The Ghost in My Brain

by Clark Elliott

  In all I spent three hours that day in testing and diagnostic interviews, interleaved with the other patients—first with Martha, and then with Zelinsky herself.* The later parts of the testing were conducted in Zelinsky’s examination room, using her phoropter (the lens-swapping optometric machine that fits over a patient’s face). Zelinsky took copious notes throughout the process, and often referred back to earlier test results as she tried different combinations of lenses.

  Zelinsky explained that she would prescribe for me a special pair of glasses that included, among other things, prisms. They would not correct my eyesight the same way my regular glasses would, and they would not be useful for reading. She cautioned me about driving with them on. Beyond that, she wanted me to wear them as much as I could tolerate—it would take work on my part because the glasses were going to push my brain in the direction she wanted to take it. “Change is not always easy,” she said.

  I had brought with me extensive notes on my symptoms, which I was prepared to discuss with Zelinsky. At Donalee’s urging, I particularly wanted to go over with her the “visual brain seizures” that caused my body to contort and my limbs to shake from side to side under certain kinds of brain stress. Zelinsky was not the least bit impatient with me, but was understandably anxious to move on to the other appointments she had queued up. “I read through everything you brought me while you were working with Martha,” she explained. “We don’t need to discuss your notes. I already know what’s wrong with you.” I was a little taken aback. “And I know how to fix it,” she added, before giving me a quick nod and a smile, and then walking away to greet her next patient.

  And indeed, she did know how to fix it.

  A few days later I got my first pair of “brain glasses”—my Phase I glasses, as I later came to call them. In the days that followed, my cognitive functioning improved dramatically—no, let’s say astoundingly—and for the first time in eight years I started to feel like a real human. The effect of the new glasses, along with the work I had started pursuing with Donalee, was stunning. Importantly, although it was tiring and challenging for me to make the transition, it also felt right.

  Within the context of Donalee’s simultaneous treatment, Zelinsky was able to achieve, for the price of an office visit and a pair of glasses—and within the course of ten short days—what some of the leading neurologists in Chicago, and a famous rehabilitation center, and many others, had claimed would never happen: I started to get better.

  While I was understandably blown away by the dramatic results, Zelinsky was mostly cavalier about it. She was, of course, happy that I was getting better, but she already knew what would happen because she had seen it many times before. She knew what she was doing. This was old hat for her.

  I’ve preserved a letter I sent to Zelinsky just two weeks after getting my first pair of glasses, and in looking at excerpts from it we have a window onto this remarkable period during which my brain was starting to reconfigure itself.

  Clark Elliott

  [ . . . ]

  Evanston, IL

  28 February 2008

  “THE MUSIC BEHIND MY EYES”

  Dear Dr. Zelinsky,

  Below are some further notes that fall into the “very strange” category. [ . . . ] I thought it best not to mention these current symptoms when I saw you in person because, well, they are just odd, and there wasn’t time to explain.

  However, since you were trying various glasses on me with my eyes closed on Tuesday (!), and since we did briefly discuss the “blindsight” phenomenon involving non-visual retinal processing, it seems that I might best give you this additional data. I suppose I am trusting that you will not think me to be a mental case.

  There are two (additional) not-at-all subtle alterations that coincide with my having worn the glasses for about ten days. However, they both have to do with my hearing.

  First, some background: Before becoming a professor of Artificial Intelligence I attended the Eastman School of Music, and also spent time studying conducting, and trumpet, as a part-time student at the Juilliard School. I was one of the least naturally-talented musicians at either school. However, I was known as having one of the truly exceptional ears for “sound,” such that many recitalists would bring me in before concerts to tweak the hall, sound stage, and so on.

  I left music school to have more time to devote to my musical ear. To this end, I spent more than a year listening to single notes, then gradually two, and then three, on the piano, roughly eight hours a day, studying their individual sounds, and developing my ear. I have continued to study music, and in particular musical sound, listening pretty much every day for the last thirty years, with a few years’ forced hiatus after my brain injury.

  Now fast forward to last week.

  Strange Point One:

  I typically listen to music with my eyes closed, and last week I began to notice something odd happening. With my glasses off (note: with my eyes CLOSED) I would hear the sound coming from my stereo speakers (which were fourteen feet away) contained within the borders of an imaginary approximately 50 degree angle starting just behind my eyes and reaching toward infinity past the speakers. This was “normal.”

  But, with the new glasses on (and my eyes closed), the sound stage instantaneously came about “ten feet” closer,* and, most dramatically, the angle of my “hearing-scape” changed to 180 degrees, extending in a straight line through just behind my eyes, and encompassing everything in front of that line.

  For someone with ears as acute as mine, this is not a subtle difference.

  What do I mean by my hearing being different? Well, this is a little hard to describe. I suppose I have always known that I “see” sounds. That is, I hear them, but I represent them as visual symbols. Sort of like: when listening intently I am not using my eyes at all, but I am hearing the sounds visually through my ears.

  With the glasses on I have more than tripled the space in which I process the meaning of sound. But, it is much more profound than a face-value “3x” increase. For example, when I study music I use every available piece of working memory to store what I’ll call “partial products of my listening process.” When this temporary, ephemeral space in which I can “see” and “hold” my hearing increases three-fold, I get an orders-of-magnitude increase in the complexity of sound that I can process.

  Overall, the result is that there is an important and dramatic qualitative increase in the depth of my listening, rather than a quantitative one.

  The 180 degrees of my hearing (a 130 degree increase) applies primarily horizontally, but also, to a lesser degree, vertically.

  Strange Point Two:

  One point of immediate understanding with other people I have met who also have had serious TBI is that we understand one another when we say, “I am no longer human.” That is, in my case, I am sort of like a human, and I can fake it such that no one else notices, but something very tangible is missing. I imagine it to be like having had some kind of mystery lobotomy.

  Starting around the middle of last week I started noticing an improvement with this problem. An old friend, like the ghost of who I used to be—the real me—started following me around.

  Although I cannot describe why this is so, “that” me seems strongly connected to my “180 degree hearing.” That is, he had to go somewhere else because he could not live in the impoverished representational sound-scape that I was able to support. But now, at least temporarily, and from time to time, I’ve had enough hearing space to get a glimpse of the old me.

  We are listening, profoundly, through our magic internal eyes, to the rich world around us.

  Best regards,

  Clark

  THE GHOST

  In fact, in the letter I was holding back. My fear was that Zelinsky would think I was out of my mind—a nutcase. I thought it best to give her the data, but I was also hesitant to say too much.
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  Here are more details:

  The difference in my hearing was remarkable.

  I am a serious “audiophile” in that I treat my stereo system as though it were a fine musical instrument. Over the course of twenty years I worked with a reclusive genius to build it with special silver wire, vacuum tubes manufactured in England in the late 1950s, and resistors and capacitors from specialty suppliers all over the world. I listen through homemade speakers that have been built and rebuilt dozens of times as I chased a particular sound. I listen to music coming through my stereo as one might listen to Brahms coming through a Stradivarius violin.

  When my stereo system is “locked in,” all thought of the equipment evaporates. It is impossible to focus on anything but the musical performance being reproduced. This is how one knows the system is right. And I have never been able to stand the harsh, rhythmless, flat sound that comes from compact discs, so I listen only to vinyl—records.

  One evening, a week after getting my glasses, I found some time in my schedule to sit down and listen to music. I put on a record, sat in my listening chair, closed my eyes, and let the sound wash over me.

  Within the first few bars of the music I was so startled that I leapt up out of my chair, wondering what was going on. I know my stereo system inside out. I know my recordings inside out. I listen so carefully, so attentively to the details of the sound, that even a minor change becomes apparent. But I certainly was not familiar with the sound I was now hearing! It had been years since I had heard anything so . . . coherent. I couldn’t believe it. I wondered if perhaps there was some major change in the quality of the electrical power coming from ComEd, which can affect stability in the musical sound. I checked over my equipment, and everything was the same as always.

  So I sat down again, and closed my eyes, and thoroughly, gratefully—blissfully—enjoyed the music. I could not believe how cohesive it was, how much complexity I could make out in the visual/spatial, symbolic internal vision I always projected in my mind’s eye to make sense of the relationships I heard in the music. I could feel, and “see,” the pull—the stretching—in the rhythm of the bass in a way that perfectly offset the downward leaping steps of the melody, and with a haunting open harmony set off in the inner voices.

  At one point, still with my eyes closed, I took my glasses off so I could better relax and just enjoy the music—and the vision immediately disappeared! Instantly, I could no longer hear the magic in the sound. The musical vision became instead only a haunting memory. I was on the outside looking in, through opaque glass.

  So I put the glasses back on, with my eyes closed. And . . . once again I could “hear” my internal, almost ethereal, vision of the music. This was dumbfounding. My scientific curiosity was piqued: how could wearing glasses so drastically change my hearing, especially with my eyes closed?

  With the glasses on, my brain systems converged into a kind of “focus” that allowed for a much broader internal visual canvas on which I could arrange the symbols of my thinking. When I put on my new glasses, the immediate result was that, at least in some ways, my effective working memory expanded, or perhaps my access to it did. This allowed for many times the complexity in my cognitive reasoning. I had much more room in which to work: I could use the entire 180-degree space around my head, to the sides and front, for visualizing the music.

  By the second week of wearing my new glasses I had the strongest feeling that someone was following me around. At first, whoever it was, was lurking about twenty feet back, and a few feet to the right, off my right shoulder. Each day this person—or thing, or presence, or apparition, or ghostly presence—got a little closer, but was always behind me, and always behind my right shoulder. If I turned around, the Ghost moved around too, so that it was still behind me. If I twisted my head over my right shoulder to get a look at it, it would dart just beyond the periphery of my vision.

  Although I could never see who it was, I had the strange “sense” that this entity was about as tall as I was. It wasn’t so much that I was in contact with a sentient being, but was more a distinct change in the way I “felt” the world, or heard it, in that particular area of the three-dimensional space around me.

  This was spooky, and I have to admit that I wondered if I was finally losing it, crossing over into the territory of being not just cognitively impaired, but also, maybe, a little nuts. Was this, possibly, the beginning of something really serious, like schizophrenia?

  But at the same time that this definitely odd experience was unfolding, I also had a sense of well-being, a feeling that it was all right to let down my constant vigilance. I got used to having the presence follow me around, and it became almost like a companion, sort of like Conrad’s secret sharer—only mute.

  During this whole period, if I was awake, I felt the presence. Each day it came closer, and even during a single day it came closer, inching slowly toward me as it followed me around.

  Except for the strange feeling of this apparition, I was in most other ways getting noticeably better. My thinking was clearer. I no longer had to hold on to walls to walk down a corridor. I could think for short periods without nausea. I was able to get the key into my office door, even after teaching—something I’d not been well able to manage for years. I could mostly follow, in real time, what people were saying to me.

  After class one evening, I was walking back along the hallway to my office. The Ghost had gotten really close by this time—it was only a few feet away, still behind me, still off my right shoulder.

  All at once I realized what was happening: The ghostly presence was me. It was the me with whom I had memories back to the time I was three years old watching a toy cement mixer sitting in the sunlight on a windowsill, using that sunbeam to form my first concept of angles. It was the me that had ridden his bicycle up to the University of California to study math and physics when he was eleven years old. It was the me that had so loved his students as he taught music for years, and gone to Eastman, and the me that had finished a Ph.D. while raising his young children and working full-time. It was the me that, so importantly, could deeply, passionately feel the interweaving intricacies of music. It was the me that could talk to God. It was the me that could think, and feel.

  I was overcome with emotion. I always liked that guy, and now, after eight years of exile, he was, at last, coming home. I went into my office and just marveled at what was happening. I was so excited that I was trembling, and grinning uncontrollably from ear to ear, while tears of pure unchecked joy fell on my desk.

  By the next day the Ghost had moved inside me, from behind my right shoulder. I was, after all this time, reintegrating with myself. At last I had enough brain power to support the real me, the complex me. I could see the world through my own eyes again, could hear it through my own ears, and could apprehend the meaning of the world around me through the prism of my own personality. I was, at last, and once again, human!

  PART FOUR

  THE SCIENCE OF BRAIN PLASTICITY

  How had this happened?

  Everything had occurred so fast that I couldn’t make sense of it. I had had no time to adapt. It was like blinking and then waking up from an eight-year dream—still less than a month since Heather had even heard of Donalee Markus in the first place. I was amazed that these treatments worked. In all the time since the accident, nothing I’d tried had made the slightest bit of difference. Now I put on “magic glasses” and did connect-the-dots puzzles, and within two weeks I was suddenly getting better.

  Before meeting with Donalee and Zelinsky, I hadn’t made any effort to research the scientific techniques behind what was now, for me, a miracle. But as the fog lifted and I started to return to a semblance of normal life, my professor’s curiosity started nagging at me. Why did these treatments work, where all else had failed?

  Over the course of the next six months I would continue to improve. During that time I would work hard
on the demanding tasks that Donalee set for me to master, and I would also during this period move on to my Phase II and Phase III glasses from Zelinsky, followed in the years after by Phases IV, V, and VI. Although the most significant part of my return to health had now come in the first few weeks of treatment, I still had a ways to go.

  To make sense of the process we must look in detail at the remarkable science behind my brain’s recovery, starting in those first few weeks and extending through the years that followed. We’ll put on our lab coats and our sleuthing hats, looking carefully at what cognitive restructuring specialists and optometrists emphasizing neurodevelopmental rehabilitation do, and also at the details of my own experience in going through the process.

  DONALEE MARKUS AND HER DESIGNS FOR STRONG MINDS

  “I want to get you in and get you out,” Donalee said at our second meeting. “I’ll talk with you along the way, but I am not interested in any kind of ‘talk therapy.’ We’ll focus strictly on restructuring the cognitive aspects of your brain, based on neuroscientific principles. My research and training are strictly as a cognitive psychologist, not a clinical one.

  “I’ll be giving you a series of exercises designed to restore basic cognitive functioning that was damaged in the accident. We’ll be working from the ground up. When you’ve mastered the easier exercises, we’ll move on to the next level.”

  At the time, I was again in her basement office, surrounded by the ubiquitous file drawers full of puzzles. We were starting on the plan she had laid out for my recovery.

  “We need to go over your background,” she went on, “looking for lifelong weakness in cognition, such as organizational problems, trouble following rules, or maybe difficulties in integrating the big picture with the detailed view. Such prior weaknesses are the areas most likely to be affected by TBI in a pronounced way.”