The Ghost in My Brain

by Clark Elliott

  Basic two-year-old behavior was not the problem.

  The one area, however, that was beyond Erin’s control, and mine, was her essential biological and cognitive need to talk all the time—which in her case was also idiosyncratically emphasized. Erin was, and is, a bright, inquisitive, engaged girl. She is highly social, and thinking all the time, and it was also her natural toddler disposition that if a thought came into her head it was also coming out of her mouth.

  The verbal style of very young children requires us to use a unique set of resources to process what they are saying. They ask questions and make pronouncements in the middle of other conversations. Their speech is often broken, and slowly formed, with many garden-path sentences that are later backtracked and started again—especially when they are working out complex structures, as bright children are wont to do. It is as though they are thinking out loud, and the sound of their words helps them to form their ideas. For me, following this kind of communication structure was particularly taxing—as we’ve already seen, people’s speaking styles made a big difference in how rapidly I grew fatigued.

  When Erin was talking, I fell into the familiar trap of being unable to filter out the verbal/audio stream coming in through my ears: the sensory input was going to be presented to my brain whether I wanted it to be or not, and I would automatically attempt to turn her words into symbolic meaning. Always. It was a process beyond my control. I would then fall prey to another familiar problem: having to perform two tasks at once—in this case, making sense of what Erin was saying, and trying to do virtually anything else. In a disastrous spiral I would fall farther and farther behind as I tried to turn her constant stream of words into meaning, and also go about the rest of my life.

  Here is a diary entry giving an example of Erin’s speech that I was parsing throughout the day:

  “Dad . . . why do spiders like to bite people? Do spiders like to bite people? We have spiders in the house. I saw one. Does that spider there like to bite people? One time . . . Daddy, one time there was a spider on Mommy’s sweater. Was that spider going to bite her? It was black. Not the sweater. The sweater was her red sweater . . . Looks nice! Was it going to bite her? Do we taste good? Like chocolate? Hey Dad. Daddy! Daddy! Can we have some strawberries? Can you get me some strawberries? Hey Dad, did you get Paul a towel with different colors too? Is that Paul’s new towel? Is that like a rainbow? . . . or is it just striped different colors?”*

  • • •

  It was this simple combination—my inability to filter out or process spoken dialogue in real time, and Erin’s continual need to talk—that almost led to a final, catastrophic meltdown. The daily processing demands of this problem just led me, over the months, to deep, deep brain fatigue.*

  After a year and a half of this verbal explosion, I had reached the end of the line. This was a tricky place. It was not an option to not be taking care of Erin. She needed me as the reliable caretaking parent that she had had all her life. Her mother was, by this time, seldom at home, and additionally spending a good part of the year on business trips in China. There was not enough money for me to hire a regular babysitter—my salary already went to support two households. Yet I could no longer manage working and caring for Erin on my own. I was still, albeit in a much-reduced capacity, trying to be the guy who could be a professor, take care of everyone, raise a young child on my own, build a house on the side—the guy that always came through. But that guy was gone.

  I had to face reality. I couldn’t keep up anymore. Unless something changed, I was going to have to resign from my job, which in turn would mean losing my house, losing my ability to support my family, losing everyone’s medical insurance, and likely losing contact with my older children. After so many efforts that had done nothing but further drain my resources, I had little hope of finding any help. Nonetheless, because I was now on the precipice, I was prompted to make one last-ditch effort.

  It was at this point, in January 2008, that I pulled out my last remaining emergency savings and hired my second professional organizer, Heather. Heather’s first task was to help me to write up a detailed letter and send it to twenty selected researchers and centers that focused on traumatic brain injury, and that might either help me themselves, or know of someone who could. We especially focused on those whose work embraced the modern idea of brain plasticity. But we had no luck. In fact, over the months following, we got back only a single short response that said in effect, “I’m sorry! I can’t help you at the moment, but I’ll think about it.” Outside of that, the silence, as always, was deafening.*

  So now what?

  It turned out that Heather was (and still is!) a most completely excellent devout Buddhist person, around whom good things always seem to happen to others. A while after our sending the letters Heather ran into a woman at a party who had been to see a local cognitive restructuring specialist named Donalee Markus for a brain injury, and who raved about Markus’s effectiveness. The next morning we called Dr. Markus (hereafter “Donalee,” as everyone calls her, but intended with the greatest respect and fondness), reached her on her cell phone, and began, in that moment, the transformation that gave me back my life.

  PART THREE

  THE GHOST RETURNS

  MEET DR. DOTS!

  Even in our first, brief phone conversation I found Donalee Markus inspiring. She is one of those people just bursting at the seams with life, and compassion, and goodwill. We traded information and agreed to meet at her home office.

  Donalee is a cognitive restructuring specialist who practices clinically applied neuroscience—meaning that she reconfigures people’s brains so that they see the world, and think, differently. To achieve her ends she has developed specialized visual puzzles that change the low-level building blocks of thought itself. She has treated hundreds of people over a thirty-year career—many of whom, like me, have suffered traumatic brain injuries. She has led seminars on maximizing intelligence for prestigious institutions like NASA and Los Alamos National Laboratory, written books, appeared on television many times, and developed online intelligence-boosting puzzles.

  Although Donalee is now past the age when many have already retired, she still rises by five every morning to get to work, and appears to have the energy of a woman in her twenties. The word “dynamo” comes to mind when you meet her in person. One can’t help but be charmed.

  On January 31st, 2008—more than eight years after the crash—I met with Donalee at the beautiful Highland Park home she shares with her surgeon husband. We went downstairs into her basement office, and I sat across a table from her as we talked. We were surrounded by cheerful colors and interesting objects, including attractive candy bins—an indication of her work with children—and also a large number of file cabinets and drawers filled with many thousands of different cognitive puzzles. Donalee and I discussed a partial list of my symptoms, and also a list of my cognitive/personality weaknesses and strengths prior to the crash, both of which she had asked me to prepare in advance. I explained the difficulties I was having, and that I had more or less reached the end of the line, despite my best efforts to the contrary. To my surprise, she understood immediately about the unworkable cognitive load from my inability to filter out Erin’s constant chatter.

  After some preliminaries during which I made drawings with colored markers, Donalee had me sit at a table and make a copy of the line-drawn design shown in Figure 3.

  Looking at the drawing, I told Donalee that I knew exactly what was going to happen, and that within a few minutes I would be rather affected by the effort of what she was asking of me—even though ordinarily it would be trivial to make a copy of so simple a figure. She wanted to see how I approached the task anyway, as this was one of her diagnostic tools. So I set about copying the abstract drawing onto a blank piece of paper.

  Figure 3: Complex Geometric Line Drawing

  Within a minute I began to lose normal c
ontrol of my muscles; my hands and upper body grew contorted. Over the course of the next five minutes, my symptoms steadily worsened. My eyes grew wide like saucers. I hunched over the paper with my head twisted sideways, about six inches from the table. I looked very much like a person having a neurological meltdown—like an outwardly normal Professor Jekyll transforming before everyone’s eyes into a bizarre Mr. Hyde with cerebral palsy. I stared intensely at minute pieces of the design, trying to make sense of them, to “see” them, so that I could make the transfer to the new page. I worked ever more slowly . . . slowly . . . slowly . . . methodically copying the simple lines and circles, and finally moving at the speed of a frame-by-frame slow-motion movie. My movements became increasingly uncoordinated as the muscles in my arms, neck, face, back, and hips knotted up. The paper got bunched and wrinkled as my left hand, holding it, became increasingly contorted. While completing the task I kept up a calm, joking dialogue in slightly slurred speech, saying things like, “Well, as I said, this always happens. I try to avoid this kind of activity if I can help it.”

  Donalee told me later that in watching me work she was stunned. She had never seen anything like it. Her assistant, Mara, who was in the room, was on the verge of calling 911—giving hand signals to Donalee behind my back asking what to do. Only my calm, oddly juxtaposed, ongoing narrative convinced them to wait and see.

  Despite the persistence of my symptoms, Donalee next gave me some simpler tests, and we talked. She had me try on various colored sunglasses: purple, magenta, aqua, and so on.* Surprisingly, the aqua and purple glasses seemed to help my neurological symptoms—my coordination and balance improved, recovering slightly from the breakdown caused by the stress of her tests—and she gave me a pair of each to take home.

  In those first two hours we spent working together, I found Donalee to be really engaging—smart, organized, and compassionate. Her knowledge of clinically applied neurology was vast. I could tell that she “got it” right from the start. And critically important to understanding how she works is that she pays close attention to the people with whom she works. She is watching, and thinking, and asking, and listening—teasing out small clues to what is going on in the brain.

  Donalee told me she would think about what she had observed. I thanked her, and headed out.

  As I left, Donalee was again taken aback at the difficulty I had making it through the doorway of her office. She didn’t know quite what to make of the weird gyrations I used to get my body up the stairs to the first floor: holding on to the wall, twisting my head around and tipping it sideways in odd ways, staring intently at tiny pieces of the visual landscape, raising my arms up as though to fend off an attack from the ceiling and walls as I tried to “see” them in some elemental, proprioceptive way. She was amazed at the deterioration that had taken place just from the simple diagnostic exercises she had given me. I assured her that it was nothing to worry about—that this was normal and I had everything under control.

  After I left, I felt quite unsettled. I had been to many doctors and the result was always the same: they never called back. When I went to see them, they had little to offer. I knew this, but once again had allowed myself just a little hope. And yet I saw that, after all, I was once again just going to have to face the fact that my life as I had known it—now almost a decade ago—was well and truly over.

  It was embarrassing to be at Donalee’s and let on about the extent of my cognitive impairments, and it was saddening to be reminded of how even the simplest cognitive tasks were almost impossible for me to manage. Despite Donalee’s obvious compassion, I felt like the humiliation of my life had just been rubbed in my face once again. It evoked unpleasant memories of the time I had gone to see the movie Memento. A new low, after all.

  Erin, now three, was on a rare visit to the babysitter. So, instead of going home, I took a detour and went to the movies again. I spent several hours there just watching the scenes go by, drifting from theater to theater, not really able to understand what the movies were about, but letting the music, the dialogue, and the visual scenes wash over me in a multisensory montage.

  In the late afternoon I went home. Just as I got up to my bedroom to rest for a few minutes before going to get Erin, the phone rang. It was Donalee. She had called me back. I couldn’t believe it.

  Donalee: “Where have you been? I’ve been trying to reach you all afternoon.”

  Clark: “I’m sorry. I was upset about having you see me like that. So I went to the movies.”

  Donalee: “Clark, I have some ideas about how we can approach this. I have a plan. We can deal with this. I don’t like to sit around. I want to get this done.”

  Clark: “What!?” (I was at a loss for words—I couldn’t make sense of it.) “I don’t know what to say . . . I don’t understand.”

  Donalee: “Why not? What are you talking about?”

  Clark: “I’ve been to see lots of medical people over the last eight years. Once they get a look at me, no one has ever called me back.”

  Donalee (brushing off my amazement): “Well, I’m different, and I know how to work on this problem. One thing I was trying to figure out was, how can you possibly work at all? I’ve seen how you are. I know exactly what’s going on in your brain. There’s no way you can work with that kind of brain damage—especially as a professor.”

  Clark: “To be honest, it hasn’t been very easy.”

  Donalee: “Then I realized what it is. You’re the guy that never gives up—ever! Right?”

  Clark (pausing, thinking): “Hmm. Well, yes. That’s who I am.”

  Donalee (humorously): “Ever! . . . Ever!! . . . EVER!!!”

  We both laughed.

  Donalee: “I can work with that. We can fix this, Clark. I know where to start, and we’ll take it from there. When can you come back to see me?”

  And Dr. Donalee Markus was right. She did know what to do. This was the beginning of the brain-plasticity miracle that gave me back my life, and that we’ll now see unfold before my eyes.

  BRAIN GLASSES

  Part of Donalee’s plan was that I also work with a colleague of hers, Deborah Zelinsky, an optometrist who emphasizes neuro-optometric rehabilitation. Donalee’s comment was “We can manage everything here at my office, but in your case it will probably go faster if you also work with Debbie. Go visit her and see what she says.”

  So the following week I went to see Deborah Zelinsky, O.D., F.N.O.R.A., F.C.O.V.D.,* for the first time. Dr. Zelinsky (hereafter just “Zelinsky” as she seems often to be referred to, out of respect for her uniqueness, like “Bach” or “Einstein”) is a brilliantly innovative neuroscientist in a clinician’s white coat. She accesses the brain primarily through manipulating the light that passes through our retinas. Coming from an academic family that includes a former Northwestern University professor of mathematics, and a Caldecott Medal winner, Zelinsky regularly engages in scholarly activities such as giving seminars on her techniques in many European countries, attending scientific sessions, and occasionally chairing them. She was the 2013 recipient of the Neuro-Optometric Rehabilitation Association Founding Fathers Award—a distinction she shares with the eminent scholar V. S. Ramachandran, who received the award in 1997. She has worked with the blind, the autistic, the developmentally delayed, those who have had traumatic brain injuries, children with learning problems, and other special populations. She serves as an expert witness for brain-injury cases.

  Zelinsky maintains a suburban practice north of Chicago called The Mind-Eye Connection and between lectures that take her around the world sees patients as an optometrist who makes use of many neurodevelopmental rehabilitation techniques. Although she is a talented and practicing optometrist, and regularly prescribes glasses for patients, it is clear after spending just a few minutes with her that she is primarily focused on how the visual systems interact with brain function, and how the visual/spatial functions in the bra
in are integrated with the higher-order brain processing that makes us human.

  When I first entered the Mind-Eye Connection offices, the immediate thought that came to mind was friendly commotion. Zelinsky’s office, and lab, is the informal hub of not only a local, but also a national and even an international network of people wandering through one of the great, casual unfoldings in clinical brain science. On this visit there was a local high-school student sitting in the waiting area, there for a pair of glasses; a developmentally challenged third grader from Ohio trying on frames in the display foyer; and a European neuroscience professor wandering out from one of the examination rooms where he had been chatting with a pair of top-notch optometry interns from California.

  On the front desk there was a pair of glasses that needed a screw replaced, sitting next to some notes for a presentation on her work that Zelinsky was giving the following week. The receptionist was talking on the phone to a parent from Texas who was desperately trying to slip her child into Zelinsky’s packed schedule. In the receptionist’s free hand was Zelinsky’s travel packet for yet another series of lectures she’d be giving in Europe later in the year.

  Zelinsky herself came out of a different examination room holding a patient’s folder, momentarily resumed the ongoing academic conversation she’d been having with the neuroscientist, then stopped to give a charming smile to the third grader—complimenting the little girl on her choice of frames. Zelinsky introduced herself to me, then handed me off to her assistant Martha.