A Mind Unraveled

by Kurt Eichenwald

  I agreed. For the first time in a decade, I would allow him to change my anticonvulsants.

  Years later, I wondered what had happened with the experimental drug Pressa had pushed on me. The FDA approved its usage, but it was quickly withdrawn after a number of patients developed a potentially fatal illness. The government eventually allowed the medication back on the market with severe restrictions. The manufacturer warned that it posed significant risks and advised using it only in extreme cases once safer medication had failed. In fact, doctors were forbidden from prescribing the anticonvulsant unless patients signed documents stating that they had been warned about the magnitude of the danger.

  Patients prescribed the medication succumbed to aplastic anemia. Anyone taking the drug was one hundred times more likely to contract it. People like me, who had already experienced life-threatening bone marrow problems caused by an anticonvulsant, are most at risk of developing this potentially fatal disease. The package insert for the medication contains a black box stating that people with my medical history should never take the drug under any circumstances.

  At the time Pressa pressed me to join the research, those perils had not yet come to light. Had he succeeded in manipulating me into the clinical trial through a false depiction of my bleak future, I could be dead today, a victim of the same blood disease I’d barely escaped a decade before.

  An audio diary from

  THERESA EICHENWALD, 2017

  Epilepsy was not something I thought about when we got engaged. Really, in our day-to-day lives, it didn’t factor in. Kurt took medication, sometimes he had seizures. I was frightened about getting married in general, but that had nothing to do with his health. Besides, I was getting desperate. [laughs]

  I’m not quite sure what to say. Kurt’s asking me about memories of him and epilepsy, and how it affected our lives, and what I think of it. There’s none of that to talk about. What there is to talk about is how much humor and wit and fun we have had.

  There is something. One of the things that I found very, very difficult in the beginning was the feeling that he wasn’t trying to fix this. I was trained in medicine, and when you’re first starting off in medicine, you always feel that medicine can manage to fix everything and that things are simple. And Kurt’s fears had made him very, very reluctant to seek medical attention. Rightfully so, he had only dealt with miserable experiences with doctors who had nearly killed him, and I didn’t get it, and I really resented the fact that he wasn’t trying to get better and get “fixed.” I kept thinking that if he would only see a new neurologist or a better neurologist, that he would be fine. I still feel guilty about having hooked him up with a neurologist I heard talking, who made it sound like epilepsy was a simple thing to take care of. But it’s not always a simple thing.

  He was afraid, and there were lots of things I didn’t understand about him being afraid, and I took a long time to get it. And when I did, I think he recognized that I got it, and he relaxed, and he started to be a little calmer when he was sick. It’s all a question of people reading each other correctly and treating each other correctly. I think that that’s true in every marriage and I think what happens in marriages that fall apart is people don’t try to understand each other and don’t try to figure out how the other one works. It is also very, very possible that the fact that he had epilepsy and the fact that I have my own baggage made us pay more attention to each other and recognize that we each need each other very, very much.

  CHAPTER TWENTY-NINE

  The late-morning sun bathed Manhattan’s West Seventy-second Street as Theresa and I headed home. I scarcely noticed. An intense desire to tear off my skin invaded my thoughts, along with an agitated sense that something else was wrong, something I couldn’t identify.

  My glasses. They had bent. I was sure of it. I yanked them off my face and stopped in my tracks, twisting the frames to realign them until the metal snapped in my hands. Overwhelmed, I dropped to the sidewalk and sobbed as pedestrians stepped past us. Theresa kneeled beside me, quietly speaking while I aggressively rubbed my hands over my eyes. As if comforting a child, she assured me everything was fine, then coaxed me to stand. Gripping my arm, she led me the half-block to our apartment.

  I was in withdrawal from my decade-long dependence on high doses of Mysoline, the barbiturate that was my second-line anticonvulsant after Dilantin. Until Naarden started weaning me off the drug, I hadn’t known I was a legal addict. Obsessions stuck in my head, like the false certainty my glasses had bent. I exploded in anger and anxiety, and my forgetfulness worsened. Once, I took a friend to dinner and, during the meal, ranted irrationally about some inconsequential matter. I paid the bill and stormed out; seconds later, our waitress ran after me on the street and handed me twenty-five cents. “I don’t need a tip like this,” she said angrily. I apologized, told her I wasn’t well, hadn’t known I had left such an insulting sum, then handed her a twenty-dollar bill before rushing away like a madman.

  Withdrawal struck in waves. Naarden, in consultation with Brachfeld, my New York neurologist, would cut the dosage. The irrationality would return, then subside, and soon after he would reduce the prescription again. Sleep transformed into hours of tossing and turning and popping out of bed to pace around the apartment.

  Brachfeld prescribed Ativan to ease the symptoms. Even after purchasing the pills, I refused to take them. My brain was a mess, I figured; Ativan was another addictive medication. Better to suffer withdrawal, I thought, than to make things worse with more drugs.

  Still, I always carried the bottle of Ativan in my pocket, just in case. One day, I was at my desk in a four-person cubicle when I realized I was sweating through my shirt. I wanted to punch someone. I glanced around and saw a reporter I considered a friend. I became angry for no reason.

  You’re going crazy, I thought. I took out the Ativan, struggled to unscrew the childproof cap, then swallowed the pill without water. About twenty minutes later, I felt better. I considered taking more than had been prescribed. I have to get control of myself, I thought. I put the bottle back in my pocket, then glanced toward a filthy window about forty feet away that overlooked West Forty-third Street. I knew that right outside, in Times Square, drug dealers were whispering to passersby that they were ready to sell.

  A calm came over me. I thought about illegal drug users who kicked their addictions. I was coming off a prescription medication slowly, with medical assistance. In the past, I had dismissed addicts as people who only needed to sweat it out. Now I understood: They desperately required the care of professionals to help them wean themselves from their dependence. I developed enormous admiration for addicts who managed to get clean.

  The process of tapering off seemed endless, until the day came when I finally took my last piece of a Mysoline pill ever. A milestone, but I dreaded the next step: About a month later, my doctors would start adding a new medication. When that drug was at full strength, I would slowly come off Dilantin.

  Weeks passed. Then one afternoon at work, a thought: When was my last grand mal seizure? I couldn’t remember having had one in a long time. I called Theresa and asked if she knew the date of my last convulsion. She told me none had occurred in more than a month.

  I contacted Brachfeld, who sent me for a check of my drug levels. The Dilantin in my bloodstream had not changed—near the top of the therapeutic level, too high to increase the dosage. But something unforeseen had occurred: The amount of Dilantin unbound to protein had increased. This “free Dilantin” was the active portion of the medication. The doctor explained the situation until I understood: Removing Mysoline had decreased the stimulation of an enzyme, which apparently led to a higher concentration of free Dilantin. Even though my dosage had stayed the same, the therapeutic amount in my blood had increased. That combined with the elimination of the sleepiness associated with Mysoline—a side effect that could trigger seizures—led to better control.
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  I told my neurologists that I would not switch off Dilantin for a while; I wanted to wait and see what happened. A month passed. And another. No convulsions. I cautiously allowed myself to believe that, after twelve years, the grand mal seizures may have ended.

  Smaller seizures began. With little warning, the muscles in my left shoulder would contract, leading to a sharp movement of my head. This could be accompanied with a high-pitched, uncontrolled vocalization that sounded like a bark. Once this happened in a store where Theresa and I were browsing, and a woman rushed out of the back room announcing she wanted to see the dog. I hesitated mentioning this to Brachfeld—I still feared how doctors would react to bizarre symptoms. When I told him, he was unfazed, saying these were myoclonic seizures and ictal barking.

  “Seriously?” I replied. “It’s actually called barking?”

  “It sounds like barking, doesn’t it?” he said.

  I took to calling these small seizures “circuit breakers,” imagining them as tiny bursts of electrical energy that shut down potential convulsions. This fantasy made me happy, since I could see each jerk as grand mal seizures I had dodged. These new episodes ended in a second. There was no postictal period, no confusion, no sleepiness.

  For months, I still braced myself each day for convulsions that never came and was surprised that I experienced enormous trouble adjusting to this unexpected tranquility. Occasionally, I became convinced that a grand mal seizure was imminent, but nothing happened—each time, it was just panic born of my past.

  Our lives calmed. No longer heavily sedated by Mysoline, I could go to bed and wake up refreshed, without having to drag myself from a drug-induced torpor. So it was that when Theresa came home from the hospital one weekend morning and jumped on the bed, I awakened instantly.

  “Good morning, Daddy!” she said excitedly.

  She was pregnant with our first child. And with the convulsions gone, I would be able to hold our baby without fear.

  * * *

  —

  About a dozen expectant couples sat on chairs in a circle, listening as a Lamaze instructor discussed the miracle of childbirth. The opening monologue droned in treacly platitudes; she wasn’t teaching us anything, except maybe how to write bad greeting cards. I knew Theresa, who was leaning against me, was having as much trouble as me keeping a straight face.

  The instructor glanced around the circle. “Now I want each of you to tell me why you came today,” she said to the men.

  To learn Lamaze for childbirth so we can be there for our wives, I thought. What other answer is there?

  A lot, apparently. The other men waxed on with saccharine fervor. Not one gave the obvious, simple answer that he just wanted to be taught about Lamaze. I thought the others were afraid to be honest, instead feeling compelled to rhapsodize disingenuously. Eventually, the instructor turned to me.

  “So, Kurt,” she said, “why did you come to this class?”

  “I don’t know.” I shrugged. “To pick up chicks?”

  The instructor and other couples looked at me in horror as Theresa broke out laughing, unable to stop until tears flowed from her eyes. She hugged me, and we both chuckled some more.

  We knew our pasts made it difficult for us to take daily life too seriously. One of us had been immersed in the imminent threat of death for years, the other in the emotional remnants of genocide. We were loving, caring, and giving, but neither of us could tolerate mawkishness. We were never afraid to be matter of fact or to crack a joke at the expense of soppy, vainglorious emotionality. That was how we would raise our children.

  Adam was born in 1992, and in the hospital, I noticed something alarming: When he slept, Adam trembled and twitched. We had been warned epilepsy had a genetic component, and the possibility I had passed on the condition terrified me. The doctors wanted to take him to the ICU for observation, but Theresa refused to send away our new baby. After we returned home, I filmed Adam as he slept, and we brought the video to a neurologist, who ordered an EEG. Afterward, she assured us Adam was fine and the twitches would stop. They did, about a month later.

  Our second son, Ryan, was born in 1995, followed by Sam in 1997. As I had promised myself years before, I made family the centerpiece of my life. Everything else—jobs, prestige, whatever—was not even on the list. Theresa and I hugged our sons and told them we loved them multiple times a day, and I always sang to them after reading a bedtime story. We never listened to the radio while driving, instead using the time to talk. Although I had never been an athlete, I coached all of their sports teams.

  Both Theresa and I made sure our sons knew they mattered more to us than our jobs. Once when I was in Houston covering a long-running criminal trial, I phoned the Times to say that someone needed to take over for a day; I was going home for Adam’s tenth birthday. My boss replied that I was not allowed to leave Houston.

  “We all have to miss things,” he said.

  I answered, “I don’t.” The Times could have a reporter there or not, I said, but I would not be absent during my boy’s party. Having given him no choice, my boss caved and sent another reporter to take my place in Houston for two days.

  In 2001, we abandoned our lives in New York to benefit our children. Commuting had robbed me of family dinners; the Times had tried to accommodate the situation by allowing me to work frequently at our home in nearby Westchester County. But it wasn’t enough. Theresa and I were both unhappy about their schools. Worse, we realized that children in New York—even in the suburbs—needed sharp elbows and thick skin. Our boys had neither. When we heard my mother might be losing her eyesight, Theresa announced it was time to leave. We wanted our kids to grow up in Dallas. On previous trips there, Theresa had visited my school, St. Mark’s, and we both thought they would flourish if they attended.

  I approached one of my bosses, told him my family and I were planning to live in Dallas, and asked if I still could work at the paper. He responded that senior editors would have to confer about whether I would be allowed to transfer.

  “You don’t understand,” I replied. “I’m not asking for permission. I’m going. The only question is whether you guys want me to continue to work for the Times when I’m there.”

  That night, as I lay in bed beside Theresa, I thought, Who walks away from The New York Times? I immediately knew the answer. Someone who understands what matters in life. Someone whose values have been shaped through suffering. A feeling I’d experienced in the past came roaring back, stronger than ever: I was glad I had been so sick. I was glad that I had confronted my own mortality, contemplated suicide, endured severe pain, been thrown out of school, been denied employment. It made me the person I had become. Without those experiences, I would have been a lawyer. While there is nothing wrong with the profession, I would have chosen law not out of interest but to dodge a fear of failure by taking a well-worn path. I loved my life. If I could go back in time, I wouldn’t want to change a thing, because my trauma forced me to confront myself, to discover who I really am. To be happy.

  * * *

  —

  We moved to Dallas in 2001. I continued at the Times as an investigative reporter, and Theresa opened a new medical practice.

  No one in the family remembers when Theresa and I started discussing my epilepsy with the children—they all say they knew about it as far back as they can remember. I continued experiencing jerks and barks, and while Ryan feared for my well-being, he came to understand this was just part of my life and I would be fine.

  We ate dinner together almost every night, spicing it up with boisterous laughter, chatter, and bizarre jokes. Often the boys and I took turns trying to shock Theresa or to make her fall into uncontrollable giggles. When the kids witnessed small seizures, they kidded about them, just as my college roommates had. Our boys’ friends often dropped by uninvited to join in our raucous meals. Taking a cue from my sons, they rea
cted to my occasional severe twitches with disregard or jokes, not alarm.

  We established a few major principles in the house—no emotional secrets; no one could be disciplined for admitting to misbehavior; and nothing would be punished more severely than lying, even through omission. However, we would also respect our children’s privacy, never examining their computers, texts, or other communications with friends. The result of this expression of mutual trust was that the boys consulted us on deeply personal issues into their teenage years and beyond.

  But I felt like a hypocrite. Despite our commitment to open communication, I kept a major secret, one that still tore at my psyche: I had never revealed to Theresa I had been raped in my midtwenties. I feared not only what she would think but also the impact on me from saying it out loud. When I’d first discussed what had happened with a psychologist years earlier, I hadn’t been able to bring myself to utter “rape.” Instead, I’d relied on the more abstract “sexual assault.”

  My decision to tell Theresa came as a sudden surprise to me. I hadn’t planned on disclosing anything but suddenly felt a compulsion to reveal the truth. In our bedroom, I sat in an overstuffed chair and said I needed to discuss something important. Years before, after a grand mal seizure, I said, I had been raped. I winced at saying the word out loud and braced myself for her reaction.

  “I know,” she said gently.