A mind unraveled A memoir

Review by New York Times Review

A TRAUMA IS a trauma is a trauma. Or is it? Over the past decade, the words "trauma" and "traumatic" have been used so profligately and have entered our cultural discourse to such an extent that they have almost lost their depth-charge, the reactive implosion of psychic damage to which they were originaily meant to refer. Everyone in this era is traumatized by everything, from inappropriate sexual come-ons to the use of language in novels by such literary greats as Joseph Conrad and Mark Twain now considered inflammatory in its assumptions about class, race or privilege. (Hence: trigger warnings, safe spaces and microaggressions.) The late novelist and critic V. S. Naipaul saw himself in an epochal battle against the cloudy and clichéd thinking to which this kind of easy resort to the dichotomy of the abused versus the abusers is conducive, replete with right-thinking but ultimately wishful ideas about the ways in which power and human nature interact. And then along comes a book, like Kurt Eichenwald's "A Mind Unraveled," that makes you rethink not only the concept of trauma but its potential impact - the ways in which trauma can work not only to weaken but to strengthen the character of the person who has experienced it. His remarkable memoir reads, unaccountably, like the most hair-raising of psychological thrillers, despite the fact that the saga of Eichenwald's life as an epileptic from his late teens up until the present, when he has become a Pulitzer Prize-winning journalist, would not seem to contain the potential for so much suspense. He grasps the gritty issues surrounding his own very real trauma and often horrific experiences - from enduring frequent convulsions and losses of consciousness to the threat of being thrown out of college to losing jobs - with so little self-pity and so much regard for the compensations the world has to offer even to those afflicted as he is. It's a quality that sets this book vividly apart from other memoirs that deal with suffering. For anyone who wants to understand the complex dynamic between environmental battering and the sort of inner strength that often goes by the name of resilience, this is the book to turn to. "I have lived most of my life," Eichenwald writes, "knowing I could be seconds away 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." He was 18 when he experienced his first grand mal seizure (as it was then called) as a senior in high school, noting that nothing in his "fortunate childhood" growing up in Dallas as the youngest of three siblings prepared him for it or the struggles that would follow. Eichenwald's father was a "world-renowned specialist in pediatric infectious disease" and his mother was a nurse: The irony of their professional affiliations will not be lost on us as their son looks for help only to enter a madhouse of bad and sometimes tragically ignorant medical care. Not one to cast blame without also indicting his own complicity, Eichenwald observes early on: "To this day I believe that had I not been so deep in denial, much of my traumatic experiences in the years that followed never would have occurred." He starts Swarthmore in the fall of 1979 and suffers from a concussion while "goofing around" with one of his roommates, after which his friends notice that he "periodically zoned out" and had "staring spells." When Eichenwald wakes up one day shortly before Thanksgiving to find himself in pain and a "disconnected state," having fallen off his bed during the night, his father arranges for him to see a neurologist back in Dallas. Thus begins his first encounter with uncommunicative and maladroit doctors. Dr. Nicholson, who "exhibited the bedside manner of a termite inspector," sends Eichenwald for a series of diagnostic tests, including a CT scan and an EEG, which result in a diagnosis of epilepsy (although he wrongly characterizes the seizures as petit mal). He prescribes Tegretol, an anticonvulsant, and when his young patient starts to question him about how the medication works, he quickly becomes impatient: "Now, don't start feeling sorry for yourself. There are children dying from cancer, and they're a lot worse off than you. You're not going to die from seizures. Those kids could only wish they had epilepsy." At the same time Nicholson warns him that he won't be able to keep up at a college as "tough" as Swarthmore and counsels him to keep his condition a secret: "If you ever have to say anything about this, call it a seizure disorder. Never say epilepsy. The word scares people." In the months that follow, Eichenwald continues to fall down the dark well of his incompletely understood disease and to experience the "terrifying loss of control that accompanies convulsions" - which, in turn, leads to a "paralyzing, desperate dependence" on his neurologist, even if he happens to be someone who fails to return calls. Nicholson eventually adds another anticonvulsant called Depakene, never bothering to explain the possible side effects, which include impairment of blood cells. Amid his anxiety about his academic performance and the need to hide his illness from everyone but his roommates, Eichenwald discovers a curious upside: After a convulsion his college English papers go from being disastrous ("Your writing is grotesque" is the comment his first paper receives) to being "A"-worthy work, composed with "top-notch" vocabulary and perfect sentence structure. Although he isn't clear what the connection to his seizures is, he wonders whether the convulsions trigger a smarter, clearer part of his brain. "This was the first of many times," he notes, "I would marvel at the brain's power, elasticity and secrets. I found it fascinating to read someone else's paper, written by me." Perhaps the most painful of Eichenwald's difficulties in dealing with his condition is the fact that his own father, despite his medical training, is in denial about the severity of his son's condition, refusing to call it by its name and insisting instead on calling it a "seizure disorder." It falls to Eichenwald himself, in league with his alarmed mother, to keep desperately looking for better and more informed care; the need for this is heightened when, after two years of taking "huge, unmonitored dosages" of medication, he ends up hospitalized in a dire, near-fatal state. "Both of your medications are at very toxic levels," he is told by a doctor on staff he refers to only as "Dr. Eyebrows." "They're not medicines anymore. They're poison. What your neurologist did is unforgivable. I'm sorry to be this blunt, but you have to know the truth. If we don't move quickly, you could die." Needless to say, Eichenwald, being the trouper he is, survives being put through an excruciating bone biopsy and goes on to survive intermittent suicidal thoughts as well as more indignities : One doctor insists, on the basis of misinterpreting his EEG tests, that he is suffering from "a conversion disorder, a form of hysteria" rather than epilepsy, another that there is a "structural" underpinning to his seizures that renders them "idiopathic" (no known cause). Swarthmore, meanwhile, moves to expel him on the basis of a school psychologist's report that he is suffering from an overlooked brain tumor and matt chase that he is not well enough to attend classes. Having finally found a neurologist, Dr. Naarden, who knows what he's doing, and working with a small group of people who believe in him, including his psychiatrist and an advocate for the disabled, Eichenwald successfully fights the college's decision and manages to graduate with his class, as he's always dreamed of doing. With the same grit and ingenuity that's enabled him to withstand the hurdles placed in his way, he goes on to find a series of writing and researching jobs that land him a spot at The New York Times as assistant to and then researcher for the renowned reporter and editor Hedrick Smith. Epilepsy continues to haunt him - after moving to Washington, D.C., to work with Smith he awakes one night after a brutal seizure and discovers that he has been raped - but Eichenwald never gives up on envisioning a life for himself, including marriage and fatherhood, that is larger than the dire predictions from the pseudoexperts around him. "A Mind Unraveled" is inspirational in the true sense of the word rather than in a gimmicky, self-help sort of way. 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, the better to discover what happens to Eichenwald as he stumbles from one traumatic misadventure to the next while managing all the while to keep his eye on the larger picture. It is a book to take heart from. DAPHNE MERKIN is the author of "This Close to Happy: A Reckoning With Depression."

Copyright (c) The New York Times Company [August 23, 2019]

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Review by Booklist Review

*Starred Review* In this riveting personal narrative, best-selling Eichenwald (500 Days, 2012) tells his devastating story of suffering from epilepsy and waging a nearly lifelong battle against discrimination accorded those who endure this malady. He describes the confusion of his teenage diagnosis, his father's outright refusal to seriously address the disease, and then, alarmingly, the enormous fights he had with the medical establishment. Nearly killed by doctors who failed to treat him appropriately, Eichenwald found himself also battling to stay in college at Swarthmore. Subjected to every denial of respect a student can imagine plus repeated episodes of gaslighting by university personnel that ultimately caused his parents to consider the possibility that he might be losing his mind, Eichenwald was driven to the brink. It is frankly infuriating to consider how much adversity he had to contend with, not only due to his seizures but more so from the behavior of doctors, school administrators, and employers. In this account of the brutal war he was forced to fight, he relies on old diaries and audiotapes as well as recent interviews for accuracy. 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.--Colleen Mondor Copyright 2018 Booklist

From Booklist, Copyright (c) American Library Association. Used with permission.

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Review by Publisher's Weekly Review

An epilepsy sufferer finds treatment almost as dangerous as his ailment in this gripping memoir. Newsweek writer Eichenwald (The Informant) recounts his struggle from the age of 18 with grand mal epileptic seizures that made him lose consciousness and collapse into convulsions, leaving him disoriented and amnesiac when he came to, not knowing where he was or how he got there. The seizures' onset inaugurated a terrifying years-long period that had him waking up in emergency rooms, under a snowdrift, on a subway platform being beaten by hoodlums, or bleeding profusely after he was raped while unconscious. Overshadowing the epilepsy, he writes, was bad treatment from arrogant, incompetent doctors who almost killed him with toxic doses of anticonvulsant medications or absurdly misdiagnosed him with a mental illness. The author also battled stigma and discrimination, facing a protracted campaign by Swarthmore College to expel him because of his seizures and, as he started his journalism career in the 1980s, the near impossibility of getting health insurance. Meticulous but passionate, 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. The result is a terrific memoir with a stinging critique of health care gone awry. (Oct.) © Copyright PWxyz, LLC. All rights reserved.

(c) Copyright PWxyz, LLC. All rights reserved

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Review by Library Journal Review

Beginning with his college years at Swarthmore to his time as an investigative reporter, Eichenwald (The Informant) thoughtfully conveys what it means to live with shame and stigma owing to disability. After being diagnosed with epilepsy in his 20s, the author lived in the shadows, afraid of losing jobs or friends, and experiencing denial and dismay from his parents. In response, he confided in his college roommates while trying to avoid putting his emotional needs in their hands. This memoir shines when expressing the vulnerability and uncertainty that comes along with disability. In Eichenwald's case, this involved a lengthy search for a neurologist who was able to properly treat his severe, life-changing seizures and memory impairment, while being misdiagnosed and mistreated in the process. He also sheds much-needed light on the challenges of life with a disability or chronic illness-trying to obtain health insurance with a preexisting condition, deciding whether to disclose his situation at work, and often wondering about accessibility. Recollections from friends, family, and former doctors are interspersed between each chapter, adding context to how the author's experiences have shaped and transformed their relationships. VERDICT A passionate memoir of health and life and what it means to embrace both. [See Prepub Alert, 4/23/18.]-Stephanie Sendaula, Library Journal © Copyright 2018. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

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Review by Kirkus Book Review

A journalist recounts his decadeslong struggle with epilepsy.Veteran journalist Eichenwald (500 Days: Secrets and Lies in the Terror Wars, 2012, etc.), a two-time winner of the George Polk Award, engrossingly relates his experiences with frequent epileptic seizures and the impact this condition has had on his life: "I have lived most of my life knowing I could be seconds from falling to the ground, seizing, burning, freezing, or worse.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." The author focuses mainly on his younger years, when he entered college up through his struggles to establish a foothold in his career. Central to his story are the grueling efforts he and his family faced trying to ensure his remittance to Swarthmore College. Through a combination of gross medical incompetence and disturbing administrative offenses within the college, Eichenwald was forced to leave during his first semester; he had to seek out extensive legal and medical intervention before he was able to continue his education. The author goes on to recount similar struggles in launching his early career. Throughout, Eichenwald brings his measured journalistic directness to the various dramas that enfold. His experiences pointedly reflect the challenges of trying to live a normal life while at the mercy of his condition, but more expansively, he relates the challenges that many disabled people face. He concludes each chapter with interview quotes, diary entries, and letters by various family members, close friends, and physicians. Though he mentions having kept these records as a means to organize his thoughts in response to increasing memory loss, their inclusion adds a somewhat cloying inspirational element that slightly undermines the strength and authority of the story he has to tell.An enlightening and often moving memoir of one man's struggle to live with a chronic and debilitating condition. Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

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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. Excerpted from A Mind Unraveled: A Memoir by Kurt Eichenwald All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

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