A Mind Unraveled Read online

  By then, freshman orientation at Swarthmore had passed, classes were under way, and newly minted classmates had begun forming friendships. I arrived with clothes drooping on my body, crutches, a green pallor to my face, and the misunderstood, not-quite-correct story that I had contracted typhoid fever.

  I had been assigned to a four-person suite in Wharton Hall, among the most popular and storied dormitories on campus. Built in 1903, it exuded quaint collegiate charm. Gargoyles depicting every season and the signs of the zodiac decorated eaves of the building. Wrapping around three sides of an expansive patio, Wharton featured some of Swarthmore’s largest dorm rooms; ours included two bedrooms and a living area that easily accommodated four work desks, bookcases, the glider chair, stereo tables, and an ancient, disheveled couch.

  Another roommate, Pat Cronin, had been a friend at St. Mark’s. Fellow Swarthmore students lumped us together as “the Texans,” a segregating designation I hated. Carl was a boyish quasi athlete from Chicago, and the fourth roommate, Franz Paasche—born in New York, raised in Canada, and educated at a Vermont boarding school—rapidly developed a reputation as the coolest kid on the hall.

  In the first days after my arrival, Carl and Franz rarely spoke to me. Carl later told me that my appearance—particularly the sallow face and crutches—had put him off; that, combined with the dreaded “typhoid fever” label, led him to keep his distance. Franz correctly concluded I was decidedly uncool. With my limited ability to roam campus and most cliques already formed, Pat remained my only friend in those early days.

  Then came the bees. After the first few drifted in, I lifted one of my crutches and pushed the rubber tip against one, crushing it into the wall. As more flew through the window, I realized that either there was a nest directly outside or something in the room had attracted a small swarm.

  “Carl, we’ve got a bee problem.”

  He turned around from his desk and saw the buzzing intruders; again I lifted a crutch and flattened another bee into the floor.

  “Give me the other one,” Carl said, reaching for a crutch.

  He closed the window, and for the next few minutes, Carl and I competed in an insect safari. Once, I threw a crutch javelin at a bee, missing my target but ratcheting up the mood of hilarity. Carl dashed about, squashing them on the floor and against walls. We laughed at the spectacle—me hopping on one leg, balancing myself as I whacked at bees, Carl with the other crutch trying to top my score in the killing spree. I lost the competition, but in that bee hunt, I won a friend. From then on, Carl would remain one of my closest buddies.

  My strained relationship with Franz persisted—bee hunt or not, I remained uncool—but we became closer a few weeks later when he returned from a frat party feeling ill. He hadn’t drunk much and worried he’d unknowingly downed punch made with grain alcohol. I took him to the men’s room. Whatever he’d drunk came back for a repeat appearance, hitting the toilet, floor, and wall. When the heaves stopped, I put him to bed, then returned to the bathroom to mop up the mess. Apparently, cleaning other people’s vomit passes for cool, and we, too, became good friends. In our conversations I learned he came from an amazing family—his great-grandfather General Kurt von Hammerstein-Equord had been part of a failed plot to kill Adolf Hitler, while this hero’s daughter, Maria Paasche, gained fame for helping Jews escape Nazi Germany on her motorcycle. But my bond with Franz didn’t fully form until spring vacation, when we traveled to his home in Toronto. He showed himself to be enormously thoughtful and kind; he, in turn, learned that I could be a lot of fun.

  Carl, Franz, and I grew to have one of those cliché “three musketeers” friendships. All of us were comedians of sorts—Carl was the king of the one-liner—and we began to attract a circle of friends who hung out in our room chatting endlessly over slices of pizza, sat with us in the dining hall, or accompanied us to parties. We also talked politics. I especially remember debating an ardent Marxist, throwing him off guard with a handful of questions; his face drooped as he proclaimed sadly, “Everything I’ve believed is wrong.” While his obvious feeling of devastation gave me a twinge of guilt, I realized I loved the intellectual swordsmanship, camaraderie, and challenging conversation that came with college life.

  The roommates soon discovered coincidences between us that defied probability, particularly since we had been assigned to share a suite arbitrarily. Franz’s grandfather Milton Levine had been one of my father’s medical school professors, and the two remained lifelong friends. Carl’s middle-school girlfriend in Chicago had attended high school in Vermont with Franz, and even dated his roommate. We continued discovering unlikely overlaps in our lives for decades, well into our fifties.

  Time passed, with Pat and I seeing less of each other as we drifted toward different circles of friends. Carl, who shared my love of horseplay, pitched ideas for occasional off-campus adventures that I gladly joined. In one escapade, we hopped a bus to Atlantic City; we met the casinos’ age minimum of eighteen, but Franz, still seventeen, grumbled about being left behind.

  Our destination was Caesars Boardwalk Regency. As we entered the cavernous casino, a security guard demanded identification—no surprise, since Carl looked at most sixteen. Smells of alcohol and grilling meat wafted through the room. Flashing lights, spinning wheels, and ambling waitresses imbued the place with a relentless air of excitement. But when we passed the slot machines, I cringed at the sight of haggard-looking elderly people feeding in coins they obviously could not afford to lose as they searched for a big win that would never come.

  Carl and I decided to limit ourselves to one hundred dollars in losses and hit the two-dollar blackjack table. We had been doing well when a man wearing a white suit and gold chains joined us.

  “They call me The Idiot,” he said out of nowhere. He told us he had just lost a fortune playing high-limit blackjack. “Now I have to sit here with you losers at the two-dollar table.”

  I’d never met a high-stakes gambler before—or even someone who professed to be one—and, despite his self-identification as The Idiot, I was entranced. The dealer slid another round of cards out of the shoe. Carl and I had placed our chips in the betting box when The Idiot spoke up to demean our decisions. He doled out advice; since this was a man who really knew casinos, we did as we were told. And we started to lose, lose, lose. As we approached our loss limit, we suddenly looked at each other in astonishment. I don’t remember if we said it aloud or just understood our shared thought.

  Why are we listening to a guy who just lost a ton of money?

  So we started to ignore The Idiot. His rants about our playing decisions continued even as we climbed back from the hole he dug for us. I don’t remember if we ended up winning anything, but I didn’t care; we had a blast.

  Back at Swarthmore, the four roommates enjoyed ribbing one another in bull sessions about the merits of the places where we grew up—Pat and I in Texas, Carl in Chicago, and Franz in Canada—and the flaws of the others’ old stomping grounds. In early November, when six American diplomats were rescued from Iran by the Canadian government and the Central Intelligence Agency—a caper later depicted in the movie Argo—someone ran a full-page advertisement in The New York Times blaring, “THANK YOU, CANADA.” Franz posted it on our bulletin board. In response, I cut out a photo of the New York City Marathon and wrote a caption beneath it saying, Millions of Canadians flee for America after a guard accidentally left open a gate. That went on our front door. Later that week, the Times published an article about Albert Spaggiari, a French master thief who escaped from the police by calmly opening a window; smiling; saying, “Goodbye”; and leaping out, bouncing off a car before riding off on a waiting motorcycle. The roommates declared him our new hero. We clipped out the story and up it went next to the “THANK YOU, CANADA” ad.

  That same month, Carl and I were goofing around in our dorm room. We had started periodically launching into fake fights for
reasons only teenagers could understand. During one match, Carl took a swing at me, and I flew backward theatrically. I had not seen the wooden desk chair a few feet behind me and smashed my head on the seat. The next thing I remember, I was on a bed at the campus health center. A doctor diagnosed a concussion. Something about the way I hit my head led the medical team to give me a neck brace, which I was told to wear for a couple of weeks.

  Afterward, friends noticed that I periodically zoned out. I experienced an embarrassing episode when I suddenly became aware I was sitting in the dining hall with wet pants and my lunch mates staring at me. Apparently, I had started to stare while holding a glass of soda; it had fallen onto my chair and shattered.

  Shortly before Thanksgiving vacation, I woke up confused; my muscles and hand hurt, and my head ached. I was on the ground beside my bed. I remembered nothing about what had happened but assumed something had caused me to slide off the mattress, leaving me in this disconnected state.

  Terrified, the next morning I called my mother to tell her I needed to see a doctor when I came home.

  An audio diary from

  ELVA EICHENWALD, 1982

  My mother

  I want to go back to the beginning, in the fall of 1979. Kurt called me one evening to tell me he wanted to see a doctor as soon as he came home for Thanksgiving break. He said something was wrong with him, that his stares were worse and something had happened in his sleep. I made an appointment for him to see his pediatrician when he first came home from school. Just before he came home, the pediatrician’s office called and canceled the appointment.

  I was very confused at that time. I had not told Heinz about Kurt’s fears, because he didn’t deal well with family health problems, but once the pediatrician canceled, I felt I had to tell him. Heinz was very upset and tried to find a neurologist, but everyone he knew was out of town. I suggested a neurologist I met through St. Mark’s, but Heinz turned that down because he didn’t know the man. He then said there was somebody at the medical school who was supposedly pretty good. Thus began our trials and tribulations with Charles Nicholson.

  CHAPTER THREE

  In a dreary hospital hallway, I glanced at plastic chairs decorated with gloomy colors that would never be found in a box of crayons, much less in nature. My mother sat beside me, and I studied her face. Her look of fear crushed me. Whatever was happening with me, I felt terrible for the distress it caused her.

  We were waiting for technicians to perform a CAT scan. After hearing about my strange experiences at school, my father, insisting only academic doctors could be trusted, arranged for me to consult a neurologist who worked under him at the medical school. Family medical decisions were always dictated by him, so his choice of a physician was the final word.

  The doctor, Charles Nicholson, rarely saw patients, my father said, instead devoting himself to research. Years would pass before I realized why that made him a terrible choice. Nicholson was a pediatric neurologist who spent his time in the lab; I was over eighteen, an adult, and needed someone with hands-on clinical expertise. To this day, I believe Nicholson would have refused to be my doctor if my father hadn’t been his boss.

  The day so far had been a blur. Because of the episode at school, my parents had forbidden me from driving, so my mother brought me to my appointment. I had spent almost no time with Nicholson but already disliked him. He said little to me and ignored my mother. When he took my medical history, I mentioned the staring spells, which led to numerous questions about how I felt before and after those episodes. His inscrutable face flashed with recognition when I mentioned that I had been seen picking at my clothes while staring. Then we discussed my experience waking up on the floor next to my bed. All the while, he exhibited the bedside manner of a termite inspector.

  He performed a neurological test, a process I would repeat dozens of times in the years that followed: Squeeze his fingers, push his outstretched hands, follow a light with my eyes. He knocked my knees with a hammer and squeezed around my neck.

  After the examination, Nicholson sent my mother and me for more tests at Children’s Medical Center. At the time, it didn’t strike me as odd that I was an adult wandering the halls of a pediatric hospital in search of the lab for my next diagnostic test. We found the office for my EEG, a test that records electrical activity of the brain. The technician described how the exam worked and why it was used, then bound clumps of my hair with rubber bands to expose parts of my scalp. Afterward, he dabbed glue in each spot before attaching the electrodes. My mother thought I would be amused at my appearance and brought out a mirror. The sight horrified me. I snapped at her, and she apologized. We were both struggling our way through this, blindly trying to buck up the other.

  Throughout the day, I took each step as if by rote. But when I saw my mother’s face as we sat on the plastic chairs outside the CAT scan office, reality crashed down. A massive machine was about to take innumerable images of my brain. The doctor was looking for a tumor.

  A tumor.

  I hadn’t considered this before but suddenly could think of nothing else. I might be dying. And I would find out soon.

  The technician appeared and invited me in. A giant, donut-shaped machine stood to one side. Its size shocked me; I had thought it would be no bigger than an X-ray device. Minutes later, I was supine on a table, the top of my head facing the machine’s massive hole. I may be mixing up my recollections—I have had many scans since then with different devices—but I believe this was the first time a technician infused a dye into me to make the pictures easier to read. He slid a needle into my arm, and the dye seeped in.

  “You’re going to taste something metallic,” he said.

  I waited. I wasn’t tasting anything…Wait, yes I was. Perhaps, I mused, I now knew the flavor of a rust-covered lightning bolt. My face flushed.

  The table quietly trundled back and forth through the donut hole as the technician adjusted my location under a red alignment laser. I stared at the white casing a foot or so from my face. I wondered if this was how it felt to be in a coffin.

  The table moved out a little and then back in. A whirring sound started each time the table stopped.

  “Just a minute,” the technician called out.

  Later, I would learn that CAT scan technicians always checked the images before ending the test. But in my feverish state of apprehension, I thought he had discovered something alarming. Soon, the moving table brought me out of the machine, and the technician said we had finished.

  “Did you see anything?” I asked.

  “You’ll have to ask your doctor.”

  I’m dying. I was sure of it. I considered the technician’s refusal to answer as confirmation that he had seen a tumor and wanted to leave the job of breaking the bad news to Nicholson.

  That afternoon, I rejoined Nicholson, exhausted. My mother had accompanied me all day, and my father came down from his office to hear the verdict. I sat beside my mother in front of Nicholson’s desk; my father leaned against the wall. The desk between my doctor and me gave me an uncomfortable sense of solitude, despite my parents’ presence. I focused on Nicholson’s flattened hair; the image of the villain from the 1930s film serial The Perils of Pauline flashed through my mind.

  Stop it. I was taking out my fears on this man who, despite his disagreeable bearing, wanted to help. I picked at my head. The glue that had been used to attach the EEG electrodes stuck to my scalp like concrete. I felt certain I’d be walking around for days looking as though a drunken barber had taken a hatchet to my hair.

  Nicholson said nothing as he flipped through each sheet of paper, examining all the test results. Then he put the file on his desk and looked at me.

  “You have…”

  A brain tumor.

  “…epilepsy.”

  A wave of relief swept over me. Epilepsy. Not cancer.

  “Could that kill
me?” I asked.

  “No, it can’t.” His response was wrong; epilepsy can be fatal.

  “So what does that mean?”

  “It means you have seizures.”

  How is that an answer? I thought.

  He told me that the staring spells were called petit mal seizures, and the symptoms I described from the night I awoke on the floor were common after a grand mal seizure.* I didn’t know what that meant, and he explained it was the name used for general convulsions, which often strike when people sleep.

  Nicholson turned to my father and began talking. I wanted this neurologist to explain our next steps, what the treatment was, whether the epilepsy might go away. Or would it get worse? Did epilepsy mean my brain needed surgical repair? I thought carefully, trying to arrange the words for my next question in a way that would force him to give more than flip answers.

  Without looking at me, Nicholson told my father, “He’s going to have to go on anticonvulsants.”

  “All right,” my father replied. “Which are you going to prescribe?”

  “I’ve seen success with Tegretol.”

  As their conversation rambled on, I imagined myself jumping on Nicholson’s desk. I’m right here! I could scarcely believe he was ignoring me and that my father was allowing it to happen. When it seemed their conversation would not end soon, I interrupted.

  “What is Tegretol?”

  Nicholson shifted his gaze to me. “It’s a medication that’s been around for about a decade.”

  “Will it stop the seizures?”

  “It should.”

  Don’t yell at him. “I don’t understand what that means. Will it stop the seizures?”

  Nicholson looked annoyed. “Yes, it will stop the seizures.” He hesitated. “Well, let me be specific. You might still have some staring spells until we get the medication adjusted.”

  I was about to ask another question when Nicholson cut me off. “Now, don’t start feeling sorry for yourself,” he said. “There are children dying from cancer, and they’re a lot worse off than you. You’re not going to die from seizures. Those kids could only wish they had epilepsy.”