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Author Kurt Eichenwald ’83 Discusses A Mind Unraveled, Recounts His Life with Epilepsy

Listen: Kurt Eichenwald ’83 Discusses His New Book and Life with Epilepsy

Kurt Eichenwald '83
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In this talk, Kurt Eichenwald ’83 discusses his life and career. In his book, A Mind Unraveled, he documents his life with epilepsy, including challenges he faced as a Swarthmore student, and his ensuing decades-long battle not only to survive, but to thrive. While on campus in February, he met specifically with pre-med students and spoke to a packed lecture hall in the Science Center, followed by a book signing . His visit was co-sponsored by the Office of the President and College Advancement.

Recipient of Swarthmore’s 2018 Eugene Lang Impact Award, Eichenwald is a New York Times-bestselling author of five nonfiction books, including The Informant, which was made into a movie starring Matt Damon and directed by Steven Soderbergh. In addition to his distinguished work as a contributing editor at Vanity Fair and senior writer at Newsweek, Eichenwald spent two decades as a senior writer at The New York Times, where he was a two-time finalist for the Pulitzer Prize, a two-time winner of the George Polk Award, as well as the winner of the Payne Award for Ethics in Journalism and an Emmy Award nominee.

Audio Transcript:

President Valerie Smith: Well, good afternoon everyone.
Everyone: Good afternoon.
President Valerie Smith: I'm delighted to have this opportunity to welcome you all and to welcome Kurt Eichenwald from the Class of 1983 back to Swarthmore. I first met Kurt Eichenwald last spring when I visited Dallas. At the time, he told Karl Clauss and me about the book he was finishing. I was so intrigued by his description that I told him I hoped he would return to Swarthmore and read from it after it was published. How fortunate we are that he accepted that invitation and is here with us today. Kurt Eichenwald is the author of four New York Times bestselling nonfiction books. His second book, The Informant, was made into a movie starring Matt Damon and directed by Steven Soderbergh. He has been a senior writer at Newsweek and a contributing editor at Vanity Fair. For two decades he was a senior writer at the New York Times where he was a two-time finalist for the Pulitzer Prize. He is also a two-time winner of the George Polk Award, the winner of the Payne Award for Ethics in Journalism, and an Emmy Award nominee.

VS: Kurt is here with us today to read from and discuss his most recent book, A Mind Unraveled, a highly acclaimed memoir. A Mind Unraveled is an intimate, eloquent, suspenseful, and profoundly moving account of the challenges and traumas he confronted as a young person living with epilepsy. Deeply informed and meticulously observed, the book exposes in unyielding detail, the misdiagnoses and dangerous treatments he underwent, and it captures his powerful spirit of self-advocacy, and the fierce love and loyalty of dear friends, mentors, and relatives that sustained him and enabled him to live the rich and rewarding life he envisioned for himself.
VS: Kurt, we are thrilled to welcome you back to Swarthmore. Thank you so much for being here this afternoon to tell us more about A Mind Unraveled. Thank you.

K. Eichenwald: This is a very difficult talk for me. You know, I frequently have gotten up. I've given discussions about Enron. I've given discussions about national security issues. I've talked about politics. I've talked about economics. Until the last few months I never talked about myself. There was a very big reason for it. There was a lot about myself that I really didn't want to throw out there. There was a lot about myself that I didn't want to become. It is very easy when you tell a story of certain events to be identified with those events, and that's actually going to be a lot of what I have to talk about today.

A lot of very bad things happened to me. I won't deny it. A lot of them happened at this school. As everybody who's read it knows, I had my first grand mal seizure when I was a freshman at Swarthmore. I was convinced by an early doctor to hide because if I didn't hide, then I would lose friends, lose any opportunity in education, might not ever be able to work. I had some wonderful friends who supported me. One is actually sitting right here, Franz Pasha. One is up there, Pat Cronin. A third one, Karl Moore. Fourth one, Dave Robbins. What they had to put up with was a roommate who was having grand mal seizures, and who didn't want anybody to know because his doctor told him so.

My doctor also told me, "Never call it epilepsy." My doctor also told me, "Don't feel sorry for yourself. There are children with cancer." My doctor also told me that, "Never miss your medication but I'm not going to tell you why." This was in the course of about four minutes. That sent me on a very bad path. That sent me on a path where I made a lot of mistakes. Those mistakes really could have upended my entire life had it not been for ... By the way, when I'm tense, I pick things up and I put them back down, so people are going to go, "When is he going to drink that thing?" ... if it hadn't been for friends.

Ultimately it became too much for them to even deal with because it was, when you get right down to it, this is a medical problem, and there's so much. Friends can allow you to live and exist in a way where you know you have love and support, but ultimately you need a doctor who can get you under control. My parents had a lot of trouble at first, dealing with this, until my mother at one point just said, "I'm taking over," and got me to the doctor who saved my life.

Now, what he told me ... and I'm just giving a quick summary. I'm not going to waste a lot of time ... What he told me was, "We're going to get your epilepsy as best-controlled as we can. I'm not going to promise what all the other guys promise, that I can stop the seizures. The brain is a very complex organ and when we are able to understand epilepsy, we will understand the human brain, and we don't yet." See, I'm drinking out of it. "But, I will stay with you. I will work with you. I will work until we have the best combination of seizure control and minimal side effects as possible." The side effects from anticonvulsants are brutal. If all you had were the side effects, they'd have their own foundation for cure this, but you had to make a choice. How bad will you have seizures? How bad will you have side effects?

He also convinced me to stop hiding, that I had to stop depending on my roommates, that I needed to tell people that I needed to be able to walk the campus on my own. This is where the ugly part comes in, and this is where I really admire the hell out of Al, because eight weeks after I came back to school, better than I'd been in two years ... the only difference being that I started walking the campus. I had two seizures outside and got thrown out of Swarthmore. The ugliest words that were used that night ... and it was, I mean, without warning ... The ugliest words that were used that night were burned into my brain. "We have an obligation to those parents, who paid for their children, to have a normal education."

Now, I want to be very honest. This was not an institutional event. This was an event, I firmly believe, driven by a single individual who just seemed to enjoy getting people thrown out of school. He had that history. He, himself, got driven out of Swarthmore in 1990, and a lot of people did not know what he was at that time, but the reality was ... His name's Leighton Whitaker. The reality was at that time that nobody knew what was going on. Nobody understood that just because you're having seizures doesn't mean you have a brain tumor. It doesn't mean you have calcification. There are idiopathic seizures, and people have them. I have them.

I got back into Swarthmore through a fight, and it was a long fight, and it was an ugly fight. I got back in, and I was able to graduate. I had, by that point, picked the direction I wanted to go with my life. I was still having grand mal seizures. I decided I wanted to be a newspaper reporter because I was having seizures I could not drive. The standard approach for getting into newspapers is you start in a small town and build your way up. Small towns means driving. I couldn't do it. So I ultimately took a job fetching coffee at the New York Times with the hope that I would work my way up. And I did.

I'm skipping over some of the not pleasant parts just to show that nobody's actually always what they seem. I was fired on my first day of work when the boss found out that I had epilepsy. The boss was Ralph Nader. Oh God! Now you can imagine seven years later when people are going, "He's such a good man. I'm going to vote for him for president." I was like ... Anyway, people are not always what they seem.

The Times was fantastic. the Times was ... I would have a grand mal seizure in the news room. They would get me up to the nurse's station if necessary. They would call my wife. Did they ever call you?
Speaker 4: [inaudible 00:11:33].

They called him because he lived in New York, took care of it, took me home. I'd go to work the next day. A boss would say, "You okay?" "Yeah." "Okay, I need you to do da, da, da, da, da." There was never a moment of pity. I can't tell you how much I hate pity. I can't tell you how much I hate the, "Are you okay?" I am not my seizures. It's something that happens. Now the reality is, I do not have grand mal seizures anymore, but I still do have a different form of seizure. I have beaten epilepsy, and I have seizures. That, now that I've given you the summary, I'm going to talk about that, because that's going to be the point of this story. I'm going to say some very, very, very ugly things.

I have been beaten in a subway station by people who found me post-seizure and probably thought I was drunk. I have been arrested by police who almost assuredly thought I was drunk, thrown into a drunk tank, and they refused to give me my medication, and my mother had to fly across the country to get it to me. I have been thrown out of school. I have been fired from a job because of who I am. I have been buried alive in the snow and had to crawl my way out. I have been raped violently post-seizure. I have been victimized in so many different ways and I am not a victim.

What I am talking about ... and don't anyone get up and leave ... What I am talking about, when I hear these days the ease with which the concept of victim is thrown out, the ease with which we want to feel like we've been through something bad, I don't understand it. I have spent my entire life trying not to be a victim. At any point, at any point in time ... sorry to get run out here ... At any point, I could've said, "This is too much for me. Look at the discrimination I'm facing. I am sitting in the office of Health and Human Services Civil Rights Division, and they're telling me my entire education could be destroyed. I am being forced to carry my stuff out of the office. I am in a hospital with them asking me, 'Can you identify your assailant?'" I have been through so much, and the minute you call yourself a victim is the minute you turn control of your life over to someone else. And I will not. I have never turned control over to someone else. That, people, though this book is a story of survival, no. This book is a story of control. It's a story of my decision that no matter what happened, I would envision a life I wanted to live, and I would live that life.

In the process of doing that, I hit a lot of difficulties, I guarantee you. You know, I've had ... Before I ever revealed any of this, I would have conversations about these kinds of things with college students, and they would say, "Well, as a white man, you can't understand." The one time I remember where I just started ticking off, "Well, have you been thrown out of school?" That was someone who was gay. "Have you been thrown out of school? Have you lost friends? Have you ...? Well, all of that has happened to me." So, what we are as a consequence of our ... And, I can be fired at any point.

I have people who are texting me, emailing me, saying ... Go and look up on the internet epilepsy employment websites, where people are talking to each other about how to hide they have epilepsy because in their last job, as soon as they revealed it they got fired. Where is our support? It doesn't really exist. Yes, there's the Americans With Disabilities Act, and you bring the case, and guess what? Your name is publicly out there as someone who doesn't have control ... who has uncontrolled epilepsy, and then you don't get hired. I went through so many scenarios. Do you tell them ahead of time? Do you tell them afterwards? Do you wait and see what they do if they see you have one in the office?

I had one where I literally was offered the job and said, "Okay, take back the offer because I have something to tell you and I don't want to go through a process of you just driving around to fire me." And she was confused, and then she took back the offer, and I said, "I have epilepsy." She said, "I don't want to be the kind of person that makes a difference to." But it was clear she was torn. And I said, "Then don't." She wasn't.

If you wear your victimhood as a medal, how dare you? The people in this room are some of the most privileged people in the country. If you go to every single college, you are among the 30% who attend college in the richest country in the world. You want to see someone who is facing real difficulties? Come meet my friend who does have epilepsy, who can't work, and part of his problem is the bottom of his jaw looks really bad. You know why? Because there is a false piece of information out there that people swallow their tongues. It's a lie. We can't stop it. We have tried for years to stop it. People believe you have to put ... I don't know why it's always a spoon ... a spoon in someone's mouth to stop them from fictitious swallowing of their tongue. This fellow, like many others, different ways, he just had it the worst ... The people who were with him were so convinced you had to do this that they pried his jaw open with a bottle opener and broke the bottom teeth and his jaw, and he wasn't able to afford the reconstruction that he needed.

So now when he walks into a job interview, he never gets the job. And he's a strong guy. He said, "I can't work for anybody else. I'll work for myself." So he runs a lawn company, nothing big, but at least he's able to have a life.

I have been so angry over the last number of years, not because of what happened to me, but because in what happened to me, I found the strength to live the life I wanted to live. I have been diagnosed with actual PTSD. I do have ... it's quoted in the book, I do have counseling sessions. They're not constant because that's not the way PTSD works, and so what? It's not a bragging point. I'm only bringing it up because people go, "I have PTSD because someone said something mean to me on the internet." I'm sorry. Bullshit. You do not. You got upset. You are not waking up in the middle of the night, your bed soaked through as you claw at your hand because you think you are dying, as you're reliving an event that is the most horrible thing you've ever experienced. That is PTSD, not getting some unpleasant thing on the internet.

I'm going to show you something. This is a dollar. I told you this would get intense. This is a dollar. I carry this with me all the time. I don't need it as much as I used to. The reason I carry it with me all the time was because if ever I ended up having to talk about living with epilepsy, I would start to do this ... This is the hand, when I was buried under the snow ... I had a seizure, lost consciousness, there was a blizzard, and when I woke up I was buried under the snow, no idea where I was. Post-seizure, you fall asleep. What I did, this had a cut on it, and so I scraped it on the ground to keep waking myself up. I crawled through the snow in my frozen clothes, went the wrong way, ultimately got rescued by a student ... I don't know how long it lasted ... who brought me into the dorm. You? Yeah ... took me up to the room, and I assume you took my frozen clothes off, I hope ... got me in a quilt, put me to bed. That episode has been ...

Because I was awake that whole time. I was awake that whole time I was crawling through the snow. I was awake when I was the only option I had for keeping alive was inflicting pain on myself. And so, to this day, I go like this ... The reason I have the dollar is because if I feel like I'm going to start stroking my hand, I hold the dollar. It makes it harder to do. It's a way of not doing this thing that makes people wonder what are you doing it for. Since I've started speaking since the book came out, I've gotten better at that.

That is not, I'm upset that Donald Trump was elected. That is not, I saw a Halloween costume I didn't like. That is not, somebody saying something you don't want to hear. That is not the infinitesimal stuff, micro-aggressions. You get your face buried in the ground, you wake up covered in blood, from the sexual assault you went through, you go to the hospital, and you throw out everything you have covered in blood, and you talk to me about goddamn micro-aggressions. There are people in this world every single day who are facing macro-aggressions. There are people in this world ... And I'm sorry, when people talk about micro-aggressions, what you're doing is saying, "This is easy for me. I get to feel better than you. Look at you. You're a racist because you said something that I find a micro-aggression. Look at that person. You're a sexist. Look at ..."

I had the glory of criticizing Hillary Clinton's campaign to explain why she lost, and I had the most favorite response I ever had because it still makes no sense. "I'm transphobic," to which I responded, "Could you explain?" Made no sense.

This thing of, you're this, you're that, you're the other, is not social justice. It's narcissism. Nothing has ever been accomplished by pointing at someone else and effectively saying, "I'm better than you." We don't need scolds. We need activism. How many people ... let's just take my field of interest ... How many people have had their teeth broken out because of this myth about swallowing tongues? A lot. Jaws clamp down during a seizure. If people believe they have to put something in there, they do, the jaw will not stop clamping down. Something has to give, it's usually the teeth. Thank you for never putting anything ...

The Epilepsy Foundation has spent years trying to educate in order to save people's mouths. They have found you can't say, "Don't put something in someone's mouth," because when you say that, the answer is, "Then how do you stop them from swallowing their tongue?" So what they do instead is say, "Tongue swallowing is a myth. Tongue swallowing ..." They have worked on this for 10 years. Two weeks ago Spider-Man: Far From Home or whatever it's called, came out with their trailer. A kid gets hit with a little poison dart and he falls on the ground and says, "Can we leave him there? You better turn him on his side so he won't swallow his tongue." 10 years of effort is gone. How many people are going to have their teeth broken over a stupid joke? How many times is the Epilepsy Foundation, me, all of us, calling Marvel Studios and saying, "Do you understand?" "Well, we're not saying epilepsy, we're saying tongue swallowing. Put tongue swallowing into the internet. Everything is connected to epilepsy, and it's not real. That single joke that, that single line, is going to hurt real people. They won't be able to chew their food. That is not a micro-aggression. Will anybody be out there to let Marvel know this can't happen?

Let's go to Netflix. Netflix, very recently, had a movie. Netflix believes epilepsy is funny. They had a movie where one of the main characters was called Seizure Boy. And there was all sorts of laughter and joking, and everything they presented about epilepsy was wrong. The Epilepsy Foundation put out a statement saying, "This is horrible. This is despicable. This is going back to the dark ages." Were there protests? No.
Everyone: [inaudible 00:30:53].

We had a lot of discussion that month, about a particular Halloween costume. I can't remember what it was. Can you understand why, when college students talk about things like Halloween costumes, I get enraged? Can you understand why, when I hear people say, "I'm a victim," I get enraged? Because what they are saying is, "I am so weak that the slightest offense is making me surrender control of my life."

There was a kid who had asthma. They lived literally in a tar paper shack. They couldn't afford to have health insurance. This is pre-Obamacare. But they made too much to have Medicare. His inhaler ran out and he started to suffocate. They were at the end ... I was at their home, not at this moment ... And they were at the end of a road, dirt road. They drove up this dirt road and they had two directions to go, a hospital here, and a hospital here. They didn't know which one was open. They didn't know which one would accept them. They were hesitating where do we go? They decided the one that was further away was the best chance, and he died as they were pulling into the parking lot. That is not a micro-aggression. Who was there for that boy?

I was down in the Dominican Republic with a group of Ukrainian sailors who were standing on a sinking ship. The reason it was sinking was because the company that bought it, using American laws, they had purchased a ship that was so rusted through that if it went up the waves it would crack in half, but the only power that the sailors had to get paid was by staying on the ship. So they stayed on the ship in this harbor in the Dominican Republic. The owner put a muscleman with a machete in front of the area they had to go to in order to stop the ship from sinking so that if anybody went there since he owned the ship, he had an order to kill them. This was not a micro-aggression. Two people died.

If you think ... There is a cacophony of suffering in the world, all of it drowns the other out. I talk in my book about epilepsy because people do get fired, people can't get jobs, people do get thrown out of school. There's a kid at Notre Dame who just got thrown out of school. Somebody had to say something, and I'm probably one of the few people who's in ... Let's face it, I'm 57. I can retire in six years. But is there a danger to my writing this? Yes. But somebody has to say something. The people I am trying to reach, the people I am trying to help in this book are not suffering micro-aggressions. They're suffering. Bad treatment, discrimination, inability to have a job.

Oh, I'm sorry, I left the punchline of the story of the kid who died. The next year I was talking with somebody who was saying ... who knew this story of the kid who suffocated on the way to the hospital, and I was talking to this woman, and she was ranting against the ACA. Why? Well, it wasn't national health insurance. I looked at her and said, "That boy wouldn't have died." She said ... a self-identified liberal, "We have to make sacrifices for the greater good." I've never spoken to her again. It is the convenient argument of the comfortable.

I know I've gone in a direction that nobody anticipated. Well, some people anticipated because I told you where I was going. But I don't want to stand up here and say, "Oh boo hoo, look at all these horrible things I face," because the horrible things I faced made me the person I am, and I like the person I am. Right now, you may hate the person I am, but I like the person I am. I am living the life I am living because I faced all of this adversity. I say in the book at one point, "If I had the power to go back and push a button and make it that none of the things I confronted ever happened, I wouldn't do it." Because here's what my life really is. I could die at the end of this sentence, literally. I know that is true with epilepsy.

I have a kid I was mentoring, who wanted to be a journalist and he got ... told him he could, and he got his job as a sportscaster, TV sportscaster, and then he died. Went to bed one night and died. I could die. I don't necessarily have a future. My memory is so crushed up that I don't have a past like most of you. I can remember bits and pieces. I can remember things that I've written down. I can remember who I've encountered. What I have is right now.

Everybody's been telling me about a speech I gave here, I guess 10 years ago. I don't remember. I probably won't remember this speech. I have right now. I'm not going to waste right now being a victim. I'm not going to waste right now worrying about the inconsequential or whether I can point at someone and say, "You're not as good as me because you're a homophobic, racist, da, da, da, da, da," accomplish nothing. Why not talk to that person? Hear what they have to say. I'm not saying a racist is right. I'm saying the word racist and homophobe is being used against people who aren't racist and homophobes. It's just a quick go-to, because it makes you feel good.

I don't care about you. I don't care how you feel. I care about the men who are on the sinking boat. I care about the boy who died because he couldn't get to the hospital in time. I care about the kid with the broken teeth. I care about the kid who was thrown out of Notre Dame. I care about the people who are facing true adversity with their heads held high and with courage. If there is any lesson that I have learned from the trauma that I have faced, is that trauma can be the source of strength unless you make it the source of weakness.

With that ... scared everybody? I will take whatever questions that anyone has. How many people were surprised in the direction that went?

 

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