I was stunned and asked how that was possible. There was no single answer, she said; an accumulation of things I had said and done over the years led to her recognition that, despite everything else I revealed, I was still holding back on something deeply traumatic. With an irrational and overwhelming sense of guilt, I asked what she thought of me. She replied that she felt nothing but pride, both because I had not allowed the rape to cripple me and because I had finally found the courage to tell her.
* * *
—
As life eased, I came to accept that my memory problems were worse than I had allowed myself to believe. I had known for years that I forgot names as well as events of little consequence. Long before, I developed compensation techniques for work to hide this part of my condition, especially from my bosses, who I feared might limit my assignments if they knew the truth. So, for work, I maintained extensive records, audiotaping or keeping notes on every conversation, whether with a source or an editor. I discovered writing notes by hand was nearly impossible; when I tried to focus on keeping the words legible and listening at the same time, I could not recall the second half of someone’s statement after writing down the first. Typing interviews solved that problem—my hands hit the proper keys without my thinking. Sometimes compensating proved costly. Covering trials required handwritten notes, since reporters were forbidden from using tape recorders or computers. To get around the problem, I would ask court reporters if I could purchase a rough transcript the same afternoon as a hearing. I usually paid for those records myself to avoid questions from the paper about why I spent the money instead of just writing down testimony.
When I signed my first book contract in 1993, I recognized my memory problems might prevent me from keeping track of the volumes of documents and interviews such projects required. To compensate, I relied on intense organization. I adopted the narrative nonfiction style for my books, using time sequence as the basis for categorizing my reporting. My assistants transcribed interviews and sorted thousands of records by date. All of the documents, including interview transcripts, were placed in binders, color-coded, and labeled to identify the types of information they contained. Then we reviewed every piece of paper, scouring transcripts and documents for events and entering them into a massive time line. Each entry cited where I could find the information using coded identifiers. Running hundreds of pages, the chronologies served not only as virtual outlines of each book but also as an artificial memory so I would never overlook information I had obtained.
I no longer kept such records in my personal life, and as my children grew, the severity of my memory impairment became apparent. While in the car one day, I suddenly felt regret for never having fished with the boys, a typical son-dad experience. Maybe they would have enjoyed the experience or just spending time with their dad.
“Guys, I’ve been thinking,” I said. “I owe you all an apology. I’ve never taken you fishing. I think that would have been fun. I’m really sorry. Maybe we can go soon?”
The boys were silent for a moment. “Dad,” Ryan said, “you took me fishing.”
“Me too,” Sam said.
“You’ve taken all of us fishing,” Adam said.
I felt certain they were mistaken. “No,” I said as we pulled up to our house. “I never took you fishing.”
Everyone climbed out of the car. Adam walked to a corner of the garage and called me over. “Look at this,” he said, pointing at shelves against the wall.
I stared in disbelief. Four fishing poles and tackle boxes. I opened one and saw lures, line, weights, and bobbers. They were dirty, and the box smelled like it had been used many times.
“You took each of us fishing,” Adam said. “That’s why these are here.”
I still remember nothing about these trips. Later, I looked at photographs and found an image of the boys peering out of an icehouse. I tried to recollect where this had been; no luck. Theresa told me the photo was from our vacation to Lake Louise in Canada. Not only had I been there, but I took the picture. The memory either hadn’t been stored in my brain or could not be retrieved.
The dam of truth opened. Theresa told me I forgot far more than I realized. She would tell me a story, and a week later I would remember nothing about it. I could watch the same television show repeatedly, not knowing I had seen it before.
I reverted to old habits and tried to push the problem aside. Instead, it loomed even larger—in 2007, a failure to remember an event in my personal life caused serious problems at work. I was plagued by uncertainty; I wondered, how did experiences unremembered differ from those that never occurred?
Naarden had retired from his practice by then, although he still played a role overseeing research at Medical City. My new neurologist, Dr. Robert Leroy, had—like Naarden and others before him—urged me to switch from Dilantin in hopes of stopping the twitching and barking, but I adamantly refused. Now, distressed by my memory problems, I accompanied Theresa to Naarden’s office.
I told him I wanted to discuss forgetfulness. “If I changed medication, would I recover lost memories?”
Unlikely, he replied. “It might help with your memory going forward,” he said, “but you know that we can’t tell you beforehand what will happen.”
Before I asked the next question, Naarden changed the subject. “I’ve been speaking to Theresa,” he said. “You’re in denial about how bad things are with your seizures.”
I looked at Theresa. “It’s true,” she said. “I’ve been trying to tell you. You’re too afraid to hear it.”
I didn’t understand. I wasn’t having grand mal seizures.
Theresa told me I was wrong. I had experienced a major seizure at home while on the phone with a friend. No one had seen what happened, but the friend called her at the office, saying I had dropped the phone and wasn’t picking up. Theresa telephoned Adam, who was in the house, and he found me on the floor. At fifteen, he already knew how to handle the situation.
“Dilantin is not the best medication for you,” Naarden said. “You need to change.”
From there, Theresa brought me to see Leroy. This, I realized, was a triple tag team—Naarden, Theresa, and Leroy had planned an intervention.
Leroy repeated the message that I was in denial about the poor state of my health and that the time to switch anticonvulsants had long passed. I asked again if changing would help me recover old memories or at least improve my ability to recollect events in the future. He repeated Naarden’s assessment: Possible but unpredictable.
Leroy prescribed Lamictal to replace Dilantin. The switch proved complicated and unpleasant. The shoulder and head movements as well as the barks stopped, replaced by a severe left arm jerk. That spasm was so strong and abrupt that, if I rested my arm on a dining table, I could suddenly knock everything onto the floor. I avoided carrying drinks in my left hand after splashing Theresa when I had a sudden jerk. Worse, I experienced severe tremors and sleepiness. I took Dilantin only before bedtime but Lamictal was three times a day. I carried the medication everywhere but still messed up the schedule. At interviews, I shut off the phone alarms I used to remind me when to take the drug—if the chime sounded at an inconvenient moment, the discussion might be derailed. Afterward, I often forgot to take my medication or to turn the alarms back on.
The tremors were terrible. When I traveled to England to interview a lawyer for one of my books, I could not control my hands well enough to flip over a cassette; I was forced to ask the attorney to manage my tape recorder for me. On my return to the United States, customs officials pulled me out of line and demanded I explain why my hands were quivering so much.
Because I’m a terrorist! I wanted to yell. I was furious at being forced to give details of what was obviously a health problem to strangers, who then compelled me to answer personal questions unrelated to their jobs. This had nothing to do with protecting America—they obvi
ously just wanted to satisfy their curiosity.
Eventually came the day when Theresa and I were sitting on bleachers for the final assembly at St. Mark’s, an annual event attended by students, parents, and faculty. I watched my hands tremble. We were sitting in a spot where, if my left arm jerked, I would not disturb anyone. A terrible thought struck me: I had been in these same stands for the same ceremony a year before, experiencing the same problems. I could not believe how much time had passed, how long I had been dealing with these side effects. When the assembly ended, we went to the car. I remember saying that I couldn’t put up with this anymore, that I would rather be on Dilantin than continue shaking and jerking.
I saw Leroy that week, and he prescribed a new medication, Lamictal XR. This was a long-acting dosage that kept a stable blood level. I would no longer have to remember a three-times-a-day schedule, just once before bedtime. After weeks of dosage adjustment, the trembling stopped, and the violent arm jerks dropped significantly in number and intensity.
The new drug released me from a fog. I realized I had separated myself from my children over the past year, playing less of a role in their lives, because of both my impaired cognition and my concern that the tremors would embarrass them in front of their friends. When I mentioned this, they each scolded me. Anyone troubled by my health, my sons said, was no friend of theirs.
Once my head cleared, I again took up the role of active father. Despite their assurances, I worried about how my recent year of troubles had affected my sons. Were seizures now a source of fear and anxiety for them? Or did they still view epilepsy as just part of my life, part of their lives, something that they could continue to treat as simply an unavoidable bother?
The answer came in 2009. Adam would graduate the following spring, and we were chatting about possible questions he might face in college interviews. We looked online for examples, some of which struck us as juvenile, such as “If you could be any animal, which would it be?” But many related to family life. One of us mentioned there was a chance a question might lead him to discuss my seizures. How would he answer, I asked, if someone inquired about how the family dealt with my epilepsy?
“I’d say, ‘Mostly we just laugh at him,’ ” he replied with a smile.
For minutes, we roared at the joke and teased each other. But his words meant far more to me than a moment of levity. I left his room minutes later secure in the knowledge that my family remained comfortable and calm about my health.
Audio letters from my sons, 2018
RYAN EICHENWALD
I was always really, really proud that I had a dad that had been through hell and spat in its face and said, “Not today.” That had nearly died more than once and had resolved to live as hard as he possibly could. Knowing that I was the product of that is one of the things that I take more pride in than anything else, knowing that you fought your own brain and knowing that you survived all of that, and to a small degree knowing that it was for us.
SAM EICHENWALD
We dealt with Dad’s epilepsy in stride. We got used to it. Sometimes, it got kind of tough, but I personally grew to respect him more because of it, because on a day-to-day basis he had minor things he would struggle with but it really didn’t affect him more than that.
Yes, he has a disability, but I honestly do believe that he used it as fuel to motivate him more to succeed in every aspect of his life. It’s almost weird to say it, but knowing that and knowing how it inspires each and every person in our family, I think having epilepsy might have made him into a better man today than he would have been. He’s faced countless struggles, not simply because of the epilepsy itself but because of people invalidating him and him going out and proving those people wrong. He helped impart the lesson to me of, if you work as hard as possible, then it doesn’t matter who else is in your field, who else has what advantage over you, you can succeed, as long as you work hard. I have been endlessly inspired by this.
ADAM EICHENWALD
Even though you had seizures sometimes, epilepsy didn’t define our lives. It wasn’t really even a part of our lives, but the lessons learned from epilepsy not only drove our family but set me on the path for who I became. You learned life lessons from having epilepsy and then you turned around and instilled them in us.
People shouldn’t have to go through a near-death experience to understand that there are things in life they can control and things they can’t control, that their lives matter, that even when the world’s against you, you don’t stop fighting. It’s hard to remember when you’ve been beaten down over and over again. But you hit back when you’re knocked to the ropes, you’ve got to get up and get back in there. Sometimes you fail, and sometimes you fail over and over again, but you can’t give up. I think that’s the biggest lesson that we learned from you and your past: Once you give up, it’s over. So you can’t give up.
CHAPTER THIRTY
Almost every year, someone from Swarthmore phoned me seeking a donation. And, as I had promised a school administrator just before my graduation, each time I refused. I had committed to deducting ten dollars a year from the college’s debt to my family, the semester’s tuition it kept after throwing me out of school. Perhaps, I often joked, if I lived for the hundreds of years it would take to balance the books, I might start contributing.
While working on one of my books, I received another call from a Swarthmore fundraiser. This time, after I refused to give, she asked why. She seemed to detect that there was more than disinterest in my snub and wanted to know the details.
“I don’t think you want to hear this whole story,” I said.
“No, please,” she replied. “Did something happen to you?”
I paused. This woman was a stranger. My connection to Swarthmore was limited to reunions of Sixteen Feet—the a cappella group still lived on decades after Carl and I founded it. I maintained no other connection to the school. The indignity of my dismissal—being treated as a frightening oddity impeding other students’ education, my disbelief at the falsehoods I had to defeat to gain readmission, my inability to forgive—had warped part of me. My anger lay dormant until someone asked me about the school. Then the memories and rage would flood back.
As a term of readmission, Swarthmore had required me to keep silent about my dismissal and return, so I rarely discussed the ugly details with anyone outside the family, even in my Times magazine article. But what could they do now, take away my diploma? So I spoke. For twenty minutes, I recounted the turmoil and solitude of those terrible months, the times when I thought I would lose my treatment, the fear of choosing between abandoning my school or possibly losing any chance for an education. I knew this woman should return to calling other alums, but for the first time, from a position of strength, I could tell the tale to someone affiliated with the school. I needed to talk.
“Oh my God, I am so sorry,” she said at the end of my monologue.
“Thank you, and I hate to say this, but that doesn’t mean much. The school never apologized. I succeeded in my life when they could have destroyed me out of their fears or stupidity about epilepsy. All of my accomplishments have been despite Swarthmore, not because of it, and until the school acknowledges that what they did was wrong, I want nothing to do with it.”
“I understand,” she said. “But I am sorry that happened.”
* * *
—
Days later, my office phone rang. On the line was Stephen Bayer, Swarthmore’s vice president for development and alumni relations. Apparently, news of my conversation with the fundraiser had reached him, and he hoped I would speak with him.
“Yours is a terrible story,” he said. “I want to assure you, nothing like that would ever happen now. The president personally and Swarthmore as a whole have a strong commitment to providing support to people with disabilities.”
The president. I realized I didn’t know who held the job
. It might still be David Fraser, who took the post in my senior year.
“I’m sorry. I haven’t kept up. Who’s the president?”
“He was a professor, I think, during your time. Al Bloom.”
I couldn’t believe it. “Are you kidding? Al Bloom is president of Swarthmore? He was the most supportive person there when I was dealing with my health problems.”
“That’s good to hear,” Bayer replied.
Al Bloom. My mind reeled. The man whose wife, Peggi, had epilepsy, who met with me at their home when I was a freshman struggling with seizures, who encouraged me to participate in school activities. He was the professor who told me to ignore my grades, advice that helped me graduate with my class. When I fired my first neurologist, I ran to their home in search of support, and they tried to connect me with a new doctor.
Bayer told me that the school was taking my concerns seriously. He and Al Bloom wanted to travel to Dallas for a face-to-face discussion with me about what had happened during my years at Swarthmore.
* * *
—
Theresa and I agreed to meet with Bloom and Bayer for dinner at Mi Piaci, a favorite local restaurant. When they arrived, I gave Bloom a hug. I knew it probably took him by surprise, but my response to seeing him was almost involuntary. His support decades before had set me on a trajectory that allowed me to make my way from freshman year to graduation.
A waiter escorted us to a table where we could see ducks swimming in a pond outside the restaurant’s picture windows. After about ten minutes of preliminary conversation, I thanked Bloom again for everything he had done for me.
“You have no idea how important you and your wife were,” I said. “I seriously don’t know where I would be right now if you hadn’t helped me.”
Bloom seemed to remember little about our encounters. I marveled that people could have such huge impacts on other individuals’ lives, and not even realize what they had done.
A Mind Unraveled Page 39