The night at the deputy publisher’s dinner was the first time I saw Theresa’s true character on public display. The gathered reporters peppered Sulzberger with questions about the Times, his plans, and himself. When he learned Theresa was a doctor, he asked about her work. Sulzberger was fascinated by her description of problems caused by new city medical rules and invited her to write a piece for the Times about them.
Eventually, Tamar Lewin, a reporter sitting beside Sulzberger, asked a question. “How does it feel to be in a fishbowl, to know everyone is always watching everything you do?”
“Well,” Sulzberger began, “I really don’t feel like everybody’s watching—”
At that instant, Theresa reached across the table and brushed Sulzberger’s cheek.
“You have food on your face,” she said.
The table went silent. Then Sulzberger and I broke out laughing. There was nothing on his face. Theresa was teasing one of the most powerful men in New York, someone she had just met. This was the woman I knew, one of confidence and daring humor. Serving as each other’s anchor was changing us both.
* * *
—
Later that month, I kneeled in the small kitchen of our one-bedroom apartment, bagging garbage while Theresa washed dishes. Despite the humdrum nature of my chore, I considered staying in that narrow room to be an accomplishment; if I experienced a convulsion there, my head would hit the countertop. But Theresa had helped me set aside some of my worries. Take the chance was her attitude. I needed to walk into narrow rooms. There were too many to avoid them all.
As I tied the bag’s drawstrings, Theresa interrupted my thoughts in the most dramatic way possible.
“So, when are you going to ask me to marry you?”
I looked up from the garbage. Theresa, I knew, was the woman I had envisioned years before when I planned my life at Northwestern. She was, as I had imagined, like the television character Laura Petrie—fun, funny, intelligent, supportive. I had feared my seizures would drive any woman away, but they bothered Theresa only to the extent they bothered me. I hadn’t intended to make any big decisions while struggling with a Hefty bag, but I knew the answer to her question. Life was too short to delay.
“How about now?” I replied. “Want to get married?”
She said yes, and I apologized for not having a ring. After all, I hadn’t expected to be asking that night. The next day, we visited Saks Fifth Avenue to purchase some earrings to commemorate our big day—we wanted to spend more time shopping for an engagement ring.
We planned the wedding for July 1990. For months, I silently pitied myself because my condition would rob me of some traditions. With my sugar restrictions and my knuckles swollen from medication, there would be no wedding cake or ring for me. To surprise me, Theresa quietly solved both problems: She contacted a jeweler, who manufactured a clasped ring, then arranged for the baker to make the top tier of our wedding cake sugar-free. Those were the greatest gifts I could have imagined.
The seizures remained part of our lives, but Theresa handled them with aplomb. Once while she was on call at Beth Israel, a doctor from Roosevelt Hospital phoned her. I had experienced a grand mal seizure on the street, the doctor said, and had been brought to the ER. Someone needed to come for me. Theresa couldn’t leave the hospital, so she contacted Franz.
I awoke in the ER with no memory of what had happened. Whenever I found myself in a hospital alone, I checked my body for clues to where I was when the seizure occurred. I dug into the pocket of my jeans and found a ticket stub. I figured I must have been at a movie or coming home from one when the convulsions struck. But knowing that was no help—I remembered nothing. I read the stub.
Total Recall. The newly released Arnold Schwarzenegger movie. I laughed—I had forgotten Total Recall.
A doctor who looked like Chuck Norris appeared. “What’s so funny?” he asked, sounding amused.
“Nothing,” I said. “Hard to explain.”
Franz showed up soon after. When the doctor stepped away, Franz marveled at how much he looked like a G.I. Joe action figure. I didn’t disagree, but still thought he was more of a Chuck Norris type. Finally, G.I. Norris gave me the all clear, and Franz took me to his apartment. There, I slept off the seizure until Theresa arrived home the next day.
That seizure, which gave me a funny story to tell for decades, was the last one I experienced as a bachelor.
* * *
—
After our marriage, Theresa felt more comfortable bringing up a subject that she knew, for me, was frightening: Should I try a new medical treatment to control my epilepsy? She didn’t understand why I was still experiencing convulsions; she had little training in neurology and believed that, if I received better care, they might stop. By then I was seeing a neurologist in New York, Dr. Aaron Brachfeld, and he was deliberate and methodical, never arguing when I told him I was too frightened to accept his recommendations that I try new medications. Even when he assured me that my severe joint pain could be a side effect of the Mysoline, he accepted my refusal to stop taking the drug.
My stubbornness angered Theresa. I had explained how my past made me resistant to change, but she thought my willingness to tolerate the situation was absurd. She did not want me to suffer from falls and fears out of obstinacy.
One day at Beth Israel, she attended a lecture by a neurologist, Dr. Douglas Pressa. Fascinated by the talk, she decided that he might be the neurologist who could help me. She returned to our apartment and urged me to make an appointment. We bickered until I finally caved, accepting her argument that I had allowed dread to overpower reason.
Knowing I was terrified, Theresa accompanied me to Pressa’s office. I glanced around as we sat in the waiting room. Everyone was thin. Everyone. It was stunning. I wondered about the statistical probability that so many people in one room would appear almost anorexic. My anxiety level climbed.
A nurse summoned me, and I kissed Theresa before heading off. I was escorted to the EEG lab, where electrodes were once again attached to my scalp. I hated the test but felt relieved Pressa had not asked to inject electrodes through my jaw or slide them up my nose.
Once the technician finished, she picked up the fanfold of paper showing the tracings of the electrical firings in my brain. She carried it to Pressa’s exam room as I followed, then laid it down near me.
I waited for several minutes until the door swung open and Pressa zipped in. His energetic demeanor was at once impressive and intimidating. We exchanged greetings. Then he walked to the table holding my EEG tracings. He ran his thumb up the side of the paper, turning pages rapidly as if he were studying an animation in a flip-book.
Is it really that easy to read an EEG? I thought.
He conducted a quick neurological exam—look here; squeeze this; push that.
“Okay,” he said. “We need to change your medication.”
So fast? All Pressa knew about me were vague details from a form I filled out. He had asked me nothing since coming into the room. He needed to slow down, I thought, so he could tell me about his thinking and learn about my background.
“Why do I need to change?” I asked.
“Because you’re still having grand mal seizures. It’s not safe. They have to be stopped.”
I couldn’t argue with that, but I also knew any attempt at achieving better control might fail. And what if new anticonvulsants caused problems that kept me out of work?
“I’m very uncomfortable changing drugs,” I said. “I’ve had so many problems in the past—”
He interrupted. His tone was brusque, almost angry.
“Fine, do nothing,” he said. “Let the seizures keep happening. Let yourself become demented in five years. You can sit in a chair, drooling in a corner, and never be able to hold your own kids. Is that really what you want?”
I felt as if a
spear had pierced my chest. Was that my destiny? Was he lying? Why hasn’t Naarden told me I could become demented?
“That could happen?” I asked.
“It will happen if you insist on doing nothing.”
Confusion and anger overtook me. Craddock, the doctor who overdosed me, had told me everything was fine, and I believed in him. Then the doctor in Chicago exposed that the drugs were killing me. I believed in Naarden, but he had never mentioned my doomed future; Pressa had no reason to lie.
For years, I’d overruled neurologists, following Naarden’s maxim that I was sole arbiter of whether the seizures outweighed side effects from a drug change. I never considered that, by letting seizures continue, I was destroying my brain. How could he not have warned me? I thought.
Resistance fell away. Pressa was my new savior. “So, what should I do?” I asked. “I really need to change medications?”
Absolutely, Pressa replied. “This has to stop.”
I remembered Naarden had once recommended trying Tegretol again. I asked Pressa if that was a good option. No, he said. There was another medication he thought would be best.
“It’s not available in the United States, but it’s quite promising and could be very helpful,” he said.
I was confused. “It’s not available?”
“It hasn’t been approved by the FDA, but it’s showing good results.”
Wait a minute. I knew what this meant from my own reporting about medical research. If the government had not approved this drug, it was experimental. That meant doctors were still testing it to determine if it was safe and effective; only neurologists cleared to conduct the studies could obtain the medication. Pressa had to be one of them. If he wanted me on this anticonvulsant, that meant he hadn't recruited enough patients to participate in the study. I would have to sign a document called an informed consent before he could add me to the pool of test subjects. He did have a motive to lie to me about my future. He needed patients for his research.
I feigned ignorance. “If it’s not approved by the FDA, how can you get it?”
He smiled. “I’m one of the researchers in the clinical trials. So you’re lucky, because there aren’t many doctors who have access to the drug.”
I swallowed my anger and continued to act oblivious. I no longer doubted that Pressa was trying to manipulate me, but I still feared his warnings about my future might be true.
“Does it have side effects?” I asked, knowing the answer was yes. All anticonvulsants did. I wanted to check his honesty.
“Nothing serious has turned up,” he replied. “The most common one we’re seeing is weight loss.”
I thought back to the waiting room. I had marveled at the statistical improbability of so many people in one room being so underweight. This experimental drug caused weight loss.
He’s pushed all of his patients into this clinical trial, I thought. I felt an urge to punch him.
“I’m going to give this some thought,” I said calmly. “I don’t want to make a decision right away.”
“All right. But don’t take too long. There’s a limited number of patients who’ll be allowed into the study.”
I thanked him and strode briskly through the waiting room, desperately wanting out of that office, out of that building, out of that city. I saw Theresa chatting with a woman who appeared younger than me. An astonishingly thin woman.
“Theresa,” I said curtly, “let’s go.”
I didn’t wait for her. I needed to get away. My mind churned. Was I going to become demented? Was it all a lie so Pressa could have his test subjects? Would I never be able to hold my children? Was this experimental drug really my only hope?
I reached the elevator bank and pushed the button. Theresa caught up with me, annoyed that I had rushed off without waiting for her.
“How did it go?” she asked.
I stared up above the elevator door, anxiously waiting for the down light to flash on.
My voice was soft, my tone one of contained fury. “We’re going to Dallas,” I said. “I have to see Naarden right away.”
* * *
—
I waited until we reached our apartment before recounting to Theresa what had happened with Pressa. My emotions were a jumble of anger and fear. I talked about my terror of becoming demented in my thirties, of being too feeble to be a father to our future children. But if it was all a lie, how could Pressa have done it? How could my well-being be less important than his research? Theresa then confirmed my belief—the thin woman I had seen in the waiting room had mentioned her treatment. She was taking the same experimental drug Pressa recommended for me.
I walked into the bathroom and climbed into our empty tub. That was a dangerous place, particularly given that my extreme stress could trigger a seizure. But I needed to feel contained, protected. I sobbed as I talked about my uncertain fate. In my mind’s eye, I pictured my demented self in a chair, head lolling to the side, oblivious to children playing around me.
Theresa didn’t know what to do. She had never seen the psychological collapse I experienced in moments of deep distress. She knew about my run-ins with neurologists, my dismissal from Swarthmore, my beating in Chicago, although I had held back on revealing the rape out of shame and embarrassment. While she felt empathy over these experiences, they were all tales from a far-off past. Now, for the first time, she was witnessing the magnitude of my despair firsthand.
She suffered an upwelling of guilt for having urged me to see Pressa, and she felt responsible for my emotional turmoil. She went into denial herself, pushing away the possibility that her new husband might soon descend into senility. She had been raised to discount severe upheaval, to adopt the cliché “stiff upper lip” of the British. She mentioned our dog.
“The dog?” I shouted. “Are you kidding me? You want to talk about the fucking dog?”
Effusive apologies. She didn’t know what to do, she said. She didn’t know what to say. She began blaming herself for my torment; she should have left things alone. “I didn’t understand,” she said.
“This is not your fault,” I replied, words rushing out amid tears. “You wanted to help. Maybe you did. Maybe I am in danger of becoming demented. We don’t know. That’s why we have to go to Dallas.”
Naarden, whom I had continued to consult and visit for checkups when I was in Dallas, agreed to an urgent appointment. Theresa and I flew to Texas; we both told our bosses we would not be coming to work because of a family emergency. At Naarden’s office, I introduced him to Theresa, then instructed her to stay in the waiting room. I wanted him to hear only from me about Pressa’s prediction. If Naarden confirmed it, I knew I would explode at him for having failed to warn me of the danger.
First, small talk. Naarden congratulated me on my work for The New York Times. I thanked him, then abruptly got to the point. I recounted Pressa’s statement that if the seizures didn’t stop, I would be demented in a few years.
“That is untrue,” Naarden said. “There is no research showing epilepsy leads to early-onset dementia in adults. It’s the other way around. The medical literature does suggest that elderly patients with Alzheimer’s develop seizures. That has nothing to do with you.”
Relief washed over me. “I think that answers my second question, but I need to ask. He said I would be so debilitated if I didn’t stop the seizures that I wouldn’t be able to hold my children, and I would just be drooling in a corner.”
“That’s ridiculous,” Naarden said. “I have many patients who have grand mal seizures and are parents. You have to take some precautions, but there is no reason you can’t be active in your children’s lives.”
Fears gave way, and fury took over. “You want to know why he told me this stuff? He’s running a clinical trial,” I said. “He told me these horrible things would happen to me if I didn’t change medicines and
that I should take the one he’s researching.”
Naarden didn’t look surprised, which unnerved me. He asked if I remembered the name of the medication. I told him.
“This is outrageous,” he fumed. “That’s the problem for some of these doctors who run trials. They become entranced by the research and don’t see the patient.”
He said he wanted to report Pressa to his institutional review board, a hospital organization that supervises medical research to ensure it complies with ethical standards. What Pressa had done, Naarden said, violated those rules. Pressa had used his authority as a doctor in an attempt to manipulate me into signing up as a research subject.
“A person with your history should never be in a drug trial, unless it’s targeted for patients with seizures that have been poorly controlled long-term,” he said. “Particularly if all the standard treatments haven’t been tried.”
I bristled. I knew where this was going. Naarden once again suggested that I should change my medications. Nothing experimental, only well-understood drugs approved by the FDA. I was still taking Mysoline and Dilantin. He advised tapering off the Mysoline, then substituting another drug for the Dilantin. This shift to a new mix would be done slowly, he said. He assured me that he understood why I had refused in the past. But the time had come for me to rely on the best medical knowledge about treatments, he said, and not allow my anxieties to dictate my decisions.
I considered everything that had happened over the last few days: Theresa finding me a new doctor, arguing in an attempt to persuade me to consider treatment options, accompanying me to two appointments. Now the neurologist who saved me was saying I had been foolishly standing still, accepting my convulsions as just part of life, when I might be able to get better. I realized, once again, that I had been selfish. Whether I could deal with the seizures I experienced was no longer the issue. I had yet to include Theresa in the equation. I had no right to complicate her life simply because I was afraid. Plus, the pain in my joints that had been attributed to the Mysoline had been growing steadily worse.
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