A Mind Unraveled Read online

  “Hold still.”

  “No, get it out! Get it out! It’s going to break! I’m going to have a seizure!”

  “Just hold on.”

  My arms shook as I gripped the headboard tighter. I was crying and hyperventilating. This wasn’t a seizure.

  It’s coming!

  They finished and removed the instrument from my back. Then I lost consciousness, from the pain, from the cessation of pain, from the hyperventilation, from the overdoses—the possible causes were almost endless. The seizure I’d feared hadn’t been real. Consumed by alarm and agony while psychologically unprepared for the second biopsy, I had experienced a major panic attack.

  * * *

  —

  I woke in my bed as someone bandaged my back. Some members of the group who had performed the biopsy were still in the room. My hip throbbed with pain, and I could barely open my mouth to speak. My thoughts were clear, though all my energy had drained away.

  Everything after that moment is a blur. I ended up in a clean bed on the opposite side of the room; my mother told me later I had soaked the sheets so badly with sweat that they moved me to Stale Cigarette’s old, now-clean bed rather than have me stand while they changed my linens. I don’t remember moving. A lower back muscle spasmed, and trying to stretch it, I raised the head and foot of the bed as far as they would go. I fell asleep in the mattress version of a taco shell.

  A new roommate arrived and took my former spot while I dozed. When I woke, he greeted me with a fulsome grin and a big “hello.” He appeared to be in his early eighties, and he introduced himself as Irwin Henoch. His wife, Florence, waved at me and asked how I was feeling. I replied that I was okay and introduced my mother, who told me they had been speaking for a while.

  Irwin and Florence treated me more like family than a hospital roommate—in fact, within a day, he was calling me his ersatz grandson. He recounted their lives, ordinary talk that came alive with the twinkle in his eye, the lilt of his voice, and the animation of his gestures as he spun his tales; I was captivated. We discussed what had brought him to the hospital, and Irwin explained that a part of his spine near his brain had become clogged and needed to be cleared.* The couple was open about his prognosis—Irwin required surgery, and because of his age and poor health, he might die. He seemed resigned to whatever might happen, but I could see Florence was frightened, putting on a brave front for her husband.

  The three of us talked and talked, and the conversation reminded me that my life was filled with promise and opportunities. The anger, confusion, and fear that had eaten at me gave way to something: Determination? Empathy? I was content and resigned to my fate. For the first time in days, I cared about the outcome but also accepted it was beyond my control.

  My mother listened to these conversations with a watchful eye and, at one point, seeing how relaxed I was, told me she was going to leave for a bit. She needed a break. She returned from the gift shop with a high-quality pen she had purchased for Irwin as a “thank you” for being so kind to her son.

  That day, she explained to Carl that I was extremely ill, telling him about red blood cells and bone marrow and using terms he didn’t recognize. It was only later when he spoke to his own mother, Lynne, that he came away believing I might have leukemia or some other cancer.

  Not long after, Carl and Lynne showed up in my room; he carried a copy of a record by my new favorite band, the Roches. Had Carl bought me a present? That was odd, I thought. I studied their faces and detected a mixture of uncertainty and dread. Carl said something, but his tone was different than ever before. There was hesitation, no humor, no goofy put-downs.

  Wait a minute. They all think I’m going to die.

  Ridiculous. In my convoluted reasoning, I couldn’t get sicker. I had told Craddock for months there was something wrong with the drugs, only to be dismissed with his “I’ve never heard of that as a side effect” mantra. Now everyone knew I had been correct. The doctor had been wrong. I couldn’t die when I had been right all along.

  The visit ended on an uncomfortable note. Carl clearly had no idea what to say. My mother was on the verge of breaking down. Lynne tried to be her usual upbeat self, but I saw through her forced cheerfulness. I was glad when everyone left.

  I resumed my chats with Irwin and Florence. She started unpacking a suitcase, and I saw she couldn’t find a place for her clothes. I understood—with Irwin’s life at risk, Florence wanted to spend every moment with him until he was wheeled into the operating room.

  I climbed out of bed, grabbed my IV pole, and wheeled forward. “Use my closet,” I told her.

  “Oh no, I can’t,” she said.

  “Of course you can. You have nice clothing. I have a bunch of T-shirts and jeans. I’ll put my stuff somewhere else.”

  She thanked me as I emptied my closet, then I stacked armfuls of clothes on the table used for meal trays. Florence finished unpacking and sat in a chair. Both she and Irwin sounded exhausted.

  “I think everybody needs to go to sleep,” I said.

  They agreed. We turned out the lights.

  * * *

  —

  I sat in the dark, the head of my bed still raised as high as possible to stretch my back. I could have slept but didn’t want to. My mind flooded with thoughts, many inspired by the love and happiness I saw in Irwin and Florence as they accepted his own uncertain fate.

  Why was I trying so hard? I was always in pain, fears were endless, and doctors made everything worse. Graduating with my class would give me the reassurance to know I wasn’t letting epilepsy beat me, but that goal was not about life. There had to be a more important reason than that to keep pushing.

  What’s the purpose? What do I want?

  For hours, I lay there, mulling my future. Obviously, I thought, I wanted to be happy, but what did that mean? For years, everyone I knew—including me—assumed I would be a lawyer. After all, I debated in high school, and litigation was sort of like that. It upset me terribly when Nicholson shot down that aspiration, saying someone with epilepsy couldn’t practice law because of stress. But why did I want to be an attorney anyway? It took a second for the answer to hit me: I didn’t. I’d drifted toward law because I hadn’t given it much thought. I’d graduate from college, go to law school, become a lawyer, the end. But after facing my own mortality every day, fighting to overcome these challenges, it seemed like self-betrayal to travel the unthinking path. If my health improved, my future self owed me, the me in this hospital bed, not to blithely take the easy route. I remembered a phrase from a poem by William Blake: “mind-forg’d manacles.” Before my seizures, I had chained myself, out of laziness or a lack of imagination, to a future I didn’t want.

  Suddenly, an epiphany. Life is divided into two things—those that can be controlled and those that can’t. I couldn’t control my seizures. What else? I couldn’t control medication side effects. I couldn’t control what others thought of me. I couldn’t control whether a particular person loved me. I couldn’t control whether someone chose to give me something I wanted, like a job. What did I control?

  Everything else.

  If I faced people who feared me or denied me work, I could control whether I gave up or tried to change their minds. I couldn’t force someone to hire me, but I could work hard, assembling a strong enough résumé to prove that I was a candidate worth considering. I couldn’t make someone love me, but I could be a person worthy of love. I could control the petty feelings that well up in everybody—jealousy, hatred, bitterness—by remembering that, in the scope of life, they were inconsequential. I controlled whether I pushed an elevator button, but I had no control over when—or if—it arrived.

  So what did I want? The answer popped into my head: to be a newspaper reporter. In that job, I would always be learning, interacting with others, and seeing the world. That was almost what I was doing for the BGA, an
d I loved it.

  I remembered my professor’s comment on my first college essay. Your writing is grotesque. He had been right; when Michael wasn’t around, it still was. But I could control how I handled that. I could give up, or I could learn the craft.

  If I committed to working for a newspaper, I knew I would face challenges beyond my lack of talent. Unable to drive, I could live only in cities with mass transit, which meant I had to start at a major newspaper such as The New York Times, The Wall Street Journal, or The Washington Post. As my mind ranged over the obstacles I faced, it hit me again: I controlled whether I would accept the challenge. Slinking away to pity myself would mean Michael won. I was taking my life back. Despite the difficulties I recognized, I promised myself I would not let him defeat me. I would be a newspaper reporter.

  What else? I wanted to be married to a fun, lively woman—I pictured Laura Petrie, the wife of the main character from the old television program The Dick Van Dyke Show. I wanted my marriage to mean something. I wanted to be an attentive father to several children. I wanted a life that mattered, at work, at home, to my descendants.

  I finally understood—I possessed more control than I had believed. Healthy people didn’t always understand the scope of how much could be overcome. I certainly never had before I got sick. As for what I didn’t control—the seizures, how others reacted to me—to hell with it. I could control how I reacted to the uncontrollable.

  Sometime after midnight, I closed my eyes, feeling far more powerful, far more in charge of my life, than ever before.

  * * *

  —

  The next day, my doctors informed me there was no doubt—my anticonvulsants were killing me. They wanted my authorization to stop the drugs as fast as possible. My neurologist and a pharmacologist concluded that phenobarbital was the only safe anticonvulsant for me to take until my bone marrow recovered. A drip of that drug was attached to my IV, a necessary precaution since the withdrawal of Tegretol and Depakene could trigger seizures. Sometime later, the drip was removed, and I received the medication in pill form.

  I slept a lot. Once I woke up deeply confused and realized Florence was asking if she should call the nurse. I rasped, “Why?” She told me she had just returned to the room, and Irwin had told her that while she was gone he heard me making odd sounds—my teeth crunching and strange breathing; he hadn’t been able to see what was happening because the curtain between us was drawn. It was okay, I told her. I did a quick mental assessment of my body—yes, I’d had a seizure; all the post-episode feelings were there. I fell asleep.

  Then there was a man beside my bed. He introduced himself as a psychologist and told me that my neurologist wanted him to examine me. He asked questions for about twenty minutes, administered a written test, and then was gone.

  Technicians checked my blood every few hours, but I never asked about the results. The jitteriness of the medical staff had eased, so I assumed I was better. The first hematologist I’d met—the doctor who had been honest with me about the dangers I faced—was more upbeat. They pulled me off the drugs quickly after he estimated that my bone marrow had been five to seven days from shutting down. I asked whether I would have died if I had delayed my hospital stay by a few weeks.

  “In the condition you were in, there was a good chance,” he replied.

  Maybe it was the passing of the danger, or Irwin and Florence, or the sense of control I developed in my night of contemplation that they inspired, but I felt calm. My fears, my desperation, had slipped away.

  At one point, I woke in the middle of the night with my head on the floor and my foot stuck under one of the bed guardrails. I knew I had experienced a grand mal seizure, but it took me time to understand I had fallen out of bed. Extracting myself from this position proved impossible. I heard Irwin and Florence snoring and called to them, but they didn’t awaken. A nurse or someone else—I couldn’t tell who—turned up. She eased my foot out of the guardrail and helped me back to bed. When I awoke the next afternoon, my mother was there. She told me she had arrived in the morning and, based on how deeply I was sleeping, concluded I had convulsed during the night.

  * * *

  —

  By the last day of my hospitalization, the Tegretol and Depakene had cleared my system, and I was instructed to never use either anticonvulsant again. Given how long I had been toxic on both drugs, a doctor said, no one knew what might happen if I resumed taking them.

  My neurologist, Strauss, showed up that morning before my mother arrived. I realized I had barely seen him throughout my stay, but other people had come into my room and identified themselves as neurologists. I remembered—Northwestern was a teaching hospital. The other doctors had probably been medical residents.

  I stood beside my bed in a robe. Strauss reviewed what had happened during my stay and confirmed that, yes, my levels of Tegretol and Depakene had been more toxic than he’d ever seen. He mentioned that one colleague had encountered someone with higher Tegretol blood levels in an emergency room, but that was a patient who intentionally overdosed in a suicide attempt.

  He rambled on, but I paid little attention. The world struck me as blurry, but not in how it looked. I thought if I commented on that, no one would understand what I meant.

  Wait. What?

  “Did you hear me, Kurt?” Strauss asked.

  “No, I’m sorry. I wasn’t listening. What did you say?”

  His face was firm.

  “You don’t have epilepsy,” he said. “Your seizures are psychological.”

  * In the course of my writing this book, doctors have told me that this is a rudimentary and partly inaccurate description of a condition called spinal stenosis.

  In a conversation with

  DR. ALLAN NAARDEN, 2017

  Just think about the main problem with seizures. It’s the chaos that it causes in your brain. It’s very difficult to focus and to think coherently. You can imagine how people would believe when somebody else is telling them that they’re mentally ill. How many patients wound up in mental hospitals with the diagnosis of suffering with psychological illness when that isn’t what they had?

  CHAPTER ELEVEN

  My first reaction to Strauss’s statement was gut-wrenching exasperation—another neurologist saying the others had been wrong. I had petit mal, I didn’t have petit mal. My medications were fine, my medications were low, my medications were high. I had epilepsy, no I didn’t. Then, disbelief: I had been throwing myself down stairs, biting my lip until it bled, breaking ribs, losing friends, living in fear, and it was all psychological? If those hadn’t been seizures, I had to be insane.

  “They’re not epilepsy?” I snapped.

  In a sharp tone, he told me to stay calm. I sat down on the bed, trying to absorb his words. A fear struck me. A doctor had just suggested I was mentally ill; perhaps his curtness toward me had been a warning. Maybe orderlies were in the hallway, ready to whisk me off to a psychiatric ward if I became argumentative. I felt a chill. I recognized I was being paranoid; there was no one ready to pounce. Probably. For a moment, I wished I could shut down my emotions whenever I wanted. I needed that now.

  Watch your tone.

  “Okay,” I said. “If the problem is psychological, then we need to deal with that. But explain why you think it is.”

  He started with the bone biopsy. “Medical staff was here. You yelled you were going to have a seizure, and then you shook.”

  “My arms shook.”

  “Exactly. You know what happened. If that had been a real seizure, you wouldn’t know. And the doctors who were there reported that you were speaking much of the time.”

  “But I never said it was a seizure.”

  “You did. And then you pretended to lose consciousness.”

  “I know it wasn’t a seizure. When that thing was in my back, I got scared and thought one was coming.
I never said it was a seizure. And I did pass out after it was over. At least, I think I did. I don’t know why it happened. You’re the one telling me you’ve never seen drug levels this toxic. Do you know how someone would react to that much pain with such high levels of those drugs in his system?”

  “Kurt, it wasn’t a real seizure.”

  “I know!” I shouted.

  “Don’t shout at me,” Strauss said gruffly.

  He was making short, staccato statements, and I was rambling. Calm down.

  “Look, we agree,” I said in a softer voice. “Why didn’t someone just ask me if that was a seizure? If I said yes, you’d have a point. But you’re assuming I thought it was. I was scared one was coming, but whatever happened, that wasn’t one of them.”

  “The doctors who saw it say it was hysteria.”

  “Then it was hysteria. I don’t know what it was. It wasn’t a seizure. I had that thing in my back, they didn’t give me a second to get ready before they did it the second time, and I got scared. It wasn’t a seizure.”

  Strauss looked annoyed. “That’s not the only problem. You’ve been here for days. You haven’t had a seizure the entire time.”

  Wait a minute. “Yes, I did.”

  “No one saw you have a seizure.”

  Was I crazy? I woke up on the ground, having banged my head on the floor. A nurse—was it a nurse?—helped me to bed. I had been postictal; my mother told me. That didn’t happen? I touched my head. A bump was there. It still hurt.

  “Feel my head,” I said. “You can feel where I hit it on the floor when I had a seizure.”

  “No one saw you on the floor.”

  That’s not true!

  Calm. Stay calm.

  “A nurse saw it,” I said. “Or somebody. I couldn’t get my foot out of the railing. The nurse or whoever helped me.”

  “No one reported that. If you fell out of bed, they would file a report.”