“So why do you still have me on an anticonvulsant?”
His answer was a jumble of words, then a return to the psychological exam I took at the hospital, the non-seizure during the bone biopsy, the normal EEG. He finished by telling me that if I wanted the episodes to stop, I needed to return to my psychiatrist. I telephoned Wolfe and recounted my conversation with Strauss.
“I know what he thinks,” he said. “I don’t understand it.”
“He says I can only get better if I keep seeing you.”
Wolfe stayed silent for a moment. “Kurt, I can help you deal with your emotional reaction to the seizures. But I can’t stop them. You have epilepsy.”
* * *
—
My mother visited the Dallas Epilepsy Association for the second time since my diagnosis. My medical care had been terrible, she said, and the seizures wouldn’t stop; she feared I would not bear up under the pressure much longer.
The counselor gave her a name: Dr. Allan Naarden, whom he described as the neurologist for hopeless cases. He worked at Medical City in Dallas. While he couldn’t help everyone, Naarden would be the neurologist he would choose in my situation, the counselor said.
My father reacted with fury when he heard that my mother wanted me to see Naarden. That neurologist worked at a for-profit hospital! Those places hired only quacks! He raged at my mother for interfering in my healthcare, for trying to dump me with some sleazy doctor who would make things worse. But he offered no alternatives on how to help me.
Throughout the rant, my mother glared at him. Then her decades-long deference, her willingness to accept his instructions, simply collapsed.
“Stay out of it!” she snapped.
* * *
—
I stood beside the hot, open oven door. Then I fell, landing on the left side of my face. I heard my skin sizzle. Screaming, I reached with my right hand to push myself off the scorching metal. As I pressed on the door, I saw flesh on my palm smoke and bubble.
I bolted up in bed, shrieking. Was it a dream or real? I no longer always knew. Now, when something bad happened during a seizure, I sometimes dreamt during the postictal phase that the ugly event had been a dream. Then when I woke, I was plunged back into whatever reality my subconscious had tried to escape. The lines between imagination and reality blurred—nightmares plagued my sleep, and postictal dreams tricked me into believing real horrors had not occurred.
This time, I pulled at my sheets and pinched my skin as I hyperventilated, hoping I wasn’t about to wake again to discover my face and hand had cooked. After about twenty seconds, I took a deep breath of relief—the oven episode had been a nightmare.
No one was treating me. I took my phenobarbital every day, but it may as well have been Tic Tacs. Strauss increased my dosage but still continued insisting I suffered no physical problems and only Wolfe could help me. Meanwhile, Wolfe kept repeating he could not stop the seizures, and finding a solution was in Strauss’s hands.
I talked to Carl endlessly in our shared bedroom at night, trying to keep him awake in a pointless effort to fend off nightmares. When I gave in to his pleas to let him sleep, I sometimes retreated to the Moors’ rooftop deck in the middle of the night. I knew exhaustion could trigger more seizures or hysteria or whatever was going on. But my nightmares had become so gruesome—falling off cliffs, plunging chest first into poles, being crushed by a truck, burning—that I took the risk. Sometimes, I was so frightened and lost, I just sat with Carl and sobbed. Everything was chaos. He didn’t know what to do.
My job at the BGA was supposed to last until August 14, but eventually—as a result of my mother’s pleas, in recognition of the harm I was inflicting on Carl, or simply out of feeling too sick—I agreed to abandon my work and fly home on August 6. In my mind, by quitting my job early, I had failed. And now I had this trail of medical records—I’m crazy because I piled up my clothes; my EEGs are normal; oh no, I’m sane: I just have epilepsy; wait, no, something else—that left me convinced this ordeal might never end. My mother told me about another neurologist—another neurologist, another neurologist. What difference did it make? They knew nothing. They hurt me. They berated me. They almost killed me.
Some nights as I sat on the rooftop, awaiting the sunrise, I struggled with my deepest fears. As it was, life was not worth living. I came up with two plans. The first: I would run away to Arizona, walk into a neurologist’s office, announce I had just experienced a seizure, and start again. I don’t know why I chose Arizona; I had never been there. But if I pretended my condition was new, I thought, I wouldn’t be stalked by my medical records. Piling up my clothes, the bone-biopsy non-seizure, the fall from bed that apparently never happened—all would be gone. It was an irrational plan, but it was the only thing between me and my second idea:
I would kill myself. Strauss had mentioned hearing of someone becoming toxic on Tegretol after she swallowed a bunch of pills in a suicide attempt. A bottle of my phenobarbital, I figured, could do the job too. Once I obtained my next full refill, I could down them all.
On the night of August 5, I cried and hugged Carl. Going back to Dallas terrified me. I wouldn’t kill myself in Chicago; I couldn’t do that to a friend, since he would be the one to find me. I would swallow the pills in Dallas…but I didn’t want to die…but I didn’t want to suffer. I knew Arizona was unworkable, leaving only my second plan. And so I sobbed, knowing Dallas meant death, wanting to beg Carl for forgiveness without revealing he would never see me again.
The next day, two of Carl’s friends drove me to the airport. I didn’t pack some of the new clothes we had purchased that summer, instead leaving them at the Moors’ house. I figured the shirts might fit somebody they knew. I wasn’t going to need them anymore.
In a conversation with
CARL MOOR, 1986
CARL: After the hospital you were emotionally, physically much worse off. But you became so obsessed with living a normal life that you made a normal life impossible. You were so obsessed with not losing your job at the BGA and proving that you could work. Every day, you had to go to the office. You would absolutely not stay home. And it would take us sometimes forever to walk to the “L” station, which is five minutes from my house, because you were so beat up and walking so slowly. But you just wouldn’t skip work. And I thought, This is crazy. That you should go home and you should do what you can to get better.
KURT: Why didn’t you tell me you needed me to leave?
CARL: Because that would have been the worst slap in the face of all. Kurt, I can’t stand it anymore. Go home. That was what you feared worst. That was readily apparent—that you were terrified everyone would abandon you. I couldn’t do that to you.
An audio diary from
ELVA EICHENWALD, 1982
I got strength somewhere to decide that I was going to fight for my son and get him the care that he needed, and I was prepared to go to any length to do that. Toward the end of July, Kurt was obviously doing very, very badly. I begged him to come home. He wouldn’t come home. He said that he had to finish this investigation he was doing, and I begged him, and I begged him. His father ordered him, and nothing happened. He scared me, because he was accepting his seizures as a way of life, and I kept saying, “That’s not a way of life.” Seizures every day is not a way of life, it’s an existence, and I was afraid that at some point it all would be too much and that he would decide to end his life. I know that I would.
I chose to find out more about epilepsy, everything I could. Went to the Epilepsy [Association] again, talked with the counselor there, who was absolutely fantastic. I visited with him and expressed my fears and concerns, and he gave me the support I needed to continue to let Kurt do what he had to do. Kurt had told me that if I did come to Chicago again, he would not come home, and the counselor told me that he felt Kurt very well might run away. He believed Kurt was very
frightened and very confused and that he must be allowed to come to terms with this in his best way.
We finally did get Kurt to come home; he looked awful when he got off the plane. He looked like a scarecrow. He looked very sick and very tired, and he was the son that I didn’t know. Dark circles under his eyes, and his normally sparkling eyes and bright, cheerful outlook were gone.
CHAPTER TWELVE
I lay on my bed in Dallas, propped on pillows and wearing a now-loose-fitting Mickey Mouse T-shirt that I’d outgrown years before. The bottle of phenobarbital in my hand rattled when I shook it. One-quarter full. I wondered if that would be enough to end my life. I thought through my Arizona plan again. I couldn’t afford plane tickets, I couldn’t drive, I couldn’t pay the medical bills. But a suicide attempt, I knew, had to succeed on the first try. I decided to wait until I had a full, fresh bottle of the anticonvulsant before reaching a verdict about whether to kill myself.
It was August 8, a Saturday. I’d arrived home two days earlier and experienced a grand mal seizure the previous evening. My father had fully subscribed to Strauss’s diagnosis that this problem was psychological, so my mother forced him to stand over me as I clenched, bit, and convulsed. “Look at him!” she shouted.
I didn’t care what the truth was. Fear, embarrassment, anger, guilt, and a desire to make it all go away overwhelmed me. I glanced around my room at the ceremonial masks hanging on the walls, decorations my father brought back from overseas trips. I wondered if any of them represented death. Or health. I realized I’d never asked how the various tribes, religions, and indigenous people used the masks or why. I just thought they looked cool.
I heard footsteps and tossed the pill bottle into a bedside table so no one would ask why I was holding it. My mother appeared. I never closed my bedroom door anymore to make sure I could be heard if I had an episode.
“How are you feeling?” she asked.
“Same as always,” I replied, emotionless.
“Your speech sounds good.”
“Yeah, well. Give it time.”
She sat at the end of my twin bed, the only spot with enough room. “We need to talk about—”
“No.” Again with this Naarden guy.
“Kurt…”
“What’s the point?” I argued. “He’ll tell me I have rabies or aliens are shooting beams into my head or say I’m not taking my meds. I hate neurologists. They’re all the same.”
She took my hand. “Kurt, I can’t make what’s happened go away. And I’m sorry you have been so alone in fighting this. We made a lot of mistakes. But this is not the time to give up.”
I was about to speak but she interrupted. “You need to go. And if he is not the right neurologist, we will find another one. Things can’t go on like this. But you won’t be alone anymore. You’re a fighter, and I’m going to fight with you.”
I looked in her pleading eyes. A stab of guilt cut through me. If I didn’t go, I knew I would just hurt her more and we would spend my final days—well, maybe my final days—arguing about Naarden. I had caused enough pain. I could waste time with another quack if it would make her happy.
“Fine,” I said.
* * *
—
Days later, I sat in sullen silence in the passenger seat as my mother drove the fifteen minutes from our house to Medical City. I knew my surliness only added to the pressure on my mother—the night before, my father had again complained bitterly about her taking me to a doctor at a for-profit hospital. I silently rooted for him to win the argument but couldn’t help applauding her newfound assertiveness.
We headed to the crowded parking lot and maneuvered into a space. My mother uttered a few words of encouragement, then stepped out of the car. I didn’t budge, not even to unfasten my seat belt, as I imagined the coming medical interrogation: Why don’t you know the answer to this question? Why didn’t you ask other people what happened? Why didn’t you have a seizure on Tuesday? Why are your EEGs normal?
The driver’s-side door was still open, and my mother leaned down to talk to me. “Kurt,” she said, “I know you don’t want to go. Please do this for me.”
I unfastened my seat belt and climbed out of the car, shuffling behind my mother. She walked with such self-assurance that I realized she must have been to this place before. After riding the elevator upstairs, we stepped into a long hallway. No pictures hung on the wall, creating an illusion that the corridor became narrower and narrower.
Great. This neurologist works in a funhouse.
When we reached the end of the hall, I noticed a sign that read, “Texas Neurological Institute” with names listed beneath it. For the first time, I saw how “Naarden” was spelled. The two a’s together left me wondering about the name’s country of origin.
Inside, I flopped into a chair in the waiting room while my mother went to the reception desk. I knew I was being petulant by refusing to do more than just show up. I wouldn’t even greet members of the staff.
The room was packed with patients, some in wheelchairs, others with noticeable neurological impairments. I realized I had never seen a person with an obvious, significant health problem in any other neurologist’s office.
After about twenty minutes, I was called to the back by Naarden himself. My mother went with me, a good idea given the likelihood that without her, I would bolt if this doctor started spewing nonsense.
Naarden ushered us into his office. He was a heavyset man with a mass of black hair and a bushy mustache. He flashed a broad smile, his demeanor conveying an animated charm, but I vowed not to be fooled by his façade of affability. I took my seat in silence as Naarden sized me up. He knew I was irritable, likely belligerent, but he was unfazed. He witnessed those emotions and behaviors frequently in seizure patients. I never imagined as I glowered at him that this doctor already understood the psychological struggles I faced because of my seizures. Despite my father’s protestations about Naarden working with a for-profit hospital, I would soon learn that he was the best-trained neurologist I had ever consulted, one who bristled with credentials.
* * *
—
Borough Park in Brooklyn teemed with energy in the 1950s, its streets packed with Orthodox Jews clad in black coats, prayer shawls, or long-sleeved dresses. A kaleidoscope of residents headed down Thirteenth Avenue toward an open market where pushcart vendors once lined the road. Young and old obsessed over the Brooklyn Dodgers, and the boys emulated their heroes with games of stickball in the streets, swinging broomstick bats as their shoes grew tacky on the hot asphalt.
That was the world Allan Naarden experienced growing up on a treelined street in the Kensington neighborhood, but he was not the kind of boy to be found in a pickup game. Never an athlete, he spent hours reading in his beloved Brooklyn libraries, captivated by worlds he could explore only in books. Like many Jewish families of the day, the Naardens considered education a great leveler, a gift that opened opportunities to anyone with determination, and they urged young Allan to pursue learning without compromise. While Naarden’s father was a diamond merchant, his mother and grandmother pushed relentlessly for Allan to achieve more—he should be a doctor, they said, the pinnacle for an educated man.
By junior high, Naarden realized he had a knack for academics and decided he wanted a life dedicated to expanding his mind. The public-school system allowed for the brightest sixth graders to graduate into a special rapid advanced class, and Naarden’s mother made sure he was ready for that program. From there, he skipped eighth grade and headed straight to Erasmus Hall, one of the oldest public high schools in Brooklyn. Coming from a family with little money, Naarden relied on the taxpayers for the rest of his education. He earned his undergraduate degree with honors at Brooklyn College and went to medical school training just over two miles from his boyhood home, at the State University of New York Downstate College of Medicine, graduatin
g magna cum laude. Then it was off to an internship and medical residency at Maimonides Medical Center, also in Brooklyn.
It was there that Naarden began to wonder. He’d spent his entire life in this one borough, and that was all he knew. If he didn’t leave, he realized, that parochial mindset that affected so many New Yorkers could infect him. He wanted to meet different people, see other places. By then, he had married, and his wife, Audrey, entered a master’s program in music at Yale University. A neurologist at Maimonides piqued Naarden’s interest in the brain, so he decided to attend Yale for a fellowship in that field of medicine.
He arrived feeling out of place, a kid from Brooklyn about to walk the halls of the school that taught some of the world’s greatest medical minds. Now I’m going to be let in on the secrets of medicine, he thought. Instead, he discovered that his training had been top-notch—he had more experience with the most frequent neurological conditions and with hands-on patient care than many of his Yale colleagues. He worked under Drs. Gilbert Glaser and Richard Mattson, giants in the field whose interest in epilepsy played a major role in Naarden’s professional journey.
He never lost the humor and sparkle that infused life in Brooklyn. As the senior fellow under Glaser, Naarden had the job of driving the world-renowned doctor to the nearby Veterans Administration hospital, and if his boss was in a bad mood, the young neurologist would catch the brunt of it. After realizing that Glaser had an obsessive fondness for Britain, whenever he climbed into the car seeming grouchy, Naarden would mention fog, umbrellas, tea, or whatever; the conversation between boss and driver invariably transformed.
Naarden also was willing to play jokes on his colleagues. Once he learned that a nurse owned a poodle with seizures. He made a plan—translate the dog’s age into human years, and present him as a case to other doctors at the weekly neurology grand rounds. Then he would ask Glaser if he would like the patient brought in. Naarden felt sure when the poodle arrived, everyone would crack up. He discussed the idea with his other boss, Mattson. He didn’t laugh.
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