“It’s like when they said you had a brain tumor,” my father commented casually.
I put down my fork. “What are you talking about?”
“They tried to kick you out earlier in the semester,” he explained. “They said you had an undiagnosed tumor.”
I looked at him, then at my mother. I scarcely knew what to say. “Are you serious? Why am I just finding this out now?”
My mother spoke. “Everything was so frenzied when you got home; we just didn’t want to throw that into the mix too.”
“So how did they decide I had a brain tumor?”
“Dr. Whitaker said so, based on the way you talked.”
The school psychologist? “Are you kidding me? Does Naarden know?”
“Yes,” my mother said. “He was involved in stopping them and telling them it was impossible.”
Stay calm.
“So are you saying that you knew, before they made up these stories about me having a breakdown, that they made up stories about me having a brain tumor?”
Neither answered for a moment. “It was easy to prove the tumor wasn’t real,” my mother said. “But that night in the health center you were so upset, and none of us knew what was true.”
I rubbed my forehead. “Jesus Christ,” I muttered. “They made up something to get rid of me, and it failed. So you believed them when they made up something else? How much time between the two stories?”
Silence again. “A few weeks,” my mother said.
I absorbed this news. “Okay, so here’s reality.” I sighed. “They wanted me out. I don’t know why. Maybe they’re afraid of liability. They made up two stories. Everybody knew the first one was bogus but trusted the second one. So now my treatment is on hold even though all of you knew they lied once before.”
My mother’s words were soft. “Let’s wait to hear what Roskos says.”
I detected hesitation in her voice for the first time since my dismissal. Maybe she was starting to believe me.
* * *
—
I was on the phone with another member of Sixteen Feet, ripping into Whitaker, calling him incompetent, and saying he had been trying to get rid of me all along.
“I think Whitaker’s talented,” he responded. “Apparently he was able to diagnose a brain tumor in a student that all of the doctors missed, just based on how he talked.”
For a moment, I was speechless. “Are you fucking kidding me?” I exploded. “That’s me! Except he’s lying! There’s no fucking brain tumor! That son of a bitch is lying to students to impress them? What kind of ego does that take?”
I remembered. I was on the research team that developed sphenoidal leads. And he had walked out of the health center meeting when my mother contradicted him, choosing instead to lurk in the hallway.
Things started to make sense. If anyone was lying, I felt certain it was Whitaker.
* * *
—
The past summer had been full of great movies. John Landis’s An American Werewolf in London had been released in August, but I missed it because of time spent on my medical care. Landis directed one of my favorite movies—The Blues Brothers—and this new film, a horror comedy, sounded great. I was flipping through the newspaper when I saw American Werewolf was playing at a nearby theater. I begged a friend to take me, and soon we were munching popcorn and drinking Cokes as the picture began.
I watched as two actors playing college students backpacked through England when suddenly a wolf attacks, killing one man and mauling the other. The survivor, David, is taken to the hospital. After his release, a full moon rises, and he falls to the ground, beginning a painful transformation into a werewolf.
A thought popped into my head. I wonder if that’s what I look like during a seizure.
The hospital, the doctors, the loss of control. Everything cut too close. Then came a scene when David wakes up after resuming human form, in a place he doesn’t recognize, with no idea how he got there.
I was David. Michael was the monster. Michael was me. I was the monster.
The film tore at me as the dialogue took on meanings no screenwriter could have intended. I grew increasingly uncomfortable as I watched a scene where David goes to a movie theater. I was in a movie theater. He sits down surrounded by people he killed as a werewolf. Jack, his friend who died in the original attack, is a decaying corpse in a chair near him. The others with him are the undead who cannot rest until David has perished.
“What shall I do?” David asks.
“Suicide,” Jack replies.
One of David’s other victims chimes in. “You must take your own life!”
David asks Jack why he is tormenting him. “Because this must be stopped,” Jack replies.
The suffering faced by the people around him starts to convince David to end his life. “How shall I do it?” he asks. A dead woman suggests sleeping pills, but that method comes with the risk that someone might save David before he died.
“I could hang myself,” David says.
“If you did it wrong, it would be painful,” Jack replies. “You’d choke to death.”
Another corpse breaks in. “So what? Let ’im choke.”
“Do you mind?” Jack replies. “The man’s a friend of mine.”
I stood, spilling my popcorn on the floor as I hurried out. I was the monster. I destroyed friends. Carl was Jack. I destroyed strangers. They all want me gone. Who could blame them?
It took me days to recover from the image of damaged people urging David, the character I associated with myself, to commit suicide. I never saw the end of the movie. I could not bring myself to ever watch it again.
* * *
—
After weeks of reporting, I had gathered hundreds of pages of documents—from the woman at the health department, Balaban, and state and federal agencies. The story was indisputable, the mistreatment worse than I’d heard. The material showed that county officials had lied to government investigators in writing. Balaban had been placed on the defensive, forced to disprove falsehoods. The parallels in our cases did not escape me. While Balaban’s mistreatment was far crueler, it proved that reputable people would fib when they wanted to rid their organization of someone with a disability.
Anger built inside me—not involving shouting or drama, but a commitment to expose people who abused power. From then on, my taped diaries included contemplations on the wrongs that permeate society. I devoured books about injustice and law—A Theory of Justice by John Rawls, Plato’s Republic, and even works of fiction like To Kill a Mockingbird.
I changed. For so much of my life, I’d focused on myself—my challenges, my problems, my desires. Now I saw the shallowness of self-absorption. As I reported the Balaban case while also fighting for myself, I developed a conviction toward championing the powerless. This spawned a contained, controllable rage that has stayed with me ever since. I could direct it, target it at whatever injustice I uncovered. While I have often regretted my inability to overcome this intensity of indignation, it became the foundation of my career as a reporter, driven by an almost unhealthy obsession with exposing the powerful who preyed on the weak.
Balaban was my first war. Once I had gathered the information I needed, my mother brought me to St. Mark’s, where she still worked as the nurse. I lugged my documents to the library, preparing to start typing up my findings there.
On December 8, I finished two memos describing my evidence about Balaban. The first, a narrative of the events, filled 17 single-spaced pages. I attached another 823 pages of proof. The second, titled “Reasons for Investigation,” described the situation’s hopelessness, the need for exposure, and the resonance these revelations could have on society—an appeal for justice that added five thousand words to the tome.
* * *
—
That nig
ht, I presented my memos to the AID directors and answered their questions. I explained that I would circulate the information to any reporter who would speak to me.
After the meeting, Stuart Couch from the county commissioners’ office and Tom Morrison from Health and Human Services asked to speak with me. By then, I knew Couch worked as a counselor and Morrison handled investigations of discrimination against the disabled. I had drawn the broad outlines of my personal situation for them, and they had expressed sympathy.
Couch had told me that he also had epilepsy and went through similar struggles after his first seizure at nineteen, with doctors casting doubt on his condition because of his normal EEGs. They acknowledged their error only when a new test detected seizure activity. For obvious reasons, we bonded over our shared stories.
I sat across from him and Morrison. Couch spoke first. This wasn’t about Balaban.
“Kurt, I’m a counselor. And I can tell you, there is nothing wrong with you psychologically.” He fumed, his voice laced with anger. “Goddamn it, what is wrong with those people? I mean, you have seizures, and you get emotional because of it. If they want someone who’s not going to react like that, they’re going to have to find a dead person with epilepsy.”
I appreciated his support, but I knew no one was going to accept his opinion as definitive. “Thank you,” I said.
Morrison cleared his throat. “In my work, I have seen the types of things Swarthmore did lots of times, involving many schools trying to get rid of disabled students. You need to know, their action was illegal.”
That stunned me. I didn’t know they had broken the law. While the counselor at the Epilepsy Association had told my mother long before, no one had ever informed me.
“It violated Section 504 of the Rehabilitation Act of 1973,” Morrison said. “I work on discrimination cases involving that law.” He leaned in. “I am here to help, any way I can. And if you want to file for a federal investigation of Swarthmore, tell me, and I’ll reach out to someone to get the paper work ready.”
I thanked them and agreed to consider bringing in the government. That was not a decision to be made lightly.
When I arrived home, I found mail from West Virginia University College of Law waiting for me on the kitchen table. I tore open the yellow envelope and found a letter from a law professor inside. She wrote that she had heard about what Swarthmore had done and explained how their actions violated Section 504. I had never heard of this law before, but now I had received lessons about it twice in one day. She offered to represent me for free if I sued the school.
* * *
—
Back at Swarthmore, Carl and Franz were worried. For years, my choices had put them under incredible pressure. While I had finally ended the secrecy, now I was blaming that decision for my getting thrown out of school. With me at home, the rest of the semester had been one of the calmest periods for them in a long time. If I returned and again started trying to hide the state of my health, the responsibility would fall on them. They worried about our friendship, they worried about their ability to hold up if the chaos returned. The two of them sat down to discuss what to do. Carl was particularly frightened.
In 1986, Franz spoke with me about that moment and the anguish both of them felt. “Carl and I were really scared that the friendships were really in danger, because we were feeling so conflicted about everything,” he said. “We decided that the healthiest thing was to have some distance. And it’s not the type of thing I ever thought I would tell you. But I think it’s something good for you to know.”
* * *
—
“Kurt, I believe you.”
It was two days later, December 10, and I was at my daily appointment with Roskos. I had seen him about twenty times before he finally reached his judgment about my mental health.
I tried to contain my excitement. “So you don’t think I have a psychological problem?”
He chuckled. “You’re a normal neurotic.”
Overwhelmed, I didn’t know what to say.
“But,” he continued, “I can’t help you if you don’t let me talk to anybody. Dr. Naarden is waiting to hear my conclusions. He’s not going to change anything until he does.”
Irrationally, I thought it would be best if Roskos stayed quiet. Maybe I should put up with the seizures in exchange for having someone know I told the truth.
“I’m sure you’re worried this is going to be like Chicago. It’s not. It won’t end up with me saying you have epilepsy and Naarden saying you don’t. That’s never been an issue. You’re past that. But if you want things to get better, you have to give me permission to talk.”
I closed my eyes and thought. “Okay.”
* * *
—
That afternoon, Naarden called me at home.
“I heard from Dr. Roskos,” he said. “He tells me you’ll be fine if I treat you like any other patient. So I want you to come by tomorrow. We’ll need to start the switch from phenobarbital to Mysoline…”
He mentioned something about the drug, but I wasn’t listening. I didn’t care. We were back on the treatment plan, five weeks later than if Swarthmore had never intervened. I had missed the diagnostic tests originally planned for November, and we couldn’t reschedule them before school started. Too bad. I had warned everyone—I wouldn’t miss the second semester to catch up on delays caused by their refusal to believe me.
* * *
—
The fight was over. Dickerson had promised on the night of the dismissal that I could return, and whether she meant it or not, now my doctors were ready to tell Swarthmore there was no medical or psychological reason to keep me out. I knew the college had broken the law. A contact at HHS was ready to do battle. My mother finally revealed she had hired a lawyer, E. Brice Cunningham, when the school tried to get rid of me over the imaginary brain tumor. And then there was the West Virginia law professor.
I spoke with Carl and Franz every so often, occasionally mentioning the coming semester—how I was looking forward to seeing friends, attending classes, directing Pippin. During one call, as I chattered about my return, Franz interrupted.
“Are you sure you’re coming back?” he asked.
“Yeah, absolutely,” I replied. “Why?”
He and Carl had heard from Nancy Orr, the dean of housing, Franz said. From the sound of it, the school was planning to put someone else in my room. These people are so disorganized, I thought. Dickerson had said long ago I could come back. Orr was confused.
“That’s just a mistake,” I said. “I’ll fix it.”
As I hung up, my mother called to me. She was headed to St. Mark’s, which I was still using for work on the Balaban case. I told her that I needed to contact the housing office at school, and she offered to let me phone from her office.
Twenty minutes later, standing next to my mother’s desk as she filled out paper work, I reached Orr. I liked her; she had been helpful over the years and always spoke to me in a friendly manner. I expected this would be quick.
“I heard from Franz that there is some confusion,” I said. “I want you to know, I'm coming back next semester.”
Orr’s voice was cold. “Kurt, I don’t think that’s your decision.”
“Of course it is.”
“No, it’s up to Janet Dickerson and the dean’s committee.”
What? “That’s illegal,” I blurted out. “And that’s completely changing what Dean Dickerson said. She told me it was up to my doctors. She told my brother I could return any time.”
“Look,” Orr said. “Let me get you in contact with Janet.”
Orr placed me on hold, and my mother asked what was happening. I recounted the conversation.
“That’s got to be a mistake,” my mother said.
Minutes ticked by. I asked my mother for a pen and paper;
Morrison from HHS had told me to keep records of my conversations with the school. Now, unexpectedly, what should have been a routine phone call had escalated into something more.
Orr picked up. “Okay, what Janet says…”
I wrote a note to my mother. JD doesn’t have guts to speak to me.
“…is that there’s going to be a dean’s committee meeting and they’ll decide whether you’re coming back.”
“How are they going to do that?”
I wrote down Orr’s answer as she spoke the words. I could sense the fury building in my mother as she read them.
“They’ll make the decision based on what’s in your best interest and in the best interest of the school.”
The call ended, and my mother’s face reddened in anger.
“They’re not letting you back in!”
An audio letter from
MARI COSSABOOM, 1981
A longtime friend
I really understand what’s going on with you and with Swarthmore and how hard this has been for you. You’ve had to fight every step of the way. I know you must be really tired, but you’ve got to keep fighting. If you don’t fight, you’ve lost. If you don’t fight, then you might as well just give up and live in a padded cell.
CHAPTER TWENTY
That night, I paced anxiously in the living room, staring at my feet as I strode past my father’s expensive stereo system. His collection of Asian antiquities—small Buddha statues and hand-carved wooden deities—filled the room, and in some part of my psyche, I wanted to throw one against the wall in anger. Focusing on my Nikes kept that thought at bay.
My father sat in an orange chair and my mother on the couch as they waited for me to speak. I stopped my march.
“I want to sue,” I declared. “Enough people have gotten away with hurting me. I want lawyers to handle this.”
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