A Mind Unraveled: A True Story of Disease, Love, and Triumph

by Kurt Eichenwald

Overview

The compelling story of an acclaimed journalist and New York Times bestselling author’s ongoing struggle with epilepsy—how, through personal resilience and the support of loved ones, he overcame medical incompetence and institutional discrimination to achieve once unthinkable success.  

With a new afterword • “REMARKABLE . . . inspirational in the true sense of the word.”—The New York Times Book Review 

This is the story of one man’s battle to pursue his dreams despite an often incapacitating brain disorder. From his early experiences of fear and denial to his exasperating search for treatment, Kurt Eichenwald provides a deeply candid account of his years facing this misunderstood and often stigmatized condition. He details his encounters with the doctors whose negligence could have killed him, but for the heroic actions of a brilliant neurologist and the family and friends who fought for him. 

Ultimately, A Mind Unraveled is an inspirational story, one that chronicles how Eichenwald, faced often with his own mortality, transformed trauma into a guide for reaching the future he desired.

Praise for A Mind Unraveled

“An intimate journey . . . bravely illuminating the trials of living inside a body always poised to betray itself.”—O: The Oprah Magazine

“Poignant and infuriating . . . merges elements of medical drama, anti-discrimination fable, and coming-of-age memoir.”—The New Yorker

“One of the best thrillers I’ve read in years, yet there are no detectives, no corpses, no guns or knives.”—Minneapolis Star-Tribune

“Terrific . . . Eichenwald’s narrative is a suspenseful medical thriller about a condition that makes everyday life a mine field, a fierce indictment of a callous medical establishment, and an against-the-odds recovery saga.”—Publishers Weekly (starred review)

“Riveting . . . Eichenwald has created a universal tale of resilience wrapped in a primal scream against the far-too-savage world."—Booklist (starred review)

“An extraordinary book.”—Harriet Lerner, Ph.D., New York Times bestselling author of The Dance of Anger

Product Details

ISBN-13:	9780399593642
Publisher:	Random House Publishing Group
Publication date:	10/15/2019
Edition description:	Reprint
Pages:	432
Sales rank:	992,869
Product dimensions:	5.10(w) x 7.90(h) x 1.10(d)

About the Author

Kurt Eichenwald is the New York Times bestselling author of four previous nonfiction books. His second, The Informant, was made into a movie starring Matt Damon and directed by Steven Soderbergh. In addition to his distinguished work as a senior writer at Newsweek and a contributing editor at Vanity Fair, Eichenwald spent two decades as a senior writer at The New York Times, where he was a two-time finalist for the Pulitzer Prize. He is also a two-time winner of the George Polk Award, as well as the winner of the Payne Award for Ethics in Journalism and an Emmy Award nominee. He lives in Dallas with his family.

Read an Excerpt

Chapter One

A Christmas tree sparkled silver in front of me. My frequent, sudden sleepiness returned as I wondered how long I had been standing there. Or had I been walking? I felt odd, in a way difficult to describe—not sure where I was, not fully connected to my thoughts.

I glanced around the room. Gold tinsel hung on the walls of a living room stuffed with older furniture. Windows peered at a neighbor’s house wreathed with colored lights. Nighttime. I remembered—this was a party thrown by kids from my girlfriend’s high school. Across the room, I saw Mari Cossaboom, whom I had been dating for more than a year, chatting with classmates. I strolled up to them, trying to conceal my confusion with a veneer of confidence.

It was 1978, Christmas vacation of my senior year in high school. My blank out didn’t scare me; such episodes occurred sporadically, and family and friends greeted them with shrugs. Even my parents saw nothing amiss—lots of people stared, they assured me. But I wondered, Did they really? Did others just drift away and wander around in a daze?

At least I thought I wandered, because when I became aware of my surroundings after an episode, I believed I was someplace I hadn’t been earlier. But a friend of mine who witnessed one of these waking trances said no, I hadn’t moved. Once, I realized a classmate was in front of me, and I had no idea how he had appeared there. He asked what I was doing with my hand. I looked down and saw my fingers grasping my shirt. He told me I had been picking at it. I had no memory of doing so.

The staring spells had worsened the previous summer when I attended a Harvard University program for high school debaters. I found myself reconnecting to consciousness with a feeling of confusion far more often than in the past. When I returned home, I asked my mom to set up an appointment with my pediatrician. She agreed but again told me not to worry—everybody stared.

I described the problem to my physician but failed to mention the sleepiness or disassociation that followed a staring episode. I didn’t consider those to be symptoms, much less important. He confidently told me I was fine; lack of sleep and too much coffee were the culprits. I accepted the diagnosis, cut back on caffeine, and tried to get more rest, at least as best a teenager could.

If someone had suggested these spells were seizures, I would have laughed it off, since I bought into the falsehoods about epilepsy. In the uninformed popular imagination, a seizure meant a body convulsed by violent spasms, frothing at the mouth and swallowing a tongue as emergency workers loaded the sufferer into an ambulance for a desperate rush to the hospital. My experiences were nothing like that.

It would be stretching things to say my parents should have known what was happening, but they were better versed in medical issues than most. My father, Heinz Eichenwald, was a world-­renowned specialist in pediatric infectious disease, though he spent more time in academia than seeing patients. Growing up in Dallas, I felt proud of his influence on medicine. He seemed to be chairman of pediatrics departments everywhere—University of Texas Southwestern Medical School, Children’s Medical Center, Parkland. For one month every year during the Vietnam War, he traveled to Saigon, where he helped run a children’s hospital. He was close to Albert Sabin, the developer of the oral polio vaccine, whom I called Uncle Al, and a Nobel Prize winner even dropped by our house.

My mother, Elva Eichenwald, was a nurse who knew more practical medicine than my father. They had met at New York Hospital and married in 1951. My sister, Kathie, came along in 1955, followed three years later by my brother, Eric. In 1960, while pregnant with me, my mom was stuck with a used hypodermic needle and contracted hepatitis. Her doctors advised that the pregnancy might lead to death or complications and ordered her to bed. When I was born in 1961, doctors found me healthy, but my mother wondered decades later if hepatitis had played a role in causing my epilepsy.

Mine was a fortunate childhood. My family wasn’t wealthy, but I knew we were well off. With property cheap in Texas, we lived in a sprawling ranch-­style house, separated from the street by a five-­hundred-­foot gravel driveway. We spent no money on swimming pools or fancy cars or vacations; if we couldn’t drive to our destination, we didn’t go. Instead, my parents invested in our education. My brother and I attended St. Mark’s School of Texas, a private school I adored. My mom told me that each morning in first grade when we drove onto campus, I leaned out the window yelling, “Hello! I’m here!” as if everyone were waiting for me. Eventually, our family’s connection to St. Mark’s grew closer when the school hired my mom as the nurse. She became a beloved fixture there—other students often told me they considered her a second mother.

Nothing occurred in my childhood to prepare me for struggles in life. Probably my most harrowing childhood experience took place when I was five and attending a summer day camp. After weeks of waiting, my turn arrived to ride everybody’s favorite horse, Ginger. A counselor boosted me onto the saddle, and I rode the pinto out of the stables. We arrived at the edge of the trail when Ginger collapsed under me, dead. At day’s end, the counselors assured an angry mob of my fellow kindergartners that I had not personally killed her.

My siblings struggled with my father’s high expectations and dictates on their life choices, but I largely escaped scrutiny, since he considered me a happy-­go-­lucky intellectual lightweight. If my brother came close to falling off the high honor roll, my father would sound off, but my B and C grades barely got a glance. Strangely, I didn’t care.

Life was mostly calm with a dash of adventure. My best friend often joined me on hikes along a nearby creek, where we kept our eyes open for the ever-­present water moccasins. After short treks, we’d scamper onto a bridge and throw off our G.I. Joe action figures with parachutes attached. On longer journeys, we’d stop at a run-­down deserted sugar shack we called “the haunted cabin” until the structure disappeared. Meanwhile, another friend and I spent weeks along a portion of the creek, cutting down tiny trees and roping them together into a clubhouse. We returned to the spot one day to build the roof, only to discover that our ersatz cabin had also vanished. I even enjoyed time alone, lying on the grass while staring at the sky or climbing through a drainage tunnel that ran beneath our driveway.

I always found hobbies, from making yarn pictures on wooden slabs to building glue-­soaked model cars. When my neighborhood friend pursued magic, I joined him. The two of us started performing around Dallas; the pay was good, but we invested most of it back into the show.

I recognized my good fortune and appreciated it, largely because I was exposed to others who faced hard times. My parents volunteered at free clinics for the indigent, and we would assist some of their patients in need. We also sponsored two orphans who visited on weekends, with the younger boy sleeping in my room, where we stayed up talking or jumping on the beds. On Sunday evenings, when we drove them back to Buckner Children’s Home, I always felt guilty that my life was so much easier than theirs.

My first taste of journalism came at fifteen, and I hated it. I joined the school newspaper, the Remarker, but my assigned stories—budget plans, a play, a speaker, blah blah blah—were beyond boring. I had no doubt that unless they were looking for their own names, my fellow students never read a word.

A turning point came in my junior year when I was working on a piece about parent-­teacher night. Once again, I plunged into the pointless routine: Report on an event nobody cared about, write a story no one would read. I went through the motions by interviewing the head of the high school, Mike Shepperd. After wrapping up, I started loading my backpack.

“So, do you enjoy working for the paper?” Shepperd asked.

“No,” I replied. “I’m thinking about quitting. I never write anything interesting.”

“What do you want to write about?”

Laetrile. I wanted to work on a story about laetrile. This was a supposed miracle cancer treatment that had not been approved in the United States, but plenty of patients traveled to Mexico for the drug and swore it worked. I had first heard about it on 60 Minutes a few years before and discussed it with my father. The controversy fascinated me.

“So write about it,” Shepperd said.

The Remarker didn’t allow for that, I replied. We covered school events, not national news.

Without another word, Shepperd called the Remarker’s faculty sponsor. “Andy, Kurt Eichenwald is in my office, and he wants to do an article about laetrile. He thinks no one will let him. Can he write it?”

A second passed, and Shepperd hung up. “Okay, so now you’re assigned the article. No more excuses.”

Weeks of reporting and writing followed; the article filled two inside pages of the paper. I was delighted and proud and even won a local journalism prize. As a reward, I suppose, I was named a contributing editor in my senior year. I didn’t want to be a spoilsport and reject the position, but I had accomplished all I wanted to at the Remarker. So I accepted without enthusiasm and almost immediately distanced myself from the job. That was a flaw in my character—I could devote enormous energy to something that fascinated me, but once I finished, my interest flagged. My obsession with a single task could end as fast as a flip of a switch. A few months into my senior year, that trait became obvious to the paper’s staff, who nicknamed me “the noncontributing editor.”

That do-­it-­and-­drop-­it trait played a large role in my choice of colleges. After four years of high school debate spent whiling away weekends at tournaments, I suddenly and inexplicably lost all enthusiasm for public speaking. As a result, I eliminated schools with strong debate teams from my list of options, fearing I’d be pressured to join. My brother was a junior at Swarthmore College, a small liberal-­arts school about eleven miles from Philadelphia that offered little in the way of debate. The school was reputed to be an academic hothouse, so given my middling grades, I assumed I would have no chance at admission. When Swarthmore’s acceptance letter arrived, I raced so recklessly up the driveway in my father’s car that I almost crashed into a fence.

Weeks before graduation, my class performed Senior Follies, the annual song-­and-­skit roast that poked good-­natured fun at St. Mark’s, the teachers, and other students. This event was considered a big deal, and my classmates elected me producer. I spent months huddled with friends writing skits and song lyrics, planning choreography, and getting by with little sleep. My staring episodes escalated, and some teachers worried about my health. One day, Shepperd saw my haggard face and ordered me to skip the rest of my classes, go home, and get some sleep.

I had never been so exhausted as on the night of Senior Follies. I appeared in a few skits, including one where I caricatured a quirky science teacher. I was reciting a joke about a toy car when I suddenly felt confused. I had stopped speaking and couldn’t recall my most recent words. These “sudden break” episodes had begun earlier that year, and though I considered them minor annoyances compared with the staring spells, I had no idea how long they lasted. All I knew this time was that one had occurred onstage.

Later that night, the class got together for an after-­show party. As I nursed a beer, someone played a recording of the performance. Everybody listened, laughing, but I sank into uneasiness. Had I made a fool of myself when I drifted away? Had my classmates hidden their embarrassment? When they heard the odd pause, would they quiz me about it?

We reached my sketch, and I listened as my voice broke off midsentence. A second passed, and I started my lines again, repeating two words I had just said.

As my fellow drinkers—who had noticed nothing amiss—continued enjoying our jokes, I felt lost in wonder. Was that it? The sudden breaks were no big deal. But what about my staring spells? Friends told me they lasted ten to fifteen seconds. Did they? Maybe it just seemed that way.

Looking back, I realize that my thoughts about these experiences were irrational. The episodes embarrassed me, but I believed they were commonplace. I had scores of questions—Why was I so confused afterward? Why had I picked at my clothes? Why did I think I’d walked somewhere when I hadn’t?—but never raised them with anyone. Had I mentioned them, any doctor would have known I was experiencing seizures. To this day I believe that had I not been so deep in denial, many of my tramatic experiences in the years that followed never would have occurred.

Editorial Reviews

His remarkable memoir reads, unaccountably, like the most hair-raising of psychological thrillers. . . . A Mind Unraveled is inspirational in the true sense of the word. . . . It is written with great verve and wisdom by someone who has closely and thoughtfully detailed his own plight as well as the journey out of it. I found myself reading it obsessively. . . . It is a book to take heart from.”—Daphne Merkin, The New York Times Book Review

“A Mind Unraveled reads like a medical thriller, at times truly frightening but also deeply inspiring. This book will make me think differently as a doctor. Kurt Eichenwald is a tremendously talented writer. When you travel on his personal journey, it is pure gold.”—Sanjay Gupta, M.D., chief medical correspondent, CNN

“This book absolutely floored me. It’s a medical mystery unlike any I’ve read before, with a propulsive narrative. Trust me, you won’t be able to put it down.”—Bryan Burrough, New York Times bestselling author of Barbarians at the Gate

“This powerful account provides an important blueprint for anyone struggling to overcome serious challenges.”—Katie Couric

“Kurt Eichenwald’s memoir is an immensely moving and captivating chronicle of his struggle with epilepsy. His unflinching descriptions of the extreme challenges of his condition have much to teach all of us about living. This is an extraordinary book.”—Harriet Lerner, Ph.D., New York Times bestselling author of The Dance of Anger

“This is a very powerful, tremendously informative book. Pure emotional honesty has great impact, and that is what Kurt Eichenwald has provided here.”—James Fallows, National Book Award winner and national correspondent for The Atlantic Monthly

“A Mind Unraveled left me overwhelmed and speechless. Eichenwald’s story is breathtaking: devastation and inspiration all under one cover.”—Susan Axelrod, founder of CURE (Citizens United for Research in Epilepsy)

“A terrific memoir with a stinging critique of health care gone awry.”—Publishers Weekly (starred review)

“A passionate memoir of health and life and what it means to embrace both.”—Library Journal (starred review)

“In a career that’s included hundreds of articles . . . investigative journalist Kurt Eichenwald has established himself as a dogged and fearless reporter. But no story he’s unearthed is as compelling as the one he tells in his traumatic memoir. . . . Candid, meticulously reported and at times terrifying, A Mind Unraveled is an inspiring story of a man whose fierce will helped ensure he would not be defined or defeated by a chronic disease.”—Shelf Awareness (starred review)

“In this riveting personal narrative . . . Eichenwald has created a universal tale of resilience wrapped in a primal scream against the far-too-savage world. Book clubs will clamor for this tale of survival and call for compassion.”—Booklist (starred review)
 
“An enlightening and often moving memoir of one man’s struggle to live with a chronic and debilitating condition.”—Kirkus Reviews

From the Publisher