A Mind Unraveled Read online

  “But I have the bump on my head!”

  “Kurt, no one reported finding you on the floor.”

  It happened. I know it did. But cracks in my certainty were widening. In mere minutes, Strauss had raised doubts I couldn’t explain away. Why hadn’t I had more seizures? Why had there been only one? I had already forgotten the others, the one Irwin had heard and the other times I woke up postictal. I wrote about those instances of confusion in my diaries on the days they happened but didn’t think to check my records as I struggled with this new diagnosis. In fact, I wouldn’t look at any of them for four years.

  Strauss continued. “The most important part is your EEG. It showed no seizure activity.”

  I stayed silent. The test showed no seizures. No seizures. All of my injuries, all of the emotional trauma suffered by family and friends, and nothing had been detected in my brain, not even when they shoved coat hangers up my nose. Could Strauss be right?

  “What’s wrong with me, then?” I asked.

  “It’s called a conversion disorder, a form of hysteria. I ordered a psychological exam of you while you were here, and the conclusions are that you suffer from emotional disorganization and other symptoms consistent with hysteria.”

  Wait a minute. “You gave me the psychological exam at the same time I was coming off two anticonvulsants and adding another. How could anyone know if they were testing me or testing whatever the medications were doing to me?”

  “Kurt, the diagnosis isn’t from a single piece of information. It’s everything together.”

  Crazy people never think they’re crazy. I knew that. The EEGs showed nothing. I had to be mentally ill. This conversion thing had to be treatable. What difference did it make if I had epilepsy or a mental disorder? Either way, the episodes had to stop. I couldn’t handle injuries anymore. Oh my God. Everyone I hurt. A wave of guilt struck, the worst I’d ever experienced. The anguish I caused so many people I cared about, people I loved—how could I have done that to them?

  I folded my arms across my chest. “Okay, if it’s psychological, what’s the next step?”

  “I’m going to refer you to a psychiatrist I’ve worked with. He’s excellent, and I believe he’ll be able to help you.”

  “Can I make an appointment to see him now?”

  “I doubt he has an appointment now.”

  Why are neurologists so thickheaded?

  “No, I meant, can you give me his number now so I can make an appointment?” I said. “I want to take care of this.”

  Strauss gave me the doctor’s name and told me he was releasing me from the hospital. I would need my blood checked several times a week at the hematology lab, but otherwise there was nothing more for him to do. The discharge nurse would provide me with documents to sign and my prescriptions.

  “Prescriptions for what?” I asked.

  “For your phenobarbital.”

  I stared at Strauss, incredulous. “Why do I need an anticonvulsant? If this is psychological, can’t I just stop the medicine? I’d rather not take anything.”

  He shook his head. “No, I want to leave you on it for now,” he said. “Just in case.”

  * * *

  —

  I had arrived at Northwestern combative and afraid. I departed confused and consumed by guilt. My nausea, trembling, and headaches gradually disappeared, probably a result of coming off the Tegretol and Depakene. My white count remained low, but my red cells and platelet levels increased. I didn’t know how my blood improved so quickly. I may have received a transfusion; doctors have since told me this would be standard for my low hemoglobin count. If so, I either forgot or was unaware it was happening.

  After my discharge from the hospital, my mother and I went for lunch at a sandwich shop in Water Tower Place, the posh shopping mall on Michigan Avenue. The strain on us was palpable, tacitly acknowledged by our silence after we found our table. She looked pale but, unknown to me, had reached a turning point. She didn’t believe Strauss’s diagnosis and was furious that he would proclaim, after one appointment and a couple of drop-ins, that my seizures over the years had been, essentially, fake. She had witnessed my episodes—the crunching of my teeth, the biting of my lip, the saliva, the sounds as I croaked out breaths through muscles contracting in my neck, the stiffening of my body; Strauss had never asked what she thought, what she had seen in the hundreds of days leading up to this moment. She knew I had been postictal at least twice at Northwestern, although she didn’t mention that to me at the time.

  As I sat in the deli, I had no idea I was watching my mother transform; she was resolving to no longer stand helplessly on the sidelines and instead to fight to end the chaos. She had allowed my father to seize the role of overseer of my medical care, then hadn’t fought back when I insisted on finding my own doctor in Pennsylvania—all with disastrous results. If she hadn’t forced me into Northwestern, I would have been dead. Only her decisions had been correct; my father’s and mine had consistently been terrible. She knew taking control would mean fighting us both. She had never been an aggressive person and often allowed my father to dictate her life choices. No more. While she didn’t know her next step, she later told me that the day I left Northwestern, she began plotting how to get me to another doctor, someone she would find by consulting experts.

  First, though, came our usual dance. As I picked at my sandwich, she pleaded with me to return home; again I refused. Now that we knew what was happening, I told her, I should get better. If psychological distress triggered these whatever-they-were episodes, maybe I could will them to stop. My first psychiatric appointment was in a few days. Who knew what might happen after that? I wanted to finish my internship. I would be home in August, just weeks away. I should be better by then.

  I parried every argument until she finally accepted that I would not leave Chicago while I still had a job. Until another doctor confirmed her suspicions, she had no grounds for declaring Strauss wrong. For the next few weeks, she would have to endure her fear that the phenobarbital wouldn’t work and I would be in more danger than before. She thought that trying to force me back to Dallas might backfire, and I might refuse care. She had no options available yet, no answers to give, no doctor waiting, no idea how to find a good one. She decided her only choice was to return home and prepare her next move.

  * * *

  —

  I had almost reached the third floor of Carl’s house, walking a couple of steps behind him, when I collapsed. I flipped twice as I plunged down the stairs, then crashed full force into a wall. I recall none of it.

  Much of the rest of that summer has disappeared from my memory. I stopped recording and writing my diaries. I never told Carl of Strauss’s diagnosis; I was embarrassed and remorseful about inflicting so much on my friend because of some psychological problem. Yet in my rattled state, it never occurred to me that by staying, I was wreaking more damage on him. The intensity of the seizures, their frequency, the injuries—all of them increased. Seeing the psychiatrist and swallowing phenobarbital accomplished nothing.

  “It was just constant. You were so sick,” Carl told me years later. “It’s amazing you weren’t hit by a car or didn’t break your neck falling down the stairs or just wear yourself into the ground. It was awful. It was really awful.”

  By then, Carl and I were alone in the house; his parents had traveled to their home in New Mexico, and my mother, at my insistence, had returned to Dallas. That meant, as I got sicker, Carl—a twenty-year-old kid—faced every challenge by himself.

  I knew my episodes had taken a sharp turn for the worse, but my thoughts were too unfocused for me to comprehend the magnitude of what was happening. According to Carl, I experienced grand mal seizures up to four times a week and frequently collapsed in drop attacks. I would awaken trying to make the postictal state disappear by force of will. If the seizures were psychological, then the post-s
eizure confusion was too. But no matter how hard I tried, I couldn’t make anything stop. The disorientation became dramatically worse. I injured myself so badly during this time that I concluded that the psychological problem causing these episodes had to be severe.

  I returned to the hospital, but not by choice. On July 3, 1981, Carl, his friend Tamar, and I boarded the “L” for the downtown business district, then walked to Grant Park for the second annual food festival Taste of Chicago. Crowds numbering in the thousands milled from tent to tent, where scores of the city’s restaurants sold meals and snacks. As we ambled through the masses of people, I fell to the ground in convulsions. Carl did not know what to do—we were deep inside the park and surrounded by too many crowds for him and Tamar to bring me out. A passerby called an ambulance, which took me to the Northwestern emergency room.

  On another day, I was in the kitchen near spaghetti that was cooking on a stove when I suffered a drop attack; I knocked over the pot of boiling water, and, while I was fully conscious, the liquid scalded my right arm. I banged my head on the street in several episodes. The left side of my chest hurt badly after one occurrence; I figured that I had broken another rib and ignored it.

  The worst moment for Carl came when we were downstairs in the finished basement at his house. He was ironing a shirt, and foolishly, I was sitting on the washing machine nearby. A seizure struck, and I fell into the ironing board, knocking off the iron. Carl reached over the board and caught it by the handle before it crushed my skull. He screamed—not in pain, but in terror.

  Afterward, as I convulsed on the floor, Carl couldn’t stop shaking. Without his catching skills, he knew, I would have been killed. Terror welled up inside him. Suddenly, in what I have always believed was a moment he cracked under the emotional trauma, Carl imagined he heard someone upstairs. He scrambled around the basement, searching for a bat he could use in self-defense. Then he grabbed the phone and called a friend who lived nearby, begging him to come over because some stranger had broken in. When the friend arrived, Carl ran to the door, and the two searched the house. They found no one except for me, lying unconscious beside the washing machine.

  * * *

  —

  Whenever I arrived at my psychiatrist’s office, I reminded myself why I was there. This wasn’t for me to blubber about my injuries; it was about treating my mental illness. I saw Dr. Robert Wolfe at least once a week, and he often changed my appointment if an episode left me incapable of attending. That was the word I used whenever I spoke to him—“episodes.” If they were imaginary, I couldn’t call them “seizures.”

  Wolfe looked like a psychiatrist from the popular imagination: glasses, brown hair, the furrows of time and experience etched in his lean face. I always sat in a chair instead of on the couch, occasionally glancing around the room before our session began. Dark wood panels, desk, bookcases. The sitting area was on a large rug that made me uncomfortable. What if one of my episodes happened there? If I bled on that rug, Wolfe would have to pay a fortune to clean it.

  I never felt embarrassed when I discussed with Wolfe how my obvious madness hurt people; instead, he helped me manage my guilt. He listened more than any neurologist ever had. He never rushed me to make my point, and I’m sure I rambled.

  Early on, he asked a question that struck me as absurd: “Where did you keep your clothes when you were in the hospital?”

  “I’m sorry?”

  “Where did you keep your clothes?”

  “Um, in the closet.”

  He leveled his gaze over his glasses. “The whole time?”

  “Yes.”

  Then I remembered. “No, wait, I didn’t. When my second roommate arrived, his wife was staying with him, and she didn’t have room to store her stuff. I let her have my closet.”

  “Where did you put your clothes?”

  “On that table beside the bed. The one on wheels they use for meals.”

  “So you kept clothes on the table because you were helping your roommate’s wife?”

  “Yes.”

  This was bizarre. “Why are you asking me this?” I asked. “What does this have to do with anything?”

  Wolfe brought out two pages stapled together. “It’s in your psychological report from the hospital.”

  My psychological report? “Why would my psychological report talk about where I put my clothes?”

  “The psychologist concluded that you stacked your clothes on the table so they would be near you, and that was a behavior consistent with you having disordered emotions.”

  “What does that mean?”

  “Not much,” he muttered.

  I realized my mouth was hanging open. “So because I gave up my closet to my roommate, I’m crazy? Are you saying there is something wrong with what I did?”

  “No. I assume the psychologist never asked you why the clothes were on the table?”

  “No, he didn’t. That’s so stupid! How can he reach a conclusion based on where I keep my clothes without asking me why I did it?”

  Wolfe put the report away. “We don’t need to talk about this report. I’m not using it for anything.”

  “What else did he say?”

  He brushed away my question. “It doesn’t matter. I’m not going to rely on this report. Pretend it doesn’t exist.”

  Panic. Another doctor did something ridiculous? What else had gone into that report? Analysis of my robe color? Whether I needed a haircut? Wolfe might ignore it, but would others? Strauss said his conclusions had been based on “everything together.” Among the data he cited was this report, one that Wolfe clearly considered nonsense.

  For all of Wolfe’s graciousness, after several appointments, I grew antsy. We were getting nowhere. I had assumed we would be digging into my psyche, trying to unearth repressed emotions that led me to fake these episodes. But our sessions lapsed into recitations of the previous week’s horrors—the ones I remembered and the ones Carl described. Occasionally, Wolfe asked to see my injuries; I showed him cuts on my arms, bumps on my head. He asked me to describe where my shoulder hurt. I told him about chest pain, dismissing it as another fractured rib; he suggested I see an internist, and I responded that it was no big deal. I’d broken ribs before and knew there was nothing to be done but wait for them to heal.

  “If you keep falling, how is it going to heal?” he asked.

  “Isn’t that part of the reason I’m here? To find out why I’m hurting myself so much?”

  Two days after scalding my forearm with the pot of boiling water, I arrived for a session in a state of exhaustion. Ugly shades of red and purple streaked across the skin. Wolfe asked to see, and I held my arm perpendicular to my shoulder. I commented on how the burn was beginning to look like a bruise, which I didn’t know could happen.

  As I spoke, Wolfe flopped back in his chair.

  “I can’t take this anymore,” he exclaimed.

  His statement shocked me. I had no experience with psychiatry but knew that reaction couldn’t have been appropriate. What had I done? Had I insulted him?

  He sat back up.

  “Kurt,” he said, “you have epilepsy.”

  * * *

  —

  I wanted to scream. Don’t do it. If sharing my closet with my hospital roommate’s wife had become part of my diagnosis, what would happen if I shrieked at my psychiatrist? I had accepted the diagnosis of mental illness, once again tricking myself into having hope, into believing someone would finally discover how to help me. Now back to epilepsy?

  “That’s not what Strauss said.”

  “Strauss is wrong.”

  “He’s the neurologist.”

  “I’m the psychiatrist. And I’m board-certified in neurology.”

  I started crying. “How can you say I have epilepsy now? I had normal EEGs!”

  Wolfe spoke softly in
what I now recognize was an attempt to help me regain my composure. “People with epilepsy can have normal EEGs. It’s quite common. What is not common is people with conversion hysteria injuring themselves. That doesn’t happen. And every time we meet, you look like you just stepped off a battlefield.”

  People with epilepsy can have normal EEGs? “Why didn’t Strauss tell me the test could be normal?” I snapped.

  “I don’t know.”

  I wiped away my tears. So I’m back where I started?

  “Why didn’t you tell me when I came in that people with fake seizures don’t injure themselves?”

  “It was farfetched, but you might injure yourself if you had a multiple personality disorder. But you don’t have multiple personalities. You have epilepsy.”

  I closed my eyes and leaned my head back. I want to feel the sun on my face. Why does this office have so little sun? I brought my palms up to my eyes. I want to feel the sun on my face.

  Time passed. Seconds, minutes—I don’t know how much.

  “Kurt.”

  I looked back down and reached for a tissue on a table next to my chair so I could blow my nose. “Yeah.”

  “You understand?”

  I rubbed my hand across the back of my neck. “Yes, I understand. So what do I do?”

  “You need to go back and see Dr. Strauss.”

  * * *

  —

  “I’m sorry. I don’t accept his diagnosis,” Strauss said.

  He’d telephoned minutes earlier. I called him as soon as I returned to Carl’s house and left a message with an assistant spelling out Wolfe’s findings. Since then, Strauss had contacted Wolfe, and the two argued about their conflicting conclusions.

  “But you said these seizures or whatever the hell they are were psychiatric, and the psychiatrist says you’re wrong!” I snapped.

  “I disagree with him. I’m convinced you have conversion hysteria.”