. A pool of water was seeping from under the loo door.

A nurse came for me. Up on the heart unit I was told to get undressed 'slowly' and to he down 'gently'. Curtains were pulled round the bed. It was close and hot. I listened to voices, and watched the feet below the curtain as they hustled back and forth. A male nurse in a white tunic arrived with a trolley and another ECG machine. He took out a yellow Bic razor and began shaving little tufts off my chest with no water or soap. I was fitted up with half a dozen suckers, each wired into a multicore leading to the machine. I thought of little toy bows and arrows. Some of the suction pads wouldn't stick, so a bit more hair was shaved off. I could feel my heart beating. I kept thinking I could hear it stopping.

Tracey arrived. She had my soft grey shorts in a carrier bag. We sat behind the curtain. She had chased me across town, arriving at the London Clinic expecting a calm chat with a doctor only to be told I'd just been taken to Westminster Hospital in an ambulance.

My pulse was taken and a thermometer was slipped in my mouth. My blood pressure was read through a huge black Velcro tourniquet. The male nurse left. He asked if I wanted anything. I said not really, but then stopped him as he was going and said a wire coat-hanger for my clothes. He looked surprised but said he'd fetch one. I thought everyone was talking about me — such a young man on a coronary care unit.

Two doctors arrived. One sat on my bed, the other stood. They looked like they'd been brought in from pressing work. They each wore blue pyjamas and a shower-cap. The one standing had on white plastic clogs. Are these people doctors? Is this what they wear? The doctor sitting in front of me had a hot, damp face. He looked straight at me. He seemed kind. His eyes were intensely concentrated in the moments he was talking. He asked for pain descriptions, a little history.

After they left, a young nurse came with a clipboard and a Biro. She had a little questionnaire for me. She wrote slowly in fat, rounded, teenage handwriting, touching the corner of her mouth with the tip of her tongue as the pen hit the paper. 'My name and background'. 'My date of birth'. 'My self-image'. 'Was I afraid of dying?'

By the evening the initial moment of crisis seemed to have passed. I was now on the NHS. It was a Friday. I irrationally wanted to go home. Hospital had frightened me. It had all got too serious. I wanted control back, but I agreed to stay on the Coronary Care Unit (CCU) for observation over the weekend. The doctor in the pink shirt at the London Clinic, Dr Sutton, was also the unit's consultant heart specialist, and I was being looked after by his team. I sat up in bed in grey marl shorts. I wouldn't he down. I tried to look fit. I was sure nothing was wrong with my heart and that the sooner I could convince them and get away the better. I remembered how the homeopath had talked of the body exorcizing illness, bringing poison to the surface before it can recover. I thought if I could put this hoax scare behind me I could sort out my asthma on my own again.

On the third day Tracey arrived in the morning with Eileen, our manager at the time. Wimbledon was on the silent TV up in the corner of the room. I had slept very badly and was starting to get bad indigestion, belching, acid stomach and severe backache. I thought a walk would do me good. More tests had already seemed to prove that the cardiac signals had been a false alarm, and, although I was giving very strange blood results, the pleuritic pains in my chest had calmed down again. Doctors were now guessing at gallstones or a gastric ulcer - something less critical. The nurses were understandably reluctant to let the three of us go out. I was still a patient on CCU after all. I smiled as winningly as I could and argued I might well be discharged on Monday. It was a quiet Sunday. They said OK.

We took it easy down the corridors and into the lift. Down in the garden, though, I suddenly felt strangely weak. It was an unusual fatigue that swept over me, from somewhere deep and central. It was like a bucket from a well coming up dry, as though my body was finally saying, 'No more now. It's time to stop pretending.' I had to sit on a bench. I wanted to sag forwards. Pigeons waddled across the path. A leaf fell. After a few minutes, Tracey and Eileen took my arm and we all walked slowly back to the unit in silence.

That night the pains in my back moved to the front. A young surgeon was sent to see me. It was late. He was tired. He flipped me over and kneaded my belly. I'd been constipated for two or three days. He said he could feel crap in my bowel. I slept badly again. I couldn't lie on my front.

The next morning the unit was like a beehive. Dr Sutton's houseman was just back from holiday. He had a lot of catching up to do. Rushed off his feet, he took blood from my arm ham-fistedly. I snapped at him. I was taken up to another floor for an endoscopy, to check for ulcers. A fibre-optic snake was passed down into my stomach under sedation. Back on the unit I was garrulous and loud under the effects of the drug –

'Ha ha ha. I woke up in the middle. I woke up in the bloody middle. Are we back already? Which is my bed? Here? OK. Not this one? Don't let that bloody bastard back with the needles. Fat git. Who's in charge? You? Well, don't let that fat git take any more blood. I woke up in the middle, you know. Lie back? Why? I am lying back. I felt the tube scraping around in my stomach. It's a bit warm, isn't it? Is it hot in here, or is it just me? Can I go home? Can I go home today? There's nothing wrong with me. They've got it all wrong. Don't tell me to be quiet. Just keep that fat one with the needles away from me. He doesn't know anything. Ha ha ha.'

The endoscopy found nothing irregular, but my blood counts were still coming back with big abnormalities. Marked signals were being given out that my body was under some kind of attack. A group of my white cells, the eosinophils, were showing up in numbers far greater than one would associate with the allergy responses of a regular asthmatic. Moreover, as my asthma seemed to have mysteriously subsided over the past week, the doctors were particularly puzzled and quizzed me some more. I told them I had recently been to Japan, where on a previous trip I had suffered severe food poisoning. This would tally with my results. A sleeping parasite reawakened or worm infestation could also cause such hypereosinophilic activity. It was decided I should be moved on to a general ward for tests and observations. A parasite specialist from Immunology would see me.

They moved me on to Marie Céleste Ward. I was sitting on a temporary bed in the corner against the wall in the packed room. It was in the middle of the meal round during the same evening. The air reeked of meat and boiled potatoes. The TV was on loud. We all had to raise our voices. The doctors were uncertain as to their next move. This upset me. They decided to move me into the side-room — partly out of compassion, partly for fear of contagion - and to run some more tests. They left. Tracey ate my dinner.

The hospital was due for closure within a matter of months and the building was in decline. My side-room was shabby. The blind lay broken on the floor; dry Sellotape was stuck to the frames where someone had tried to fix it back up. There was a yellow sealed bucket for used needles under the sink, a paper bag for a bin. The windows were coated with the film of car exhausts. That night I barely slept. I watched the staff in the offices across the road finish work, shut down computers, turn off lights, and then later watched the lights all come on again in the same offices as the night cleaning staff arrived. The fluorescence would flicker across my room.

When my mum first came to see me the next day, she turned to the window and sighed dramatically, 'How depressing.' I realized that nobody who came to see me in those first few days really knew what to say. I remember Toby, my half-brother, his wife, Yvonne, and the children standing at my bedside - little Luke unhappy and disorientated in Toby's arms. I can't remember them saying anything, nor me.

Rumours had inevitably started spreading already - heart attack, mystery virus, stress. Simon, my eldest half-brother, rang. He never rang. He lived in Scotland. I knew that my mum must have told him. I took the ward phone. He jumped straight in -

'Ben, what are you playing at? Isn't it time you packed it in?'

'What? What do you mean?'

'You know. The pop thing. All that lifestyle nonsense.'

'Simon, what are you talking about? What do you mean "lifestyle nonsense"?'

'Oh, come off it. You're only twenty-nine. You're killing yourself. You must be crazy.'

'What?' I was speechless. 'You think I've had a heart attack, don't you? Who told you this? I haven't had a heart attack. They know that much at least.'

'Yes, but it's all related. The music business. You should take it easy. You're still young.'

'But it's got nothing to do with the music. I'm not overworked. I'm fine. Well, not fine but ...'

'What is it then?'

'They don't know yet. I've got strange blood readings.'

'Well, you should take it easy anyway.'

His wild guesses were incensing me. The noise in the corridor was distracting. I found myself pressing the receiver harder and harder against my ear. I wanted him there, in front of me, to explain properly, but he was in Edinburgh and somebody wanted to use the phone. I was angry. The music business. Pop lifestyle. Who did he think I was? Some flamboyant flake gasping after fame and money, who had driven his car into a flotation tank and then had a seizure on the way to the bank? I suddenly found myself hating his adopted snobbery. I hung up. He once told mum how he thought 'the South' was just full of phoneys, and he was getting out.

(Continues…)


Excerpted from "Patient"
by .
Copyright © 1996 Ben Watt.
Excerpted by permission of Grove Atlantic, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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