A Mind Unraveled

  Copyright © 2018 by Kurt Eichenwald

  All rights reserved.

  Published in the United States by Ballantine Books, an imprint of Random House, a division of Penguin Random House LLC, New York.

  BALLANTINE and the HOUSE colophon are registered trademarks of Penguin Random House LLC.

  LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

  Names: Eichenwald, Kurt, author.

  Title: A mind unraveled : a memoir / Kurt Eichenwald.

  Description: First edition. | New York : Ballantine Books, [2018]

  Identifiers: LCCN 2018018965 | ISBN 9780399593628 (hardcover) | ISBN 9780399593635 (ebook)

  Subjects: LCSH: Eichenwald, Kurt, 1961—Health. | Epileptics—United States—Biography. | LCGFT: Autobiographies.

  Classification: LCC RC372 .E33 2018 | DDC 616.85/30092 [B]—dc23

  LC record available at https://lccn.loc.gov/​2018018965

  Ebook ISBN 9780399593635

  randomhousebooks.com

  Book design by Jo Anne Metsch, adapted for ebook

  Cover design: Rachel Ake

  v5.3.2

  ep

  Contents

  Cover

  Title Page

  Copyright

  Epigraph

  Author’s Note

  Prologue

  Chapter One

  Chapter Two

  Chapter Three

  Chapter Four

  Chapter Five

  Chapter Six

  Chapter Seven

  Chapter Eight

  Chapter Nine

  Chapter Ten

  Chapter Eleven

  Chapter Twelve

  Chapter Thirteen

  Chapter Fourteen

  Chapter Fifteen

  Chapter Sixteen

  Chapter Seventeen

  Chapter Eighteen

  Chapter Nineteen

  Chapter Twenty

  Chapter Twenty-one

  Chapter Twenty-two

  Chapter Twenty-three

  Chapter Twenty-four

  Chapter Twenty-five

  Chapter Twenty-six

  Chapter Twenty-seven

  Chapter Twenty-eight

  Chapter Twenty-nine

  Chapter Thirty

  Afterword

  Dedication

  Acknowledgments

  Resources

  By Kurt Eichenwald

  About the Author

  You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.

  —MAYA ANGELOU

  AUTHOR’S NOTE

  This book may raise a few questions, the most obvious being: How can readers trust the recollections of someone whose memory has been impaired by decades of seizures? The answer is simple. Throughout most of my experiences, I kept diaries, notes, and tapes, largely because I found a benefit in recounting thoughts and feelings I shared with no one. I also retained medical documents, letters, and other contemporaneous papers. Later, I interviewed friends, family, doctors, and colleagues, who related their perspectives. While digging through old papers, I also discovered a box filled with tapes that were recorded in the 1980s by people who went through these events with me. Two of the speakers say I requested the recordings and promised not to listen to them for decades. I do not remember asking for them, but these proved invaluable, allowing me to gain insight into the experiences and emotions of friends and family that otherwise I never would have known. Passages from these old recordings are included after most chapters in this book.

  I had never reviewed all of the diaries and recordings until undertaking this project, and the level of detail they contain astonished me. In them, I seemed driven to describe every sight, every sound. I commented on chair squeaks, expressions, tones of voice. Perhaps I needed to paint a mental image for my future reference, perhaps my medications led me to ramble, perhaps reciting obsessive detail was my way of finding control in an uncontrolled situation. Whatever the reason, these records helped me reconstruct events I don’t remember.

  Then there is the nature of memory. As anyone with recollection problems can attest, it is not like a bucket that is either filled with water or not. There are pieces and pathways—which even neuroscientists only vaguely understand—woven into the tapestry of brain function that dictate whether memories stay or fade.

  Names, including those of people I have known for years, are hard to retrieve, which has led me to techniques that allow me to dodge saying them. I often rely on nicknames, such as calling my editors “Boss.” If my wife, Theresa, and I run into acquaintances or friends, she will casually utter their names so I can hear them. There have also been times when names of objects have been hard to recollect. I once stared at a chair trying to connect a word to this wooden thing with four legs; eventually, I recalled a term, but I couldn’t move the sound from my mind to my mouth. So I just pointed.

  Inconsequential or stress-free occurrences often disappear, which can be saddening, since I often forget vacations or nice experiences with my family. Sometimes, though, I’m glad memories fade—for example, I forgot a dental surgery; I know it occurred only because Theresa told me when I found gizmos intended for me to use after the procedure. I watch reruns of my beloved Law & Order over and over without remembering who committed the crime. I sat three times through my favorite movie—Memento, about a man with severe memory problems—each time knowing only that I loved the film; otherwise, it was all new to me.

  Recollections of traumatic or important or funny events tend to remain accessible; in fact, they are surprisingly vivid. Then there is a technique others with memory problems will understand: remembering to remember. If I experience a short-term event of little significance but that I know I want to recall, at times I am able to store the memory if I focus on retention. I cannot do that with everything since, if I did, I would be standing in silence endlessly, thinking about remembering.

  My age at the time of an event also plays a role. The deterioration of my memory seems to have begun when I was nineteen, after the seizures escalated. So I have found that I recall events from when I was younger with little difficulty.

  Another question: Why would someone with an impaired memory become a journalist? Parts of this book address that subject, but the basic answer is simple: I wanted to and could. People with memory problems find compensation tricks, and I am certain those made me a better journalist. Moreover, once I accepted the magnitude of my memory problems (it takes time to recognize how much you forget once you’ve forgotten it), I was already successful, and no one was challenging the accuracy of my work.

  In writing about myself, however, the techniques I describe above have limits. Often there is an amnesia surrounding a seizure that leaves me incapable of remembering. For example, in 2018 I learned from a good friend of my mother’s that many years ago, I was arrested by police who misinterpreted my post-seizure symptoms as inebriation. The friend says I was taken to jail and locked up in the drunk tank. Somehow my mother learned of my arrest and attempted, unsuccessfully, to persuade the officers by phone that I did not drink alcohol and must be in a post-seizure state. Fearing I would go for too long without my medication, she boarded a plane, flew to wherever I was, bailed me out, and then bawled out the police. She died in 2016 and
never told me this story, most likely because she thought it would upset me. I remember nothing about it, although it is disturbing to discover I probably have an arrest record somewhere.

  Seizures also made it difficult over the years for me to fully recall events that had occurred just hours before, impeding my ability to write down what had happened. In those instances, trying to remember was like watching a silent movie while wearing a blindfold that is periodically removed for a few seconds and then tied back on. In other words, there are blank spots. When necessary, I cite missing chunks of memory involving events I describe here. Sometimes, there are occurrences I remember, but I have no idea when they took place. Several appear in this book at the point I believe most accurate, but I note that I am not certain of the timing.

  Obviously, I am not claiming the dialogue in this book is a verbatim transcript. Much of it I recounted in my diaries within days or hours of my experiences. Friends and family did the same for me over the years when I asked for their recollections. I believe that reconstructing the conversations from this source material provides a far more accurate portrayal of what happened than mere paraphrase would.

  * * *

  —

  A final note: If you have epilepsy, this book does not foretell your future. Everyone’s experiences differ, and many of mine occurred because of my own bad decisions. Moreover, a careful reading can help you avoid my past errors—I was told fictions about epilepsy that damaged me, and some doctors made mistakes an educated patient never would have allowed. So don’t look on this story as representative of what could happen to you. Learn from my errors. This book can help you understand that, for most people, epilepsy does not have to block you from the life you desire. I believe the lessons in this book apply to people who face a range of traumas or difficulties, even those unrelated to health.

  Do not judge doctors—particularly neurologists—by the arrogant, incompetent ones who treated me in the earliest years after my first major seizure; in the decades since, my neurologists have been unfailingly knowledgeable, caring, and humble. Medicine has also advanced dramatically in the development of new treatments for seizures. Far more options are available now than there were even just a few years ago. Perhaps most important, epilepsy specialists say there is a growing recognition of the failures by neurologists in the past to understand the psychosocial difficulties faced by people with this condition and the role the medical community can play in helping to address them.

  Also, do not draw conclusions about the effectiveness or side effects of the anticonvulsants prescribed to me based on my experiences. Reactions to these medications vary, and mine are not a sign of whether one drug is bad or another good.

  Finally, for some individuals I encountered, I will be using pseudonyms or not naming them at all. I am uncomfortable dragging people into my story without permission. I also will not use the real names of medical professionals whose inattentiveness and poor judgment caused so much unnecessary damage. They know who they are.

  PROLOGUE

  Swarthmore, Pennsylvania

  WINTER 1982

  At first, I couldn’t feel the cold.

  It was as if I had fallen from the sky, with no memory of where I had been or how I returned. My mind was in disarray, unfocused, aware that there was pain but not quite comprehending that it was mine.

  I vaguely remember thinking that a blur of white and dark had clouded my vision, but the impression made no sense. I drifted into the unconsciousness that always followed one of my epileptic seizures.

  Time passed. Eventually, cold stabbed into my head, seeping down my back and eating at my skin. After a convulsion, injuries were mysteries to solve, enigmas that might tell me if I was safe: What had I wounded and how? In the past, I’d burned my arm horribly with boiling water. Other times, I emerged from seizures with broken ribs but no idea how they’d fractured.

  This time, the pain was hard to place. I woke a bit more, terrified as I struggled to figure out where I was. Then I knew.

  Snow. I was buried under snow.

  A day would pass before I pieced together what happened. I had been returning from a night at the Swarthmore College library and took a shortcut toward my dorm. As I made my way along this out-of-the-way path, I collapsed in a convulsion, one of many I experienced over the years. I rolled down a small hill, hitting a tennis court fence. As I lay unconscious, a blizzard swept in, covering me in a shroud of white.

  After I awakened, I struggled to dig myself out, repeatedly falling down the slope that I did not realize was there. My strength ebbed. I wanted sleep. Just a little bit. I would try to find my way out of the snow after I slept.

  I’m going to die. If I don’t get up, I’m going to die.

  The thought should have roused me, but I drifted, almost resigned to my disjointed recognition that I would not survive.

  A twinge of pain shot through my right hand. At some point, I had cut my palm. The sting stirred me, but not enough to shock me awake. Even in my fog of confusion, I knew I had found an answer. To shake off sleep, to save my life, I had to intentionally hurt myself.

  I thrust my hand through the snow and scraped my palm across the ground. I remember crying as twigs or dirt poked into the cut, the pain somehow worse because it was self-inflicted. Still not enough. I slid my throbbing hand across the ground again. It was difficult to deliberately hurt myself, but the effort worked; my overwhelming desire to sleep gave way to a determination to survive. I crawled up the hill.

  A light, shimmering in the distance. I saw it ahead of me, beautiful and flickering like nothing I had ever cast my eyes on. I would not realize until the next day that the vision was a lamppost, turned glorious and twinkling by the snow in my eyes and my nearsightedness; my glasses had come off during my seizure.

  That distant light became everything to me. I knew I was far from its glow, alone in darkness, invisible to others. But light meant people. Light meant I might be seen. Still unable to stand, my clothes frozen against my body, I edged toward that beacon, shoving my hand through the snow to scrape my palm again whenever I drifted toward sleep.

  Edging forward on my hands and knees exhausted me; it seemed to go on forever, though it probably took less than ten minutes. Finally, I arrived at the bottom of an outdoor stairway and pulled myself up the steps.

  I reached a stone patio. Lights from a dormitory blazed around me; other students were inside, so close, standing behind windows. I tried to scream, but because of exhaustion or fear or the cold itself, my cries came out as hoarse whimpers. The warm, safe students I saw through those nearby panes of glass couldn’t hear me.

  I became aware of someone else outside, a hulking man walking quickly, probably to escape the bitter cold. I called, “Help!” as best I could. I have no idea how loud or how often I said the word before attracting his attention.

  A man stood over me. Later, I learned he was a Swarthmore football player whom I barely knew. He scooped me off the ground and carried me into the warmth of the dorm.

  The burly student put me down and said something, but I didn’t understand him. I lay at the bottom of the stairs off the entryway. The indoor light caused my head to throb after so much time in darkness, and I was soaking wet. My pants were frozen, in part because I had lost control of my bladder. Other students appeared, but all I recall are looks of shock on their faces. Noises, voices, chaos.

  My hands were raw with pain. I looked at them, and what I saw was unrecognizable—bloody, swollen deformities. Small cuts where frozen skin had torn apart ran red across my knuckles; these would become tiny hairline scars that forever remain as reminders of one of the more horrific nights of my life.

  Terror welled up, spurred by the sight of my monstrous wounded hands. The last thing I remember is screaming.

  * * *

  ■ ■ ■

  I suffer from the scourge of Christ for my
sins. I practice witchcraft, and thousands of my kind have been burned to death. I have been attacked by demons. I am sacred, capable of miracles. I am a seer, blessed by God and infused with the Holy Spirit. I am forbidden from becoming a Catholic priest. I should be institutionalized, chained to walls, as I prepare for my death. I see lights that are not there. I think of words I cannot say. My arm throws; my head jerks. I become aware I am someplace with no idea how I got there.

  I have epilepsy, a condition recorded in every known civilization. Largely incurable and mostly untreatable until the early twentieth century, for thousands of years, it has been associated with religious fanaticism and cruelty. In my mother’s lifetime, people prone to seizures were dumped into institutions with names like the Eastern Pennsylvania State Institution for the Feeble-Minded and Epileptic—a hospital of nightmares that finally closed in 1987, eight years after my diagnosis.

  I experienced frequent convulsions and losses of consciousness from 1979 through 1991, from the ages of eighteen to thirty years old. With a handful of exceptions, only lesser seizures have continued since. I have lived most of my life knowing I could be seconds from falling to the ground, seizing, burning, freezing, or worse. Am I too near that window? Am I too high up? Is the oven open? I ask these questions every day. Yet even with my precautions, I have not been able to protect myself—when I was at my worst, I fell down stairs, broke bones, cut my face. I awoke on a subway platform as teenagers kicked me. I regained consciousness in blood-drenched sheets, uncertain if it was me who had bled. I was thrown out of school and lost jobs because of my epilepsy. For years, I believed that each day might be my last, that I would die from an accident or a seizure or by my own hand. I lived in a boundless minefield, never knowing if I was a step away from triggering an explosion.