Life was wonderful. I was busy, making friends, taking on new challenges, out and about on campus. My fears and hopelessness were gone.
* * *
—
Befuddled as usual, I watched as my statistics professor, Rob Hollister, scribbled symbols on the blackboard. I knew I must be looking at numbers and letters, but they may as well have been Chinese characters. I had never experienced anything like this.
I was doing well in my public policy course; my professor, Richard Rubin, often thanked me for my contributions to class discussion. But statistics was a disaster. Equations in the textbook were a muddle, and so were the hieroglyphics on the blackboard. I was glad there had been no homework, quizzes, or exams yet. I kept hoping I would find some secret to crack the riddle of these symbols.
Hollister printed something on the board that he had written many times before:
E = 0.
For me, it may as well have been .
He turned to the class and, for the first time, spoke the equation out loud: “So the error is equal to zero.”
Just like that, it seemed as if the computing part of my mind entered hyperspace. His utterance made perfect sense, I comprehended why the formula was important, and a bit of the nonsense on the blackboard transformed into knowledge.
What the hell was that?
I walked back to my dorm, my mind spinning in wonderment as the answer came to me: My brain couldn’t translate written symbols but understood them if said out loud. What else could explain my sudden grasp of a range of statistical concepts after hearing the spoken definition of a single equation?
Naarden had told me to call whenever something odd turned up. But this. This was too weird. I knew what was coming if I phoned him—a dismissive chuckle, an assurance that I was imagining things, or maybe the old refrain “I’ve never heard of that as a side effect of the medication.”
I fretted for an hour over whether to contact him. What if he decided I was mentally ill and took me off the Dilantin? But I had promised not to keep secrets. Finally, I walked down the hallway to the pay phone and dialed his office. Someone placed me on hold, and he quickly picked up.
“Kurt, how are you doing?” he asked.
“Fine,” I said hesitantly. “The seizures are still a lot less. But there’s something else really weird going on—”
Naarden interrupted. “Is it math?”
* * *
—
A few days later, I visited Hollister’s office. I never discovered how Naarden guessed my problem, but he told me that either seizures or the anticonvulsants might be interfering with my brain’s ability to translate symbols and perform mathematical tasks. When I explained that I could understand if someone spoke the words each symbol represented, he suggested I contact my professor to discuss options to address the problem.
I worried about what Hollister might think. He had probably heard every excuse from students struggling with their work. This one was a doozy: I can’t recognize symbols that any first grader could understand. I was sure the meeting would be a disaster.
Instead, about a minute into my explanation, Hollister’s eyes lit up. “I know about this!” he said excitedly. “My wife is conducting research on it. It’s really fascinating.”
I blinked. Every day was new proof that telling the truth was the best approach.
“You know,” Hollister said, “she’s looking for subjects for her research. Would you be willing to participate?”
“I don’t think so. I’ve been through so many medical tests in the past two years. I don’t want more.”
Hollister understood, then shifted his attention to designing a plan to help me. He asked if I could copy symbols on the board into my notebook even if I didn’t understand them. I believed I could. Then, he advised, I should take notes, and he would ask an honors student to recite them to me, since I could understand their meaning if I heard them. He also said he would assign this tutor to read me textbook assignments and answer my questions. I was overwhelmed; in minutes, Hollister had come up with a possible solution.
For the next few weeks, Hollister’s student met with me frequently. I asked scores of questions, drilling down to the most basic elements of the math. At one point, I apologized, saying he must be frustrated having to explain statistical fundamentals that most people probably comprehended with ease.
“This is great for me,” he replied. “You’re forcing me to learn the math at the foundation of things I’ve always just assumed without knowing why they were true. Teaching you is giving me a much deeper understanding of statistics.”
Meanwhile, Hollister kept an eye on me in class. I frequently became lost trying to follow meaningless symbols and looked up from my notebook. When he noticed a confused expression on my face, he recited whatever formula was on the board. That often solved the problem, and I would give him a nod.
* * *
—
After sliding a thin needle into a vein in my right arm, Swarthmore’s part-time doctor filled test tubes with my blood. I had grown to trust Millington, something of a surprise since by then I considered most doctors to be potential threats. We chatted frequently, and Millington often urged me to return to Dallas until my seizures were controlled.
“There’s no point,” I said. “Medications are supposed to be adjusted slowly. Naarden isn’t going to do anything until at least November. If I go, I’ll just be sitting around with nothing to do.”
Besides, I said, what if I never got better? There was an important emotional component—quitting college would be easy; returning would be daunting if my health didn’t improve, and there was no guarantee it ever would. Plus, I couldn’t release the psychological mooring I had created: I would graduate with my class.
Millington listened with respect but didn’t buy my argument. Taking time away from school, he said, would be best.
* * *
—
Magill Walk cuts through the center of the Swarthmore campus, leading from the administration building to the commuter rail stop. Smaller sidewalks cross at two points, sloping down to the path, then rising up on the other side.
On a cold night in October, I walked alone across campus toward Magill Walk, my hands shoved deep in the double-stitched pockets of my zipped corduroy jacket. At the slope, I fell into convulsions. Perhaps because of the angle, I dropped face-first into a bed of gravel. I don’t know who showed up first, but soon I was surrounded by Swarthmore security and classmates.
Security officers held back the knot of students as I convulsed, my face grinding against pebbles and dirt. A friend who had been instructed on what to do during a seizure screamed at the officers to flip me over; cuts from the gravel dotted the ground with blood. But the security team ordered my friend to back off, saying I had instructed them not to touch me during a seizure. Unfortunately, I had not informed them they should ignore that rule if I was tearing up my face.
Carl and another student stumbled on the scene after the convulsions stopped but before I woke up. My jacket had torn. Multiple high-beam lights were pointed directly at me from the security vehicles. Carl knew that would cause an intense headache when I opened my eyes.
“You need to shut off those lights,” he said as he kneeled down to check on me.
“Stay away from him!” a security guard snapped.
“I’m his roommate,” Carl replied. “I need to talk to him when he wakes up, to let him know what’s happening. Otherwise he’ll panic. And he can’t handle lights like that after a seizure.”
The security team would have none of it. They ordered Carl to leave me alone, then phoned for an ambulance despite his protests that none was necessary. The ambulance arrived; Carl and the other student hopped in to accompany me to Crozer-Chester Medical Center. With no other intervention necessary, the emergency room doctors helped me out of my ruin
ed jacket and left me slumbering on a gurney. After I awoke and recovered, the doctors released me from the hospital. Carl and the other classmate took me back to school and put me to bed. Large hospital bills had been racked up for nothing.
* * *
—
Two days after the Magill Walk seizure, I was back at the security department. “I want to start by assuring you I’m not mad,” I said. “My original instructions obviously weren’t clear. But I can’t prepare you for every possibility.”
I pointed at the cuts and scrapes on my face. “This is what happens when you don’t use common sense. These injuries came because I had a seizure facedown in gravel. I know there was at least one friend there who wanted to flip me over, but one of you said not to because I wasn’t supposed to be touched.”
Many of the expressions staring back at me showed annoyance. “If I fall into a fire, pull me out,” I continued. “If I’m banging my head on a step, put something under it or move me. If I look okay, and I’m faceup, you still should put something under my head. Don’t think I’m not getting injured just because I’m not screaming. If I’m doing something that you can’t get down on the ground and do with me without hurting yourself, assume I’m getting hurt, and stop it if you can.”
I glanced around the room. Some of these men clearly did not like being lectured by a student. I needed to soften my tone. “But I want you to know I appreciate what you’ve done for me. You guys have made it so that I’m able to walk this campus. You have no idea what a gift that is. Even if mistakes happen, it’s okay. I doubt there will be many times I have seizures when I’m outside by myself, so this isn’t going to be a regular thing.”
I shook some hands and left. A couple of months earlier, I would have cowered at their angry faces. But now it was okay. The administration had my back. So did the health center. So did my friends.
I was tempted every day to telephone Nicholson, my first neurologist, and scream at him for how wrong he had been. He had caused so much damage by warning me to keep my epilepsy secret. Because of his errors or paranoia, I had hidden for nothing. Everyone knew the truth, and no one was pushing me away.
* * *
—
The next night, Janet Dickerson, Swarthmore’s dean, telephoned my brother in Cambridge, where he was attending Harvard Medical School. Eric was surprised. Why would the new dean from his old college be phoning?
“I’m calling about Kurt,” Dickerson said. “We’re sending him home. He’s too sick to stay. We’re not prepared to handle this.”
* I have since conducted a computer search of all published studies about sphenoidal leads conducted before 1982. Whitaker appears in none of them.
An audio letter from
FRANZ PAASCHE, 1986
The seizure you had on [Magill Walk] was very traumatic for me. I felt very guilty that I was focused on my own life and I wasn’t always available.
The whole experience of going through this with you for me—in the back of my mind or in my heart, I felt like in some ways I was in judgment, like this was a test of whether or not I was a good person, whether I could be sensitive enough to make things as good as I could. I really felt like I was being tested in some weird way; I don’t know if it’s religious or whether it’s personal. I judged myself against the standard of what I thought was what you needed from me. So when I couldn’t provide what I thought you needed, I really felt like I wasn’t being a good person.
Being able to respond to what needed to be done became a kind of measuring rod of myself, of my moral worth. And I’m serious about this, it’s true. I’ve thought about this a lot. And it’s kind of odd, but I think that you may not have realized how deep an impact what you were going through had on the people who are close to you. And this is one way that was subtle but something you probably wouldn’t have sensed.
In a conversation with
CARL MOOR, 1986
KURT: I want to ask about our friendship after the summer in Chicago.
CARL: Damn, Kurt. It’s never recovered. [laughter]
KURT: No, no, no. Come on. Be serious.
CARL: I was miserable junior year. We weren’t getting along. It had been too intense. I was tired of it. I felt guilty for feeling tired of it. But I think there’s a lot more to it than just seizures. A lot has to do with the fact that we were very good friends, and we spent a whole summer together, working together, living together. In any situation, people spending that much time together would get on each other’s nerves. There’s something very universal and there’s something very situation-specific about the whole thing. So the blowup had a lot to do with the whole seizure thing, the whole summer, but it didn’t have everything to do with it. I would say sixty/forty. Sixty percent the intensity of the health issues, forty percent just normal friend tension caused by spending too much time together.
CHAPTER SIXTEEN
Eric called our parents to tell them Swarthmore was kicking me out. The news, coming six weeks after I had stopped hiding my epilepsy, set off a flurry of phone calls to administrators demanding an explanation. Why now? Why no warning? And why deliver the decision to my twenty-three-year-old brother rather than to my parents?
Their explanation was beyond belief. The administration had decided Naarden was incompetent and the diagnosis of epilepsy was wrong. They said Swarthmore’s psychologist, Leighton Whitaker, had determined I had a brain tumor based on the way I talked.* The growth had been missed, Whitaker told them, because Naarden failed to conduct a particular type of brain scan and the Halstead-Reitan Neuropsychological Battery. These were the tests the psychologist had asked about at our first meeting.
Dickerson told my mother that, in addition to the concern about a tumor, she and a dean’s committee had concluded I was too sick to attend school. At the meeting, the security chief complained that his officers, who had dealt with one seizure in six weeks, were spending “an inordinate amount of time with a single student.” The health center director also protested that her team believed they had insufficient training to assist me after a seizure. The committee had concluded, Dickerson said, that the best solution was for me to go home, continue my treatment, and hopefully return when I was healthy.
At the end of that call, my mother flipped through her address book and found the number of the Dallas Epilepsy Association. She had kept in touch with the counselor we had met there years before and hoped he could help.
The moment the counselor picked up the phone, she identified herself and blurted out, “Swarthmore is throwing Kurt out of school!”
“What?” the counselor asked. “Why?”
“Some psychologist there told them he has a brain tumor.”
“Why does he think that?”
My mother could barely get the words out. “Because of how he talks.”
“How does he talk?”
“I spoke to him last night! The same as always!”
She rattled off the other reasons: The psychologist decided I needed more diagnostic tests. Security didn’t want to deal with me. The health center nurses were scared of me. The bottom line was the school wanted me gone.
“That’s illegal,” the counselor sputtered. If Swarthmore received federal money—and it almost certainly did—they were violating Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination against people with disabilities. I was free to leave school if I chose, but they couldn’t force me out.
“What do we do?” my mother asked.
“First, don’t tell Kurt. This can probably be straightened out without scaring him. The last thing we want is for him to think he has to go back into hiding.”
My mother cried. If the school forced me to leave, she knew I would view it as proof Nicholson had been right—that to protect myself, I needed to return to keeping secrets.
“Listen, Elva,” the cou
nselor said, “I know lawyers who handle discrimination cases. I’ll find someone to take this. But contact Dr. Naarden, and let him know what’s happening.”
* * *
—
The counselor recruited a lawyer named E. Brice Cunningham to take me as a client. He was my first attorney ever, and I didn’t even know that he represented me. Cunningham instructed my mother to ask Naarden to send Swarthmore a letter about Whitaker’s brain tumor claim and attesting to whether he believed I should stay in school. There might also come a time when Naarden would need to testify in court, and Cunningham suggested she ask if he would do so.
The next morning, October 23, 1981, she met with Naarden at Medical City and described what was happening. When she mentioned the psychologist had diagnosed a brain tumor, Naarden reacted with a start.
“A brain tumor? Based on what?”
“The way he talks.”
“How is he talking?”
“The same as always!”
He was more bowled over when my mother recounted the psychologist’s claim that the tumor had been missed because no one performed a neuropsychological test battery.
“This is why psychologists shouldn’t pretend to practice medicine,” Naarden replied.
The dean had made a lot of very disturbing comments about the magnitude of my health problems, my mother said, and how ill-equipped Swarthmore was to handle the situation.
Naarden stewed in anger. “What do you need from me?” he asked.
“We have a lawyer. He says you need to send a letter about the brain tumor claim. Also, if you think Kurt should stay in school, it would help if you said so.”
A Mind Unraveled Page 19
