“Do you like being a neurologist?” Mattson asked.
“Yeah.”
“Then I wouldn’t do that.”
The poodle lecture never occurred.
Research was central to Naarden’s work. The Yale neurology department was among the first to conduct long-term monitoring of seizure patients using video cameras, now relatively common. They performed clinical trials seeking to expand the number of available anticonvulsants; their work contributed to an explosion of drug options for seizure patients over the decades that followed.
Despite the opportunities at Yale and his prestigious title of assistant professor, Naarden grew restless. Staying in academia meant publishing research as he climbed the medical school career ladder. Caring for patients interested him far more. He decided to leave Yale and instead go into a clinical practice that also offered opportunities for research. That way, he could treat patients as well as spend time conducting studies without facing relentless pressure to publish.
He learned from a surgeon friend that a prestigious hospital in Dallas desperately needed neurologists. He landed a job there, and in 1973, he and his wife loaded their belongings into their car and drove from Connecticut to Texas.
Things didn’t work out as planned. In a matter of months, Naarden grew disenchanted by the quality of work at his new employer. The EEG lab particularly disappointed him; the technicians were poorly trained, and it overall did not live up to the standards of quality he had come to expect from his previous training and work. He reviewed EEGs, both old and new, and concluded they would be unlikely to pass independent scrutiny from national certifying organizations.
Naarden decided to move on again. In 1974, two neurosurgeons from Dallas academic hospitals invited Naarden to join them in a group dedicated to both research and patient treatment that would practice at a new for-profit hospital, Medical City. It was the perfect scenario, putting him together with top doctors and allowing him to treat patients while still keeping a hand in research.
By then, Naarden had cared for large numbers of epilepsy patients. He knew not only the latest treatments and diagnostic tools but also the emotional impact of the condition. He understood seizure disorders entailed a loss of control that could be more terrifying to patients than even death. That explained their willingness to surrender authority over their lives to a stranger certified in neurology and their reluctance to change doctors even if mistreated.
Naarden would never claim to fully comprehend those emotions, but he would also never argue with patients about how they should feel. He wanted to be a doctor who offered these people a chance at a life. He might have been able to save me, but I was no longer ready to trust anyone. Fortunately, he knew how to break through the defenses of patients who had given up.
* * *
—
After walking into Naarden’s office, I slumped into a chair ready for the usual questions and tests, then the tired promises: He knew the problem, other neurologists had been wrong, he could stop the episodes. I wondered if he would prescribe a phenobarbital refill; at least then I would have a full bottle available to end my ordeal.
He sat and we started by discussing my staring spells, then moved on to the grand mal seizures and drop attacks. The rest was a rote recitation of history—low medication, high medication, toxic medication, bone marrow problems, and oh, by the way, I’m crazy.
To my surprise, the questions kept coming. He asked whether I was left or right handed. “Left,” I replied, wondering why he cared. Then he pursued details no previous doctor had ever wanted to know. When I didn’t have the answer, he didn’t chastise me or demand I explain my lack of information. After twenty minutes, Naarden had already spent more time speaking with me than any other neurologist ever had, so I figured we were almost done. Then the conversation took an unexpected turn.
“Have you ever read The Brothers Karamazov?” he asked.
A beat passed. Who cares?
“No,” I said.
“You should. Dostoyevsky is thought to have had epilepsy, and it gave him profound insight. He wrote about his own symptoms. The central character in The Brothers Karamazov has epilepsy and experiences seizures of different severity…”
What the hell is he talking about?
“…and in his other writings, Dostoyevsky gave very vivid descriptions of auras and seizures. But he also wrote about the struggles that can present and how epilepsy was perceived by society at the time.”
Jesus Christ. I’m getting a book report from this guy.
“Now, the word ‘epilepsy’ is derived from the Greek, and it means ‘to be shaken from without.’ You might have felt like the seizure isn’t coming from you. It’s almost like it’s emanating from outside of you…”
Ha. You listening, Michael?
“…but different societies have had different ideas about what this thing emanating from outside really is.”
He stood and paced toward my right. I turned my head as I watched him. My anger was giving way to fascination.
“There was an interesting safari that took place in central Africa back in the thirties where researchers went to gain an understanding of how Pygmies viewed disease. They found the Pygmies had a concept of seizures but thought you were being visited by your ancestors. That kind of idea isn’t confined to Africa. In many cultures, there’s been a belief that ancestors visit you and cause mischief if you don’t honor them.”
I wonder if I have an ancestor named Michael. That would be funny.
Naarden was taking me on a literary and anthropological journey through the history of epilepsy and wasn’t stopping soon. He mentioned that some ancient civilizations had discovered imperfect ways to detect epilepsy. “In Greco-Roman times, they suggested that before you buy a slave, you have them look at a spinning potter’s wheel. Now, why do that? It’s because you’re being strobed. And a strobing light can trigger a seizure…”
Wait, what? Somebody told me I had a seizure after a strobe light went on at a dance. Strobes set off seizures?
I interrupted. “I think I’ve had that happen,” I said softly. “I had a seizure after a strobe went on.”
Naarden seemed delighted that I’d joined the conversation and grew more animated. “That happens to some people with epilepsy. Now, the mistake they made with having slaves look at the potter’s wheel is that not everyone with seizures has that problem, and it had to be spinning at a particular speed.”
How did they get the wheel to flash? Before I could ask the question, Naarden moved on.
“In fact, in southern France, there was a road where a pattern emerged of some people with seizure disorders having seizures as they rode through on horseback. There had been some trees planted along the side of the road about equidistant from each other, and they thought that might be the problem. They decided to test it and tried to induce a seizure by having those people ride down the road in a carriage with a fast horse, but nothing happened. Then some smart fellow suggested maybe the sun had to be low on the horizon. At that point, the sun would be behind the trees, and when you rode past them quickly, the light from the sun strobed. That’s what caused the seizures.”
I wasn’t slouching anymore. I had arrived in Naarden’s office committed to showing contempt through my tone of voice and body language, but now I sat up straight, captivated. Epilepsy was fascinating.
I recognized my guard was down. “None of that has anything to do with me,” I fumed. “One of my neurologists told me I’m not a textbook case. I’m crazy.”
Naarden smiled. “There are no textbook cases with epilepsy. Anyone who said that didn’t know what they were talking about. One of my patients’ recurrent seizures presented as seeing Abraham Lincoln in a closed convertible with his head sticking through the roof. That sounds ridiculous, and it certainly could lead to misinterpretation by a doctor. But when she s
aw that image during an EEG, it revealed the seizure.”
“Yeah, but an EEG never detected my seizures.”
“An EEG only measures a small amount of brain activity. It’s a diagnostic tool. Plenty of people with epilepsy have either nonspecific or normal EEGs.”
I swallowed. I wanted to cry. I wanted him to tell me I was mentally ill. That would be easier. Then I remembered.
“At Northwestern they gave me an EEG with nasopharyngeals. They slid those electrodes up my nose and still didn’t find anything.”
He sat back down. “Let me ask you some questions. Were you on your medication when they performed that EEG?”
“Yes.”
“And what is the medication supposed to do?”
He’s enjoying this, I thought.
“Stop the seizures,” I said.
“So why would anybody check for seizure activity while using medication to stop seizure activity? Also, were you well rested? Did they keep you from sleeping before the test?”
“No, I slept a lot beforehand. But they wanted me to sleep during the test.”
“So, how did you manage to sleep during the test when you were already well rested?”
“They gave me a sedative.”
“You mean the type of drug that is used to stop seizures?”
It seemed as if the floor had dropped out from under me. “Wait, what?”
Naarden leaned forward. “Sedatives are often used to stop seizures. Your phenobarbital is a sedative. IV Valium can be used to stop a seizure as it’s happening. It has sedative effects. If they used a sedative on you before the EEG, they were making it less likely that seizure activity would be detected.”
I couldn’t speak. I was told I was crazy because I let my hospital roommate’s wife use my closet, because some nurse didn’t report that she found me on the floor, because the neurologist didn’t speak to my mother, and now also because an EEG didn’t detect seizure activity when I was on drugs to stop seizure activity. Had no one given thought to what they were doing?
For a second, I considered asking why Strauss kept me on anticonvulsants while also insisting I didn’t have convulsions, but I decided not to interrupt. Everything Naarden was telling me was amazing.
In a moment, we were off to the exam room, where Naarden conducted another neurological test—“push my hands; squeeze my fingers”. He asked me to touch each finger on my left hand to my thumb rapidly. He pointed out that my right hand was mimicking my left, making the same movements. He told me to keep my right fingers still, and I repeated the movement on my left hand with much more difficulty. Minutes later, we were back in his office.
“Based on your history, I believe you’re experiencing partial complex and generalized seizures with the focus seemingly in the temporal lobe,” he said.
“The focus?” Another word I had never heard from a neurologist.
“The part of your brain where the seizure originates. Or there could be projections from other parts of the brain to that area.”
Sensing my bewilderment, Naarden launched into a lecture about how even a small number of “bad” neurons could fire, triggering an electrical storm across the brain. I had heard so much at that point I could scarcely take it all in.
“I want to put you in the hospital for a full workup,” he said. “Then after I’ve finished, I’ll get you on a proper regimen of anticonvulsants.”
I smirked. I knew what he was about to say. Every neurologist used the same words. I decided to beat him to the punch. “And then the seizures will stop, right?”
Naarden’s smile faded. “Kurt,” he replied, “I don’t know. I can’t know. A great doctor once said, ‘When we understand seizures, we will understand the human brain.’ We do not as yet understand the human brain.”
His voice softened. “If the anticonvulsants don’t work for you, I’ll try again. I will keep trying to get the best seizure control for you possible, with the lowest level of side effects. I can’t tell you now what that means or how long it will take. But I won’t quit on you.”
As Naarden spoke, I blinked away tears. For the first time, a doctor was admitting the truth about the elegant complexities of the brain, showing humility before this beautiful and incomprehensible collection of cells that determines personality, intelligence, emotions, and abilities. He was admitting, finally, that there weren’t always simple answers, that choosing medication was trial and error and that this amazing organ guiding our central nervous system required respect and awe before treating problems with its functioning.
“If I’m going to help you,” he concluded, “you have to let me put you in the hospital. That will be our next step.”
I pursed my lips, then wiped my eyes. “Okay,” I said. “I’ll go.”
An audio diary from
ELVA EICHENWALD, 1982
Dr. Naarden said he wanted to get a sleep-deprived EEG and wanted to cut back on Kurt’s phenobarbital in the days before that to increase the chance of finding something. Heinz was very angry that he was cutting back on the medication, which wasn’t doing anything anyway. Kurt had a seizure on a night his brother, Eric, was home, and it was the first seizure he had seen, and, bless his heart, he cried. Heinz again blasted the neurologist for taking Kurt off the medication and blasted me for something, I don’t remember what.
CHAPTER THIRTEEN
In the third week of August 1981, Naarden admitted me to Medical City, and I sneered as soon as I walked into my room. Despite years of disastrous experiences at academic hospitals, I reacted with long-ingrained disdain toward the trappings of for-profit hospitals. Lots of closet space, bright lights, window with a view, no roommate—this was more like a hotel than the cramped, hastily cleaned hospitals I had seen. They even spent money on wallpaper. Wallpaper! What kind of hospital needed wallpaper?
Glancing outside, I saw a strip mall nearby with a hole-in-the-wall eatery called The Feed Bag, which served up big, greasy hamburgers. A month earlier, just thinking about that kind of food would have nauseated me. Now I craved one of those juicy delights and a pile of french fries.
I heard my mother arrive. “Hey, Mom, can you go to The Feed Bag and get me a burger and fries?” I asked.
She laughed. “It’s nine in the morning. I doubt they’re open.”
Hopes crushed. “Oh yeah.”
“I’ll get you some later today.”
The moment meant nothing to me, but it gave her an enormous lift. Since returning from Chicago, I had pushed food around on my plate at every meal, barely taking a bite. This was the first time she had heard me express an appetite in a long while.
A nurse appeared with a hospital gown, and I took it into the bathroom to change. I had brought a blue robe with me and slipped it on. Afterward, I folded my shirt and pants, then rolled my white socks together. I piled my clothes with my shoes on top, left the bathroom, and put them in the closet. My mother had unpacked the rest of my items, and I inspected them. Everything looked orderly and in place. Any psychologist who again wondered where I put my clothes might conclude I was a neat freak instead of someone suffering from “emotional disorganization.” And I would not share this closet with anyone, even family. No way I’d allow courtesy to be used as proof of mental illness again.
I was lying on my bed when Naarden dropped by. I sat up, legs dangling over the side, as we chatted. He told me to uncross my feet, and I did. Our conversation continued, and he told me to uncross my feet again. A minute later, again. Why did I keep doing that? Was it seizure related? I didn’t ask.
He performed a neurological test. He scraped a blunt metal instrument along the bottom of each foot; my toes bent downward. This was a normal reflex, he told me, like when a leg kicks out after a doctor hits a knee-joint ligament with a rubber hammer.
Then he told me the plan. My hematologist was Dr. Charles White, and he wou
ld monitor my bone marrow recovery with frequent blood tests. They would conduct an EEG, as well as a CAT scan. Afterward, a Holter monitor would be attached to me.
“It’s an ambulatory EKG,” he explained. “It’s about the size of a portable cassette player, and it will stay on for at least twenty-four hours so we can measure heart rhythms.”
Fear struck. “Did you find something wrong with my heart?”
“No, no,” Naarden replied. “Everyone has assumed the drop attacks are seizures. The monitor may help us eliminate the possibility of irregular heart rhythms causing them. If there is a problem, it’s certainly something we want to know right away.”
Right away. My drop attacks had started, what, half a year ago? No doctor had ever thought to check my heart. Now that Naarden mentioned the possible relationship between sudden falls and heart issues, I marveled that everyone else had failed to conduct an EKG. How could they have overlooked something so obvious?
“Also,” Naarden continued. “You’re going to be kept awake all night.”
For days, Naarden had been slowly cutting back my phenobarbital. Now he wanted me to have no sleep? “Why?”
“You’re going to have another EEG tomorrow. Remember, we want to increase the chance of recording seizure activity, so you shouldn’t be medicated or rested. Also, we’ll be using sphenoidal leads. Those are electrodes injected through the opening in the temporomandibular joints, which connect your jawbone to the skull. Instead of just getting an EEG reading from the top of the skull, we’re recording from a different place and getting a better reading from the temporal lobe.”
For a moment, I thought about how the coat hangers—the nasopharyngeals—slid up my nose and where those electrodes must have ended up. It seemed like the same place.
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