The Blink of an Eye
Page 1
Acclaim for
THE BLINK OF AN EYE
“A highly personal, deeply affecting account of what it is to be yanked from a happy, well-ordered life and thrust into a sudden, unimaginable, terrifying darkness. Rikke Schmidt Kjærgaard has done the impossible of putting into words an experience that would seem to be beyond expressing.”
—from the foreword by Bill Bryson
“The Blink of an Eye will tell you what it is like to be conscious in a body that cannot respond to the outside world. It will help you understand what conscious is.”
—Temple Grandin, author of Thinking in Pictures and The Autistic Brain
“An inspirational story of beating the odds.”—Kirkus Reviews
“Told with clear and unsparing detail . . . a touching reminder that love and human contact are important for healing. Above all, The Blink of an Eye stresses the miracle and fragility of life.”—Foreword
“As gripping as a thriller . . . compels you to appreciate everything you daily take for granted.”—Sunday Express
THE BLINK OF AN EYE: A Memoir of Dying—and Learning How to Live Again
Copyright © 2018, 2019 by Rikke Schmidt Kjærgaard
Foreword © 2018 by Bill Bryson
A Caregiver’s Checklist © 2019 by Rikke Schmidt Kjærgaard
The right of Rikke Schmidt Kjærgaard to be identified as the Author of the Work has been asserted by her in accordance with the Copyright, Designs, and Patents Act, 1988.
All rights reserved. Except for brief passages quoted in newspaper, magazine, radio, television, or online reviews, no portion of this book may be reproduced, distributed, or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or information storage or retrieval system, without the prior written permission of the publisher.
Originally published in Great Britain as The Blink of an Eye: How I Died and Started Living by Hodder & Stoughton, a Hachette UK company, in 2018.
First published in North America by The Experiment, LLC, in 2019.
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This book contains the opinions and ideas of its author. It is intended to provide helpful and informative material on the subjects addressed in the book. It is sold with the understanding that the author and publisher are not engaged in rendering medical, health, or any other kind of personal professional services in the book. The author and publisher specifically disclaim all responsibility for any liability, loss, or risk—personal or otherwise—that is incurred as a consequence, directly or indirectly, of the use and application of any of the contents of this book.
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Library of Congress Cataloging-in-Publication Data
Names: Kjaergaard, Rikke Schmidt, author.
Title: The blink of an eye : a memoir of dying--and learning how to live
again / Rikke Schmidt Kjaergaard.
Description: New York, NY : The Experiment, LLC, 2019. | Previous title: The
blink of an eye: how I died and started living. 2018.
Identifiers: LCCN 2019004727 (print) | LCCN 2019008568 (ebook) | ISBN
9781615195725 (ebook) | ISBN 9781615195718 (pbk.)
Subjects: LCSH: Kjaergaard, Rikke Schmidt,--Health. | Kjaergaard, Rikke
Schmidt,--Family. | Streptococcus
pneumoniae--Patients--Rehabilitation--Biography. | Streptococcus
pneumoniae--Patients--Family relationships--Biography. | Physician and
patient.
Classification: LCC QR82.S78 (ebook) | LCC QR82.S78 K53 2019 (print) | DDC
579.3/55--dc23
LC record available at https://lccn.loc.gov/2019004727
ISBN 978-1-61519-571-8
Ebook ISBN 978-1-61519-572-5
Cover design by Beth Bugler | Text design by Sarah Schneider | Cover and author photograph by Katrine Philp
Manufactured in the United States of America
First printing May 2019
10 9 8 7 6 5 4 3 2 1
To Daniel, Victoria and Johan,
who showed remarkable courage.
To Peter, who never left my side.
With love and admiration.
Contents
Cover
Dedication
Contents
Foreword
One: Dying
Two: Surviving
Three: Being
Four: Blinking
Five: Breathing
Six: Healing
Seven: Tilting
Eight: Walking
Nine: Cutting
Ten: Leaving
Eleven: Living
Epilogue
Caregiver's Checklist
Acknowledgments
About the Author
Landmarks
Cover
Dedication
Contents
Foreword
BY BILL BRYSON
In the winter of 2016, as part of a project I was involved in, I spent some time at the Natural History Museum of Denmark in Copenhagen. One evening, after a long day at the museum, I went for dinner with my host, a genial English-born geneticist named Tom Gilbert. At the last moment we were joined by his boss, the museum’s director, Peter C. Kjærgaard.
I had only met Peter that day, but I liked him immediately, as I imagine most people do. He is clearly super-intelligent, but also charming and kindly, with a distinctly approachable manner. If you were lost in a strange city, he is the person you would ask for directions.
Early in the dinner, Peter’s phone rang, and he asked if we minded very much if he took the call. His wife had been ill, he explained, and he wanted to be sure she was all right.
We assured him, of course, that he should speak to her. Their conversation was brief and murmured, as you would expect in a restaurant, but the news was evidently good. Peter looked pleased, and indeed relieved, as he returned the phone to his pocket and told us all was well.
Tom or I said something to the effect that we hoped it was nothing too serious.
“Well, actually, she has been really quite unwell,” Peter responded rather suddenly. He hesitated, as if unsure whether to go on, then proceeded to tell us the most spellbinding and harrowing story I believe I have ever heard. It is the story you are about to read.
I don’t wish to give away a single detail of what follows. It is Rikke Schmidt Kjærgaard’s story to tell, and no one could tell it better or more feelingly. I will just say that I met Rikke soon afterward and liked her immediately, too. She has much the same qualities as Peter—she is gracious and urbane, kindly, a good listener, very learned, deeply and obviously devoted to family. I can say at once with confidence that you would like her very much yourself.
She has given us a most exceptional book, and exceptional in many ways. At its most immediate level, it is a calm, measured, impeccably lucid account of a truly horrifying experience told from the all-too-rare perspective of the sufferer. Rikke is a scientist by background, and she recounts the details of her ordeal with a kind of forensic precision that makes the horror of the experience all the more vivid and chilling. No one should have to go through what she did, but you could hardly choose a mo
re skilled and insightful victim.
But this is much more—much, much more—than a clinical record of a terrible experience. It is above all a highly personal, deeply affecting account of what it is to be yanked from a happy, well-ordered life and thrust into a sudden, unimaginable, terrifying darkness. Rikke has done the impossible of putting into words an experience that would seem to be beyond expressing.
And she has done it with the most abundant generosity. This is at its heart a book about familial bonds. Nothing says more for Rikke’s character, as both writer and person, than that you come away profoundly touched not only by the wearisome awfulness of her ordeal, but by the emotional and physical fortitude of Peter and her children. This was, from beginning to end, a shared horror.
Perhaps the most extraordinary thing about this book is that it exists at all. What happened to Rikke is not as rare as we might think or hope. No one knows how many people in the world exist in comas or are otherwise “minimally conscious,” as the medical jargon has it. Almost nowhere are records systematically kept. But according to the journal Nature Neuroscience, the number globally is in the hundreds of thousands. Few of those poor people will ever be able to resume normal lives.
Rikke Schmidt Kjærgaard is a brave and lovely exception. As The Blink of an Eye proves, we are lucky, in every sense of the word, to have her.
BILL BRYSON’s bestselling books include A Walk in the Woods, I’m a Stranger Here Myself, In a Sunburned Country, and A Short History of Nearly Everything.
one
Dying
My death could not have been predicted. It came suddenly. I was my usual self the day before. We’d had houseguests for New Year’s Eve and spent the evening chatting, singing, playing music, and eating great food. We stood to toast 2013 circled around the TV, sharing in the drama of the Bell Tower of Copenhagen City Hall’s countdown to midnight. I loved that magic beat between the last second of the old year and the first one of the new: the micropause between the past and future, the promise and the expectations. Later, I tumbled into bed, full of happiness and celebration.
The following morning we were still in a festive mood. It was a beautiful day. Cool, clear winter with just enough snow to cover the ground, and frozen puddles waiting to crack from the force of a child’s playful jump. We went for a walk along the river near our house. We lived in a large Danish town; a nice, somewhat sleepy place. We’d bought the house several years earlier, shortly before our youngest son, Daniel, was born. We had moved from a larger university city further south, because we wanted more space and a garden for our three children.
Over the years we had worked on it, knocking down walls and building new ones, laying new floorboards and painting everything in light colors. This was the first place we had owned and we had made it ours. When our jobs took us abroad for several years, we kept the house, coming back for the summer holidays, which made Daniel think that Denmark was a land of perpetual summers. I loved our house. When storms raged, if we had bad news to cope with or stressful days, our home was where we retreated. It was our haven. A safe place where nothing bad could happen.
The river we were strolling along ran all the way to the sea. The kids raced along the track: Johan, just eighteen and home on visit from his studies in Hong Kong, and Victoria, four years younger, two teenagers following their younger brother’s lead, forgetting how busy they were growing up. My husband, Peter, was deep in conversation with an old friend and colleague from England, who had stayed with us overnight. Watching from a distance, I saw him waving his arms in the air, a gesture so familiar to me it almost felt like my own. I had seen this many times before, when he was making a point or putting a funny spin on a serious topic.
Peter is a charmer, eloquent and charismatic. From the very first time I met him, I admired his immediate way of engaging with people and making them feel special. We had met at a university Christmas party where we’d been paired up for a science quiz, completely by chance. Pure luck. We’d won. “We make a great team, you and I, don’t you think?” he’d said.
Walking along the banks of the river I felt chilly, cold through to my bones. My limbs felt leaden and heavy. Nobody noticed I was lagging behind. I tried to catch up but couldn’t. I wanted to call Peter, but I felt as if I had run out of air. I dismissed it. Everybody feels a bit tired on New Year’s Day. Moments later, Daniel, our eight-year-old happy, carefree boy, came running to hide behind me so the others wouldn’t catch him. As Victoria tagged her father and they all ran circles around me, laughing, I just stood there, smiling at their playfulness.
Back home, I was still feeling cold. As everyone dispersed around the house, I went straight in to run myself a bath and lay in the hot water, wondering why I couldn’t get warm. I wanted to make sure my body temperature stabilized. When I was twenty, I had been diagnosed with SLE—systemic lupus erythematosus—a chronic autoimmune disease where the cells of the immune system mistakenly attack healthy tissue. Having SLE means you are more prone to being ill, and even though I wasn’t receiving medical treatment for it any more, having lived with the risks and necessary provisions to stay healthy for so many years, the fear of having relapses and severe recurrences still frightened me. If my temperature rose noticeably and for longer periods of time, I had to call a doctor.
Besides occasional joint pain and tiredness, I was not usually bothered by the illness. It really wasn’t a condition that interfered with my life. Sore fingers or wrists, or a mild butterfly rash on my cheeks and the bridge of my nose, were signs of exhaustion and lack of rest and indicated activity in the illness. I knew I had to take these seriously and would give myself a break when they surfaced. When I’d first been diagnosed, I quickly decided that I would not let myself be sick, that I would still be able to live my life to the fullest.
Now though, this sudden inability to get warm made me mildly nervous. As I got out of the bath, I was shivering. My muscles were working hard, rapidly contracting and relaxing, and I could not seem to generate any heat in my body. I lay on the bed and called Peter.
“Could you get me a couple of blankets, please?” I asked him.
“Are you feeling OK?”
I decided I didn’t have to answer him.
Piling blankets over me, Peter looked worried. That special look he gets when something is not right.
“I’m still freezing.” My teeth were chattering and my limbs were shaking.
Peter called for Johan to bring a couple of duvets, and together they laid them on top of me. I didn’t have the heart to tell them that I still felt as if I was lying in a bed of ice.
Night comes early in Scandinavian winter. At four in the afternoon, the bedroom lights were on and the brightness felt like icicles piercing my eyes. I asked Peter to turn off the lights and managed to tell him I would call him if I needed anything.
“OK. I’ll let you get some rest then.” But he left the door open on his way out.
My temperature continued to drop. As each hour went by, it felt like days. The house was quiet, subdued, as if everything had been turned down to a lower volume for me. Maybe they were also tired after the New Year celebrations? Daniel was probably playing with his Legos, Victoria reading, Johan and Peter preparing supper. I decided it must be the same thing for me, and that I had caught a common cold. Nothing serious.
But then the fever hit. I lay there freezing cold, shivering one minute and shaking with fever the next, my temperature shooting up and down. My thoughts became muddled and loud. Was it a school day tomorrow? What did the children need? I wanted to get up and pack their school bags.
I was dimly aware of the children coming to say good-night and then Peter being in bed. For a brief moment, I was able to register that he was talking, but then felt a desperate need to empty my bowels and I lost all sense of what he was saying. Victoria came out of her room and stood in the hallway watching her father carry me to the bathroom, Johan helping to support me. The sense that something was seriously wrong hung in the
air. I wanted to tell them everything was going to be all right, but succumbed to body cramps. Peter closed the door gently, providing me with privacy I was too sick to care about.
My body exploded with vomit and diarrhea. I was delirious with fever and the few times I surfaced, I tried to tell Peter that if I could be left alone for a while, I would be fine, and if he would stop making all that noise, I would feel better. But Peter was silent. The noise was my retching, the deep growling of a body in pain.
For a moment, I suddenly felt better. “No need for a doctor,” I said. “Let me rest. Get some sleep yourself. I’ll call you if I need you.” But before he could answer, another explosion sent me even further down than before.
“Rikke, I’m calling the doctor,” he said, firmly.
I didn’t really pay any attention to Peter’s meticulous explanations on the phone, but apparently they worked. The GP on night duty took the house call.
Waddling through the house, keeping his muddy shoes on, he shot me one tired glance.
“It’s the flu,” he said. “Everybody’s got the flu. Sit up straight. You’ll be fine.”
Turning to Peter, he said, “I’ll put in a prescription for Tamiflu. Make her take it and see your own GP in the morning.” Then he left.
What do you do in such a situation? The doctor had told Peter it was the flu, and to go and get me some Tamiflu. Not being a medical doctor himself, how could he do otherwise? But Peter knew something was terribly wrong. He had told the doctor about my SLE. He could see that my body was collapsing, that I couldn’t sit up as the doctor had commanded, that I couldn’t eat or drink, that I was way past the point of being able to control the vomiting and diarrhea. But he could only go on the on-call doctor’s medical opinion that it was nothing to worry about. He went off to pick up the prescription at the night chemist.
The Tamiflu made no difference. I could not even keep water down, let alone the pill itself. And as the endless night wore on, the fever and constant vomiting were taking their toll. Peter was exhausted from cleaning up after me, changing and washing sheets, carrying me back and forth to the bathroom in a seemingly endless march. I could sense the restlessness in the house, Johan and Victoria initially tiptoeing around to check what was going on, and then as I got worse and worse, lying worried and awake in their beds. Only Daniel had fallen into a restless sleep.