The Ghost in My Brain (20 page)

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.

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
!

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.

“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.”

It was of interest to Donalee that there had been long-undiagnosed, but quite pronounced, attention deficit disorder (ADD) in my family, and although I had always managed this aspect of my life well, I, too, had at least a tendency toward attention difficulties. Donalee used this, along with other information from her testing, to tailor the exercises she gave me.

“There are also strengths to consider,” she said. “Like many of the people I work with, you are a very high-functioning individual, and you also, additionally, have a prestigious Ph.D. This becomes very important when we set a baseline for our work together. ‘Normal' functioning for you won't be ‘normal' for someone else. So the work has to be adjusted.”

Donalee now pulled out a drawing I had completed for her thirty minutes earlier and put it on the table between us. When I had first arrived, she'd given me this drawing—similar to the one that had caused me so much trouble on my first visit (see
Figure 3
—but this time she'd had me use a series of colored markers for the task. The exercise had been timed, and after I had copied for a while using one color, she would have me discard that marker and use a new color, in a prescribed order. This way we could see not only the results of my work, but also the
way
in which I had gone about the task.

“We have to take into consideration your general cognitive makeup,” she said. “What is your thinking style?” She pointed to the large shapes I had copied with the first colored marker. “In your case we can see that you started out by focusing on
these large geometric shapes, then you connected them to form the big picture—the outline—and lastly, you filled in the details. You tend to see problems like this immediately as collections of concepts. Others will focus on the details first and just start copying everything in one small area. There is a wide range of styles that tend to follow professions and also personalities. Managers, for example, will often focus first on the big picture, and have little interest in the details.

“I consider you, and my other clients, as
students
,” she explained. “We are going to be teaching your brain
how to learn
again, starting with the cognitive basics.

“We'll be working at a number of different levels,” she went on. “For example, in your case it's critical that we repair the connections to the visual cortex that I can see have been damaged in the car accident. We might also have exercises to make sure that your inner
metadialogue
—the ongoing thought-dialogue that distinguishes us from other animals—is working at the appropriate level. Because of your prior tendencies toward attention problems, we're going to work at teasing out what cognitive rules apply in novel situations, and when. Then we'll have you learn to follow them appropriately, step by step.”

She asked me questions—teasing out my comfort level—as I worked through a series of various sample puzzles that she took out of the file drawers. She observed me very closely, noting the orientation of my eyes, my motor coordination, and the choices I made. Finally, having tweaked her plan, she gave me a large stack of papers containing puzzles and other exercises to work on, and I left with careful instructions about how to proceed until I saw her again.

“I'm on this, Clark. We're going to fix this!” she said as I left.

I saw Donalee regularly, every two weeks, until June 2008. In all, I visited her nine times over those first six months, and then once again for a follow-up a year later. I had daily homework assignments, which I collected and brought back for her to look over each time I returned.

During these “brain lessons” with Donalee, I went through reams of exercises printed out in stapled collections of sheets, always working with a pencil. And I worked at them virtually every day, limited only by the requirement that I be able to function in other areas of my life after my brain grew tired from doing the exercises.

The practice was always the same: pay attention to the instructions and the training examples, work toward the intended goal, rehearse the exercises over and over again.
Attention, Intention, Rehearsal:
Donalee's mantra. The exercises started out simple, and then, as the earlier tasks were achieved, got increasingly more difficult. I followed a scaffolding model that was based on—and assumed mastery of—the earlier exercises.

“I'm giving you
experiences
in the form of these pencil-and-paper exercises,” Donalee told me during one of my visits, “but also
techniques
for solving problems. Presumably these latter will be internalized through your extensive practice of the puzzles, and you'll be able to generalize them to other cognitive problems that arise.”

Donalee tailored my specific exercises carefully each week. She was always ready with some new tweak for the plan. I wondered—how many times had she been through this before?

“I've worked with possibly fifty students like you over the years—people with identified traumatic brain injuries,” said Donalee thoughtfully. “I've had hundreds of others that have
come to me with all sorts of brain problems, the roots of which aren't known.”

“I'm wondering . . .” I said. “A number of my students at DePaul show up with one sort of learning problem or another. In talking with the students I've often questioned whether some of these problems are the result of a long-forgotten, or undiagnosed, concussion earlier in their lives.”

“We always have to suspect that might be the case,” said Donalee.

THE GEOMETRY OF COGNITION.
In my work with Donalee, I began by viewing pages of line-drawn two-dimensional shapes, like triangles, squares, and trapezoids, which had dots in the corners. Then, on the subsequent pages, looking at only the dots, or dots with some lines, I started filling in the missing line segments in the drawings to restore the original design (see
Figure 4
).

Figure 4:
Simple Dots Figures

 

Figure 5:
Simple Figures Overlaying One Another

These exercises started very simply, but then got increasingly more difficult as the shapes began to overlay one another, with more of them per exercise, and fewer clues to distinguish the shapes hidden in the dots (see
Figure 5
). Donalee explained our work this way: “You've been trying to run a marathon with a broken leg—your brain—for these last eight years. It can't heal that way. We'll get there, but first we have to go through a step-by-step healing process. In the first of these dots exercises it's like you're lying in the hospital with a cast on, and we're teaching you to wiggle your toes. Once you can wiggle your toes without pain, we'll think about having you sit up in bed. Crutches are a long way off!”

After a couple of months, I graduated to pages and pages of three-dimensional dot exercises. I was first shown the 3D shapes, then given exercises to complete based on those shapes (see
Figure 6
).

The first of these exercises had all the dots, and most of the lines, but some of the lines (the “edges” of the shapes) were missing. The exercises then got gradually harder until the lines disappeared altogether, leaving only the dots.

Over time I began to work with arrows, diamonds,
pyramids, rectangular boxes, octagon-shaped bass drums, and so on. In each case, a shape first appeared on a page by itself. Then different shapes began to appear together. Then they appeared together and were also overlapping
.
There were page after page after page of dots that had to be connected. By the end, I was given full pages of chaotic-looking sets of dots. All of the 2D and 3D shapes had to be teased out, and drawn with pencil, such that all of the shapes were correctly constructed from connecting the right dots and all of the dots were used (see
Figures 7
and
8
; two full-size dots puzzles appear in the
appendix
for readers who want to try them out).

Figure 6:
Snippet of 3D Figures with Helper Lines

When I brought my homework back to Donalee, she carefully went over every page, every shape, looking for the slightest deviation that would give her clues to my brain state, brain weaknesses, my intentionality about doing the homework, how the motor coordination in my hands was working, and so on.

After a while, we simultaneously began practicing rules
that applied to collections of simple colored objects like balloons and butterflies. The rule might be “find the object that DOES NOT belong in this set.” Then I would have to
exactly
follow those rules to complete the subsequent exercises.

Figure 7:
2D Page of Dots Overlaid

For example, in
Figure 9
, have we circled all of—and only—the figures that are the
same color
, but
different shape
, from the sample in the square box? (No, because the colored butterfly is not white, the colored lock is neither the same color nor a different shape, and the white lock is not a different shape, so none of them should be circled; the lower right white butterfly meets the constraints but is not circled.)
*