A Mind Unraveled Read online

  He interrupted. “You don’t have epilepsy!” he snapped. “You have a seizure disorder!”

  What? I was thunderstruck. My father, the world-renowned physician, had heard Nicholson’s advice on how a euphemism could help hide my condition. Now, after all these months, he was grasping at the term to mask his dismay about the diagnosis. I realized the truth: Despite his training, my father feared the word “epilepsy.” I didn’t know if he was ashamed or ignorant or unwilling to face reality, but I knew I couldn’t let this lie.

  “Dad,” I said, “epilepsy and a seizure disorder are the same thing.”

  “No they’re not! Didn’t you listen to what Nicholson said? You shouldn’t say ‘epilepsy.’ It’s not epilepsy.”

  “Then what is it?”

  “It’s a seizure disorder.”

  I paused. “Okay, so what does that mean? What do I have? How is it different than epilepsy?”

  “It’s different,” he huffed. “And I don’t want to talk about it anymore.”

  * * *

  —

  That clash was a turning point. For the first time, I realized my father was not fit to manage my medical care. But his denial hardened my belief that only Nicholson could save me; after all, how would I find another neurologist at a medical school without my father’s help? Watching my mother’s dismay—and knowing her solution was for me to come home, robbing me of the psychologically essential goal of graduating with my class—further convinced me to protect her. My brother was headed to Harvard Medical School, and I didn’t want to trouble him. My sister lived in Los Angeles, and I kept her in the dark as well.

  For years, I would think about that conversation with my father, as well as other instances where he refused to discuss what was happening, and the impact that had on my well-being. For a long time, I was furious at him; my wife never forgave him, even after his death, because she believes his failures contributed to long-term damage. Eventually, though, I made my peace with him. I realized, even though he was my father, even though he was this famous physician, he was as fallible as anyone. He had not intended to hurt me. He healed people for a living, but with his own family, he could not accept the helplessness he experienced as my seizures worsened, a feeling I shared.

  * An aura is a perceptual change that occurs prior to a seizure. It can manifest in many ways: the hallucination of lights, detecting an unpleasant smell that isn’t there, a sense of déjà vu, confusion, and many other disturbances.

  In a conversation with

  HEINZ EICHENWALD, 1986

  My father

  DAD: I went through a fairly long period of denial. I was thinking it was just a passing thing that you were going through and that even if you had seizures, they would probably get under control once the drug was found. That would be the end of it, and it’d probably burn out. I kept thinking that this was due to some injury that you’d had from falling and that it would heal and it would go away. And after that I was angry at a lot of people.

  KURT: Who were you angry at?

  DAD: I was angry at the doctors.

  KURT: Were you angry at me?

  DAD: Probably, yeah.

  KURT: How come?

  DAD: Subconsciously one knows it’s not your fault that you have seizures, but you’re still making life difficult for everybody and most of all for yourself. So I probably had some anger toward you also.

  KURT: How about now? What’s your attitude and your feeling about you, me, and this?

  DAD: Well, right now I feel like, in a lot of ways, I failed you. I didn’t handle the situation well. I’ve got all sorts of excuses I can make for myself. But they’re just excuses.

  CHAPTER SIX

  “I’ll just wait until he’s available.”

  I rubbed my face, then pulled on the metal cord running from the handset to the pay phone. It was my sophomore year, and I was in the field house calling Nicholson. I had stopped contacting him months before; the conversations had become too pointless and hurtful. The seizures had not abated, but chasing him down without success tore at me. Worse, after adjusting my medication, he treated me cruelly, continuing to throw me off guard with demands that I explain why I didn’t know the answers to questions he’d never raised before.

  But another grand mal seizure had struck the night before; nothing about it had been different, but I’d snapped. Perhaps the buildup of other terrifying complications in recent weeks had set me off. The latest was a white growth on the spot inside my lip that I often bit during convulsions. I had become skilled at denial, but I couldn’t ignore the lump. I knew little about cancer except that it spread; maybe this thing was a malignancy. I researched “oral cancer” at the library and found a photograph that looked vaguely like what I saw in my mouth.

  My decision to call Nicholson wasn’t just about that growth, though. My resilience was faltering. The gambit of blaming my seizures on imaginary Michael had worn thin. These dreadful things were happening to me, not some fictional, faceless character. Also, I feared I was annoying my roommates with the detailed questions after seizures—where had I fallen, what did I look like beforehand, how was my body positioned during the episode?—a response to Nicholson having chastised me for not knowing everything that occurred in a convulsion.

  And I was losing control of my secret: During one breakfast, a classmate joked that the audience at a concert was having “epileptic seizures”; another student laughed, looked at me, and said, “That couldn’t be. Kurt wasn’t there.”

  I stared at my bowl of cereal, silent and ashamed.

  I needed help from someone. Anyone. The family dynamic and my own failings continued to block me from seeking another doctor. My girlfriend and I had broken up, mostly because our age difference prevented us from merging our social circles. My roommates handled the physical demands of my seizures with composure, but I tried to avoid putting my emotional health in their hands. Nicholson was all I had. As much as I hated him, I still thought he was the only person who could save me.

  So I made my journey down to the field house, vowing to stay on the phone until we spoke. His assistant told me that he was in the lab but would call when he returned. I wasn’t falling for that again. I would wait on the line for him, I told her.

  “It could be ten minutes,” she cautioned.

  “That’s fine,” I said.

  I heard a soft buzz after she pushed the HOLD button. There was no place to sit; the handset cord didn’t stretch, so I couldn’t rest on the floor. I leaned against the wall as time passed, alone in the cavernous building.

  Five minutes.

  Not much longer, I figured. I read the instructions on the phone about how to make different kinds of long-distance calls.

  Ten minutes.

  Okay, time’s up. Nicholson will pick up any second now.

  Fifteen minutes.

  I guess his assistant underestimated how long it would take him to return to the office.

  I heard the door to the field house open. A woman walked in. I hoped she didn’t want to use the phone. She passed by and headed to the basketball court.

  Twenty minutes.

  I squeezed my forehead above the bridge of my nose, a nervous habit I had developed in the previous few months.

  Twenty-five minutes.

  My stomach knotted. I didn’t know what to think.

  Thirty minutes.

  Something’s wrong, I thought. Maybe Nicholson’s assistant had neglected to tell him I was on hold. I could call back, but it took time to enter all the numbers to charge a long-distance call on my AT&T card. If I disconnected to redial, he might pick up the phone right after I hung up and wouldn’t be available half a minute later when I called back. I just needed to wait.

  Thirty-five minutes.

  I wiped away tears. I don’t know what to do. More studen
ts came into the building. I turned away from them. Was it time for sports teams to meet? I didn’t know. They disappeared down a hallway.

  Forty minutes.

  I can’t. I can’t. I can’t do this anymore. I can’t.

  Forty-five minutes.

  Okay, I decided, I’ll call back. I looked at my AT&T card and tried to memorize the number. It would take me only thirty seconds, just thirty seconds out of forty-five minutes. What was the chance Nicholson would pick up during those thirty seconds? I hesitated, made my decision, then pushed down the metal bar, disconnecting the call. I rushed to redial but forgot the AT&T number. It took two tries for the call to go through.

  “Hi, it’s Kurt Eichenwald. Is Dr. Nicholson back yet?”

  “Oh, Kurt, I’m sorry. He’s gone home for the day.”

  My mind went blank. “But…I was…When did he leave?”

  “About thirty minutes ago.”

  I fell silent. Something shattered inside me, something that had held me together emotionally for a year, something that had kept me functioning. Then rage of an intensity beyond my experience rushed out in an uncontrollable explosion of anger, fear, hopelessness, and helplessness.

  “Fuck you!” I yelled. “And fuck him!”

  I pounded the handset against the receiver again and again, banging plastic on metal as deep, racking sobs shook my body. I screamed repeatedly, a wordless, guttural shriek of pain. I can’t live like this. I don’t know where to go; I don’t know what to do. I have no doctor. I’m alone.

  A man rushed toward me. I continued smashing the phone down, feeling lost, emotionally paralyzed, ravaged. The man touched my arm. I pushed him away. Then I ran. Still weeping, I hit the glass door of the gymnasium hard. It flew open with a bang as I raced into the street.

  I ran going nowhere, going anywhere. I wanted to get away from me, from Nicholson, from Michael, from everything. I could not sprint fast enough to escape them all. I tripped on the grass next to Parrish Walk, tumbled across the asphalt, and stood. Someone called my name. I kept sprinting.

  It seemed like I ran forever—across campus, into the village, down sidewalks, and back. I found myself at Al and Peggi Bloom’s house. I pounded on the door, my face dripping from tears and sweat. When one of them answered, I lurched inside without waiting to be invited. I sat in the same chair I’d used months earlier and brought my hands to my face, sobbing, choking, and trying to talk at the same time.

  I have almost no memory of that discussion, and the taped diary I made twenty-four hours later—a rambling tirade of pain and grief about the events of the previous day and year—reveals little of what occurred at the Blooms’ house. What is clear is that they decided not just to counsel me but to intervene. Peggi promised to put me in contact with her Philadelphia neurologist.

  Days passed before I spoke on the phone with Peggi’s doctor. The contrast between him and Nicholson could not have been starker. Patience and compassion guided his words. I immediately overcame my fear of annoying—and then losing—my doctor and posed complicated questions I should have asked long before. The neurologist provided careful and comprehensive responses, although he expressed surprise that I knew so little about epilepsy. I mentioned that Nicholson had told me I suffered from petit mal episodes, but the Philadelphia doctor expressed doubt. Based on my answers to his questions, he said, it seemed more likely those spells were in a different category. I didn’t know who was right, but I didn’t care. What mattered was a neurologist was speaking to me without condemnation.

  Then the bad news. He wasn’t taking new patients and didn’t believe he was the best doctor for me. Given the number of seizures I experienced, he said, I needed a physician with admitting privileges at a facility close to Swarthmore, not thirty minutes away in Philadelphia. While he didn’t know any neurologists who practiced near the college, he assured me I shouldn’t have trouble finding someone.

  Given that my father had always chosen our physicians without consulting us, I had no idea how to track down a doctor. My first thought was to contact an epilepsy organization in the area and ask for a recommendation. At McCabe Library, I flipped through the local telephone book; the listings jumped from Epicure to Episcopal Academy—no epilepsy groups. Then I turned to the listings under N and found a handful of medical groups with names that began with variations of “neurological.” I chose the closest one and wrote down the number.

  Later that week, I called the nearby office of Dr. Milton Craddock. His staff told me that yes, he treated epilepsy and, after hearing details of my condition, scheduled me for the next day.

  I took a cab to Craddock’s office and found a seat in the waiting room. A waiting room. While under Nicholson’s care, I had never seen a waiting room. He didn’t have one; his office was off the hallway that led to a lab. A waiting room meant patients. Craddock treated people instead of conducting research.

  The nurse called me into the exam room, where I saw a poster with a drawing of a brain. I was still studying the image when Craddock walked in. He was smiling, cheerful, the opposite of Nicholson in every way. He conducted the same neurological test—“squeeze my fingers; push my palms”—but explained what he was doing. He asked about my medical history but, unlike Peggi Bloom’s neurologist, said nothing when I mentioned my supposed petit mal seizures. I couldn’t remember the type of seizure Peggi’s doctor had said was the more likely cause of my staring, but I figured if Craddock didn’t care, neither did I.

  He sent me to have my blood drawn to check medication levels. Then it was back to Craddock. He told me that he would be sending me for an EEG and a CAT scan. I liked him, and the more we talked, the more I trusted him. I decided to ask the most important question.

  “Do you think you’ll be able to get my seizures under control?”

  He smiled broadly. “Of course!” he exclaimed.

  I left Craddock relieved. He was supportive, exactly what I needed. I had found him on my own. I had taken control of my health. A renewed sense of strength surged within me.

  A few days later, I returned to my room and, on a whiteboard on our front door, saw a message that Craddock had called. I quickly erased it, worried that my hall mates would wonder why a physician had telephoned. Then I walked to a nearby pay phone in our dorm; I no longer needed to sneak off to some secluded spot. There would be no pleading, no outbursts, no confrontations, just a quiet talk. Most likely no one would understand or care about the topic of conversation from hearing my side of it.

  A woman answered, I identified myself, and soon Craddock was on the line. Relief washed over me as I realized I now had a doctor willing to speak to me.

  “Kurt, your blood levels came back. It’s no wonder the seizures haven’t stopped. Your Tegretol level is just above the minimum, and your Depakene is only a little better.”

  I knew that already. “But doesn’t the medication start working when it passes the minimum level?”

  “No. The blood level is a range. Some people get better at the minimum. Some require the maximum. Think of it like alcohol. Some people get drunk off a single beer. Others can drink a case with no effect. There is no single right answer. It depends on the person.”

  That made sense. Anticonvulsants weren’t like aspirin, with a recommended number of pills to take. I was about to ask a question, but Craddock answered it before I had the chance.

  “We need to increase your dosage of both medications.” He instructed me how much I should be taking each day and at what time. He promised to send me new prescriptions, since the higher dose would cause me to run out of the drugs more quickly.

  I hung up, ecstatic. Everything that had seemed so complicated and mysterious with Nicholson was now simple and clear with Craddock—my convulsions had not been controlled because my treatment was insufficient, because Nicholson was either too arrogant or too incompetent to recognize his error. This, I was su
re, was the turning point; I was going to get better.

  But I was wrong. While Craddock held himself out as a neurologist, he was not certified in the field. Other than epilepsy, he treated no purely neurological conditions, instead dealing with problems like schizophrenia, bipolar disorders, and other biologically based psychiatric conditions. I met other epilepsy patients he treated but have since learned we were a small part of his practice. His understanding of anticonvulsants and their dangers was shallow at best.

  I could not have known at the time, but this friendly, supportive man whom I saw as my potential medical savior was instead, out of near-criminal incompetence, about to push me terrifyingly close to my own death.

  In a conversation with

  DR. ALLAN NAARDEN, 2017

  My former neurologist

  Giving somebody false hope is worse than not giving them any hope at all, I think. You want to be honest with people even in small things because if you’re not, then how will they believe you in anything that you say? The whole idea is the trust that you develop with your patient is something that’s the responsibility of the doctor. It’s as important as the medicine that you give somebody, if that’s necessary.

  CHAPTER SEVEN

  Without warning, my muscles went limp, and I plunged down a flight of stairs. I was conscious, feeling every slam, every bump, every scrape, but I never flinched. It was as if I had suddenly become paralyzed. After crashing to the bottom, I was bruised and beaten but not in agony—nothing broken. Maybe, I figured, my inability to move had protected me as I tumbled.

  These “drop attacks” had started a few weeks earlier in the second semester of sophomore year, and there was no hiding them from other students. Worse, the number of seizures was escalating. Every few days, I either toppled in one of the new episodes or awoke from convulsions. The falls occurred anytime; staying in my room at night accomplished nothing. Witnesses to my collapses marveled at how quickly I went from upright to crumpled on the ground. I frequently heard the words “You fell like a ton of bricks.” One friend likened it to seeing a marionette tumble after someone cut its strings.