Kurt Eichenwald: I Was Kicked Out of School for Having Epilepsy
In a passage from ‘A Mind Unraveled,’ his memoir about his decades-long experience with epilepsy, Kurt Eichenwald describes a Kafka-esque scene from his college years.
Convulsions dominated my first two years at Swarthmore College. My first neurologist, Dr. Charles Nicholson, instructed me to tell no one about my epilepsy because otherwise I would be subjected to severe discrimination. I hid out in my dorm room, and begged my roommates to keep my secret. My second neurologist almost killed me with toxic levels of medication. Broken bones, burns, nightmares, and hopelessness led me to plan suicide.
Then, in the summer after my sophomore year, I met Dr. Alan Naarden, a top neurologist. His treatment decreased my number of convulsions dramatically. He instructed me to stop hiding and to seek emotional support from a school psychologist.
For the first time, I began walking the campus alone. Over eight weeks, I experienced two convulsions outside; just a month earlier, before my medication change, that number would have been in the dozens. For the first time since my diagnosis, the school was being exposed to my seizures.
Rapidly, officials began planning to throw me out. The psychologist, Leighton Whitaker, declared that I had an undetected brain tumor, claiming he could diagnose it based on my speech patterns. No one told me he had said this. When the experts shot him down, school officials took a new approach.
In a surprise, my mother arrived and let me know the school wanted to remove me—this time claiming I was failing my classes and had no social life, both of which were false. Given how much my health had improved, I went to the meeting with Swarthmore officials confident I had nothing to fear, and that once they understood the dramatic decline in my number of seizures, the issue would blow over.
This recounting is based on contemporaneous diaries, both audiotaped and written, as well as interviews and other records.
As I crossed campus that evening, lamps flicked on under a darkening sky. My right hand was thrust inside my sweat shirt pocket, holding the tape of the performance by my a cappella group from ten days before. I hadn’t brought my cassette recorder. I assumed that showing the tape of the Sixteen Feet concert would be sufficient proof that I hadn’t been wandering in a daze, waiting passively for my next convulsion.
I met my mother behind the health center, and we headed inside. In a dimly lit room waited several school officials, including the psychologist, the internist, the health center director, and a member of the security staff. We took our chairs.
“Now, am I wasting my time?” I asked. “Has a decision already been made, or is this really a discussion?”
I noticed Whitaker and the center director stiffen in their seats. I reasoned that those two had been more directly involved in planning with the dean than the others.
“This is a discussion,” said Jeffrey Millington, a Swarthmore internist. “Staying at school may not be the best thing for you right now. Why not just go home and get better? Why make it hard on yourself?”
“Primarily because that’s my choice,” I replied. “Listen, I’m sure everyone here thinks they have my best interest at heart. The reality is, most of you know very little about my treatment and what’s going on.”
I explained that I had been very sick for two years and spent a lot of that time hiding. But a new specialist had prescribed medications that were better controlling my seizures. I was much better physically and psychologically.
“You weren’t well when you came here on Monday,” the health center director said. “You were very badly off.”
“I’m sure I was,” I replied. “It was a fluke. I had a seizure sometime Saturday night. I messed up my medication afterwards and forgot to eat. By the time I got here, my levels were terrible.” I looked at Millington, who had checked my blood. “Right?”
He nodded to the group. “That’s true.”
“But all of you are missing the most important question. Why should I go home? The pace of adjusting medications won’t change. My neurologist isn’t deciding my dosage based on whether I’m at school. If I go home, every adjustment and every test will be on the same schedule as it would be if I was here.”
Whitaker interrupted. “Well, Kurt, you haven’t had a complete diagnosis. You haven’t had the scan we discussed, and you haven’t had the Halstead-Reitan Test Battery.”
My mother’s face went stony. “We do have a complete diagnosis,” she snapped. “They don’t have any need for those other tests. There’s nothing to find.”
“Well, you don’t have everything,” Whitaker said.
“We have everything that needs to be done,” my mother responded. “And you know that.”
I watched this soft-spoken but grim tête-à-tête with puzzlement. You know that. How would he know? He was a psychologist—he probably understood less about epilepsy than I did. In fact, neither Whitaker nor my mother was qualified to debate diagnostic tests. I assumed she was simply relaying her confidence in Naarden. I had no idea Whitaker had just revived his nonsensical argument about a brain tumor that experts shot down two weeks earlier.
My mother and Whitaker glared at each other. Then, without a word, Whitaker stood and left the room. I glanced around at the remaining group.
Everyone looked embarrassed or flummoxed.
What the hell is going on?
I wasn’t sure what to say. “Um . . .”
No one spoke.
“So, are we finished?” I asked.
“No,” Millington replied. “We need to keep discussing this.”
I thought about asking if we should wait until Whitaker returned. Then I realized he was gone. This was the guy who had spun fantastical tales about developing the high-tech electrodes that allowed doctors to diagnose me, and now he was pretending to know neurology better than a neurologist. I figured his ego couldn’t handle being contradicted by my mother.
“Okay,” I said. “Well, anyway, contrary to what Dr. Whitaker just said, there’s nothing to be done. I’ll go home, and I’ll sit around. My neurologist is going to run some more tests, but not until I’ve been on the medications a little longer. They’re scheduled for Thanksgiving vacation.”
No secrets. “There’s also something that might be hard for you all to understand,” I explained. “From almost the beginning of my seizures, I’ve had this psychological commitment to graduating with my class. It’s the thing I hold on to. It’s my proof I can survive this, that I can live my life even if the seizures never improve. If you send me home, you’re taking that from me. I’ll lose a semester. I won’t graduate with my class. I know it might not make sense to you, but that would devastate me. You’d rob me of what I hold on to, for no reason.”
As Millington started to reply, Janet Dickerson, the dean, walked quietly into the room. Whitaker left; Dickerson came in. I wondered if they were tag-teaming this meeting.
Ambush, I thought. She had agreed to my demand that she not attend this meeting so the school couldn’t railroad a dismissal.
“Guess we’re not keeping our agreements, huh?” I asked.
Dickerson took a seat near me. “I think it’s important that I’m part of this conversation,” she said.
“Okay,” I said. “Well, you’ve missed my explanation why going home won’t result in getting faster medical care. You want me to start again?”
“No,” she replied. “This isn’t about that.”
What? “I’m confused,” I said. “Then what is this about?”
“Kurt,” she said softly, “you’re not well. You’re not functioning academically, and you’re not functioning socially.”
Back to this. My mother had warned me. “Okay, that’s a different topic than what we were discussing.”
“But that’s the issue. You need to go home and get care so you can handle college.”
I rubbed my forehead, trying to keep from raising my voice.
“All right, academics,” I said. “I want to know how you concluded I’m not functioning academically when I haven’t had a test, a graded assignment, a quiz, a paper, or anything.”
“You’ve had midterms.”
I smiled. “No, I haven’t. My first midterm is Monday.”
The room fell still. “So how is it you think I’m not functioning academically?” I asked.
“That’s what I’ve heard,” Dickerson said.
“That’s just what I’ve heard.”
I’m fighting gossip. “Have you bothered to ask the professors?” I asked in an angry, sarcastic voice.
“Would you like me to?” she said, mimicking my tone.
I picked up the phone on the desk where we were sitting and placed it in front of her.
“Yes!” I huffed. “Call them right now.”
She reached for a phone book, and I told her the names of my professors. She first called Professor Richard Rubin and asked for my grade in his public policy class. I smiled inwardly because I knew what he was saying—he had no idea.
“Well, can you estimate what you think his grade will be?” she asked.
She looked at me as she listened. I tried hard not to look smug. Then she thanked Rubin and hung up.
“What did he say?” I asked. “An A?”
“He said you were doing well.”
She again flipped through the phone book, searching for the home number of my statistics professor, Rob Hollister.
Millington broke the silence. “Kurt, we need to check your blood today. Let’s do it now.”
I followed him to one of the exam rooms, where he closed the door and brought out the usual equipment. As he slid the needle into my vein, he seemed tense.
“I’m really . . .” he started.
“I’m really sorry about the way they’re doing this.”
That was a surprise. “I thought you wanted me to leave.”
“I do, but not this way,” Millington said.
When I walked back to the main room, I saw that the security officer and health center director had left. I headed to the men’s room and noticed Whitaker standing in a hallway, leaning against the wall.
Is he feeding Dickerson this nonsense? I glanced at him with scorn. What a coward, I thought. The contempt I had for him at that moment was immeasurable.
I returned to the interrogation room, as I now thought of it. Dickerson was off the phone. “So,” I said, “what did Hollister guess my grade might be when I take a test?”
“Well,” Dickerson replied, “you’re not functioning socially.”
Jesus Christ! “First of all, that’s not true. Second, if you dismiss Swarthmore students for not functioning socially, you’re not going to have much of a college left.”
“This isn’t funny.”
“No, it’s ridiculous. I’m doing lots of things. I founded an a cappella group with my roommate, and we’ve already had a performance. I’m working with the Swarthmore Players Club. I’m already working on the spring musical I’m directing . . .”
“That’s not true,” Dickerson replied. “You just think you are.”
Panic set in. “What do you mean, I think I am? What, are you hearing this from the same people who told you I was failing my classes? Is Dr. Whitaker telling you this, since he’s waiting for you in the hallway? This is a bunch of lies!”
“Kurt,” she replied, “you aren’t doing these things.”
“Yes, I am!” I snapped. I brought out the recording of the Sixteen Feet concert.
“This is the tape of the a cappella group’s performance. I sang the first song! Get a tape recorder, and I’ll play it for you.”
“That’s not necessary.”
“Well, obviously it is! I have a recording of me singing in a concert that you say never happened!”
I was losing control of myself. With each lie shot down—you don’t have a diagnosis, you haven’t had all the tests, you’re not functioning academically, you’re not functioning socially, you’re imagining everything—another popped up.
Wait a minute. “Have any of you told Dr. Naarden this stuff about me not functioning socially and academically?”
“He’s been made aware of the problems you’re having,” Dickerson said.
I took a few panicked breaths. If I went home with a fictional label of having had a breakdown, Naarden would change my treatment plans. He was about to start the switch of my second-line drug from phenobarbital to Mysoline that month. If he heard Swarthmore’s imaginary stories, that wouldn’t happen. I knew he would believe that the new medicine he had added recently, Dilantin, was causing these fantasies that were being tossed about as fact. I needed to speak to Dickerson, heart to heart. I calmed myself, then looked her in the eye.
“Dean Dickerson . . . Janet . . . please hear what I’m about to say. I can’t go home with these falsehoods. If Dr. Naarden thinks I’m flunking all my classes and wandering around school drooling, all the planned medication changes and tests will be postponed. He can’t treat somebody who’s going crazy. He’s going to think the medicine is causing these problems, and they’re not happening! I have a social life, a lot better than most of the people on this campus. I have friends. I’m doing lots of things. And you know I’m not failing my classes.”
I saw sympathy in her face. Was I getting through? Was she reconsidering? I barged ahead, clinging to that hope, yet I couldn’t subdue my anger and frustration.
“This is the first time in two years that I’ve started to get under control,” I said. “With the next medication changes, I should get even better. But Naarden won’t make the changes unless I can disprove everything you’re saying about me. Goddamn it, if I can’t prove this is all false, he might take me off Dilantin! This ‘not functioning socially,’ ‘not functioning academically’ is going to become part of my medical history! Decisions about my care are going to be based on lies!”
I closed my eyes. “Please don’t do this to me.”
Her tone hardened. “We have an obligation to the parents who paid for their children to have a normal education.”
The words drove through my heart. Never had such an agony stabbed at my spirit. Tears filled my eyes. “So, what, because people see me have a seizure, I’m robbing them of a normal education?”
“This is just a very upsetting situation for students.”
“Okay—okay, I’m sorry,” I stammered in desperate sincerity. “I never should have started walking the campus alone. I was wrong! I’ll stay in my room. No one will have to see them.”
My mother cried. “Don’t punish him because he’s epileptic.”
“We’re not,” Dickerson said. “But we have to think of the other students. And staying in your room doesn’t solve the problem. Then you’re leaving it to your roommates to deal with it. They have the right to a normal education too.”
Everything Dr. Nicholson warned me about was true. It was true. I’m just a thing. I’m . . .
I covered my face with my hands and sobbed. “How can you say these things to me? When you started as dean, all you talked about was diversity.”
Suddenly I got angry. “Well, here I am! I’m diversity. How many people do you have on this campus with disabilities other than me? One? You say ‘diversity,’ and you want to throw half of Swarthmore’s disabled students out of school!”
“That’s not what I’m saying.”
“That’s what you just said! You guys have given reason after reason for throwing me out. Dr. Whitaker, a goddamn psychologist, says my neurologist doesn’t know neurology as well as he does. Oh no, it’s because of my grades! Oh, it’s because of my social life! I’m imagining my social life! I’m hurting other people because they might see me have a seizure!”
My mother, still crying, interrupted. “Kurt . . .”
I stopped speaking, trying to control myself. Dickerson looked pained.
“Please . . . don’t do this,” I begged.
The room went silent for a moment. “Let me speak to Dr. Millington,” Dickerson said.
They walked into the hallway where Whitaker waited. I wondered what role he had played. I knew he spun stories and bragged about himself all the time. Maybe I had just become a target for him so he could show off to the administration.
My mother and I sat in silence until Dickerson and Millington returned. “We still think it’s best to—” she began.
“No!” I wailed. “You’re wrong. You’re wrong. If you just want to get rid of me, if you just want me out because of my epilepsy, then just say so—”
“That’s not the issue.”
“Then there is no issue! Sending me home will set my treatment back. It will make things worse, not better.”
My mind shot to my summer in Chicago, when a similar clash over my condition had played out. A neurologist and a psychiatrist each proclaimed their diagnosis, declared the other’s woefully inadequate, and then threw up their hands saying—since the other doctor was wrong—there was nothing they could do.
“If you just want me out, please just say so. But don’t send me home with these false stories about failing my classes and having no social life. Please don’t do this to me.”
Dickerson appeared as if she wanted to cry.
After several more minutes of rambling, I ran out of words. The room fell silent. Dickerson and Millington excused themselves, then again headed out to where Whitaker was waiting. Minutes ticked by. Only Dickerson returned.
“I’m sorry, Kurt . . .”
I pushed my hands through my hair as I sobbed uncontrollably. “Don’t do this to me. Please don’t do this to me. I can’t go through this again!”
“Kurt . . .”
“I’m not up to this anymore,” I cried. “I know I’m going to give up. I’m not going to be able to keep fighting to get treated. I can’t.”
Dickerson stayed silent, appearing to consider my words.
“Please,” I begged. “I can’t handle this. It’s going to destroy my care. It’s going to destroy me.”
A pause. “We’re willing to take that risk,” Dickerson said.
The dean ordered me to leave campus directly from the health center. She promised I could return the following semester if I wanted, but I felt certain she was not telling the truth.
I was crushed, beaten. I knew I would be forced to combat these falsehoods, to once again prove my sanity, for Naarden to continue my treatment plan. I could barely move, much less talk. My mother and someone else helped me to the car. We drove to the Media Inn. Back in her room, I asked about returning to school to collect my things and say goodbye to my friends.
“We can’t, Kurt,” my mother said. “You’re not allowed on campus.”
Something cracked—my resolve, my fortitude. Nothing made sense. I grabbed a plastic box off a table and threw it against the wall, smashing it to pieces.
“What the fuck?” I screamed. “I can’t go back on campus? What am I, fucking Hitler? I’m so fucking horrible, if anybody even sees me they’re going to fall over dead?”
“Nicholson was right! He told me if I didn’t hide, I’d get destroyed. All of you told me to be open! Look what fucking happened! I can’t go back to school! I can’t pack my clothes! I can’t say goodbye to my friends!”
My rage knew no bounds. I ranted, threw more things, and collapsed on the floor in tears. My mother stroked my hair as she told me she was going to call my brother at Harvard. She needed help. This was more than she could handle alone.
I dozed off in one of the beds but awakened with a start the next morning, my mind throbbing with rage. Eric arrived and tried his best to calm me. My mother knew I trusted Millington; I had already told her that I believed Whitaker had deceived him. She called Millington and asked him to come to the hotel.
He showed up quickly. Pacing, I launched into the same plea from the night before, my voice cracking with fear that, if I returned home labeled as nonfunctioning, my treatment would be disrupted forever.
“Kurt!” he snapped, stopping me short. “It’s over! Just leave, and come back next semester.”
Next semester. I knew there would be no next semester. I believed Millington thought it was true. But based on what had already happened, I knew—even if I survived the lonely months at home until the first half of the school year ended—Swarthmore had no intention of letting me return.
“It’s—” I began.
“Kurt!” Millington said sharply again. “You need to go.”
With that, I hit psychological overload. My emotions shut down. I stopped crying. My muscles relaxed. I sat down on a bed. My thoughts cleared.
I ran the situation through my mind. Someone had told my mother that I would try to fool her into believing I was doing fine in class and in social activities. I needed to confirm I wasn’t imagining things. Then there was my roommate Carl; he had been pretty rough on me. If I disappeared and never returned, would he get hit with the same self-recrimination I felt for what I had put him through? I couldn’t let that happen.
“All right,” I replied calmly. “I’m leaving.”
“That’s good,” Millington said.
I looked at my mother and Eric. I felt nothing. “But I’m not leaving until I get a chance to go back and say goodbye to my friends,” I said.
The room exploded with shouts of anger and disbelief. I sat stoically, saying nothing as everyone around me fell apart. Someone threatened to have me sedated.
“I suppose you could try that,” I replied, “but I’m not going to swallow any pills. That leaves an injection. You can try that, but you’re going to have a fight on your hands.”
More shouts. Millington stormed out. My mother headed to the bathroom in tears. I approached my brother and sat in front of him.
“Eric, I’m not asking for much,” I said. “It doesn’t make sense that they won’t let me pack or say goodbye to friends.”
I noticed he was tearing up.
“Eric,” I said, “I have to go back to school.”
A moment passed as he looked me in the eyes. I could tell he saw something; he understood. My mother returned.
“Mom,” he said, “he has to go back to school.”
A flurry of phone calls ensued. Finally, the administration compromised. I would be allowed to return before I left, but I could not speak to anyone other than a few friends in my room.
I would be given one hour. If I tried to stay longer or to speak with anyone else, I would be physically removed from campus by Swarthmore security officers.
From the book A MIND UNRAVELED by Kurt Eichenwald. Copyright © 2018 by Kurt Eichenwald. Published by Ballantine Books, an imprint of Random House, a division of Penguin Random House LLC. All rights reserved.