A Mind Unraveled Read online

  And yet I found success, both professional and personal. I vowed not to let seizures interfere and compartmentalized—sometimes in an unhealthy way—the pains and fears from my day-to-day experiences.

  Partly because of that, I resisted pursuing this book. I wrote about my night in the snow in 2005, but after finishing those pages, I thought, Why bother? I had faced terrible things and surmounted them. Plenty of people have done the same. As a reporter, my job is to write about others’ lives, not my own. And did I really want to publicly expose my personal demons and ordeals? I feared, perhaps irrationally, if everyone knew what had happened, they might think less of me. So this potential book went into a virtual folder on my computer. Unaware that I had already shelved the project, my wife, Theresa, kept it alive by urging me to recount my story, assuring me that my fears about public reaction were misplaced. She told me that, as a physician, she knew others fighting traumas unrelated to epilepsy who could benefit by reading about how I managed my challenges. I always replied that of course my family thought it was a tale worth telling, but who else would care?

  Still, the idea nagged at me. Was I failing to face the central challenge of my life? By mostly keeping quiet after having gained some prominence as an author and a journalist, was I tacitly saying that others with seizures should hide?

  I knew that epilepsy is misunderstood because so many of us with the condition stay silent, fearful of the stigma that still attaches to the word. We distrust our own bodies and grapple with a terror of losing control of our brains. Then there is the psychosocial damage. Because of the fear seizures engender, people with epilepsy have been subjected frequently to discrimination. A look at online message boards shows postings from women who were told they would be disowned if they married an epileptic boyfriend, others fired from jobs or shunned by friends after a seizure. Until 1956, eighteen states allowed for forced sterilization of epileptic people, and marrying them was illegal in seventeen; Missouri kept its marriage ban on the books until 1980.

  In 2014, I sought the advice of prominent people in the epilepsy community, who encouraged me to write this book. When I suggested my experiences might be unique and unfairly terrifying to others with seizures, I heard for the first time that no, the things I had confronted—even the worst of them—were not exclusive to me. On the contrary, I was told that the fact I believed I alone faced certain experiences underscored the need to drag epilepsy out of the shadows.

  And so I write.

  I write, though, without self-pity, and I cringe at praise for having dealt with these challenges. After my first few years of major seizures, I never asked, Why me? Why not me? Fortune dealt me some bad cards, as it has many others in many different ways, and so I played them. In fact, despite all that has happened, if I had the power to travel back in time and push a button that would stop me from ever having epilepsy, I wouldn’t do it. Even knowing what lay ahead—those nightmares of confusion, injuries, and frequent fear of death—I would accept that fate. This book is my explanation why. In that answer lies what is, I believe, the secret of how to find happiness, how to recapture control, how to build a life worth living, even in the wake of significant trauma.

  In a conversation with

  DR. ALLAN NAARDEN, 1987

  My then neurologist

  If all you give a seizure patient is sympathy, then I’m not sure how much you’re really helping them. That’s not to say that you shouldn’t sympathize with them. You have to. But you have to also really encourage them and act like a cheerleader. And maybe push them to be better than they otherwise would wind up being.

  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 traumatic experiences in the years that followed never would have occurred.

  An audio letter from
<
br />   MARI COSSABOOM, 1981

  A longtime friend

  In high school, you would have those staring seizures, the staring spells. I assume they’re seizures now, but we didn’t know then. It used to happen all the time….I didn’t worry about them because your parents didn’t worry about them. Everyone always said that the reason those things were happening was because you were tired. And you have to admit, you were always exhausted, because you were always working on a million things at once. So I just accepted it—all your friends accepted it—as just something that happened sometimes.

  CHAPTER TWO

  A deceitful September lured back another summer day, stirring bees that drifted through an open window into my college dorm room. I watched them buzz about as I rocked in a glider chair squeezed between school-issued furniture and a cheap table. One of my new roommates, Carl Moor, sat at his desk with his back to me, brushing aside my questions with one-word responses that left little doubt of his uninterest in chatting.

  Following a miserable summer, I had arrived a few weeks late to my first semester at Swarthmore. In July, I tore ligaments in my ankle, which required me to walk on crutches with a plaster cast. Then, the following month, I contracted paratyphoid fever—the less deadly bacterial brother of typhoid—and was laid up with a temperature that hit 106 degrees. I’d never experienced delirium before, but as fever cooked my brain, I enjoyed conversations with a friend who was not there and grew angry at nonexistent people fighting nearby. By the time I could get out of bed, I had dropped more than ten pounds.