Hesitation. “Okay,” Franz answered, sounding tentative.
I closed my eyes. I knew—there would be no letter. Carl and Franz both thought it was good for me to be home; the idea of writing this letter would make them uncomfortable because they didn’t understand what was happening. They couldn’t know circumstances were derailing my medical care, that the switch from phenobarbital to Mysoline scheduled for that month had already been put on hold. Franz and I spoke for a while longer, then I hung up.
This is hopeless. I thought of Arizona again. Run away. Lose the past. Start with a new neurologist who wouldn’t know about Nicholson or Craddock or Strauss or Whitaker or anybody, who wouldn’t know about Swarthmore’s fictitious stories. I wept. It wouldn’t work. I was trapped.
Dr. White, my hematologist, walked into the room. “How are you doing?”
“Awful,” I replied sharply. “You have to listen to me!”
He looked shocked. “What about?”
Again, I recounted the story of how Swarthmore’s fairy tales had come to threaten my medical progress. “I don’t know if it was about liability or if someone was lying to the administration, but now I’m fighting a fiction that is putting my treatment at risk.”
White stayed silent until I finished. “Oh God,” he said.
A flutter of elation rushed through my chest. “Do you believe me?”
“I have no reason not to,” he replied.
I clasped my hands and brought them to my mouth. Perhaps I had found another ally. White accepted my word because he had never heard Swarthmore’s distortions. My story made sense, so long as no one spun yarns I had to disprove.
We spoke for twenty minutes. By the time he left, I felt invigorated and ashamed. I had been weak and begging. No more. I needed to gather my strength.
“Goddamn it, I’ve fought too long,” I grumbled to myself. “I am not going to let you bastards win.”
I glanced out the window. They sucker-punched me, I thought.
“I am going to beat you,” I said.
* * *
—
Each time I tried to explain my fears, no one understood. It seemed simple to me—my hope of gaining control was gone because I couldn’t disprove the claims against me; because of my fears, I raged in shouts and abuse, reinforcing the perception that I was unstable.
Eventually, the chaos and tension overwhelmed my mother. “If you’re so well, why are you yelling?” she said. “Maybe if you controlled yourself and stopped being so angry, it would be easier to believe you!”
She was right. I couldn’t talk about this nightmare and stay calm. My only hope for winning them over was to feign serenity.
A metaphor occurred to me. I understood how to convey the paradox I faced. I would stop talking about me and concoct stories of fictional people to drive home my points. My parents and Jason were in the room. I looked at my mother.
“I want you to imagine two men. One is on fire. The other is a blind man who has never heard of fire but who’s holding a bucket of water. The burning man yells to the blind man, ‘Throw the water on me!’ And the blind man replies, ‘But I’ll get your suit wet.’ The burning man screams, ‘I don’t care; throw the water on me!’ And the blind man says, ‘I don’t think you know what you’re talking about. You don’t want to ruin your suit.’
“So the burning man says, ‘Please throw it! I’m on fire!’ And the blind man replies, ‘What’s fire?’ The burning man screams, terrified of dying as he tries to define fire. And the blind man says, ‘Calm down! I’m not going to do anything so long as you’re so emotional!’ And the burning man tries to be calm but can’t, because he’s terrified, knows he could die, and knows the blind man doesn’t trust him. He shouts and screams, and the blind man repeats that he must calm down. So the burning man is left wondering which will come first: death or the blind man finally listening.”
I glanced around the room. “I’m the burning man. All of you are the blind man. I’m telling you why I’m scared, why I’m emotional. I’m begging you to throw the water. But you’re not hearing what I’m saying.”
My parents both grew extremely upset. “What are you talking about?” my mother said. “That doesn’t make any sense!”
“Yes, it does,” I replied.
Somehow that was the breaking point. Both my mother and father left, emotionally wrung out. Jason walked over to my bed.
“Did that make sense to you?” I asked.
He exhaled a single exasperated breath. “It makes perfect sense.”
“What’s the water?”
“Having everyone stop listening to Swarthmore and just go back to the original plan they had for treating you.”
I nodded. “Yup. That’s it.”
* * *
—
My mother drove me past Medical City down a winding road. About a mile ahead, I saw a high-rise building of dark glass encased in what looked like a concrete helmet open on each side.
I had been released from the hospital a few days earlier. Neither my pleas nor my newfound metaphor tactic succeeded in allaying anyone’s skepticism. My diagnostic tests that had been scheduled for Thanksgiving were canceled, adjustments to my anticonvulsants postponed indefinitely. I accepted that I would have to put up with the seizures as they were, with no hope of improvement, until I convinced more people I was functional.
Jason tried his best to persuade the others I was fine, that everyone was confused by the intensity of the situation, and that I made sense. His opinion was dismissed; by then, my family bought into Swarthmore’s warning that I would manipulate people into believing I was well. Jason, they thought, had been fooled by my tricks.
Naarden had urged me to see a psychiatrist to determine if my anger, desperation, and supposed thinking problems were the result of an underlying mental disorder. He recommended Dr. Richard Roskos, who maintained an office in the helmet building.
I considered Roskos to be my last chance. If I couldn’t convince him that the school was lying, I would run out of options. This, I knew, would be tough: I would be telling a psychiatrist that my college was plotting against me.
Just because I sound paranoid doesn’t mean people aren’t out to get me.
After I spent a few minutes in his waiting room, Roskos appeared and invited me into his office. He was tall, with glasses, an inscrutable face, and a gentle tone. After some preliminary chitchat, he asked why I had come to see him.
“What do you know?” I asked.
“Just that Dr. Naarden referred you to me.”
“You’ve spoken to no one else?”
“No.”
He’s got to already think I’m paranoid. In for a dime…
“When it comes to talking to people, do you have to do what I tell you?” I asked.
“Yes, I’ll do whatever you ask.”
I shifted in my seat. “Okay, here are the rules. If anyone calls you about me, you don’t talk to them. If you bump into someone who wants to tell you something about me, you walk away. You speak to no one about what I tell you, you let no one talk to you about me.”
Roskos nodded. “Fine.”
I launched into my story, starting from my first seizure and continuing to the day I was told my medication changes and diagnostic tests were being postponed.
Shortly after I finished, Roskos glanced at the clock. “We’re out of time for today. When do you want to come back, and how often do you want to see me?”
I prepared to leave. “Five days a week until we get this freaking nightmare straightened out.”
Roskos appeared surprised. “All right,” he said. “Let’s get you a regular daily appointment, starting tomorrow.”
An audio diary from
ELVA EICHENWALD, 1982
In the weeks after he was thrown out of school, emotionally h
e was in a very bad place. I had great concern for my son. I thought that he was finally breaking under the strain from all those years of chaos. A human being can take so much before they give up. Emotions are a very funny thing. And I thought that he had reached the breaking point.
I don’t know, Kurt, even if at this listening you would agree with that. But we…the experience of seeing other people who have had breakdowns…He appeared to me to be having a breakdown. I was so frightened. And there is nothing else one can do at that point but to force the individual to get the care that is needed.
CHAPTER NINETEEN
A worker at the United Way handed me a black notebook listing not-for-profit groups in Dallas. With my treatment plan on hold, I had nothing to do after my morning sessions with Roskos. Boredom set in, so I decided to take on volunteer work.
Positions that required driving were out. So was anything involving children or animals; a seizure might hurt them. Then I saw a job title: “media contact.” That sounded perfect. Not only would that kind of volunteer role give me the chance to phone reporters, but it would also burnish my résumé for future job applications in journalism.
But the group’s name gave me pause: the Association for Individuals with Disabilities. If I joined, would my doctors conclude I considered myself disabled, then add that to my psychological profile? I explained my worries to my mother, who agreed not to tell anyone if I worked with AID.
I called the number, and a man named Ovid Neal answered. Five minutes into our talk, he offered me the job. AID directors were meeting that night, he said, and he invited me to attend.
They gathered in a large conference room, and Neal introduced me to the impressive group. There was Stuart Couch, a counselor who worked with the Dallas County commissioners; Tom Morrison, a supervisor for Region 6 of the Department of Health and Human Services; as well as contingents of lawyers, social workers, and other professionals. Many had disabilities, but they had not allowed those to impede their success.
I spent the evening listening until Neal spoke about a discrimination case involving a doctor named Donald Balaban who worked for the county health department. Confined to a wheelchair because of multiple sclerosis, Balaban had been fired three times despite positive employment reviews; each time, state and federal commissions ordered his reinstatement. Following the second dismissal, the department had removed him from his senior post and assigned him to a jail where he was ordered to do nothing. He had no access to a bathroom. His coffee arrived filled with roaches. When he was thirty minutes late, he was fired a third time. Calls to his wife went unanswered, so an official phoned the sheriff; Balaban was carted out, placed in a paddy wagon with no air-conditioning during a heat wave, and driven home.
Not long before, I would have dismissed the story of this man’s abuse as too ridiculous to believe. But after my recent run-ins with Swarthmore, I wasn’t so quick to doubt. Just because people had fancy job titles didn’t mean they weren’t capable of terrible things.
I held up my hand. Someone laughed. “You don’t need to raise your hand. We’re not in school.”
I smiled in embarrassment. “Okay,” I replied. “Listen, I worked with an organization called the Better Government Association in Chicago. They deal with the news media to expose cases like this. One thing I learned from them is, if you want government to act, you need publicity. I could call them and ask them to handle this case.”
After a short discussion, the directors agreed: They would let me consult the BGA on the Balaban case.
* * *
—
The next day, I telephoned John Laing, who ran the BGA internship program, and told him about Balaban. He apologized but said the group couldn’t help.
“We focus on Illinois,” he explained. “We don’t have the staff to conduct an investigation in Texas.”
I thanked him and hung up. I considered the situation for a moment and decided to try another tactic.
The AID directors met the next night to deal with a separate issue. When I showed up uninvited, a few appeared surprised, but everyone was welcoming. After they wrapped up their discussion, I started to raise my hand, then brought it down. I’m not in school.
“I’d like to make a proposal about the Balaban case,” I said. “I called the BGA, and they won’t take a case in Texas. But I have another idea.”
I hesitated, eyeing the group. These people were at least twice my age. I had no idea how they might react to my next words.
“Let me do the investigation,” I said. “The BGA allowed me to handle a case when I was an intern. I know how to do this. Once I’ve finished the work, I’ll find a reporter to write about it.”
Neal was skeptical. “I’ve tried to interest reporters. They don’t do anything.”
“That’s because it sounds unbelievable,” I said. “Asking them to invest time on something just because we say it’s true won’t work. If I do the investigation for them, write the findings, and turn over the documents, no one will turn us away.”
They made another snap decision. “Okay, Kurt,” said Couch. “You do the investigation and try to interest the media.”
After three days as a media contact, I had talked myself into a new job: investigative reporter with an advocacy group for the disabled.
* * *
—
Jackpot!
I located my recording of the Sixteen Feet performance in my sweat shirt, exactly where I left it on the night Swarthmore threw me out. I was into my second week with Roskos and had told him several times about the school’s claim that I imagined cofounding and singing with an a cappella group. When the time came for my morning appointment, I pocketed the cassette and grabbed a portable recorder I’d purchased soon after returning to Dallas for taping my daily diary.
I entered his office bursting with excitement and started speaking before I sat down. “Remember Sixteen Feet? The group that doesn’t exist? The concert that never happened?”
“I know that’s what the school said,” Roskos replied.
I slid the tape into the recorder. “Here’s the imaginary concert. I sing lead on the first song.”
“Blue Moon” filled Roskos’s office. I wondered what the reaction might be in the waiting room to this serenade.
“You’ve got a good voice,” Roskos said.
“Uh…thanks.” Not the point.
The song ended. “Okay, listen!” I said.
Carl’s and my voices played.
“I guess as you’ve gathered by now, we’re the Swarthtones.”
“No!”
“Some disagreement over the name. Okay, we’re Sixteen Feet…”
I clicked off the recorder.
“There! Sixteen Feet! I did cofound the group, and there was a concert a few weeks ago.”
“Well,” Roskos said, “looks like Swarthmore was wrong.”
“They weren’t wrong,” I replied. “They’re making it up.”
* * *
—
I threw myself into investigating the Balaban case, starting by interviewing the doctor and copying all of his records. I called officials at Dallas County Health Department but got the brush-off each time. I realized I was too eager, too pushy. I remembered my telemarketing techniques—establish a relationship, speak slowly, find out the other person’s needs before asking for anything. Why not do the same now?
Five calls later, I reached a department employee who stayed on the line with me. I gave my name and put her at ease with small talk. We discussed her background and her children. After the conversation, I raised the Balaban case. She told me she couldn’t discuss it without risking her job.
I considered her words. She hadn’t said no, she didn’t invoke rules prohibiting disclosure. She was worried about being fired. She wanted to help but was scared. Telemarketing. What did she need? An assura
nce there was nothing to fear.
“I understand,” I said. “I don’t want you to discuss it. But I know there have to be internal documents about this.”
“I can’t give those to you.”
Time for the sales pitch, based on what I had learned about her in the last few minutes.
“Karen, you’ve told me about your work with the church. You care about people. And sometimes when bad things happen, and people are hurt, we have a responsibility to do the right thing, to ignore rules that allow wrongdoing to continue. Do you think anyone would do this to Dr. Balaban unless they thought they could count on those rules to keep it secret?”
She didn’t reply.
“I’ll never reveal how I obtained any records. But if it’s as bad as I think, we can stop this, you and me. If this was my parents or your children, I know we would both be praying that someone would turn over the documents, regardless of the rules. Help me stop it. I promise, no one will ever know you did.”
She said nothing for almost thirty seconds. From my telemarketing days, I knew to stay silent no matter how much time passed.
“Okay,” she replied. “It will take me a day to pull everything together. I can meet you tomorrow after work.”
* * *
—
For dinner, my mother cooked spaghetti, my favorite. Spending days reporting calmed me significantly, as did my daily sessions with Roskos, so mealtime with my parents had become quite enjoyable.
I found I repeated myself a lot, and my behavior that night was no different. As I devoured the food, I told them again about playing the Sixteen Feet tape for Roskos and how he agreed the a cappella group was real. I laughed, saying how bizarre Swarthmore’s argument had been. Eventually, I said, the truth would have come out.
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