As usual, Nicholson’s assistant answered, and I explained that the convulsions were becoming worse. She put me on hold, and to my astonishment, Nicholson picked up.
“Hi, Kurt. What’s happening?”
“I’ve been having more grand mal seizures. I had another one last night, and I’m feeling awful today.”
“Okay, so what happened during that seizure?”
I wasn’t sure how he expected me to answer that question.
“I don’t know,” I replied. “I wasn’t there.”
“Oh, don’t be ridiculous! Of course you were there.”
“That’s not what I meant. I was unconscious. I don’t know what happened.”
“Yes, but that’s not what you said. You said you weren’t there. Why didn’t you just say you were unconscious?”
What the fuck does this guy want from me? “I’m sorry,” I replied, frightened he would hang up. “I said it the wrong way. I was there. I just don’t know what happened.”
“Did anyone witness it?”
“Yes, my roommates.”
“Did you ask them to describe everything that happened?”
“No.”
“How are you going to tell me what happened if you don’t find out?”
I held back tears. Why was he always so abusive?
“I don’t know,” I sputtered. “I don’t know what I’m supposed to ask. Isn’t it enough just to tell you I had a grand mal seizure?”
“No, I need to know everything. What was the aura* like?”
“I don’t remember. I know I’ve seen lights before, and my roommates say they can tell when a seizure is coming. But I usually don’t remember what happened beforehand.”
“You need to start asking.”
“Asking what my aura was like?”
“Don’t be ridiculous. Asking what happens during the seizure. I need to know specifics.”
“All right,” I promised. But we had been working together for months. Why, I wondered, had he never told me this before?
“Well, it sounds like the medication isn’t working.”
For the first time, I wanted to laugh. No kidding.
“I’m going to give you a prescription for Depakene and add it to your Tegretol.”
Relief washed over me. Finally, he was doing something.
“What is it?” I asked.
“Another anticonvulsant. It was approved for epilepsy by the FDA a few years ago.”
I wasn’t sure how to feel about that. Wouldn’t it be better to use a drug that had been shown to work for decades rather than a new one? No matter. I trusted Nicholson. I had no choice. There was no one else who might end my terror of losing control.
* * *
—
I never read the package insert for Depakene, and Nicholson explained nothing; I simply picked up the medicine at the drugstore and started swallowing the gelatinous orange capsules. My neurologist had told me to take the drug, I was desperate, so I followed his instructions. However, the 1980 edition of Physicians’ Desk Reference—the book that every competent doctor keeps nearby to research any medication before prescribing it—shows that Nicholson had not made a good selection, at least based on the science known at the time. The primary use for Depakene listed in that year’s PDR was to treat petit mal seizures, which Nicholson had incorrectly declared to be the cause of my staring spells. When used in conjunction with another drug, it could impede seizures localized on one side of the brain. But grand mal seizures involve both sides, and those were the episodes damaging my life.
Depakene carried warnings similar to the ones for Tegretol about possible impairment of blood cells. The manufacturer cautioned that it could trigger a dangerous dysfunction in platelets, the component that stops bleeding. Doctors needed to check a patient’s platelet count and the length of time it took for bleeding to stop before prescribing the medication, the company specified; that way, changes would be evident in future tests. Nicholson followed none of the standard procedures.
If blood problems—apparent or suspected—emerged, the company directed doctors to stop use of the drug immediately. No one told me.
* * *
—
Despite the seizures, I tried—without complete success—never to miss class. But once on Depakene, at least for a while, I had no choice but to stay in my room. Moving made me sick. I spent hours lying on the wine-colored faux-leather couch in our living area. As long as I remained motionless, I felt fine. But if I shifted position, nausea overwhelmed me.
Yet even in this dreadful state where I could either stay still or feel the need to vomit, my spirits rose. By adding Depakene, Nicholson had finally acknowledged what I had known for so long: The minimum therapeutic dose of Tegretol hadn’t worked.
I have no idea how long I lay on that sagging couch in total stillness. But I knew these side effects would pass. I just had to stick this out as the price for getting better.
* * *
—
After a few weeks, I suspected Nicholson’s treatment decision had flopped again. The convulsions didn’t decrease in number. My faith that he would ultimately find a way to stop them remained unshaken; still, I started wondering, given his failures so far, if maybe he had been wrong about my needing to hide my condition, to never utter the word “epilepsy.” I had three caring confidants—my roommates—but I also had other kind friends. Maybe it was time to be more honest with them.
Then came a day I was walking through Parrish Hall. Between classes, there was always an urgent, ordered frenzy about the place. Amid the crowd, I saw a classmate headed toward me. She shared a freshman suite in our dorm, and we had become friends. I had developed a small crush on her but hadn’t seen her in a while, so I was glad to have a chance to catch up.
“Hi!” I said.
She averted her eyes, maintaining an icy silence as she walked past. I was bewildered. Had I done something to offend her? I tried to recall the last time we had spoken. Nothing. I hadn’t told anyone about my crush, hadn’t acted on it, so that couldn’t have been the reason.
Later, I found out she had learned about my convulsions and may have witnessed one; there had been no argument, nothing that might have ended our friendship. But she never spoke to me again. Nicholson, I decided, was right. I stopped questioning his insistence that I needed to keep my epilepsy secret.
In the spring, I ended my “late-night-gab-and-cram” sessions. I knew that lack of sleep triggered seizures. Procrastinating instead of studying for an exam or writing an essay was risky—what if a seizure struck the night before my work was due? At best, after hours of recovery, I’d arrive to class late, bedraggled, and unprepared. So I handled my homework in an un-college way: I did a little bit every day.
Despite my best intentions, sometimes circumstances required me to write a paper in the twenty-four hours after a seizure, and I soon noticed something odd.
My first college English paper, submitted before my diagnosis, had come back with so many red marks it appeared as if the professor had cleaned a slaughterhouse with it. Your writing is grotesque, he scrawled across the top. When I reread my work, I couldn’t disagree.
I was terrified the first time I typed a paper at the computer lab shortly after a seizure. If my writing was atrocious when I was at my best, then this assignment was sure to be a disaster. I was exhausted, my brain swimming. My speech slurred, and I struggled with names. People stared at me as I pecked at a keyboard, looking so haggard that a few asked if I was all right. I nodded, hoping they would think I was nursing a hangover. I finished my essay on time and was delighted when it came back with an A, loaded with kudos about its insight. (Even though I was no longer paying attention to my semester grades, I couldn’t avoid noticing the marks at the tops of my papers.) Then another paper was written soon after a seizure. Again, an A wit
h effusive comments.
Eventually, I noticed a trend: Whenever I wrote within a day after a seizure, my work wowed my professors. If I typed papers while well and alert, my performance was nothing special. One day, I grew curious and reread one of my post-seizure essays that a professor had praised enthusiastically.
The paper left me speechless. I wrote this? It was…amazing. My sentence structure was perfect, my vocabulary top-notch. I had composed sentences I couldn’t have spoken at the time. And my argument—where had those thoughts originated? As I read, I learned more about the subject than I thought I knew—from myself.
Michael is a genius! Could it be, I wondered, that convulsions triggered a creative part of my brain, temporarily allowing a smarter part of me to take control or simply making my thoughts clearer? Although I never found medical research about such changes, I did come across others with similar experiences—but more important, I saw the results in black and white. This was the first of many times I would marvel at the brain’s power, elasticity, and secrets. I found it fascinating to read someone else’s paper, written by me.
* * *
—
As the end of freshman year approached, I was proud that I had kept my months-old promises to the Blooms. My GPA was unknown to me. I had auditioned for the spring musical and was selected for the role of the romantic lead. Carl had also landed a part in the show, which delighted me; not only did I have a good friend to join in the fun, but if I had a seizure, at least someone there would know what to do.
After I was cast, I decided to tell the director about my seizures. After all, he had unknowingly assumed the risk of choosing a lead who might not be available on show night. He took my confession in stride and told me not to worry—he would be my understudy. I missed some rehearsals, but to my relief, I made it through every performance.
Because of my willingness to take a risk by appearing in the musical, I met Julia—a junior who appeared in the chorus—and soon faced a new problem: how to explain my condition to a girlfriend. Days passed as I worked to overcome my fear of rejection, until I finally admitted to myself that if I didn’t tell her, a convulsion would.
One night, sitting on a curb and staring at my knees as I spoke, I rambled through an explanation of my epilepsy. She was supportive and asked only what she needed to do during a seizure. I explained the details—don’t worry about tongue swallowing; no need for an ambulance unless the convulsions don’t stop; don’t hold me down; put something soft under my head and in my mouth if my jaw hasn’t already clamped shut. Later, she spoke with Carl and Franz, who gave her more instructions based on their experiences. Nothing changed in our relationship; once Julia understood epilepsy, she treated it as an occasional nuisance, exactly as my roommates did.
I hadn’t given much thought to my summer until weeks before the second semester ended. For years, I had worked at a day camp, but I suddenly realized my uncontrolled epilepsy changed everything. I couldn’t care for other people’s children; they would be in the pool, on stairs, standing waist-high beside me. If I lost consciousness at a bad moment, I could hurt one of them. It didn’t matter that my seizures mostly occurred at night. I wasn’t going to take that risk.
Then reality struck. I couldn’t drive. That hadn’t posed a problem before. I had spent spring break with Franz at his home in Toronto, a city with public transportation. During Christmas, I had let friends cart me around Dallas. But summer? Three months without driving in a city where mass transit was a joke. Whatever job I got, I would need to commute every day. Unless someone drove me, my work would be dictated by the city’s lousy bus routes.
My mother saved my summer and my morale by agreeing to serve as my chauffeur. I found a job as a “premium specialty ad sales representative,” a hilarious name for telemarketers who sell pens, key chains, and Frisbees to companies that want their names and phone numbers on customer giveaways.
During training, I was told to ditch my real name on sales calls—too many syllables. If I announced myself as “Kurt Eichenwald,” my spiel would be interrupted by the question “Who?” Instead, the boss told me to adopt an alias, one with first and last names of one syllable each. I thought for a minute, then made a choice I knew I wouldn’t forget: Carl Moor. I took a desk, grabbed some phone books, and started cold-calling. After a few weeks, I decided to have some fun and pitch the Minnesota camp where Carl was working.
“What a coincidence!” the woman on the line bubbled after hearing my pseudonym. “We have a Carl Moor who works here.”
“Well, he probably doesn’t spell it the way I do. My first name starts with a C, and I don’t have an e at the end of Moor.”
“That is how he spells his name!”
“Huh,” I replied trying to sound surprised. “Maybe we’re related.”
I told her what I supposedly looked like, delivering a dead-on description of Carl. She marveled; I sounded like Carl’s twin! We agreed there was a chance this counselor of hers and I were distant relatives. We launched into a friendly “what a small world” conversation.
I sold her some Frisbees.
I was supposed to stick to a script but decided to treat potential customers like real human beings and engage them in conversation. This angered the supervisor, but there was not a lot he could say about it—although I worked part-time, I soon racked up the second-highest sales and the lowest number of packages rejected at time of delivery. My bosses surreptitiously recorded my calls, trying to learn my secret. Eventually, they gave up, unable to decipher the mystery behind my performance. The company president called me to his office to tell me of their eavesdropping and how they couldn’t figure out why my sales were so strong. He asked me if I could think of an explanation.
“Yeah,” I replied. “I don’t lie.”
And I tossed away the script, I explained. Listened to people, heard who they were and what they needed, spent time to earn their trust, and never ended the call so long as a prospect kept asking questions. The boss frowned; I don’t know what he expected, but clearly he hoped I had divined some special trick that lured people into purchasing junk they didn’t want. For decades afterward, I have told young reporters of my telemarketing days, explaining the lessons I learned about how to speak with people, a knack that paid dividends throughout my career.
Despite success at work, my summer was rough. I could no longer hide the severity of the convulsions from my parents. Once I woke in a hallway in our house, my mother kneeling beside me, stroking my cheek and assuring me I was all right. I tasted blood and, as always, reached to my head to check for an injury. A sticky ooze soaked the side of my face; I touched the back of my head and found it drenched. I panicked, struggling without success to scream for my mother to stop the gushing blood, not comprehending that she would have noticed a gaping wound. She had never seen me so distressed and struggled to understand me as I rubbed my head and the floor. I wiped my dripping hand across her face so she could finally see the blood. Then she understood.
“Your head isn’t bleeding,” she told me rapidly. “Listen to me. It’s not bleeding. It isn’t blood.”
She explained repeatedly that the sticky liquid I felt was saliva. During the seizure, a froth had flowed from my mouth down the side of my face, forming a pool on the floor. Eventually, her explanation overcame my panic, and I calmed down.
That day, my mother confronted my father. The seizure she witnessed had been awful, she told him. Watching my body contort, listening as my teeth crunched, seeing blood in my mouth as I bit into my lip—and then afterward, my confusion and terror. I had been in a deep sleep for hours since then. This was far more serious than I had let on, she told him. She begged him to intervene with Nicholson or to find another doctor. He listened stone-faced. Throughout their marriage, my father demanded the last word on important decisions, dictated most parts of my mother’s life, and often treated her like a fool. This was
no different. He would not be doing anything, he told her. Nicholson was my doctor, and he was the best. And, he fumed, she needed to control herself.
“If you don’t stop,” he barked at her, “you’re going to make Kurt think he’s seriously ill!”
My father downplayed the seizures even when he witnessed them himself. While I’m not sure when it occurred, I know one time I fell into a grand mal seizure in front of my family, striking the playroom floor. My mother and my brother rushed to help me. My mother glanced up from me to my father, who sat near the ugly scene eating some watermelon.
“Look at this!” she shouted. “Look what’s going on here!”
My father stayed silent and just kept munching.
That summer, I had one appointment with Nicholson but felt so concerned that he would abandon me if I angered him that I asked few questions. During the consultation, he told me that blood tests from earlier that week showed my Depakene levels were too low, so he increased my dosage. By that time, I had begun to take tentative steps toward admitting the truth: Nicholson had no idea what he was doing. He was a researcher, not someone who treated patients. He was so difficult with me, I thought, because I was interrupting his real job. When I called, I was delivering a new proclamation that he had failed. Was it that simple? I wondered. Were my seizures still uncontrolled because my neurologist’s ego couldn’t handle hearing that his treatment hadn’t worked?
After a week of wrestling with these thoughts, I approached my father. I had been convinced that capable physicians worked only at medical schools and believed no other academic neurologist in Dallas would treat me without his approval. I found him in our bookcase-lined living room, sitting in his favorite chair, face pointed toward the ceiling as classical music swelled around the room. I parked myself on a couch beside him and began to discuss my concerns. I mentioned my epilepsy.
A Mind Unraveled Page 6