What? I had been diagnosed for maybe two minutes, I had asked a couple of questions, and now my neurologist was telling me I should feel lucky I didn’t have cancer? Was I not allowed to ask about epilepsy because there were children with fatal diseases? But in my emotional condition, I didn’t lash out at his comment. Instead, believing he was key to stopping the seizures, I accepted his implicit command to stay quiet.
Nicholson resumed speaking to my father. I looked at my mother and could see she was as intimidated as I was. She asked about medication side effects. Nicholson ignored her.
Finally, he turned to me again. “What do you want to do with your life?”
Were we about to start chitchatting? I still knew next to nothing about my diagnosis or treatment, and suddenly we were discussing my future? I had graduated from high school only five months ago.
“What do you mean?” I asked.
“What do you want to do for a living?”
“I don’t know,” I replied, still confused by his questions. “I’ve been thinking I might want to become a lawyer.”
Nicholson eyed me evenly. “No, you can’t do that,” he said. “Seizures can be triggered by stress. You need to choose a career as stress free as possible.”
“But—”
“I also think you need to reconsider attending Swarthmore,” he said.
I had been about to ask, If the medication would control the seizures, why did I need to avoid a job that might trigger seizures?
“Swarthmore is tough,” he continued. “It’s not good for someone with epilepsy. You need to discuss with your parents whether it’s wise to go back. You won’t be able to keep up.”
Each sentence was a kick in the gut. Drop your plans; drop your school; leave your friends; prepare for failure. Oh, and the drugs will stop the seizures. So many questions filled my head that I had no idea which to ask first.
“Also, don’t tell anyone about your diagnosis,” he said. “If people know you have epilepsy, they’ll be afraid. Seizures are frightening. If you tell people, you might lose friends or jobs.”
My chest tightened. “But what if I have a convulsion in front of someone?”
“That’s why you’re on the medicine, to stop that.”
“Okay, but I’ve been having these staring spells forever. My roommates already know about that.”
“Tell them not to tell anyone. And if you ever have to say something about this, call it a seizure disorder. Never say epilepsy. The word scares people. ‘Seizure disorder’ is less frightening.”
I still didn’t understand. If the anticonvulsants would stop the seizures, why were we talking about this? “But the medication—”
“Yes, that’s critical. Never miss your medication.”
“Why? What happens?”
“Just don’t miss it.”
Don’t yell. “I understand I shouldn’t miss it. But what happens if I miss it?”
“Don’t even consider that. Don’t miss it.”
I thought for a second. “Okay, let’s say I’m on an airplane, and it crashes into the ocean. I swim to a desert island. All my medication went down with the plane. What’s going to happen?”
“You’d just have to find a way to get your medication.”
I gave up. This doctor, I decided, took pleasure in confusing me. My father seemed untroubled; I figured he knew the answers to my questions. Maybe he would tell me later.
Nicholson instructed me to never use illegal drugs or over-the-counter medications that might be sedating and to limit myself to one drink of alcohol a day. Then, before I knew it, he ushered my mother and me away. I headed to the elevator baffled. He had failed to explain what caused the seizures, how the medication worked, or what side effects I might experience.
He had, however, convinced me that my life might be ruined by epilepsy. If I didn’t hide, if I didn’t lie, I would be tossed out of college, lose my friends, and spend the rest of my days alone in some low-stress job I hated. His words left me in shock, too emotionally overwhelmed to feel anything.
My mother and I reached the car, and I slid into the passenger seat. She said we needed to take my prescription to the pharmacy. I sat in silence, looking out the side window as trees and stores moved past. I thought I should be crying, but somehow I couldn’t. I believed Nicholson. I believed I now had to live in secrecy and fear.
At home, I swallowed anticonvulsants for the first time, a ritual I would repeat almost every night for the rest of my life. My daily dose of death, I thought. I read the package insert that came with the medication, and the list of side effects sounded like the health nightmares suffered by a hopeless patient on a medical television show. Breathing problems, irregular heartbeat, confusion, life-threatening this, fatal that. The drug could cause serious diseases, particularly involving blood or skin, but I recognized none of the names. I didn’t notice the black box, full-caps instructions at the top of the insert saying that, to ensure I didn’t contract a dangerous condition called aplastic anemia, I needed comprehensive blood tests every week for three months and then monthly for at least two years. Nicholson either didn’t know those instructions or, in the months that followed, ignored them.
My mother drove me to the Dallas Epilepsy Association, and the counselor there put me at ease. He answered my questions until I understood my condition and my medication. He explained that if I missed my Tegretol, I might have a seizure; if I stopped it altogether, I could end up hospitalized or even die. Eventually, I understood that the drug could help or hurt. Taken correctly, it might control seizures. Used irresponsibly, it could cause them. I couldn’t help but wonder: Why didn’t Nicholson just tell me? Why did he play those cruel games?
The counselor mentioned grand mal seizures, and I interrupted him. “I don’t need to worry about those. My neurologist said I won’t have them anymore.”
“That’s good,” he replied, hesitation in his voice. “How did he determine that?”
“Because I’m going on the medication.”
The counselor nodded silently. I wondered why he paused.
“Look at it this way,” he said. “Even someone who’s sure they’ll never drive anywhere but down the block needs to know how to put on a seat belt. So let me talk to you about grand mal seizures, and then I can answer your questions.”
He asked me about the night I woke up on the floor beside my bed, and I confessed that I didn’t understand how Nicholson had concluded this was a grand mal seizure.
“Everything you’re describing is what happens in a postictal state of a grand mal seizure,” the counselor said. “That’s the name for the period of time after a seizure when you can be awake, but the brain still hasn’t recovered.”
During convulsions, neurons—which control all action, thought, senses—fire out of control, he said. The brain protects itself by producing chemicals to inhibit those cells. Metaphorically, the brain was a burning house, and the inhibitors were firefighters spraying water on the flames. But just as a soaking wet house can’t burn again until it dries, someone whose brain is filled with inhibitors won’t feel or act normally until the chemical balance returns.
“And that made my hand hurt?” I asked.
“Not the seizure itself. You probably hit your hand during the seizure, though.”
I still had doubts. “If I had a grand mal seizure, wouldn’t it wake up my roommate?”
“It might. Sometimes grand mal seizures can be accompanied by loud noises. But other times they can be quiet.”
The counselor also dispelled myths about convulsions. Tongue swallowing was an old wives’ tale; if someone was lying faceup after a seizure, the tongue might flop backward, but elevating the head on a pillow or turning it to the side solved that problem. Putting spoons, pencils, or any hard object in the mouth was unnecessary and dangerous. That mistaken remedy for the
tongue-swallowing myth likely resulted from seeing the well-trained place a wallet or soft bite stick between the teeth. People’s jaws often clamp tight during a convulsion, and soft items could protect the tongue, lips, and cheeks from bad bites. If the mouth was already shut, it was too late to stop a bite, and prying open the jaw could fracture a bone. When the untrained used a spoon or another hard object, teeth could break.
Also, the counselor told me, no one should hold down a person experiencing a seizure; that could cause injury or intensify the convulsions. A seizure typically lasted a minute or two. If it continued more than four minutes, someone needed to summon medical help. Otherwise, there was no reason for an ambulance after a seizure; once emergency room doctors learned I had epilepsy, they would leave me to sleep it off and then send me home when I awoke. However, in case I ended up in the hospital, the counselor recommended I wear a medical-alert bracelet or necklace listing my name and diagnosis.
The bottom line, he said, was to tell friends and family to use common sense during a seizure—keep me from hitting solid objects, put something soft under my head to protect it, and let the episode run its course.
The conversation helped, but the meeting could have been more of a turning point had I not once again failed to ask important questions. I’d accepted Nicholson’s depiction of my future and didn’t want to hear the same dreary prognosis from this counselor. I left his office feeling better, but apprehensive about the lost opportunities that lay ahead for me. I tried to shake off the self-pity; after all, as Nicholson had said, children were dying of cancer.
Thanksgiving came and went. Normally I enjoyed the family dinner, but this time I remained lost in thought as I contemplated Nicholson’s pitiless monologue. I couldn’t let him be right. I liked school, enjoyed my friends, loved my life. Maybe if I tried hard, I thought, I could stay at Swarthmore. Maybe, if I stuck it out, I’d be able to handle any job after I graduated. From what Nicholson had said, it would be easy to stumble, to let years slip past as opportunities withered away because of my epilepsy.
While I still didn’t understand the illogic of his statements—the medication would stop the seizures, but revealing the seizures could destroy everything—I set an inflexible goal for myself, one to use as the measure of whether my life was on track: I would graduate with my class. I would not let myself slide into a failure that forced me out of school. If I kept pace with my friends, I could be certain that the sentence Nicholson had handed down was wrong. I had to graduate with my class. This would be my emotional touchstone.
The first step, though, was to make sure no one would learn about my seizures. When I returned to school, I decided, I would sit down with my roommates and explain why they could never tell anyone about episodes they might witness or my diagnosis.
* In 2016, an international epilepsy group reclassified terminology for seizures since names like grand mal and petit mal did not capture all types of episodes. Because the words are relevant to my story, I will use the terms as they existed at the time of these events.
An audio letter from
CARL MOOR, 1986
My college roommate
You were very worried that people wouldn’t hire you, that if people found this out about you that you would never get jobs or would never be treated the same. Wanting to be able to be treated the same was a big deal for you. So we had no trouble in agreeing to give you that secrecy. But that was—in the long run, that was detrimental and something I came to wish that we’d never started on.
CHAPTER FOUR
The sound of dishes smashing against the floor echoed through the Swarthmore dining hall. Shouts of panic, orders barked, thuds from a struggle. I had been eating with friends when the noise erupted from the entryway. Instinctively, I rushed toward the commotion along with others who wanted to find out what was happening.
At the bottom of a staircase lay a mob of students, arms grappling, legs akimbo. The people I recognized were upperclassmen; several played on Swarthmore’s anemic football team. I couldn’t make sense of the chaotic scene, so I asked someone what was going on.
He pointed into the mass of people. “That guy is having a seizure.”
I went silent. Just weeks had passed since my diagnosis, and now, for the first time, I was seeing someone in convulsions. The mountain of students held down a kitchen worker, pinning the man’s arms and legs. No, not a man, a teenager. His face was red, and he struggled to breathe as the weight of the would-be Good Samaritans crushed him against the floor. I panicked—the kid needed space, air. Weeks earlier, I wouldn’t have known the danger he faced. But I’d learned a lot from the Epilepsy Association. These well-intentioned students were probably intensifying the seizure and could break the boy’s bones or squeeze the life out of him.
Tentatively, I stepped toward the heap of bodies and saw a large redheaded man with a bushy mustache clutching the boy’s left arm. “Excuse me,” I said. “You’re doing everything wrong.”
Bushy Mustache ignored me as he shouted an order at another student. I stood silently for a second.
“Get off!” I suddenly shouted. “Let him go! You’re making this worse!”
He whipped his head around, anger in his face. “Look, kid, I’m premed,” he snapped. “What makes you think you know so much?”
I wanted to answer, Because I have epilepsy. But then all of the things Nicholson had warned about could come to pass—losing friends, school, everything. I had a choice: Save a stranger or protect myself. I turned from the hideous scene, walked away, then leaned against the stone wall, unable to shake the rush of guilt I felt. I looked back at the boy’s face, contorted and flushed.
“I’m sorry,” I whispered. “I’m so sorry.”
I couldn’t watch anymore. I headed upstairs toward the building’s main exit, forgetting about the dishes I’d left on the dining table. I grabbed my jacket off a coat rod and pulled it tight around me before stepping outside. The sky was clear in a cold twilight as I trudged back to my dorm.
I thought about Nicholson’s promise: I would never have a grand mal seizure again. He had been wrong. A few nights earlier, I had convulsed, this time in front of my roommates. None of them remembers the specifics of that seizure, but I know it left me devastated. Why would Nicholson have told me the convulsions were over if he wasn’t sure?
Later that evening, Franz mentioned the kitchen worker’s seizure. “It worried me,” he said. “I thought it was you.”
I tried to be casual about the whole thing—yeah, strange someone else at our tiny school had a seizure—but my unspoken thoughts were irrational. In an odd way, I thought the boy under that pile of bodies might have been me. Being forced to choose between two obligations—protecting the kitchen worker or myself—had kindled emotions I couldn’t understand. Mortified by my weakness but too afraid to find out if the boy had survived, I needed to talk to someone. But with my thoughts irrational and my remorse tormenting me, who was there? My roommates had been supportive and sympathetic friends; I wasn’t going to make them my counselors too. The only person who could understand what I needed to say, I realized, was me. I wouldn’t need to confess my shame to others if I came to terms with the emotions on my own. I grabbed a blue spiral notebook and a black pen off my desk, then walked to the next room. I sat on my bed, flipped open the notebook, and wrote. I recounted the event. I wrote about Bushy Mustache.
Look, kid, I’m premed, I scrawled. What makes you think you know so much?
I dug my pen into the paper, gouging a hole as I reread the words.
What makes you think you know so much?
A moment passed. How can I be such a coward? I wrote.
I ended there but returned to my notebook later that evening with a blue pen, this time to scribble two grammatically tortured sentences. I don’t know can handle this, I wrote. It’s not right I lose much if people find out.
/> * * *
—
Christmas vacation arrived, and I flew home to Dallas, eager to see Nicholson again. He was difficult to reach by phone, and even when we spoke, he just assured me I would be fine if I gave the medication more time. A face-to-face, I hoped, would give me the chance to find out why the convulsions hadn’t stopped.
Once again, my mother drove me to his office, and with my father absent, Nicholson spoke only to me. I noticed his rudeness toward my mother; I wondered if women left him feeling threatened or if he was just contemptuous of them.
My appointment accomplished nothing. He performed another neurological exam—“Squeeze my fingers; push my hands”—but brushed aside my concerns. When I asked why the convulsions hadn’t stopped, he questioned whether I had brought them on myself by ignoring the rules: “Are you drinking too much?” “Have you been using drugs?” “Did you miss your medicine? I told you not to miss your medicine.”
I assured him that I had followed his instructions. I felt small, begging for an answer about why my health was not improving. Nicholson asked if I still experienced the petit mal seizures, and I told him yes. There was a lot I didn’t know at the time: For one thing, his petit mal diagnosis was wrong.
Nicholson wondered if my Tegretol dosage needed to be increased and sent me for a blood test to check the amount of the drug circulating in my body. I handed the technician a form with check marks on preprinted entries, sat in a chair, and laid out my arm on a table. I winced, anticipating the sting, before she slid the small, thin needle into my skin. This was the first of hundreds of blood tests over the years; now they are so routine I can’t remember if my fear of the needle was followed by any pain. I headed back to Nicholson, who said he would call me when he received the lab results. My visit ended. I knew nothing more than when I arrived.
A Mind Unraveled Page 4