I could scarcely believe it. Naarden wasn’t just telling me what he was going to do now. He was laying out a plan of action in case his original treatment didn’t work. He was empowering me, as the patient, to take control of the decisions. I would not have to fight to convince him to do something if the seizures continued. He wouldn’t ignore me, as Nicholson had. And if I wanted to stop changing drugs, Naarden would listen.
“But ‘everything in moderation’ is not just about medication,’’ Naarden continued. “It’s about how you live. You need adequate sleep; you need to eat well. Don’t drink alcohol; don’t take other drugs. And decrease stress. Stress can trigger seizures.”
I braced myself. I was about to hear the avoid these kinds of jobs; shelve the plans for your life speech.
“Now, your mother told me a lot about the things you’ve heard from doctors in the past. And I want to talk about that. Tell me: Do you have any plans for your future?”
I nodded apprehensively. “Yes,” I replied softly. “I want to be a newspaper reporter.”
“That’s great. Now—”
“Wait a minute,” I interrupted. “Can I be a newspaper reporter?”
“Of course!” Naarden beamed. “You can be pretty much anything you want to be. Not a school-bus driver or a boat captain if you’re having seizures, but epilepsy doesn’t decide your life.”
I blinked. “Nicholson told me I couldn’t take any job that had stress,” I said.
“Well, he’s wrong. You can be a newspaper reporter—”
“Could I be a lawyer?”
“Of course. Do you want to be a lawyer?”
“No,” I replied.
Naarden shot me a puzzled look, apparently wondering why I would ask about a career that held no interest for me. I just wanted to hear his response to the example Nicholson had ruled out.
“Again, you can do almost anything. But everything in moderation. Learning to handle stress is an important part of that.”
“Okay.”
Silence.
“There is something else we have to talk about,” he said. “Your mother told me what’s been going on at school, how you’ve been hiding in your room, keeping secrets, letting your roommates handle this. That has to stop.”
He waited to see my reaction. I didn’t know what to say.
“Kurt, you have no reason to hide. Epilepsy is a medical condition. That’s all. I know there are people who might react badly if they see a seizure, but ignore them. By hiding, you’re letting epilepsy control you. It’s not who you are.”
He let that sink in. I thought about his words, then changed them into my own slogan. Epilepsy is like brown hair. Some people have it.
“You have to stop depending on your roommates. I want you to speak to the Swarthmore administration, the health center, and school security. If they know what’s going on and how to deal with it, you can go anywhere by yourself. So promise me you’ll speak to those people.”
The thought terrified me, but I agreed.
“You also need a doctor at the health center, and I want you to see a school psychologist, to help you handle the emotional challenges that come along with epilepsy.”
Naarden saved me. How could I refuse?
We weren’t done. “Now, the medication transition might be difficult, and I want you to have the least amount of stress possible. What is your normal course load?”
“Four classes.”
“I think you should cut it to three while we work on medication levels.”
Wait—I need to graduate with my class. I started to speak, then stopped. I remembered that I had taken two Advanced Placement tests in high school and scored fives on both. Swarthmore gave me two college credits for those. If I cut my first semester course load to three classes, I wouldn’t fall behind my peers—the AP tests would make up the difference, with one credit to spare. I could do as Naarden asked and still graduate with my class. Okay, I told him—three classes.
We then discussed a recommendation my mother received from the Epilepsy Association. They advised that, while I was in Dallas, I see a rehabilitative psychologist who focused his practice on people with chronic medical conditions. Naarden thought it an excellent idea; I had been through a lot, he said, and the psychologist could help me adjust.
At this point, I would do anything Naarden told me.
* * *
—
My mother dropped me off at the medical building where I was scheduled to see the rehabilitative psychologist. She didn’t want to leave me alone for fear I’d have a seizure, but we agreed that for me to have a normal life, I would have to take risks. I rode an elevator upstairs, found the office, and walked into an empty waiting room. There was another door opposite the entryway, but I took a seat rather than knocking.
Minutes passed. Then a man opened the door and introduced himself as Dr. David Talbot. At first, I had trouble taking him seriously. His voice was nasal, and he had wild, dark hair that made him resemble Gallagher, the comedian best known for slamming watermelons with sledgehammers.
I accompanied Talbot into his office and sat on a couch. He took a chair across from me, with a small table between us. He asked me to tell my story. As I recounted the events of the previous two years, he posed an occasional question. I found myself rambling until I was finally talked out.
“So,” he asked, “how do you feel about what happened?”
“I bounce back and forth between fear and hate.”
“Hate for who?”
“Nicholson. Craddock. Everyone who wouldn’t take time to figure out what was happening.”
“How do you feel about yourself?”
I considered the question. There were many possible answers. “Well, I don’t hate myself if that’s what you mean. I don’t know. I guess I’m mad at myself.”
“For what?”
“For being stupid. I listened to doctors even when I knew they were hurting me. And guilty. I kept so many secrets and hurt so many people.”
I struggled to put my thoughts into words. “I hurt myself. I hurt others. I should’ve…I don’t know.”
I stopped, expecting Talbot to ask me something. He just watched me. The silence grew oppressive.
“I miss my old life,” I finally said. “Everything I think and feel is different than it was. In some ways that’s good, but I still wish I could go back to the life I had before all this.”
Talbot picked up a yellow pad of paper from the table. “You can’t,” he said firmly. “The person you were is gone.”
Experience shapes and transforms people, he explained, and that can be shocking. Everyone forms mental conceptions of themselves—their values and beliefs, their expectations of how the day will unfold, their challenges and goals. When they look in the mirror, they recognize and understand the person looking back at them, he said.
He drew a circle on the pad. “This was you,” he said. “This was your self-conception. You never thought of seizures as part of you. The fear and the guilt you talk about now had nothing to do with your life then.”
He drew another circle intersecting with the first.
“This is you now,” he said. It’s not a completely different person, he explained—that was why the circles overlapped. But things had shifted to a place I hadn’t planned for them to go. The first circle existed until I was eighteen, when my seizures began. The second had been my reality ever since.
“When you accept that the person you were is gone, you can start to accept the person you are,” he said.
I mulled that over. I mentioned that I’d planned for years to drive cross-country after college graduation but had already let that dream go. So at least I was beginning to recognize my life was not the same as it had been, I said.
He answered in a clear voice. Some plans would have to be drop
ped and new ones adopted. And no matter what happened, even if the seizures stopped, I would never return to who I had been; experience changed me. Once I abandoned my original conception of myself, I could love the person I had become.
Our session ended, and I headed to the elevator. I didn’t know what to make of Talbot. I was tempted to dismiss his advice as platitudes, feel-good bromides from a fortune cookie.
Outside, as I waited for my mother, I sat on the sidewalk to protect myself from a fall. Talbot’s words echoed in my mind. I thought about who I had been before my first grand mal seizure—largely carefree, immature, without much worry or planning for the future.
That person was gone. Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear, but also deeply contemplative about my future and my values. I had recently said to my mother, “I’m too young to be this old.” Circumstances forced me to face my present and future with a world-weariness I never would have expected at my age.
Talbot was right. I had to face the truth. My old self was gone. This other person, this different me, had taken his place. A sadness swept over me as if a loved one had passed. I hesitated. Then, acceptance.
“Goodbye,” I whispered to the person I had been.
* * *
—
My days became a series of doctor visits to check my blood count, Dilantin and phenobarbital levels, seizures, emotions. My mother made an appointment for me with an internist to assess lingering damage from my injuries over the years. He confirmed that the white growth inside my lower lip was scar tissue from repeated biting during seizures and recommended I have it removed. No way. I would not allow a procedure requiring anesthesia while adding Dilantin to my medication regimen.
He found a few scars and other old wounds, then recommended I visit an orthopedist about my ribs. A few days later, I sat on an exam table as a sports medicine specialist examined an X ray of my chest. Some rib fractures had mended. One rib was still broken on two sides, creating unattached pieces of bone that would take time to heal.
“Be careful not to hit your chest,” he warned. “A hard impact could shift one of those pieces and puncture a lung.”
I snorted a laugh. “That’s going to be difficult. My epilepsy still isn’t controlled. I could fall at any point.”
The doctor looked taken aback. “Do your best,” he said.
* * *
—
I once again recounted my history later that week, this time in a lawyer’s office. I was meeting with Marc Barta, a family friend and the husband of one of my favorite high school teachers, Stephanie Barta. I had decided I couldn’t let Nicholson, Craddock, and Strauss off the hook; I wanted to reveal their incompetence and the harm they caused. To regain my strength and self-respect, I needed a jury to hear the story. I cared nothing about money. I just hoped to shine a light on their actions and force them to explain themselves.
I finished the tale, and Barta leaned forward. “That’s horrifying,” he said. “I am so sorry all of this happened to you.”
He glanced at my mother before continuing.
“I have some questions,” he said. “You said that Nicholson works at the medical school under your father. Do you think your dad will support you in a lawsuit?”
I paused for several seconds, staring at my lap. “I don’t know,” I replied softly.
“Do you think he’ll testify on behalf of his colleague?”
A much longer pause. My mother could see my thoughts about the question were tearing me up. She considered calling for an end to the discussion.
Finally, I spoke, still averting my eyes from Barta. “I don’t know,” I said again.
My mother shifted her gaze from me to Barta. His expression was compassionate; she knew he recognized the anguish from my uncertainty about my father’s allegiance.
Barta spoke briskly. “It doesn’t matter what he does,” he said. “I have no doubt that you’ll win this case.”
I felt a moment of elation, then realized a “but” was coming.
“But we need to discuss something, and I want you to think carefully about it,” Barta said.
A lawsuit wasn’t just filing a complaint followed by victory. I would have to go through my story again and again. These doctors weren’t going to cave and recite mea culpas. They would fight fiercely. Their malpractice insurance companies would hire lawyers to wage war against me. I might have to watch my father testify against me.
“So the question is, do you want to live the past two years of your life for the next two years of your life?” Barta asked.
I knew the answer instantly; I needed to move on. “No,” I said.
“Then don’t sue. Take care of yourself, and don’t let the past destroy your future.”
The words hit hard, but I knew that Barta was right. I told him I would not be able to bear up under the fight. We thanked him for his time, and he showed us out.
* * *
—
That same evening, a hostess at Chili’s whisked my mother and me to a two-person tile-covered table. We ordered our standard fare—Oldtimers with cheese, fries, and Cokes—then settled into a conversation about doctors’ visits, the meeting with Barta, plans for school. And something more astonishing: Five days had passed without a seizure. My growing dosage of the Dilantin—a little white capsule with a gelatinous red band around it—seemed to help. For the first time in months, I went days with no new pains, my mind clear, my appetite ravenous. I accepted with greater clarity each day that sickness had changed me, that the Kurt I had been was gone, and that I could accept the person I had become.
The waitress placed baskets of food in front of us. As I ate a few bites of my cheeseburger, my mind drifted back to the meal my mother brought me from The Feed Bag when I was in the hospital. That had been two weeks ago. When I ate that lunch, I still believed I might be mentally ill and had not yet shaken thoughts of suicide. I had been despondent, but between the time I ate that cheeseburger and the one I was chewing now, doctors had rescued me, turning my life around.
I thought about my former neurologists—Nicholson, Craddock, Strauss—who, through arrogance or inattention or incompetence, had placed my life in jeopardy, leaving me beaten and scarred, hurting my friends, hurting my family. And those doctors would never pay a price for what they had done.
Nicholson. My father’s colleague. A fury smoldered inside me. I was gripping my cheeseburger, crushing it. I placed it back in the basket.
“Kurt, what’s wrong?” my mother asked.
I closed my eyes tight and pushed my fists against my forehead.
“Nicholson! That son of a bitch! He did this to me! All he had to do was listen! Just for twenty minutes! He treated me like shit on his shoe, answering nothing, telling me to be afraid of everything. That fucking sadist! He got off on this! He didn’t call me back, he berated me, he ignored me because causing pain thrilled him. He’s a psychopath! He’s a fucking psychopath!”
I wiped my palms across my face. “And nothing’s gonna happen to him! He put me through two years of hell, and nothing! Nothing! He’ll just do it to someone else. Maybe next time he’ll kill somebody. He’ll enjoy it. And I can’t stop him!”
My mother listened in silence, knowing she had to let me release my rage against the man who could have stopped the horrors of the past two years. She struggled not to cry as she watched the explosion of my temper. The pain this poor boy is experiencing is unbelievable, she thought. If I could take just a little bit of the pain he’s experiencing…But I can’t do that. I can only reach out to him and hold him and hug him.
“Dad could stop him!” I yelled. “Dad could get him fucking fired! But he won’t do it! No, he won’t do it.”
I pounded the table twice as I curled my back, bringing my face to just above the tile as I started to so
b. “ ‘Would your dad testify for Nicholson?’ ” I said. “I couldn’t answer Mr. Barta. I couldn’t answer! I didn’t know! How could I not know? My friends would know if their dads would side with them against a man who could have killed them. Everybody knows! I don’t know. Why can’t I know?”
I started shaking my head. “I can’t deal with this,” I moaned.
The explosion was getting out of control. My mother decided the time had come to intervene. “Kurt—”
“No!” I barked. “There’s nothing to say.”
My father had trusted Nicholson and the rest of those doctors. I had heard about how, even as he watched my convulsions, he believed—no, I was sure he wanted to believe—that I was mentally ill. Now there was no doubt that I had a neurological problem, something that could be controlled with medication. Was my father so repulsed by epilepsy that he preferred for me to have a possibly untreatable psychological problem? Nicholson worked for him—had my father played a role in that son of a bitch refusing to speak to me? Was this my father’s fault?
My mother watched my face and grew concerned. She could tell something bad was happening. The growing fury she saw was greater than anything she had witnessed before.
I spoke through gritted teeth. “How could he have believed them?” I said in a soft, contained rage.
“What do you mean?”
“Dad. How could he believe them? He wanted me to be crazy! He thought that was better than me having epilepsy.”
“That’s not true.”
“Then why did you have to work so hard to convince him?” I raised my voice. “He did nothing to help me! Not a fucking thing! He got me to see those bastards who tore me to shreds. Then just walked away! He walked away! He left me out there, going through all this, because he’d rather I die than have epilepsy. He’s a fucking doctor!”
“Kurt…”
“He was always the one who demanded he manage our medical care. ‘Oh, only I know good doctors. Only I know what to do.’ ” My breathing grew heavy. “Fuck him!” I shouted. “Fuck him!”
A Mind Unraveled Page 17
