A Mind Unraveled Page 8
I phoned Craddock, desperate for an explanation. He told me I was describing “atonic seizures.” Innocuous name, ghastly problem. Unlike convulsions, where muscles tighten before the body starts jerking, atonic seizures involve a sudden, complete loss of muscle tone. The episodes ended quickly and never involved loss of consciousness. He could not be certain, he said, but the drop attacks may have started either as a result of my seizures being poorly treated for so long or because I needed more anticonvulsants.
A grand mal seizure, with all of its spasms and clenching, can appear petrifying and almost otherworldly. But for me, crashing to the ground without warning was far worse. Michael did not step in and take over my body as I blacked out; when I dropped, I was awake for the entire event. The experience of a convulsion was akin to waking up after a car accident, nursing wounds from a calamity I didn’t remember. These new seizures were like driving down a busy highway knowing I would lose control of the car—maybe in a few hours, maybe in a few seconds—and then skid helplessly into a tree as metal crunched my body and glass cut my face.
I spent every moment looking around for dangerous objects I might hit in a fall—a rock, a pointed stick, a bench. Even so, I occasionally and foolishly disregarded threats, a carelessness I came to regret. Before the drop attacks started, my roommates—including Dave Robbins, who had taken Pat’s place—had removed a couple of mirrors from the walls, placing them on two trunks to create a reflecting coffee table. Very cool, we thought. Unfortunately, the risk of this funky piece of do-it-yourself furniture escaped me. I recognized the danger only when I crumpled on top of the table, breaking the mirrors.
Craddock urged me to contact him if the seizures worsened, and after every few calls, he upped my anticonvulsant dosage. We fell into a cycle that showed no sign of ending: He increased my medication, more seizures occurred, and he bumped up the prescription again. He ordered the changes without checking my blood to determine the drug levels or possible problems. It never occurred to me that he should have.
When Nicholson diagnosed my epilepsy, he placed me on one Tegretol pill a day, gradually increased that by two more, then added Depakene. By the second semester of my sophomore year, Craddock had boosted my dosage from four to eleven pills a day.
Nausea and dizziness were my frequent companions. Sometimes I lay down on the grass because my head was spinning. My hands trembled. I often gasped, feeling as though I couldn’t get enough air. Bruises that appeared after my seizures remained for a long time. If I rubbed my hands through my hair, a surprising amount came out. I assumed I was just going bald at a young age until I realized a large number of the follicles were falling from the sides and the back, not the typical pattern for male hair loss.
Each time a new symptom surfaced, I phoned Craddock and asked whether the drugs might be the cause. At least half a dozen times, he uttered the same reply: “I’ve never heard of that as a side effect of the medication.”
Although it took years for me to grasp the magnitude of the problem, signs emerged that my memory was flagging. I didn’t remember events that my friends told me I had attended. I struggled with people’s names, even those of longtime friends. Once I looked at one of my roommates attempting without success to summon up the name “Franz.”
Worse, I was increasingly forgetting to take my medication. That had rarely been a problem before, but now some mornings I woke feeling dreadful from having missed at least one of the sets of pills I was supposed to take three times daily. I tried to set up a system to give myself a visual cue that I had swallowed my medicine, but then forgot how the system worked. My roommates became angry at me when I missed my drugs; after all, they dealt with the consequences too. I promised to do better, but then forgot again. I could not understand what was happening.
I wish I could recount more of this terrible time, but with my deteriorating ability to recollect and my attempts to push aside troubling experiences, I made no tapes and turned my written diaries into bare-bones recitations of wounds: “Hurt my right hand, typing is hard.” “Not possible but my forehead looks dented.” “Woke up with mouth bleeding. Don’t think anyone heard.”
As I read these journals now, the most stunning aspect of them is not what I wrote but what I left out. I list my injuries with the matter-of-fact tone of a grocer taking inventory, but I never mention my emotional state or what happened each day. It’s clear I dreaded pain, but otherwise I seem indifferent to my fate.
In fact, the only feelings I relate in these diaries involve concerns for my friends, particularly my roommates, and my guilt for the demands my health imposed on them. “How can you thank people who let you live your life?” I say nothing about fearing death but express concern that a fatal fall would traumatize Carl, Franz, and Dave. At the time, I didn’t know that crashing into something was only one danger and that I could perish from a condition called SUDEP—Sudden Unexpected Death in Epilepsy.
I'd begun to be aware of my emotional shutdown during Christmas break. My father choked on a piece of roast beef at dinner, grabbed his throat, leapt out of his seat, and fell face-first onto the floor. As the rest of my family dashed about in panic, I calmly stepped past him—seeing his face dripping blood from the impact with the ground—and headed to the kitchen telephone. I figured he might be dying. I dialed 911.
“What’s your emergency?”
“Yes,” I said. “My father just choked on some food and is on the floor.”
“Is he breathing?”
“I don’t know,” I replied. I glanced across the room and saw my mother helping him sit up.
“Oh, he’s okay,” I advised. “Never mind.”
I hung up. Suddenly, I could see myself, cold-blooded and composed. Despite my father’s failures, I knew I loved him. I understood my family’s distress. But I felt nothing. Not fear, not love, not hate, not boredom. Nothing.
This probably isn’t good, I thought coolly. I’m broken.
The explanation came to me as I stood by the phone. For so long, I had denied so much, hidden so much, lied so much, and been hurt so much that the person I had been was gone. I was a shell of my true self. Instinctive reactions to threats—fight or flight—remained, but I had subconsciously slammed most emotions, good and bad, into a psychological box. I didn’t want to feel anguish, so I didn’t feel anything. I should speak to someone about this, I thought, maybe a counselor. Then I walked toward my father, who was off the floor. My family headed back to our dinner, and I forgot all about being dead inside.
* * *
—
As the seizures increased in the second semester of my sophomore year, I decided Nicholson had allowed me freedoms that undermined my health. Shortly after my original diagnosis, he had told me I could have one glass of alcohol a day; in my sophomore year, I stopped drinking entirely. I decided to avoid booze after getting together with the woman who would become my new girlfriend, Joelle. The night we met, we shared some cheap whiskey, and later that night I had convulsions that were worse than usual. I didn’t know if the alcohol had caused them, but I realized Nicholson’s rules were irrational. Based on his directives, one beer was no worse than one glass of vodka—the concept made no sense. With Joelle, I attended more parties, and often someone pushed me to drink. Finally, to stop the pestering, I mixed glasses of seltzer and orange juice, leading fellow students to think I was downing screwdrivers.
Cutting out alcohol accomplished nothing. Almost every other day, I either experienced a convulsion or a drop attack or was recovering from one. Carl, Franz, Dave, and Joelle often helped me back to my room after some event. They knew that when I woke from a grand mal seizure, I feared what had happened while I was unconscious, so they patiently listened as I struggled to ask questions. Carl and Dave told frequent, often ribald jokes to make me smile. What they called “The Carl and Dave Show” was deemed a success if the first understandable words I said were “Tha
t’s disgusting.”
Injuries from my seizures made it difficult to walk the campus; I realized that Swarthmore was virtually inaccessible to the disabled, with only a few feeble attempts at aiding them. The campus had just two wheelchair ramps, each leading to staircases. One of the few wheelchair-accessible bathroom stalls could be reached only by passing through a narrow doorway.*
The school’s inattention to accessibility made things hard for me. A year after it had happened, I recalled a difficult experience during this time on a recording. “After two consecutive seizures, I was going around the school, and I was just so torn up,” I said. “I couldn’t walk in certain places. So many of the doors were too heavy for me to open. There were so many stairs I had to climb and go down. I made them most of the time by clinging to the handrail because I was afraid I would fall.”
Though I never learned how, my mother heard about the severe deterioration in my health. For all I know, I told her myself in one of my matter-of-fact, emotionless moments. Again she pleaded with me to come home, and again I refused. It made no sense for me to abandon Craddock; I liked him. I would not go near Nicholson, I said, nor would I allow my father to choose a new doctor. And I would not surrender the commitment to graduate with my class, a goal that grew in importance as my health worsened, since that would prove I had not let my life slip away.
Besides, apart from my seizures, I enjoyed college. I relished the camaraderie and the intellectual challenges. Even in the foggy aftermath of a convulsion, I found classes fascinating. I remember some hours after one episode, I was still recovering while my professor Kenneth Lieberthal led a discussion on Chinese politics. My thinking grew clearer as I focused on the debate. Then an insight struck me—some of Michael’s brilliant analysis, I assumed. I decided to risk stuttering in front of the class, raised my hand, and explained my assessment. Lieberthal pointed at me excitedly and proclaimed, “Now you’re thinking like someone in the Chinese government!” I had to suppress a smile: My brain was most attuned to the thought processes of Chinese politicians after a grand mal seizure?
* * *
—
I again decided to take the risk and auditioned for the new school musical. The danger of an onstage seizure was higher than in my freshman year—they were happening every few days. Carl and Franz, as well as a few other friends, also tried out. All of us were cast, me again as the romantic lead, Carl as the villain, and Franz as a boy who befriended a mute dancer. After the casting choices were posted, I sought out the director to tell him of the risk in selecting me for a lead role. Just like the director from the previous year, he told me he would be my understudy, although I learned years later that he was far more concerned about me—and my ability to perform in the show—than he let on. Some seizures kept me from rehearsals, but I performed all three nights. While onstage, I found that, as a result of my focusing so much on my performance, my usual stress about the possibility of a seizure faded away.
Inspired, I decided to try running the spring musical the next school year and proposed Pippin. I was the only applicant, so the drama board approved my idea.
Despite these small triumphs, my roommates began to discuss among themselves their concerns about my decline, conversations they did not disclose to me for years. They feared my falls. They knew convulsions had occurred in terrible places. One had battered me badly in the middle of a row of immovable metal-and-wood seats during a showing of the French thriller Diva.
Then there was the emergence of psychological issues that they sometimes observed. Despite subconscious efforts to bury my feelings, I experienced occasional severe emotional outbursts. Circumstances may have been the direct cause, but other factors likely played a role: The manufacturers of the drugs I swallowed in huge, unmonitored dosages warned that these mind-altering medications could lead to emotional upset, psychosis, and behavioral deterioration; Craddock never told me. Worse, a typical dose greatly increased the probability of suicidal thoughts; that was revealed in 2008 in an urgent alert from the Food and Drug Administration. Decades before, when I was taking eleven pills a day, no one knew such a side effect was possible.
I experienced one of my worst breakdowns in the second semester of my sophomore year. I was in the room with Dave when my head started swirling with fatalistic, morbid thoughts.
I’m dying. I want to get better. I want to die. I need to leave school. It’s too hard. It’s too hard. I want it to stop. Nicholson. He’ll be right. I’ll leave school. I’ll lose everything. I’ll be nothing. I’ll be nothing. I’ll be alone. No friends, no job. No education. I’ll be alone. I can’t be alone. I can’t keep going. Please let me die.
Suddenly, I sobbed and gasped, near hysterics. Dave asked something, but he couldn’t understand my response. I don’t even know if I spoke words or just blubbered. Carl showed up. The two of them spoke to me, but I have no idea what they said.
Kill me, I thought. I want to die.
I cried uncontrollably for a long time.
Another problem was obvious even from a distance: I was rapidly losing weight. My jeans slipped past my hips, and my shirts became baggy. I needed new clothes and bought some at a secondhand store. I telephoned Craddock to ask if this might be related to the drugs; again he replied, “I’ve never heard of that as a side effect of the medication.” Probably, he said, stress was causing me to drop so many pounds.
Carl and Franz were more concerned. Franz likened me to a skeleton and feared that when I fell, there was no fat to cushion the blow. My bones, he told Carl, would take all of the impact. That couldn’t be safe.
In the final months of my sophomore year, I started planning for the summer. I ruled out Dallas—I wasn’t going to spend another vacation dependent on others to drive me around. I also didn’t want my mother to see how bad the seizures had become. Hearing about them was one thing. Watching them would intensify her effort to keep me home. And I didn’t want to deal with my father’s denial or risk him meddling in my medical care. For all I knew, I might find myself forced back to Nicholson’s office. I needed to find a city with mass transit, good medical care, and a safe place to live.
Carl offered an answer: Go with him to Chicago. His family lived in a brownstone on the city’s posh North Side, plenty of his friends resided nearby, and the “L”—Chicago’s train system—was a short walk away. While he and I would be in the house for much of the summer by ourselves, it seemed perfect. All I needed was a job.
I had plenty of money from my telemarketing days, so I didn’t need a salary, and an internship would build my résumé. Carl and I checked a book in Swarthmore’s library that listed summer jobs for college students. He zeroed in on an entry for a group called the Better Government Association (BGA), which had a reputation in Chicago for teaming up with news reporters to expose government corruption. A few years earlier, the BGA had made a splash through a sting conducted with the Chicago Sun-Times, in which they purchased a run-down bar in the city’s Old Town neighborhood, loaded the walls with hidden cameras, and then reopened as the Mirage Tavern. Months of filming caught a parade of city inspectors and other government employees seeking bribes. The BGA took some foolish risks—the tavern’s matchbooks advertised “Beer, Grog, and Ale” with the first letter of each word highlighted, leaving “BGA” emblazoned on the covers. But no one caught on. After the Sun-Times and the BGA revealed their deception, 60 Minutes broadcast the story and set off a national sensation.
Carl and I were entranced by the idea of working for such a dynamic organization. We landed internships, so we were both destined for Chicago. Neither of us thought my seizures might cause a problem—we had dealt with them for more than a year, and Carl knew what to do. He was just looking forward to introducing me to his high school buddies and having a summer of fun.
Instead, the next few months would be the worst nightmare I could have imagined, one that inflicted traumatic damage on one of m
y best friends.
* Such failures violated Section 504 of the Rehabilitation Act of 1973, but since my time there, Swarthmore has launched a major renovation and is now fully accessible to the disabled.
An audio letter from
CARL MOOR, 1986
Sophomore year was the first year you started, outwardly for us, showing signs of great emotional strain. You always seemed very much together in the first year, but in the second semester of sophomore year, emotionally, you started falling apart sometimes. I remember once I was next door, and Dave Robbins knocked on the door and said, “Carl, you better come back to our room.” I figured you would be having a seizure. But I came in, and you weren’t having a seizure but were sobbing so hard that we couldn’t get through to you. It just freaked us out. You were completely incoherent and impossible to talk to. I thought, This must be what a nervous breakdown is.
CHAPTER EIGHT
Over the two years we roomed together at Swarthmore, Carl never told his parents about my epilepsy. They knew nothing of the times he helped me back to our dorm after a seizure, of the nights he waited for me to awaken from a convulsion, of his support during my breakdowns. Since the Moors traveled to the school occasionally, he had concluded that his promise to keep my condition secret required him to leave them unaware.
That changed with my stay in their home over the summer after sophomore year. Shortly before my arrival at their three-story brownstone, Carl told his parents about my seizures. He was casual in the conversation and vague on details; he said I had epilepsy, that I took medication, that I sometimes experienced seizures. His nonchalance reflected his attitude that it was no big deal, but it left his parents unprepared for the spectacle they would witness in their soon-to-be houseguest.