Patient: The True Story of a Rare Illness

By Ben Watt

A New York Times Notable Book of the Year: "Unforgettable . . . Few have told such a compelling life-story as skillfully" (San Francisco Chronicle).

 


In the summer of 1992, on the eve of an American tour, singer/songwriter Ben Watt, one half of the Billboard-topping pop duo Everything But The Girl, was taken to a London hospital complaining of chest pain. As his condition worsened, doctors were baffled. He was eventually he was diagnosed with a rare life-threatening autoimmune disease called Churg-Strauss Syndrome. "To paraphrase Joseph Heller," Ben says, "you know it's something serious when they name it after two guys." By the time he came home, two-and-half-months later, his ravaged body was forty-six pounds lighter, and he was missing most of his small intestine.


 


"Unfold[ing] like a page-turning mystery" (The Los Angeles Times), and "told with great wit and without self-pity, Patient is a sobering look at how life can suddenly be transformed into a humbling vaudeville of tests, IV's, catheters, and bedpans" (The New York Times Book Review). Injecting a frankness and natural humility into his "funny, frightening, and piercingly vulnerable" (Interview) chronicle of a medical nightmare, Ben writes about his childhood, reflects on family, and his shared life with band member and partner, Tracey Thorn. The result is "a vivid, finely wrought look at having one's future yanked away, and surviving physically and emotionally" (Dallas Morning Star-Telegram).


 

A Sunday Times Book of the Year
A Village Voice Favorite Book of the Year
An Esquire (UK) Best Non-Fiction Award Finalist

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Oct 15, 2014
• ISBN: 9780802192035

Ben Watt

Born in 1962, Ben Watt is a musician, songwriter, DJ and author. His first book, Patient: The True Story of a Rare Illness was a New York Times Notable Book of the Year, voted a Sunday Times Book of the Year by William Boyd and shortlisted for the Esquire Non-fiction Book of the Year. He is perhaps most well known for his twenty-year career in alt-pop 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. Follow him on Twitter: @Ben_Watt www.benwatt.com

Book preview

Praise for Patient: The True Story of a Rare Illness

Watt is a sharp observer and a gifted writer. . . . What comes through in this very remarkable story is the author’s sense of self and of the order and surprise of life.

—Seattle Times

Unlike so many people who’ve looked death in the eye and lived (long enough) to write about it, Watt doesn’t wax philosophical or draw too improbably many lessons from being desperately ill; he just records his own consciousness as it shrinks to the size of his body and his immediate surroundings, which in fact tells us more about what illness means and what it does to us than any sort of positive-minded propaganda.

—Village Voice Literary Supplement

Lucid and affecting.

—Time Out

Watt writes like a man in a precarious lifeboat keeping his eyes firmly on the life continuing on shore. . . . It’s his becoming modesty that allows the book the feel of triumph without ostentation.

—Boston Phoenix

At once horrifying and humorous . . . [Watt] proves himself to be a talented and insightful author, his prose enlivened by his songwriter’s eye for detail.

—The Stranger

Watt is a keen observer of hospital custom, from doctors’ bedside manners, the comfort supplied by nurses, the sameness of daily routine.

—Minneapolis Star-Tribune

"Watt’s unsentimental clarity places his book with the best examples of the form. . . . Patient’s most vivid passages—the only times Watt uses poetic language—capture the way intense pain shrinks your sense of time to the present, and your sense of place to the body. But the book’s most original segments are calm; through observation, Watt offers a new kind of guidebook, a patient’s guide."

—San Francisco Bay Guardian

A vivid, finely wrought look at having one’s future yanked away, and surviving physically and emotionally.

—Dallas Morning Star-Telegram

[Watt] chronicles here his nightmarish experiences with humor and an admirable lack of self-pity. . . . His engrossing account is painful yet poetic.

—Publishers Weekly

A simple chronicle of the curious mundanities faced by a common person under exceptional duress . . . dispassionate but harrowing, self-focused but not self-obsessed, by turns clear-sighted and pain-blinded. . . . Watt’s plain-spoken account takes a position among the growing literature of the past couple of decades that seeks to demystify the body, to expose its wants, needs, and workings. By studiously hewing to the body’s essentials, even when they prove distasteful, Watt opens himself up without forfeiting privacy or his self-respect.

—Washington City Paper

Watt wisely focuses on the fascinating, gruesome, and morbid aspects of his medical ordeal. . . . An artful exposition on one human’s loss of humanity.

—SF Weekly

An astonishingly assured anatomy of his ordeal, by turns terrifying, mordantly funny, and intensely moving. Many people suffer the pain and indignities of medical treatment; but few have written about it with quite such alarming vividness or clarity.

—Daily Telegraph

"At once a detailed layman’s account of extended illness, and a harrowing biography of a life changed by it. Patient is the rare sort of book that allows you to feel with the author—from fear to helplessness and ultimately acceptance and triumph."

—Weekly Alibi

"Honest and colorful. . . . Watt’s romantic imagination survives the beating his body and mind took as a result of his illness but what really keeps Patient going is the way he injects those desperate months with humor and insight."

—Austin Chronicle

patient

ben watt

the true story of a rare illness

Grove Press

New York

Copyright © 1996 by Ben Watt

All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without permission in writing from the publisher, except by a reviewer, who may quote brief passages in a review. Scanning, uploading, and electronic distribution of this book or the facilitation of such without the permission of the publisher is prohibited. Please purchase only authorized electronic editions, and do not participate in or encourage electronic piracy of copyrighted materials. Your support of the author’s rights is appreciated. Any member of educational institutions wishing to photocopy part or all of the work for classroom use, or anthology, should send inquiries to Grove Atlantic, 154 West 14th Street, New York, NY 10011 or [e-mail].

First published in Great Britain by Viking in 1996

Library of Congress Cataloging-in-Publication Data

Watt, Ben, 1962-

Patient : the true story of a rare illness / Ben Watt.

p. cm.

Originally published London : Viking Press, 1996.

ISBN: 978-0-8021-3583-4 (pbk.)

eISBN: 978-0-8021-9203-5

1. Watt, Ben—Health. 2. Churg-Strauss syndrome—Patients—Great Britain—Biography. I. Title

RC694.5.I53W38      1997

362.1’9613—dc21

[B]96-46771

Cover design by John Gall

Cover photograph by Marcelo Krasilicic, NYC 1995

Grove Press

an imprint of Grove Atlantic

154 West 14th Street

New York, NY 10011

Distributed by Publishers Group West

www.groveatlantic.com

For Tracey

Special thanks to Tracey, my parents Tom and Romany, Jennie, Charles Mackworth-Young, Rod Hughes, Chris Wastell, Nick Law, David Lindsay, Silé (Sheila) Taylor and the National Health Service. Additional thanks during the book’s completion to John Collee, David Godwin, Tony Lacey, David Eldridge and Alexandra Pringle.

PREFACE

Everyone is shocked by their first real hospital experience. When I was seven I fell off a wardrobe trying to find an Action Man and I remember a green-stick fracture in my arm, the trip up to Queen Mary’s, Roehampton, and the excitement of proper plaster of Paris to take to school the next day. And I remember the three hours waiting with a severely twisted knee after a football match as a teenager, the same injury a few years later when I needed physio, and the occasional winter chest X-ray. But none of these instances can count as a real hospital experience: I didn’t really make it on to the mountain. I saw Accident & Emergency (or Casualty as it is often called) and witnessed put-upon nurses, senior house officers and doctors called in from elsewhere with their ties loosened and top buttons undone, daytime drunks, kids with their mums, sweating relatives, people with nothing wrong with them, people with something seriously wrong with them but they didn’t know it yet. I didn’t even get a proper bed - I didn’t need one - just a chair or maybe a hard trolley. (I always wondered why they had to be so hard until I found out it’s to help them get their hands under you to flip you over in theatre, should you get that far. They are not meant to be beds. They are meant to be worktops.) And the trolley would have had a strip of green absorbent paper for a sheet, pulled off a wide roll, and I probably stared at the back of a piece of curtain material half-pulled across my cubicle and caught sight of someone doing exactly the same across the corridor. And mostly I got away within a few hours, out on to the cool street again, not really very unwell, real people walking by, buses, super-sensing the journey home, maybe bandaged with any luck - to at least show I’d been in the wars.

I was in a bad car crash when I was eight. That took me a little way up the mountain. The crash happened in Scotland, on the way to the swimming-baths in a suburb of Glasgow. I was on holiday. My mum and dad were in London. My grandfather was driving. My grandmother was in the back seat. I was in the front, my feet up on the dashboard. We were in a Mini. We approached the lights at the crossroads, the lights went red, and my grandpa just seemed to accelerate. I heard my grandma shout, ‘Will!’

When I came round, there was a crowd around the car. A tiny trickle of blood was on my ear. Hundreds of small crystals of glass like transparent cane sugar were all over my lap. The car wasn’t in the middle of the junction but pushed well over, as though we’d turned left but sideways. There was a double-decker bus stopped too. My grandpa wasn’t speaking. The bus had hit his side of the car on the junction, side on. The steering-wheel was very near me, touching against my leg. It seemed odd to have the steering-wheel that close to me, like it had been positioned in the middle of the car for use by either passenger. My grandma was lying on her side on the back seat. She was saying something to me. Her shoulder seemed tucked behind her back. An egg yolk was dripping off the seat, and there were peas on the floor. My legs were scrunched up on the dashboard. I always travelled with my feet up. They had stopped me being thrown out of the car.

I couldn’t tell how much time had passed. It felt like a minute, but it must have been a while for the ambulance to have already got there. A woman I’d never seen before helped me out with an ambulance man. I was barely marked. She’d been a passenger on the bus. We had to wait while they cut my grandpa out. In the ambulance he opened his eyes for a second and said everything would be all right, but then he closed them again. He was very pale. The liver spots on his balding head stood out. His fine, wispy white hair was messed up like he had been sleeping on it. He didn’t have his glasses on any more, which made him look less like him.

I didn’t see him again after that. The woman who helped me out of the car stayed with me at the hospital until Great-auntie Peggy arrived from across town in Knightswood. Grandma and grandpa had been taken away. A nurse put a sticking-plaster on my ear and they X-rayed my skull. I talked to some men in the day-room and fingered the bump on my head. I thought it was odd that they were in dressing-gowns and pyjamas in the middle of day, all men together watching TV. Watching TV in the middle of the day with my pyjamas on was something I only dreamt of. One of them bet me a bottle of Scotch that Chelsea wouldn’t beat Real Madrid that night. I didn’t know what Scotch was.

Back at Peggy’s, later on, I was allowed to stay up and watch the match. The European Cup-Winners Cup Final 1971. Chelsea were my team. Ossie, Charlie Cooke, ‘The Cat’, Chopper Harris. I’d been looking forward to it, but Peggy only had a black-and-white set with a funny fish-eye picture. I didn’t enjoy it much, but I was allowed to eat sausages in front of it. My dad arrived. He had flown up. I heard him talking to Peggy in the kitchen. I remember him being furious - not with her, but with my grandpa for endangering my life, his son. I didn’t often hear him raise his voice.

The next day he sent me home on a plane on my own. I was looked after by an air-hostess. She gave me a BEA key-ring. My grandma had dislocated her shoulder. My grandpa died in the hospital on Intensive Care.

Even bearing in mind the impression that it made on me as a young boy, I still regard this story as a mild hospital experience, only one foot on the mountain. Much in the same way I look on my wisdom-teeth operation in my mid-twenties, when I went in for the day but as an out-patient only. All four wisdom teeth were to come out in one go. I had my first general anaesthetic - I felt like a big shot - and found myself recovering on a day-ward with two other people my age, with a mouth and tongue like shoe leather and a head like towelling. By the end it had been an adventure. I had even put a jacket and tie on to go down to the hospital and had treated it like a special day out. I was charming to the nurses because I knew I would be home by teatime, and I was too - overpampered when I got in, flowers from Tracey, an unnecessary bed made up and ready should I have felt poorly, which of course I didn’t. The teeth had almost fallen out. ‘Like honeycomb,’ the surgeon had said. I was out at the pub by eight o’clock.

It is the first time they keep you in that really matters. Overnight is when you are really on the mountain. It makes you lose your bearings a little more. It is the unfamiliarity and the institutionalized accessories that first get to you - starched pillowcases with the hospital’s name on, theatre gowns, walls of fake-gaiety get-well cards, tablets served in a tiny plastic cup like the top off a bottle of Night Nurse, the smell of heavily washed floors and sterilization. It seems so primitive, so unlike home, so barely adequate. And how those reassuring words from the doctors who send you in (’Oh, you’ll be in and out in twenty-four hours. You won’t notice you’ve been in’) seem so misleading as you He trying to sleep for the first time in a room with only half the lights turned off at night and nurses whispering. And the little things we’re in for turn out to be not so little after all. An endoscopy. A laparoscopy. A miscarriage. Keyhole surgery. ‘It’s nothing,’ they say. But they all bring invasion. Scraping around and needles; disorientation and sutures. We can’t wait to get home.

ONE

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

Reviews for Patient

[piemouth · Rating: 5 out of 5 stars]

An otherwise healthy young man suddenly develops an autoimmune disease that results in him losing much of his large intestine, with a long hospital stay, and huge changes in his life. He's British, and tells his story in a clear, understated way. He does a great job of conveying how disconcerting it is to be suddenly no longer able bodied. He's half of the British pop duo Everything but the Girl. I listened to some of their songs on the web, which weren't to my taste, but I liked his book.