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A Mind Unraveled
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, heovercame medical incompetence and institutional discrimination to achieve once unthinkable success. “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.”— 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
411 pages, Kindle Edition
First published October 16, 2018
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Displaying 1 - 30 of 308 reviews
December 4, 2018
Rating: 3.5
Note: Possible spoilers
Kurt Eichenwald was diagnosed with epilepsy in the late 1970s, when he was a freshman at Swarthmore, the prestigious private liberal arts college in Pennsylvania. The first signs of the disease were short episodes of staring. To friends, Kurt would appear to be lost in a world of his own: dazed and absent. He had earlier been ill with paratyphoid fever (with delirium) and had also suffered a concussion. Whether either of these conditions predisposed him to the seizure disorder is uncertain. What is abundantly clear, however, is that he received dangerously substandard medical care for several years. There were serious health consequences as a result.
The poor treatment Kurt received was largely owing to the interference of his overbearing, autocratic father, a renowned pediatric infectious disease researcher. When his adult son’s first symptoms presented, Dr. Heinz Eichenwald, who had a thing against “for-profit” doctors and hospitals, insisted that Kurt see a pediatric neurologist colleague, who was not even a clinician but a research scientist. “Dr. Nicholson” had neither the knowledge nor the experience to prescribe anticonvulsants. He also failed to monitor Kurt’s blood for signs of drug toxicity. Dr. Nicholson led Kurt to believe that epilepsy was a shameful disease that would seriously restrict the young man’s life. An independent life and a stimulating profession? Forget it! Nicholson also cautioned Kurt against informing anyone of his condition and told him that if pressed, he should refer to his condition as a “seizure disorder”—as if it were some discrete neurological condition other than epilepsy. (In fact, the terms seizure disorder and epilepsy are used interchangeably.) Another so-called “neurologist”, “Dr. Craddock”—who, in fact, had no credentials in the specialty and was actually a psychiatrist—kept upping Kurt’s medication dose. When the patient reported disabling side effects, the physician dismissed them offhandedly. He’d never heard of those kinds of drug reactions, he said. A third neurologist (at Northwestern University Hospital), “Dr. Strauss”, determined that Kurt didn’t have epilepsy at all because his EEG (which had been inappropriately administered) was normal. Epileptics can, in fact, have perfectly normal or inconclusive electroencephalograms. According to Strauss, Kurt had a classic conversion disorder—hysteria due to psychiatric problems.
Eichenwald eventually found a good neurologist in Dallas, his hometown, but his problems weren’t over. Although he gained greater control of his condition with the drug Dilantin, the seizures never went away completely. At the center of his personal narrative is a fairly lengthy account of his shocking experience of discrimination at Swarthmore. College officials, particularly the clinical psychologist Leighton Whitaker, fabricated lies about Kurt’s academic performance, social integration, and mental health in order to push him out of the school. Whitaker even bizarrely alleged that Kurt had a brain tumour, claiming that the young man’s Dallas neurologist had failed to diagnosis it. (Clinical psychologists, by the way, are not in the business of diagnosing brain lesions.) In reality—and in violation of federal law—the college’s administration pushed Kurt out because his epilepsy was an inconvenience and the school didn’t want to accommodate him. Eichenwald fought Swarthmore tooth and nail and in the end graduated with his friends..
The remainder of the book documents the author’s entry into the world of newspaper journalism. It covers the many barriers and ordeals along the way. Gaining health insurance was a particular trial and source of anxiety. At least one struggling organization didn’t want to employ Eichenwald because signing him onto the group health insurance plan would make the plan financially prohibitive for all. During this time, it was not uncommon for Eichenwald to have seizures on city streets, only to wake up later in hospital having to face huge bills. During one seizure episode, he was brutally sexually assaulted.
The author has fairly significant memory impairment because of the havoc poorly controlled epilepsy wreaked on his brain over the years. In writing his memoir, he acknowledges that he relied on contemporaneous notes and audiotapes he’d made about his symptoms and experiences, as well as the recollections of friends and family. Some of these recollections by people close to him are included in the text. Eichenwald uses pseudonyms for the “medical professionals whose inattentiveness and poor judgment caused so much unnecessary damage.” He writes that he considered filing a suit against these physicians, but, recognizing that his father might actually side with them and that the legal case could drag on for months or even years, he chose to forgo litigation and get on with his life instead.
I learned a lot from reading this book, but I believe it could have been quite a bit shorter without losing any power. Eichenwald—a longtime investigative reporter for The New York Times, best-selling author of nonfiction, and currently a senior writer at Newsweek—has written a courageous and illuminating book about a brave and determined life.
Note: Possible spoilers
Kurt Eichenwald was diagnosed with epilepsy in the late 1970s, when he was a freshman at Swarthmore, the prestigious private liberal arts college in Pennsylvania. The first signs of the disease were short episodes of staring. To friends, Kurt would appear to be lost in a world of his own: dazed and absent. He had earlier been ill with paratyphoid fever (with delirium) and had also suffered a concussion. Whether either of these conditions predisposed him to the seizure disorder is uncertain. What is abundantly clear, however, is that he received dangerously substandard medical care for several years. There were serious health consequences as a result.
The poor treatment Kurt received was largely owing to the interference of his overbearing, autocratic father, a renowned pediatric infectious disease researcher. When his adult son’s first symptoms presented, Dr. Heinz Eichenwald, who had a thing against “for-profit” doctors and hospitals, insisted that Kurt see a pediatric neurologist colleague, who was not even a clinician but a research scientist. “Dr. Nicholson” had neither the knowledge nor the experience to prescribe anticonvulsants. He also failed to monitor Kurt’s blood for signs of drug toxicity. Dr. Nicholson led Kurt to believe that epilepsy was a shameful disease that would seriously restrict the young man’s life. An independent life and a stimulating profession? Forget it! Nicholson also cautioned Kurt against informing anyone of his condition and told him that if pressed, he should refer to his condition as a “seizure disorder”—as if it were some discrete neurological condition other than epilepsy. (In fact, the terms seizure disorder and epilepsy are used interchangeably.) Another so-called “neurologist”, “Dr. Craddock”—who, in fact, had no credentials in the specialty and was actually a psychiatrist—kept upping Kurt’s medication dose. When the patient reported disabling side effects, the physician dismissed them offhandedly. He’d never heard of those kinds of drug reactions, he said. A third neurologist (at Northwestern University Hospital), “Dr. Strauss”, determined that Kurt didn’t have epilepsy at all because his EEG (which had been inappropriately administered) was normal. Epileptics can, in fact, have perfectly normal or inconclusive electroencephalograms. According to Strauss, Kurt had a classic conversion disorder—hysteria due to psychiatric problems.
Eichenwald eventually found a good neurologist in Dallas, his hometown, but his problems weren’t over. Although he gained greater control of his condition with the drug Dilantin, the seizures never went away completely. At the center of his personal narrative is a fairly lengthy account of his shocking experience of discrimination at Swarthmore. College officials, particularly the clinical psychologist Leighton Whitaker, fabricated lies about Kurt’s academic performance, social integration, and mental health in order to push him out of the school. Whitaker even bizarrely alleged that Kurt had a brain tumour, claiming that the young man’s Dallas neurologist had failed to diagnosis it. (Clinical psychologists, by the way, are not in the business of diagnosing brain lesions.) In reality—and in violation of federal law—the college’s administration pushed Kurt out because his epilepsy was an inconvenience and the school didn’t want to accommodate him. Eichenwald fought Swarthmore tooth and nail and in the end graduated with his friends..
The remainder of the book documents the author’s entry into the world of newspaper journalism. It covers the many barriers and ordeals along the way. Gaining health insurance was a particular trial and source of anxiety. At least one struggling organization didn’t want to employ Eichenwald because signing him onto the group health insurance plan would make the plan financially prohibitive for all. During this time, it was not uncommon for Eichenwald to have seizures on city streets, only to wake up later in hospital having to face huge bills. During one seizure episode, he was brutally sexually assaulted.
The author has fairly significant memory impairment because of the havoc poorly controlled epilepsy wreaked on his brain over the years. In writing his memoir, he acknowledges that he relied on contemporaneous notes and audiotapes he’d made about his symptoms and experiences, as well as the recollections of friends and family. Some of these recollections by people close to him are included in the text. Eichenwald uses pseudonyms for the “medical professionals whose inattentiveness and poor judgment caused so much unnecessary damage.” He writes that he considered filing a suit against these physicians, but, recognizing that his father might actually side with them and that the legal case could drag on for months or even years, he chose to forgo litigation and get on with his life instead.
I learned a lot from reading this book, but I believe it could have been quite a bit shorter without losing any power. Eichenwald—a longtime investigative reporter for The New York Times, best-selling author of nonfiction, and currently a senior writer at Newsweek—has written a courageous and illuminating book about a brave and determined life.
February 6, 2023
I came to this book at the end of this year, at the end of many trips to the hospital, and so many seizures you couldn't count that high. But I finished the semester with extreme success a few days ago! And even though I haven't yet been able to look at the computer all week, eking away at even emails to my chair on my phone, I've been proud of myself for sustaining the strength of mind and spirit that this illness can take away from you. I've been waiting to read Kurt Eichenwald's book for a long time because, like him, I was in a highly competitive career when my adult onset happened. Learning how he has fought the stigmas, combatted employer discrimination, and foregrounded neurological conditions as normative on the scale of accepted disabilities that people should be treated equally for, was something I knew I would want to use to help carry myself through my career and even the seasons of life. The holiday season can be difficult for people with neurological disabilities because they can be used as pawns in family issues, are included but not taken care of/or not known how to be taken care of, or discluded all together and left alone for the whole time. My prayer is that we have a better system for this in the future but as I sit home this holiday I'll be reading Echenwald, finding healing, getting inspiration to write and to teach, feeling the rhythms inside of me to play, and getting poised to reach out more to the loving abled and dis-abled people in my community.
August 11, 2018
I couldn’t stop reading. Eichenwald’s memoir is a powerful and riveting story of how he fought for what was right—the right to have good doctors, the right for a job that was inclusive of him and believed in what he could do, and the right to live as normal of a life as possible. The story begins as Eichenwald is diagnosed with epilepsy during his freshman year of college. After being told by an awful doctor that he should restrict his goals, he is continually misdiagnosed other doctors and almost dies due to the drug toxicity. After this moment, he finds Dr. Naarden, a wonderful neurologist who tells him that he can do whatever he wants and that epilepsy does not have to control his life. In the midst of dealing with incompetent doctors, Eichenwald is thrown out of Swarthmore and upon graduation is discriminated against at his job. Additionally, Eichenwald struggles to obtain health insurance due to his condition and is unable to maintain the job he truly loves due to needing insurance to cover his medical expenses. In the midst of all of this, he does not let anything stop him. He does all of the things that the first neurologist told him he couldn’t do. Eventually while working as a copy boy for The New York Times, he begins his career in reporting and after some time becomes successful as an investigative reporter and has a family of his own.
As a premed student, I was shocked and embarrassed by the lack of bedside manner and treatment given to Eichenwald. It’s so easy to think that being told to be empathetic is something we know and are supposed to do in healthcare, but over and over again, as in Eichenwald’s case, we see medical professionals not seeing the person, but seeing the condition instead. And we can’t pretend that this happened 30 years ago and cannot happen again. I remember reading an article recently about some schools that are alleged to have convinced students with mental illness to take a semester off and are given more hassles when they attempt to return. And even though I don’t have a chronic condition, I can name times I went into the doctor’s office and was not listened to, or was told terms I did not understand, or was looked at like a spectacle and not a human being.
As I said, as soon as I began, I could not stop reading this book. I’m not sure if it was because I love reading stories of how people succeed against adversity, or that as a medically-minded person I was interested in learning about someone’s life with epilepsy. However, I must say that this memoir is a fantastic look at a successful reporter's life who let nothing get in the way of what he desired. Because of this memoir, I desire to be a better doctor and I hope that other healthcare providers who read this become better clinicians who treat people well. Moreover, I hope that everyone who reads this book is kinder to people who have challenges in life. I am also more informed about epilepsy and will make it a point to shut down ignorance. And above all else, I’ve learned about the resilience of the human spirit. As Eichenwald states at the beginning, he was given a set of cards in his life, and he played them well. Very well.
Thank you Ballantine Books and Kurt Eichenwald for offering this book giveaway!
As a premed student, I was shocked and embarrassed by the lack of bedside manner and treatment given to Eichenwald. It’s so easy to think that being told to be empathetic is something we know and are supposed to do in healthcare, but over and over again, as in Eichenwald’s case, we see medical professionals not seeing the person, but seeing the condition instead. And we can’t pretend that this happened 30 years ago and cannot happen again. I remember reading an article recently about some schools that are alleged to have convinced students with mental illness to take a semester off and are given more hassles when they attempt to return. And even though I don’t have a chronic condition, I can name times I went into the doctor’s office and was not listened to, or was told terms I did not understand, or was looked at like a spectacle and not a human being.
As I said, as soon as I began, I could not stop reading this book. I’m not sure if it was because I love reading stories of how people succeed against adversity, or that as a medically-minded person I was interested in learning about someone’s life with epilepsy. However, I must say that this memoir is a fantastic look at a successful reporter's life who let nothing get in the way of what he desired. Because of this memoir, I desire to be a better doctor and I hope that other healthcare providers who read this become better clinicians who treat people well. Moreover, I hope that everyone who reads this book is kinder to people who have challenges in life. I am also more informed about epilepsy and will make it a point to shut down ignorance. And above all else, I’ve learned about the resilience of the human spirit. As Eichenwald states at the beginning, he was given a set of cards in his life, and he played them well. Very well.
Thank you Ballantine Books and Kurt Eichenwald for offering this book giveaway!
January 28, 2019
I've been spoiled twice in a row, with incredible writer's and their amazing life stories. Nothing like a reporter with thorough critical thinking skills to bust up all the BS, corruption and incompetence. This book was an eye opener in regards to advocacy for one's education and health care. Kurt was a champion who never backed down, despite the odds being stacked against him. My heart went out to him and my respect was enormous. I feel blessed to read this inspirational book.
August 24, 2018
I received an advanced copy of A Mind Unraveled as part of the giveaway program. Reading Eichenwald's story is like reading my own autobiography. It's amazing how much the public still does not understand epilepsy. Only those who are the closest to the individual really know what the person experience. Kurt was fortunate to have roommates and family who stood by him throughout his life. I thought the idea of making recordings was such a great idea. I wish someone had made that suggestion to me over 20 years ago. The hardest part about epilepsy is what you don't remember. Having friends and family (or audio tapes) are a great help to serve as a memory.
This book should be a must read for anyone who who has ever met anyone with epilepsy be it a friend, family member, coworker, or whatever. Epilepsy is so much more than seizures.
This book should be a must read for anyone who who has ever met anyone with epilepsy be it a friend, family member, coworker, or whatever. Epilepsy is so much more than seizures.
August 10, 2018
With a little over 41o pages it's safe to say that this book is a lot. Alot of information, a lot of content, a lot to think about and ponder issues within our own lives. A Mind Unraveled: A Memoir by Kurt Eichenwald is the true story of Kurt Eichenwald an acclaimed journalist and best selling author and his tormenting struggle with epilepsy. Easily among the list of top 10 non-fiction books that I have read this year so far.
Eichenwald first began experiencing symptoms when he was in high school. I could not imagine...remembering my high school years...how difficult they were already...discovering yourself....still feeling all the insecurities one feels among their peers....and then symptoms occur. The fear..the stress....the embarrassment...is mind blowing and gut wrenching. To go from slight symptoms...to eventually full on grand mal seizures. That wasn't even the worst of his struggles. The discrimination he endured both in school and in the workplace, the misdiagnoses, the mismanagement of his condition by physicians. Truly an unraveling of such a difficult life journey. It's inspirational...absolutely but it pulls at your heart strings through out. Gut wrenching...a powerful message. Like the saying goes.....you don't know unless you step a mile in someones shoes. Grab the tissues and don't expect for this story to leave you any time soon.
Thanks to the peeps at goodreads, Kurt Eichenwald, and to Ballentine Books for my free copy of this book via giveaway. I received. I read. I reviewed this book honestly and voluntarily.
Eichenwald first began experiencing symptoms when he was in high school. I could not imagine...remembering my high school years...how difficult they were already...discovering yourself....still feeling all the insecurities one feels among their peers....and then symptoms occur. The fear..the stress....the embarrassment...is mind blowing and gut wrenching. To go from slight symptoms...to eventually full on grand mal seizures. That wasn't even the worst of his struggles. The discrimination he endured both in school and in the workplace, the misdiagnoses, the mismanagement of his condition by physicians. Truly an unraveling of such a difficult life journey. It's inspirational...absolutely but it pulls at your heart strings through out. Gut wrenching...a powerful message. Like the saying goes.....you don't know unless you step a mile in someones shoes. Grab the tissues and don't expect for this story to leave you any time soon.
Thanks to the peeps at goodreads, Kurt Eichenwald, and to Ballentine Books for my free copy of this book via giveaway. I received. I read. I reviewed this book honestly and voluntarily.
October 30, 2018
A masterfully written text by a young man--now a middle-aged man, husband, and father--who happened to have epilepsy and was kicked out of Swarthmore College his freshman year by a bunch of lying psychologists, neurologists, the dean, and the security department. All of them had progressed past the idea that epilepsy was caused by demon possession, but that it was still pretty weird and dangerous to be falling down and convulsing. They wouldn't admit that his epilepsy was the reason they were kicking him out and they were afraid of liability, until he started tape recording their phone calls, and the dean said that was absolutely the reason she was kicking him out. They lied to his parents, his friends, and anyone who disagreed with them. They had a staff psychologist who diagnosed him as having a brain tumor without ever seeing any EEGs, and then kept insisting that he be kicked out. He went through a few neurologists who told him different things, many of them wrong, and were so arrogant that they refused ever to admit they had said it or if they had, they were right. Another Swarthmore psychologist or neurologist diagnosed him as not having real epilepsy and said he had conversion hysteria--an entirely psychological phenomenon. He had to have the neurologist that he trusted call or write the others and tell them that they were dead wrong about their hunches, and the author was a classic epileptic. There was a lot of medical and administrative hubris, and they were nasty as hell to him. His valiant roommates tried to defend him, but the administrators made up lies that he had no friends, no social life, poor grades and whatever musical productions he was in were all in his mind and had no basis in reality. When he produced a tape of the a capella group he was leader of, they wouldn't listen because they said there was no such group, and he had made it up. It was pure gaslighting. Everybody thought they knew what to do best--keep him from swallowing his tongue (never happens), hold him down until he stops shaking (might cause him to break bones; worst thing you could do). All he needed was to be told where he was when he woke up and where he had been when it happened. Telling him a joke would also reorient him. Then letting him sleep.
To me, the arrogance of those in power and the vicious lies they told to cover their asses and the school's collective ass, is unconscionable. The lack of empathy and the arrogated authority of the liars defies anything that a liberal arts tradition stands for. He was even raped anally when he was unconscious once.
The book retails the long struggle for him to get a bachelor's degree and get into a news-writing job. The dedication he exemplifies--sort of on the level of Booker T. Washingt0n, doing everything perfectly and faster than anyone else--is just admirable. His perseverance is remarkable. And ultimately, Swarthmore--those still alive at least--issues an apology and offers to have him come back and lecture for the same fee as one semester of college, which he claimed they stole from him. So the ending is happy, too.
It hit especially close to home for me because for decades I have taken Tegretol and Lamictal, as he did, even though I've never had a seizure. I have a slight case of Tourette's, a movement disorder that causes my fingers to fly off the keyboard and pull up an entirely different screen, and occasionally say words that conventional people think are wicked and obscene, neither of which I can help. But it's lost me jobs and gotten me kicked out of common areas of businesses where I've worked. I've also gotten lectures from small-minded people who think this is all a moral issue, not a biological one. I couldn't change it if I wanted to. The medications keep me level-headed, keep my hands from flying out more than minimally and give me an extra second to stop myself from saying the evil F word. But it still happens. And lots of people think it's a moral issue. Why isn't it a moral issue for people to decide why they have the right to judge something that they know nothing about? It's not fun having OCD, which is on the same gene as Tourette's, but if you can't stop counting everything, you just can't. Instead of counting steps, I could go A, B, C--but it's never going to stop. It just happens biologically. I'm a very kind and moral person, but I can't abide shallow thinkers who think they can judge my behavior better than I can, or who think my shortcomings are entirely my fault, or who think they're morally superior to me.
To me, the arrogance of those in power and the vicious lies they told to cover their asses and the school's collective ass, is unconscionable. The lack of empathy and the arrogated authority of the liars defies anything that a liberal arts tradition stands for. He was even raped anally when he was unconscious once.
The book retails the long struggle for him to get a bachelor's degree and get into a news-writing job. The dedication he exemplifies--sort of on the level of Booker T. Washingt0n, doing everything perfectly and faster than anyone else--is just admirable. His perseverance is remarkable. And ultimately, Swarthmore--those still alive at least--issues an apology and offers to have him come back and lecture for the same fee as one semester of college, which he claimed they stole from him. So the ending is happy, too.
It hit especially close to home for me because for decades I have taken Tegretol and Lamictal, as he did, even though I've never had a seizure. I have a slight case of Tourette's, a movement disorder that causes my fingers to fly off the keyboard and pull up an entirely different screen, and occasionally say words that conventional people think are wicked and obscene, neither of which I can help. But it's lost me jobs and gotten me kicked out of common areas of businesses where I've worked. I've also gotten lectures from small-minded people who think this is all a moral issue, not a biological one. I couldn't change it if I wanted to. The medications keep me level-headed, keep my hands from flying out more than minimally and give me an extra second to stop myself from saying the evil F word. But it still happens. And lots of people think it's a moral issue. Why isn't it a moral issue for people to decide why they have the right to judge something that they know nothing about? It's not fun having OCD, which is on the same gene as Tourette's, but if you can't stop counting everything, you just can't. Instead of counting steps, I could go A, B, C--but it's never going to stop. It just happens biologically. I'm a very kind and moral person, but I can't abide shallow thinkers who think they can judge my behavior better than I can, or who think my shortcomings are entirely my fault, or who think they're morally superior to me.
November 16, 2018
The author's telling of his path to success in family and career is exciting and compelling. Then, add in all of the challenges that his lifetime with epilepsy contributed to every facet of his journey is amazing. If you are unaware of the impact of Epilepsy, please read and see how a young man pushed and grew and fought his path to success and you will learn about epilepsy along the way. If you do know about epilepsy (I have epilepsy), you may still see parts of his story where there are similarity and others where there is difference. In all cases it brings empathy, lessons and reflections on what one may want to try and how one may want to prioritize their life's goals whether they have epilepsy or not.
October 20, 2019
I too suffer from epileptic seizures and have had an number of Grand Mal experiences to go along with my typical Tonic/Colonic episodes of the 'Jacsonian March variety . Where Kurt Eichenwald and I differ is in the experience of neurologists . I have had 3 neurologists since my epilepsy began over ten uears ago , all competent and professional . Currently my seizures are being treated by an Epileptologist at the University of Pittsburgh Hospitals system . He is kind and knowledgeable , and we work as a team to adjust my medications .
My main frustration with this condition is that I can no longer drive , whereas previously I averaged close to 100K miles per year . Someday I hope to go the required six months symptom-free needed to get my license renewed .
My main frustration with this condition is that I can no longer drive , whereas previously I averaged close to 100K miles per year . Someday I hope to go the required six months symptom-free needed to get my license renewed .
November 19, 2018
This was an amazing, compelling story that was difficult to put down. But it started to read like a giant humblebrag, particularly in the second half. I couldn’t shake the thought that this was Lean In for folks with disabilities.
October 17, 2022
Excellent memoir!!! Full RTC!
October 7, 2018
This is my number one read of 2018. This book will rip you apart. It is agonizing to go on this journey of epilepsy with Kurt Eichenwald. It is infuriating to meet a bevy of incompetent doctors. There are so many people in this book that I absolutely hated. Yet through it all Kurt never gave up. He kept pushing on demanding answers and never letting epilepsy keep him from accomplishing his goals even when it was really difficult. This book tackles very difficult subjects but is written beautifully. I had a hard time putting this one down.
I was provided a copy of this book by the publishers via NetGalley in exchange for an honest review.
I was provided a copy of this book by the publishers via NetGalley in exchange for an honest review.
October 19, 2018
I would have read this book at one clip had my Nook not required a charge toward the end. Riveting, infuriating, informative, human, loving, and reflective -- this memoir tells the story of a man who refused to give into institutional stupidity, professional insufficiency, and personal trauma. He decided, twice in his life, to proceed to a specific goal, one academic, one personal. He achieved his goals because of his own strength while undergoing traumas beyond what most of his readers can even imagine, and because others in his life were loving. It's not "just" the story of overcoming obstacles - it's the story of holding one's own despite the overwhelming weight of the world.
July 6, 2019
Fantastic memoir of Kurt Eichenwald's struggles with epilepsy and the medical system. Should be required reading for new medical professionals and maybe new college administrators.
October 10, 2018
5 stars
“The compelling story of an acclaimed journalist and New York Times bestselling author’s ongoing struggle with epilepsy—his torturous decision to keep his condition a secret to avoid discrimination, and his ensuing decades-long battle to not only survive, but to thrive.”
Oh, holy buckets! This book is simply amazing, awe-inspiring, utterly maddening and truly heart warming. I am shocked at how deeply this book touched me. However, as a woman with uncontrolled epilepsy, this book really hit home for me.
I am astonished and sickened by what Kurt Eichenwald went through just trying to get proper medical care, to get an education and obtain a job. The extreme difficulties he faced to just have a normal life is disgusting. Eichenwald is a true testament to the axiom of never give up.
I really liked and appreciated the sections of the book which included statements from roommates, parents, wife and kids. It added so much to the book and show how his uncontrolled epilepsy impacted so many lives.
I am appalled at the way Eichenwald was treated throughout most of his life. His positive attitude and push for normalcy have certainly changed how many people with epilepsy are treated now.
This is a book everyone touched in any way by epilepsy needs to read or for that matter, anyone touched by a chronic illness should read. This is an important book. I am so thankful Eichenwald wrote it.
I received a complimentary copy of this book from the publisher and NetGalley. The views given are my own. #Netgalley #AmindUnraveled #BallantineBooks
“The compelling story of an acclaimed journalist and New York Times bestselling author’s ongoing struggle with epilepsy—his torturous decision to keep his condition a secret to avoid discrimination, and his ensuing decades-long battle to not only survive, but to thrive.”
Oh, holy buckets! This book is simply amazing, awe-inspiring, utterly maddening and truly heart warming. I am shocked at how deeply this book touched me. However, as a woman with uncontrolled epilepsy, this book really hit home for me.
I am astonished and sickened by what Kurt Eichenwald went through just trying to get proper medical care, to get an education and obtain a job. The extreme difficulties he faced to just have a normal life is disgusting. Eichenwald is a true testament to the axiom of never give up.
I really liked and appreciated the sections of the book which included statements from roommates, parents, wife and kids. It added so much to the book and show how his uncontrolled epilepsy impacted so many lives.
I am appalled at the way Eichenwald was treated throughout most of his life. His positive attitude and push for normalcy have certainly changed how many people with epilepsy are treated now.
This is a book everyone touched in any way by epilepsy needs to read or for that matter, anyone touched by a chronic illness should read. This is an important book. I am so thankful Eichenwald wrote it.
I received a complimentary copy of this book from the publisher and NetGalley. The views given are my own. #Netgalley #AmindUnraveled #BallantineBooks
September 19, 2018
This is a well-written, informative, and enlightening book. A long read, but it went by fast because I could not put it down. Hard to believe the way doctors and Swarthmore failed him at many turns, but they did. Disgusting, actually. We should be able to trust those in the medical profession, but here is proof of a frightening opposite scenario. I felt and empathized with the author's anger and frustration, but cheered on his mother when she took control. That Eichenwald came through all of it with his health mostly intact is a testament to his fortitude. He also showed amazing brilliance in his investigative work. I am impressed. His visit to Washington with his sons was especially heartwarming.
I won this book in a Goodreads giveaway, and it is an uncorrected proof. There are very few errors, but my hope is that a good proofreader finds them and makes the necessary corrections. The chronological order of the book is perfect. An excellent memoir.
My only regret is googling the author (as I do with every new author I read) and finding out the controversy surrounding him. I wish I hadn't done that.
I won this book in a Goodreads giveaway, and it is an uncorrected proof. There are very few errors, but my hope is that a good proofreader finds them and makes the necessary corrections. The chronological order of the book is perfect. An excellent memoir.
My only regret is googling the author (as I do with every new author I read) and finding out the controversy surrounding him. I wish I hadn't done that.
January 20, 2020
The main part of the story features the author trying to deal with epilepsy, a very dysfunctional medical system featuring egotistical and negligent doctors, and a dishonest collegiate bureaucracy at Swarthmore College in the early 1980s. It did strike me that this would’ve been a very different story if the author’s parents have not been very highly educated, very wealthy and very well insured.
It’s a story well worth reading.
It’s a story well worth reading.
February 27, 2020
Fascinating. I rarely stay up late into the night reading nonfiction, but I found a portion of this book riveting enough that I did so. This is an eye-opening account of the author's struggle with epilepsy--including his almost unbelievable path to find appropriate medical treatment.
September 11, 2021
I've said for sometime that Eichenwald is a "cuck" politically, as it plays nicely on his name. And, no, I'm not alone; many left-liberals and leftists have little use for him.
Well, after reading this book, I'm ready to at least partially remove the qualifier "politically" from his cuckdom.
His story of epilepsy, and the traumas he went through in getting it property treated are indeed sympathetic, but ....
And, yes, what "but" can mean psychologically.
First, a detour that will actually lead us to the point.
No index on this book.
About halfway through, I noticed that. My normal deduction for that is one star. Maybe Kurt could have gotten 3/4 a star because of his sympathetic story, have no other major issues and hold on to a four-star rating.
Not quite. Not close to quite.
While there's no index, I did see that the back of the book has a list of "dramatis personae," with a "where are they now."
Well, Cuck aliases the medical professionals who harmed him the worst, starting with the research neurologist who first examined him. Yes, the names have been changed to protect the guilty, to riff on law and order TV.
I do NOT think there's legal reasons for this; he provides a real name for the Swarthmore psychologist who led the charge to have him expelled AND who lied about his research credentials AND who had his own misdiagnosis.
Protecting the guilty is itself bad enough. When they're still alive, and, for example, the research neurologist is now working or consulting for a company that peddles food additives to allegedly battle Alzheimer's, it's worse.
At a minimum, this guy is ripping off wallets. At a more severe level, he's also abusing trust and undermining emotions. At the worst level, if people believe these supplements can render actual medical treatments nugatory, he's hurting people.
And, C. Eichenwald is enabling him.
WHY?
Don't know. C. Eichenwald doesn't explain. And, again, I do NOT think this is for legal reasons. (I also think he let former Swarthmore dean Janet Dickenson halfway gaslight him.)
So, we're definitely down to three stars there. Maybe 2.5.
But, he redeems himself a bit.
I've long been suspicious of St. Ralph of Nader. Eichenwald, from a brief time working for him at Nader's then outfit, the Center, shows that Nader is a big fat hypocrite, at least related to AAA. Nader got on a takedown vendetta against AAA because it once insulted him, and this was after it resisted officially partnering with him as consumer advocated for car buyers. AND, newbies in Nader's office, reportedly the ones they wanted to push into quitting, had to work on updating St. Ralph's non-takedown screed against AAA.
A smaller bonus point is that he confirms what I already knew to be the case at most magazines. At major newspapers, too, editors essentially do as much writing of a piece as the reporters whose names are on the byline.
However, the book then had two lacuna.
One is what I mentioned with Michael J. Fox's third autobiography, re his Parkinson's. Both these people, alleged librulz, talk about how fortunate they are. Neither uses their platform to advocate for national healthcare.
Eichenwald also could have advocated for better mass transit — and buses first, light rail a DISTANT second (it's for upper-class white people in the burbs), given his own travel restrictions, and did not.
I finally decided to give him a gentleman's C of three stars.
Well, after reading this book, I'm ready to at least partially remove the qualifier "politically" from his cuckdom.
His story of epilepsy, and the traumas he went through in getting it property treated are indeed sympathetic, but ....
And, yes, what "but" can mean psychologically.
First, a detour that will actually lead us to the point.
No index on this book.
About halfway through, I noticed that. My normal deduction for that is one star. Maybe Kurt could have gotten 3/4 a star because of his sympathetic story, have no other major issues and hold on to a four-star rating.
Not quite. Not close to quite.
While there's no index, I did see that the back of the book has a list of "dramatis personae," with a "where are they now."
Well, Cuck aliases the medical professionals who harmed him the worst, starting with the research neurologist who first examined him. Yes, the names have been changed to protect the guilty, to riff on law and order TV.
I do NOT think there's legal reasons for this; he provides a real name for the Swarthmore psychologist who led the charge to have him expelled AND who lied about his research credentials AND who had his own misdiagnosis.
Protecting the guilty is itself bad enough. When they're still alive, and, for example, the research neurologist is now working or consulting for a company that peddles food additives to allegedly battle Alzheimer's, it's worse.
At a minimum, this guy is ripping off wallets. At a more severe level, he's also abusing trust and undermining emotions. At the worst level, if people believe these supplements can render actual medical treatments nugatory, he's hurting people.
And, C. Eichenwald is enabling him.
WHY?
Don't know. C. Eichenwald doesn't explain. And, again, I do NOT think this is for legal reasons. (I also think he let former Swarthmore dean Janet Dickenson halfway gaslight him.)
So, we're definitely down to three stars there. Maybe 2.5.
But, he redeems himself a bit.
I've long been suspicious of St. Ralph of Nader. Eichenwald, from a brief time working for him at Nader's then outfit, the Center, shows that Nader is a big fat hypocrite, at least related to AAA. Nader got on a takedown vendetta against AAA because it once insulted him, and this was after it resisted officially partnering with him as consumer advocated for car buyers. AND, newbies in Nader's office, reportedly the ones they wanted to push into quitting, had to work on updating St. Ralph's non-takedown screed against AAA.
A smaller bonus point is that he confirms what I already knew to be the case at most magazines. At major newspapers, too, editors essentially do as much writing of a piece as the reporters whose names are on the byline.
However, the book then had two lacuna.
One is what I mentioned with Michael J. Fox's third autobiography, re his Parkinson's. Both these people, alleged librulz, talk about how fortunate they are. Neither uses their platform to advocate for national healthcare.
Eichenwald also could have advocated for better mass transit — and buses first, light rail a DISTANT second (it's for upper-class white people in the burbs), given his own travel restrictions, and did not.
I finally decided to give him a gentleman's C of three stars.
January 8, 2019
I could not put this book down. I was angry with the doctors, the college administration! How could they be so callous? I applaud Kurt in his perseverance in his goals and not letting his epilepsy define him. Kudos to his wife and children too.
February 25, 2025
As a nurse and daughter of a mother with epilepsy this obviously hit home. It was an insightful, raw depiction of chronic illness and medical mismanagement. This has helped me feel a little bit closer to understanding what my mom and other people with epilepsy experience.
February 9, 2025
I have so much to say about this book but cannot even find the words to express how unbelievably great this was.
July 29, 2022
Wow. Oh my. Why? What? How? Not again. This can’t be happening.
Just a few of the thoughts that circled my head while reading this mind blowing true story of Kurt’s perseverance through his struggle with epilepsy. Kurt Eichenwald faced discrimination, medical incompetence and was continually told what he couldn’t do, yet he NEVER gave up.
Until meeting my good friend, Michelle @tx2its, I really knew little about epilepsy and to be honest I think most of what I knew was false and perpetuated by the stigmas that are attached to it. While Kurt’s story is not a universal story it’s one that brings necessary attention and hope with a brighter and clearer future for those with epilepsy.
If you’re looking for a page turning memoir that will astonish you then don’t hesitate to pick this one up. I suggest you go in without knowing much more than I’ve revealed. This is story I will never forget.
Just a few of the thoughts that circled my head while reading this mind blowing true story of Kurt’s perseverance through his struggle with epilepsy. Kurt Eichenwald faced discrimination, medical incompetence and was continually told what he couldn’t do, yet he NEVER gave up.
Until meeting my good friend, Michelle @tx2its, I really knew little about epilepsy and to be honest I think most of what I knew was false and perpetuated by the stigmas that are attached to it. While Kurt’s story is not a universal story it’s one that brings necessary attention and hope with a brighter and clearer future for those with epilepsy.
If you’re looking for a page turning memoir that will astonish you then don’t hesitate to pick this one up. I suggest you go in without knowing much more than I’ve revealed. This is story I will never forget.
November 5, 2018
An in-depth personal account of living with epilepsy, the unvarnished reality of misdiagnosis and the struggles that people with medical challenges face every day. It is quite amazing how Kurt Eichenwald’s determination, motivation, and belief in himself helped power him through the many dark periods in his life as he struggled to get accurate diagnosis despite numerous obstacles. Much has to do with his personality and his persistent nature - at times confrontational, at others slipping into the depths of despair, but generally not for long. The book is a detailed - sometimes excruciatingly so - journey living with epilepsy, from its early onset to his success in managing his life despite his health challenges. His cadre of supportive friends was admirable - much rested on their young shoulders - particularly his room mates. They are to be commended for sure. Keeping epilepsy a secret is probably one of the hardest medical conditions to hide. Deeply personal, the book is an unabashed exposure of the author’s life experience living with epilepsy - personally and professionally. A book worth reading but be prepared for a bit of length and a dose of reality. Thanks to NetGalley and Ballantine Books for the ARC.
July 1, 2018
Exceptionally well written memoir that completely held my interest. It’s the story of one young man’s diagnosis of epilepsy in the late 70s. I often find the details in a memoir tedious but this author found the exact right balance. An epilepsy diagnosis is horrible but I had forgotten what a terrible stigma was associated with it in the past and I hadn’t known how hard it often was to get the right diagnosis. This author’s trials and tribulations were way beyond horrible and at times it is hard to read but the lessons in persistence and resilience are well worth it. I look forward to going back and reading this author’s prior books and highly recommend this compelling read.
Thank you to NetGalley for providing me with an early release for an honest review. I am delighted I got to read this book.
Thank you to NetGalley for providing me with an early release for an honest review. I am delighted I got to read this book.
December 22, 2018
This memoir, told in serviceable prose, educates readers about the trials of living with severe epilepsy. The author's mistreatment by family members, physicians, college officials, and employers illuminates the hurdles that people with chronic illness must overcome to get through daily life. I liked the way that Kurt Eichenwald included statements from those who helped him out through the years, and also those who might have unknowingly harmed his chances for success. This gives the memoir a broader perspective and helps readers understand how they might better respond to those who have ongoing medical concerns. The later chapters that deal with an assault are particularly memorable. I would recommend A Mind Unraveled to anyone interested in disability narratives/studies.
January 6, 2019
It's been a long time since a book, particularly a non-fiction book, captivated me like this one did. The author tells of his journey with epilepsy which vacillates from being heartbreaking to heartwarming. I have long thought that there are many people in the healthcare field who are completely incompetent, and this novel reinforces that--as well as the notion that when healthcare providers can't figure something out, they often won't admit this which can send a patient down a devastating path. I was captivated by the author's progression, both physically and mentally/ emotionally, through this book. The fact that the book was so well-written added to its page-turning attributes!
August 27, 2018
This was a fascinating look at the life of an epileptic man who just wanted a life like everyone else had. There is so much stigma attached to the condition that he was often forced to fight for the right to do normal things like attend college and get a job. His rise above all the odds was inspiring and you find yourself rooting for him as he forces open closed doors. A true tribute to the human spirit and what can be accomplished through hard work, a supportive family and an unfailing belief in yourself. #netgalley #AMindUnraveled #KurtEichenwald
January 24, 2020
Inspiring, informative, heart-breaking, infuriating, luminous - this is an amazing memoir.
The author's writing is engaging and it is straightforward without being sterile. Thankfully he eschews saccharine and overly dramatic prose.
I learned quite a bit about epilepsy and now know the proper way to be of help to someone having a seizure.
And another important message: thorough medical histories are crucial to good medical care, so avoid doctors who show no interest in learning your history.
Good people and good doctors and medical personnel are always more abundant than bad people and bad doctors. This book shines a spotlight on both the good and bad.
Just two of the bits I loved:
When Kurt visits a rehabilitative psychologist, Kurt says he misses his old life. The psychologist says "The person you were is gone." He then talks about how experience shapes and transforms us. "When you accept that the person you were is gone, you can start to accept the person you are." I found personal meaning in this section.
And the section when Kurt realizes he can no longer make sense of any of the math he sees, but understands it when it is spoken. His statistics professor works with him and enlists an honors student to help and assigns a tutor to read the textbook to Kurt. It is just a beautiful example of goodness and kindness.
There are a number of f-words; physical harm; incompetent professionals; trauma; rape (only the aftermath and psychological trauma are discussed); talk of suicide.
The author's writing is engaging and it is straightforward without being sterile. Thankfully he eschews saccharine and overly dramatic prose.
I learned quite a bit about epilepsy and now know the proper way to be of help to someone having a seizure.
And another important message: thorough medical histories are crucial to good medical care, so avoid doctors who show no interest in learning your history.
Good people and good doctors and medical personnel are always more abundant than bad people and bad doctors. This book shines a spotlight on both the good and bad.
Just two of the bits I loved:
When Kurt visits a rehabilitative psychologist, Kurt says he misses his old life. The psychologist says "The person you were is gone." He then talks about how experience shapes and transforms us. "When you accept that the person you were is gone, you can start to accept the person you are." I found personal meaning in this section.
And the section when Kurt realizes he can no longer make sense of any of the math he sees, but understands it when it is spoken. His statistics professor works with him and enlists an honors student to help and assigns a tutor to read the textbook to Kurt. It is just a beautiful example of goodness and kindness.
There are a number of f-words; physical harm; incompetent professionals; trauma; rape (only the aftermath and psychological trauma are discussed); talk of suicide.
June 6, 2020
Eichenwald, a successful journalist, wrote this memoir in order to explore his own struggles with epilepsy that started when he was just a teenager. As someone who has endured a ton of medical trauma myself (much of which was due to incompetent or just plain bad doctors), I could completely relate to much of Eichenwald's account. His ability to impeccably describe the experiences he had struggling to come to terms with his medical condition (along with how its severity affected his friends and family) made it both easy to step into his shoes and to be grateful for your own good health. Eichenwald's honesty about what he's gone through did so much to educate me about epilepsy, as well as how far our country has come in fighting discrimination against disabled people (in schools and in the workplace). I'm not sure if everyone would be able to connect with the story if they haven't been through the anguish of a misdiagnosis or a medical professional claiming symptoms are 'all in your head,' but for me, Eichenwald's story made me feel seen in a way that not all memoirs do. His courage and honesty alone made this book feel valuable and important.
*Free ARC provided by Netgalley and Random House in exchange for an honest review*
*Free ARC provided by Netgalley and Random House in exchange for an honest review*
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