A Mind Unraveled Read online

  Days later, my father returned from work with news that Nicholson had told him my drug levels were fine. I was stunned—why was my doctor talking to my father instead of to me?

  I asked questions about the results. My father didn’t know the answers, so I telephoned Nicholson; his secretary took a message, and he never called back. I urged my father to speak to Nicholson at work and tell him we needed to talk. After that prodding, my doctor finally contacted me. He assured me there were no problems; the lab tests showed the Tegretol had reached the minimum therapeutic level of five milligrams per liter. This made no sense to me. I still had seizures. Who cared what the blood levels showed if the problem hadn’t stopped?

  I asked if I might need more than the minimum level, but he insisted it was best to use as little as possible to avoid side effects. Over time, he promised, the seizures would be controlled. I could tell he was eager to end the conversation. The call lasted no more than a minute.

  Looking back, I know I should have fired Nicholson, but at that point, I never considered switching doctors. The relationship between people with epilepsy and their neurologists is complex and, with the wrong doctor, can lend itself to abuse. The terrifying loss of control that accompanies convulsions leads to a sense of powerlessness, with the neurologist taking the role of the only possible savior. Other epilepsy patients I’ve spoken with experienced this same paralyzing, desperate dependence on their neurologists, a feeling that can override common sense or the courage to question decisions. Without that doctor, control can never be achieved, helplessness never defeated, life never stabilized.

  So despite Nicholson’s abrasiveness, I kept him as my doctor. Christmas vacation ended, and I returned to Swarthmore, as confused and frightened as ever.

  * * *

  —

  The first thing I realized was that my left thigh ached. Then my groin and my lower back. The room light caused my head to feel as if an ice pick had plunged into my skull. The inside of my bottom lip throbbed with pain; I tongued it for the taste of blood. None, but I could tell I had bitten the meaty flesh.

  I was waking from another convulsion, feeling as though I had just played ten consecutive games of basketball. While my memory of events before a seizure was always sketchy, sometimes I recalled seeing lights flash in the left side of my visual field. There were also instances when the world became amazingly vibrant. Whatever else happened before I lost consciousness was lost to the amnesia surrounding a convulsion. As a seizure began, my neurons fired in uncontrolled electrical bursts that swept across my brain. My muscles pulled tight as I fell to the floor in what is known as the tonic phase. My jaw closed so strongly that people could hear my teeth crunching even from the next room. A guttural noise from my throat made it sound as if my airway was obstructed; sometimes, I stopped breathing altogether. Then the clonic phase started, as the frenzied electrical impulses commanded my body to jerk. I assumed the pattern rarely changed, since afterward the same muscles always ached.

  As I came to recognize I was awakening from a grand mal seizure, panic set in. I didn’t know where I was, and I couldn’t open my eyes without intensifying the headache. This pain, this fear, these seizures, had become part of my life every few weeks in the second semester of my freshman year. I knew I could be anywhere and often imagined the worst—on a street, a staircase, near a flame.

  Then I heard a familiar voice.

  “Remember me? Your old pal Hunk?”

  Franz. Whenever I roused from a seizure, he and Carl had taken to reciting the scene from The Wizard of Oz where Dorothy’s friends reintroduce themselves as she awakes in Kansas. It was goofy but incredibly important to me. This was their signal that I was safe or at least that I was around people who knew how to handle the situation.

  Carl told me I was in our dorm room and recounted what he knew about everything I had done before the seizure began. My hand reached for my head; for reasons I never understood, I often feared it was bleeding. I struggled to speak without a stutter. Muscles in my throat also pulled tight, so my speech was unusually soft, with lots of delays. Still, when I finally could, I joked with them as I lay on the floor. It seemed humor was always the best way to communicate that I was all right.

  The seizures mostly occurred after 9:00 P.M., so I rarely left our room that late unless accompanied by Carl, Franz, or Pat, becoming dependent on them in ways I now know were unfair. A few teenagers were dealing with a problem none of us should have faced alone. Still, they have assured me for decades that, at least during the first year and a half, the experience was not hard on them. Carl joked that the seizures gave him exercise, since he sometimes had to help me back to the room. But the three of them always communicated that they just considered me a friend who needed help sometimes. “It was tremendously important for you,” Franz recalled later, “to see that those of us who knew still loved you and that you weren’t going to become a pariah.”

  In adhering to Nicholson’s warnings, I left school administrators, the health center, and my professors in the dark. I told no friends about my epilepsy other than my roommates, and they honored my request that we keep it secret.

  My father never wanted to discuss my health, and whenever I told my mother about another seizure, I heard her anguish as she tried to comfort me. She often suggested I come home until my health improved, but my goal of graduating with my class remained my benchmark, the proof that I could lead a full life. I feared that if I failed to reach this objective, I would become what Nicholson predicted—an epileptic, defined by my condition, rather than someone with broad interests and successes who happened to have seizures.

  As a result, I made a foolish decision, one that I now attribute to being a young person overwhelmed by circumstance. While I could do little to control my health, I could take charge of my mother’s pain—I stopped telling her the truth. In our conversations, I glossed over how bad the seizures were becoming, assuring her that, while I was still experiencing convulsions, I was fine. My brother, Eric, was in his senior year at Swarthmore; I hid my seizure frequency from him as well, knowing that whatever he knew would get back to my parents and set off an argument about my leaving school.

  My roommates became expert in understanding my convulsions and could tell when one was approaching. I grew pasty-faced, a sheen of sweat beading on my skin as my lips dried. My facial muscles slackened; my speech slurred; sometimes, one of them told me, my eyes dilated. While I don’t remember who came up with the idea, we began to refer to my seizures in the third person, naming them Michael. That allowed us to discuss seizures publicly without tipping anyone off. When Carl, Franz, or Pat saw signs of a problem emerging, they would tell me, “Michael is coming.”

  Creating Michael also brought me a strange sense of comfort. I knew he was not real, but still I found it consoling to think that the chaos during my seizures had nothing to do with me. When I awakened injured, I had no recollection of what had happened. Truthfully, since I was unconscious, I wasn’t there. Michael was. Michael did it. I despised him for it.

  Sometimes I wondered if creating a fictional person was a sign I was cracking up. But according to psychologists I’ve consulted in the decades since, nonexistent Michael was a powerful technique for dealing with trauma. So long as I knew Michael was imaginary, they said, I had created a self-protective device—a person I could hate for what was happening without directing animosity toward myself or my life.

  Even so, after I regained consciousness, I always had to deal with whatever Michael had done. Once I awakened from what would prove to be a life-changing seizure, feeling cold on my back and hearing a man’s voice. No one recited The Wizard of Oz; my roommates weren’t there. Few things scared me more than being at the mercy of a stranger post-seizure. It might be anyone. Criminals or lunatics could have power over me.

  This man sounded kind. I listened to him with my eyes closed, trying to avoid the light. Soo
n I figured out he was Allen Schneider, my professor from Introductory Psychology. That terrified me for a moment, because I thought I must have gone into convulsions in front of the class; Schneider was a beloved professor, and he taught in a lecture hall packed with students. But I heard no crowds, no panic. I was on a cold hallway floor. Schneider stayed with me as I recovered. Either someone called Carl, or he happened upon the scene, then took over. A day or so later, Schneider asked me to drop by his office.

  “Are you all right?” he asked.

  “Yeah. These happen sometimes.”

  “Do you have epilepsy?”

  Don’t use the word. Nicholson warned never to use the word.

  “I have a seizure disorder,” I replied.

  We spoke for a few minutes as Schneider tried to assure himself I was receiving appropriate care. I asked him not to tell other professors or administrators what he had seen. He promised to respect my privacy.

  “Do you know Al Bloom?” he asked.

  I did. Bloom was a linguistics professor, and his class was tied with Schneider’s as a freshman favorite. He had a family member with epilepsy, Schneider said, and it might be good for me to speak with him.

  I never mentioned epilepsy. I said “seizure disorder.”

  I couldn’t help feeling this was spiraling out of control. First Schneider, now Bloom? And Schneider said “epilepsy.” I felt trapped; I appreciated his kindness, but I was balancing his advice against my neurologist’s warnings to keep quiet.

  “Would you like to meet Al?” Schneider asked.

  No, I thought.

  “Yes,” I lied.

  * * *

  —

  Days later, I walked across the campus, passing the library and arboretum before heading to the aptly named College Avenue. I had already spoken with Bloom, and he had invited me to his home for a chat with him and his wife, Peggi, the family member with epilepsy. I accepted despite my misgivings about ignoring Nicholson’s instructions.

  I strolled along a beautiful, treelined street before reaching the Blooms’ house at the corner of Woodbrook Lane. Sunshine bathed the neighborhood in a cozy tranquility. I hesitated. Once we spoke, I wouldn’t be able to stop the Blooms from telling others about me. For about the tenth time, I considered canceling our meeting.

  Enough. I walked to the front door and knocked.

  Al Bloom answered. A short man with glasses and a permanent smile, he gave me either a hug or a squeeze of the shoulder—I can’t remember which, but I do recall the physical contact knocked down my defenses. He escorted me inside and introduced me to Peggi.

  We sat in a living area, and Peggi asked about my health. I said that my convulsions were poorly controlled, but I was handling the problem and the psychological pressure well. I believed I was telling the truth; by that point, I was in denial about the impact of the seizures on my emotional well-being. I spent time laughing with friends, going to class, doing homework. Except for occasional convulsions, I was like everyone else, so I figured I must be fine.

  Peggi told me about her epilepsy and her neurologist. Hearing from someone with the same condition, using words I had grown to know well, convinced me to let down my guard even more.

  I mentioned my fears of telling the truth, of losing control of my life, of being abandoned by friends, the school, and future employers. Al Bloom took advantage of the opening, saying I had to deal with my health problem honestly. Wasting time wishing it away would delay my learning how to compensate. He explained that he had been diagnosed with hypoglycemia, meaning his blood sugar could crash to severely low levels after eating. So he ate hamburgers for breakfast, he told me, a high-protein meal that helped him avoid glucose problems.

  Peggi spoke. “Are there things you’re not letting yourself do?”

  I could have listed so much—walking campus alone at night, using the health center, talking to my parents about how bad things were—but it didn’t cross my mind to mention them.

  “Well, I kind of wanted to try out for the spring musical,” I said.

  “Why don’t you?”

  The question shocked me. “What if I have a seizure onstage?”

  “Then you do. But don’t give up on something because you’re afraid of someone seeing a seizure.”

  The words could have been the most important I had heard since my diagnosis, since they contradicted Nicholson’s instructions to hide. But I had become too indoctrinated by his directives to understand the full import of Peggi’s statement. I thought she was just telling me to audition for the show.

  The conversation turned to grades. A seizure occasionally forced me to miss class, I explained. Even when things were fine, sometimes fear that I might be on the verge of a seizure interfered with my studies. My grades were good, but I worried epilepsy might prevent me from keeping up. Nicholson had warned me not to get stressed, because that could trigger a seizure. So when grade anxiety emerged, I became stressed about being stressed. It was a cycle I couldn’t stop.

  “Let me ask,” Al said. “Are you planning to go to graduate school?”

  Well, Nicholson told me law school is out, so…

  “No,” I replied.

  “Then stop worrying about grades. I promise, after you graduate, no employer will ever ask what your grades were.”

  I was dumbstruck. Since high school, I’d believed grades dictated my future. Now this professor was saying I should ignore them?

  “I can’t just fail my courses,” I said.

  “I didn’t tell you to fail,” he said, speaking with renewed authority. “Just stop worrying about grades. Pay attention to what you’re being taught. If you understand the material, then you’re getting an education. You’re learning how to think. That’s why you’re at Swarthmore.”

  Ignore my grades.

  “So when my semester grades come out…?”

  “Don’t check them.”

  “I won’t know my GPA.”

  “So what?” He spoke in a caring tone. “If you understand the material, you won’t fail. Beyond that, your grades don’t matter.”

  We talked until I ran out of things I was willing to say. I headed out feeling stronger than I had in months. I was leaning toward auditioning for the musical. And I decided on my walk back to the dorm that I would never look at my grades again until the day I graduated.

  An audio letter from

  FRANZ PAASCHE, 1986

  My college roommate

  Humor was key. Absolutely key. I think you’ve been very lucky that you have such a good sense of humor, because I think that it’s the one element that’s made everybody be able to deal with this in some way or another. Without your sense of humor, I think the people around you would have had a tremendously difficult time dealing with this. It just breaks the tension.

  It was also great to know that one can be a little bit irreverent about these kinds of things. You have to be irreverent, just in the way that anyone is irreverent, but we never took it too far. We never took it to the point of ridicule or belittling the condition. The humor was a part of it. It was a part of the bond that all of us had. Because we could be funny about it, we conquered it in a certain way.

  CHAPTER FIVE

  A rusty bridge on campus crossed high above a track for the commuter train that delivered passengers to and from Philadelphia. Swarthmore boasted a cabaret of hollies, magnolias, and hundreds of other botanical delights, so this homely spot on Fieldhouse Lane ranked as one of few locations that tour guides for prospective students made sure to avoid.

  Every month or so, I trudged across the bridge toward the field house—a hefty detour, but the only place I felt comfortable calling Nicholson. The school prohibited telephones in dorm rooms, claiming that to do otherwise would violate the Quaker tradition of equality, since not everyone could afford the cost. So, whenever I needed to sp
eak with my doctor, I could either use a public phone in a well-traveled spot like my dorm or find a place on campus that offered privacy.

  In the first months after my diagnosis, I called from Parrish Hall, which housed some phone booths; I gave that up after another student stood outside the door, hearing my every word as she impatiently waited for me to hang up. I searched the school until I found the pay phone in the field house, outside a basketball court. Before sports practices, the building was mostly empty, and I could speak to Nicholson without fear of accidentally disclosing the seizures to someone passing by.

  As I headed toward the gym on this day, I felt exhausted and battered. A particularly violent convulsion had struck the night before; it took longer than usual to recover from my confusion and grogginess, and I badly hurt my left arm.

  I knew I had no choice but to notify Nicholson, a prospect I hated. His condescension and refusal to answer even basic questions always left me frustrated and miserable. As I trekked to the gym, I tried to steel myself in hopes of being able to walk away from the call without feeling devastated by what might be another pointless conversation.

  Whenever we spoke, Nicholson delivered the same refrain: The Tegretol had reached the minimum therapeutic level, that was the best amount to avoid side effects, and eventually I would respond to the treatment. He had repeated this for about four months, with a growing tone of exasperation that I hadn’t just accepted his assurances rather than phoning again. I once asked about the severity of the side effects that could come from increasing the Tegretol, suggesting I might prefer those to the seizures. He ignored me; I sensed he thought I was joking.

  I opened the glass door of the field house and walked inside. After checking to make sure I was alone, I headed to the phone, then fumbled with the AT&T card my parents had given me for long-distance calls. I pushed what seemed to be dozens of numbers only to hear a woman’s robotic voice tell me I had entered the wrong ones. Frustrated, I dialed again. This time the call went through.