The Moors are a loving family, and Carl’s parents, Donell and Lynne, welcomed me with a generosity of spirit that spoke to their character. They joked and laughed in an easygoing style that put me at ease. Donell discussed music and the family, saying that Carl would have been the best piano player among the three Moor sons if he had tried. Lynne showed me a wall lined with picture frames, each holding dozens of family photographs, and told me some of the stories behind them. Later we were in the kitchen when she mentioned my slender build.
“How much do you weigh?” she asked.
“Last I checked, one hundred twenty-five pounds.”
She laughed lovingly. “That’s less than me!”
I couldn’t bring myself to say that four months earlier, I had weighed more than 165 pounds. I had lost about a quarter of my body weight and had no idea why. Craddock’s answer was still the same—“stress.” That simplistic diagnosis seemed more ridiculous to me with each pound that melted away.
Carl told me that his parents knew about my epilepsy, and I worried about what they would think once they saw a seizure. I didn’t have to wait long to find out. Within a week, I fell to the kitchen floor in convulsions. They watched, uncertain what to do, as Carl walked over to me, performed the usual routine—waiting for me to awaken, explaining to me where I was, telling jokes, moving me somewhere to sleep it off—and then returned to his parents. His father looked stunned and dismayed.
“We started talking, and I told him about what had been going on for the last couple of years and how sick you had been,” Carl told me. “It brought tears to his eyes.”
* * *
—
I resisted my mother’s urgings to put myself in the hands of yet another neurologist while I was in Chicago but gave in after she used my own logic against me—I had insisted I wouldn’t come to Dallas because I didn’t want long-distance care. “Well,” she said, “Craddock doesn’t live in Chicago. You’re relying on long-distance care.”
I listened, annoyed. She had been getting more assertive and better at picking apart my rationalizations. Fine, I told her, I would see a Chicago neurologist. I figured the concession would make her happy but have no real bearing on my life. This physician would be involved in my care for only nine weeks; Craddock would still be in charge. I asked my father for a name, and he searched the academic world, locating someone at Northwestern University Medical School. When I called, I realized to my delight that my father had not portrayed my condition as particularly urgent; at first, they said the earliest appointment was four weeks down the road. Then someone canceled and they offered me a consultation in two weeks.
Two weeks. Fourteen days in which the clock on my life was ticking down toward zero. Unknown to me, as I quietly celebrated the short reprieve from visiting a new doctor, several critical body systems were failing. In less than twenty-five days, my death would be almost inevitable.
* * *
—
The Carbide & Carbon Building looms over North Michigan Avenue in Chicago, its thirty-seven floors sheathed in black granite, bronze trim, and a cap of twenty-four-karat gold. In city lore, the dazzling structure, built in 1929, was designed to resemble a massive champagne bottle as an homage to high society. Towering close to the Chicago River, the architectural masterpiece had become a popular site for some of the city’s most prominent companies and organizations, including the Better Government Association.
On June 7, 1981, Carl and I walked through the building’s two-story lobby for the first day of our internships. Soft indirect lighting illuminated the Belgian marble and sumptuous metalwork. As I stared at the art deco engravings on the bronze elevator doors, I wondered how an organization that depended largely on public contributions could afford such luxurious surroundings.
As the elevator whisked us to the seventeenth floor, I could scarcely control my excitement. This was a real office building, with real people in real jobs, the kind of place Nicholson had told me I would never be able to work. Yet even with my seizures still uncontrolled, here I was, ready to take on any assignment.
Arriving at suite 1710, I saw that the elegance downstairs belied the BGA’s no-frills simplicity. Just offices and inexpensive furniture, with paper work piled high on desks. The organization appeared to have spared every expense. Someone ushered us into a conference room where a few other college students waited. We mumbled uncomfortably among ourselves until the arrival of John Laing, the organization’s research coordinator. Laing’s broad smile, friendly demeanor, and obvious respect for the students put us at ease. He reviewed the BGA’s history and described investigations being conducted by the staff. One probe examined suspicious transactions by a Chicago alderman, a second looked into potential corruption involving a no-bid contract to run a music festival, and a third, called the Child Advocacy Project, reported on state foster care and daycare programs.
As Laing spoke, a slender man with a boyish face, sharp blue eyes, and prematurely gray hair stepped into the room. I recognized him as Terry Brunner, the group’s executive director. Laing introduced Brunner, and for a few minutes, he spoke enthusiastically about the BGA and the contributions we could make as interns. His pep talk inspired me—already I was eager to find a phone and start tracking down corruption.
After the meeting, Laing assigned me to work with Linda Lipton, director of the Child Advocacy Project. I sat with her in her office, growing disappointed as she described the job. She had already issued a report, and from what I could tell, her work was winding down. Still, I shook off my doubts after Lipton gave me some assignments.
Later that day, Lipton asked for help. There was information she needed that required placing dozens of phone calls. Somewhere in the country there existed an organization called Quest that provided treatment for young alcohol abusers. The problem: She didn’t know the group’s full name or its location, and there were hundreds of entities with names that began with “Quest.” I needed to call every one of them until I located the teen alcoholism center. The job sounded like it could take forever, but Lipton told me I had to finish in two weeks. This was real reporting, with a real deadline—I’d get right on it, I promised.
Before my first phone call, I thought about the assignment. Today, a Google search would find the information in seconds; without the Internet, the most apparent way to handle the job was to call information in every area code, ask the operator for each organization that included “Quest” as the first word of its name, and then dial all of them to ask about their business. Maybe the job would take forever after all.
Then it struck me. There might be a faster way. New York City was home to more businesses and charitable groups than anywhere in the country; no doubt many large organizations had names starting with “Quest.” Perhaps, I thought, one of them might have leads on other entities with similar names. I dialed information in New York and told the operator I was trying to locate a group named Quest but didn’t know its address. She checked and said there were many places in Manhattan with that name. At my request, she started reading me each address. When she recited a street I recognized, I asked for that company’s phone number; given my unfamiliarity with New York, I figured any name I knew, like Fifth Avenue, must be an important address that attracted large companies. I wrote down the number, then dialed.
A woman answered.
“Hi, I’m calling from Chicago, and I’m trying to find a group called Quest that provides treatment for people with alcohol problems.”
“That’s not us.” She told me her company’s line of work.
“I figured it was unlikely you were the ones,” I said. “But I was wondering, with a name like Quest, you must have a lot of people who call the wrong place.”
She laughed. “Every day.”
“Well, is there any chance someone has been asked about the company I’m looking for?”
A moment’s hesitatio
n. “You know what? Give me a minute.”
She placed me on hold.
Soon after, I heard a click. “Found it,” she said. She told me that a fellow receptionist had started keeping track of places named Quest whenever someone called the wrong number. “She’s very obsessive.”
The woman told me to try a midwestern city with a name I didn’t recognize. I checked with a Chicago operator for the area code of that town, phoned information there, and got the number for Quest. One more call gave me the answer: This Quest, in the middle of nowhere, was the place Lipton wanted to find. I scribbled the details on my notepad, tore off the page, and walked to her office.
“Got it,” I said as I stepped through the doorway.
She looked puzzled. “Got what?”
“Quest. The full name, address, and phone number.”
I handed her the piece of paper with the information. She stared at it in disbelief. “That took five minutes. How did you do that?”
Stifling my excitement, I recounted the story, explaining how I decided that, rather than just dialing phone numbers all over the country, contacting a large company with the same name would give me a better chance of finding the right Quest.
“It worked,” I said. “I was lucky.”
She glanced at the paper. “That’s not luck.”
* * *
—
My success in tracking down Quest brought big rewards. John Laing heard about it and offered to let me expand my responsibilities. I began poring through documents obtained by staff investigators regarding Chicago medical facilities, then came across something odd. A small local hospital had pushed for years to open a rehabilitation unit for teenage alcoholics. The state balked at first but had recently given the program the go-ahead. As I read the regulations, I couldn’t understand why. The hospital’s occupancy rate was too low for expansion; every day, one out of every four beds went unused. Under state rules, hospitals needed an 85 percent occupancy rate before they could expand, and this place didn’t come close. So why add beds if it couldn’t fill the ones it had? I found a filing saying that patients in the alcoholism unit would receive five days of medical care but were required to stay at the hospital for thirty; the kids could have lived at Chicago’s finest hotel for less. Then I noticed the key piece of information: The hospital would accept only teens whose families carried top-notch health insurance. Those policies paid for thirty days of treatment—the amount of time the hospital advised was required for a cure. So a hospital that didn’t have enough patients had opened a unit where teenagers would be forced to remain for a month, all paid by insurance, and the state had approved the plan in violation of regulations. A BGA investigator needed to look into this, I decided.
I brought my findings to Laing, who found my information fascinating. Then he noticed the hospital owner’s name; he was the father-in-law of a BGA investigator. I braced for Laing to tell me to stop reporting.
“Don’t worry,” he said. “That doesn’t matter. Do you want to make this case your primary responsibility?”
Be the lead investigator on my own project? “Shouldn’t it go to one of the staff guys?”
“You found it. Your investigation.”
I beamed. “That would be great.”
Laing spoke to Lipton. I was off the Child Advocacy Project and would instead be probing potential corruption involving a Chicago hospital.
* * *
—
Two days later, I arrived at work limping and looking haggard, my speech slurred. The previous night, I’d suffered major convulsions and injured myself in a fall. I did my best to avoid attention, smiling and waving when someone said hello. Sometime after noon, feeling clearer and in less pain, I joined Carl for a walk to a Michigan Avenue hot dog joint that had become a frequent lunch spot for interns. I made it through the day without attracting much attention.
Even though the seizures kept coming, I managed to avoid my usual fretting. I focused on work and my adventures in Chicago. Carl and I spent time with two of his high school friends, Joe Wein and Tom Eley, feasting on stuffed pizza, visiting comedy clubs, and sneaking off some afternoons to Wrigley Field’s famous left-field bleachers for Cubs games. Carl told them about my seizure disorder, and following his example, they, too, treated it as unimportant.
Occasionally, they joined in trying to make their experiences with my seizures lighthearted events. Once, Joe, Carl, and I went for dinner at R.J. Grunts, a restaurant famous for its hamburgers and shakes. During the meal, I experienced a grand mal seizure. Carl and Joe moved the table to decrease the chance I would injure myself.
“That’s when Joe and I came up with a famous line to tell the waitresses, who were pawing all over us while we were taking care of you: ‘I just don’t want to be alone tonight,’ ” Carl told me. “And Joe decided that being with you during a seizure was the greatest pickup opportunity ever.”
The line never worked, but it did provide opportunities for laughs. I was so happy. I was living a normal life, excelling at a demanding job, and having fun despite frequent and often violent seizures.
I didn’t tell anyone at work about my epilepsy, and it never occurred to me that I should. In my earliest days, I experienced no significant seizures at the office. I knew I was intellectually engaged and focused during work, leading me to wonder if boredom and inattentiveness might trigger convulsions. I also had some illogical thoughts—I pictured Swarthmore as the place where seizures occurred, and so I foolishly assumed I was safer anywhere else. It was wishful thinking, a way of staving off the fear that my investigative project would be taken away if my bosses learned of my epilepsy.
Reality intruded. The BGA sponsored an annual picnic for staff and interns. There was plenty to eat and a big softball game. At the time, I was trying to eat high-calorie, high-sugar food in a fruitless effort to stop my weight loss. For some reason, the smell of grilled meat left me nauseous, so I feasted on chocolate cake and brownies instead.
That’s all I remember. Sometime during the picnic, I collapsed in a convulsion. Years later, a fellow intern told me that she and other students had been terrified as they watched my body clench and contort. Carl took control, telling everyone to stay calm. As I regained consciousness, he explained to me where I was and what had happened. Then he and a BGA investigator named Jack Doppelt helped me back to Carl’s house.
After hours of sleep, I awoke deeply confused. Carl told me that I had convulsed during the BGA picnic. It took me time to understand, because at first, I couldn’t remember the outing at all. Eventually, scattered memories of the picnic returned, and Carl’s explanations got through to me. I was devastated. Until that moment, work had been a source of happiness for me. Now, I feared, it was over.
To my relief, no one from the BGA suggested I quit; they only asked about my well-being. But out of concern, Laing and Doppelt approached Carl. They asked how often the seizures occurred and how long this had been going on. With no secret to keep, Carl told the whole story.
“They couldn’t believe it,” Carl told me years later. “They couldn’t believe that you, that anyone, could put up with all of that.”
* * *
—
Two weeks after arriving in Chicago, I strolled the short distance from the Moors’ house to the Fullerton Station of the “L.” From there I took the Red Line downtown. I hesitated at the bottom of the stairs that led to State Street, waiting to be sure no one followed behind me, a precaution I had adopted when I realized I could kill people if I hit them while plunging down the steps during a drop attack.
As I walked toward Northwestern, I window-shopped, people watched, and lollygagged even though it was almost time for my first appointment with my Chicago neurologist, Dr. Matthew Strauss. I realized I was attempting to sabotage the consultation, dawdling in hopes he might cancel if I showed up late. This is stupid, I thought. I gl
anced again at the slip of paper with his address on it and picked up the pace.
Soon I was in Strauss’s exam room. After some pleasantries, I instructed him on his role. My neurologist was in Pennsylvania, I said. Strauss would be my doctor for only a couple of months, just so there would be someone to write my prescriptions and to be available in case of an emergency. I didn’t want multiple doctors offering different treatment plans. Craddock was in charge; Strauss would answer to him.
I realized my tone had been blunt, almost to the point of disrespectful, but I didn’t care. If I offended him, so what?
Strauss ignored my combativeness. He told me that Craddock had sent my medical records and that he was willing to serve as a short-term stand-in. But, he insisted, he still needed to conduct basic exams. So same old, same old: “Push my hands. Squeeze my fingers. Follow my finger with your eyes…”
He stopped, then brought out a small penlight. “Follow the light with your eyes.”
This is odd. No one had ever conducted the eye test twice. I watched the light until he reached the far side of my visual field; then I looked back at him, assuming we were done.
“No,” he said. “Do it again. Don’t stop looking at the light until I tell you to.”
Once again, I moved my eyes from the far left, struggling not to blink. He held the light there longer than before. Then he moved it to the right. He kept it in place for several seconds at the farthest reaches of my vision.
He slid the penlight into his lab coat, then performed the test again, this time having me watch his finger. I already knew he must have discovered a problem.
“Have you ever been told you have nystagmus?” he asked.
A Mind Unraveled Page 9
