The Ghost in My Brain (2 page)

Why I Wrote This Book

This book is intended for those who have suffered from a brain injury and know it, for those who have suffered a brain injury and will not know it until they recognize aspects of their lives in these pages, for those who have family members or friends who have suffered a brain injury, and for those who are simply interested in the magnificent inner workings of the most powerful computing device on earth: the human brain.

Stories of my fellow concussion survivors have flooded the media in recent years: returning combat veterans who have suffered traumatic brain injury (TBI), professional athletes who are demanding accountability from sports leagues and helmet makers, and some of our country's youth who have suffered troubling sports concussions. Given the
millions
of TBIs that are even reported each year in the United States alone, this is, yes, a quiet plague of epidemic proportions. Yet our society is only grudgingly coming to recognize that concussions are serious and life-changing injuries that may have lingering, undiagnosed symptoms such as emotional difficulties, fatigue, learning problems, and social problems that can last a lifetime.

In my experience, the medical community's standard of care for certain classes of TBIs has not yet caught up with effective new treatments that are available. There are many excellent physicians who have been exposed to current research in “brain plasticity” (wherein parts of the brain can be trained to compensate for other, injured parts), especially those physicians working with sports and military head injuries. However, it is unfortunately true that many M.D.s, including leading neurologists—as well as putative leading rehabilitation institutions—are as of the time of this writing unwittingly out of date when it comes to accurately diagnosing and treating concussion. This is unspeakably sad for those who are needlessly suffering and believe they have nowhere to turn.

The later chapters of this book that cover the science behind my recovery may also be highly revealing for those who suspect that they suffer from some form of attention difficulty, such as ADD, or suspect that a family member does. In the process of my recovery I realized that many of the features of such attention difficulties significantly overlap with those manifesting as concussion symptoms. From the many anecdotes I've heard from my university students, and others, I think we should be highly suspicious that some of these attention difficulties are rooted in prior, sometimes even mild, head injuries. How many times have I heard, “Oh, yes—now that you ask, I did start having this trouble last year after I had that [car accident / skiing mishap / skateboard fall / soccer concussion]. . . .”

The small changes that can occur in one's brain from even a quite forgettable bump on the head can masquerade in subtle ways such as personality oddities, trouble with multitasking, sleep disturbances, and even just growing old. Who would have thought to consider that slip on an icy doorstep five years ago as the culprit behind having a slight sense of being out of sync at unpredictable times, or having trouble managing appointments?

As a professor of artificial intelligence and cognitive science, I have shared some of the concepts covered in this book about how brains work with my classes, including the ideas behind several leading-edge cognitive restructuring, and neuro-optometric, treatments. It has been striking that I have never failed to have, in each such course, at least two students talk to me after class about their extreme interest in the material because of their own information-processing difficulties. This suggests to me that the kinds of brain difficulties experienced by
concussives
(as in, those who have suffered concussions)—albeit in much milder forms than my own—are far more widespread than we might traditionally suspect, especially among high-functioning, intelligent people who are very good at masking such problems.

One of the things concussives share is the feeling of having become an alien being. We still walk and talk and act as though we are part of the human race, but it doesn't feel that way inside. Essential parts of our brains that convey what it means to be fully human have disappeared—vanished in that moment of impact when we tripped on the stairs, or crashed into an arena wall. Instead there is a strange feeling of nostalgia, a longing for who we used to be.

Normals
—those who haven't suffered from concussions—will take for granted the countless small operations their brains perform as they think and gracefully move their bodies through the day. But a concussive loses the ability to manage the staggering complexity of the systems that implement these operations, and as a result loses not only basic cognitive and motor functions, but also a larger sense of self-identity, and identity in relation to the world. This makes us odd beasts—a cross between what amputees may experience with phantom limb syndrome, and what
hemispatial neglect
patients have when they suddenly lose half of their world: On the one hand, with a phantom limb, amputees are constantly reminded of what they used to be, of being whole. On the other hand, neglect patients are missing part of themselves and their world, and while they feel a sense of loss, they can no longer even imagine what it is they are missing. For a long time I lived in such a dual-natured limbo.

This book captures my harrowing yet ultimately fascinating odyssey as a concussive. For almost a decade, and even while struggling mightily—sometimes just to get through a doorway, or down a flight of stairs—I was constantly observing, analyzing, and recording the events unfolding in my life, and the ways in which my damaged brain was trying to make sense of them. I took twelve hundred pages of notes, and through them I became the subject of my own long-range experiment in cognition—exploring the relationship between mind and body, and the inner mind and outer world. Along the way I learned a great deal about how the
healthy
human brain works as well—leaving me in awe of this sublime and formidable computational device.

The book's title is a play on the phrase
the Ghost in the Machine—
and thus an indirect allusion to the seminal French philosopher René Descartes's idea of a mind-body dualism. Descartes believed these two agencies were separate—that the mind existed separate from the body. Oxford philosopher Gilbert Ryle disagreed, and in 1949 used the phrase to poke fun at Cartesian dualism. Although the jury is still out on this question, I know from personal experience—such as on a snowy night we'll soon see in downtown Chicago—that the mind and body are intricately intertwined. But the meaning of the title goes beyond this duality. Readers will come to understand that the ghost in my book is the sense of my true self—the “me” that was sent into exile in the moment of a car crash. Years later I underwent cognitive treatment based on the new principles of brain plasticity. Shortly thereafter, one evening outside my office at DePaul University, I felt the ghost return. My old self—the ghost of who I had been and who I so longed to be once more—had come back. I wept tears of joy that I was no longer sentenced to life as an alien living among real humans.

Above all, this is an illustrated tour through the odd, awe-inspiring, painful, scary, tragic, and fascinating world of brain injury, but one that in this case has the all-too-rare happy ending—an ending that is yet also likely to be possible for many thousands of those still exclusively locked into more traditional treatments (or nontreatments, as the case may be) for concussion.

As recently as four years ago I was told by local experts in the Chicago medical community that the only course of action I could take to deal with my symptoms was to learn to live with them. This would have entailed giving up my tenured position as a university professor, retiring into poverty from all forms of work, giving up the custodianship of my children, and perhaps becoming a ward of the state.

And yet today, through the courageous work of two brilliant Chicago-area researcher-clinicians, each of whom works at the leading edge of brain science relative to certain kinds of traumatic brain injury, I am almost without symptoms. The efforts of Donalee Markus, Ph.D., who rebuilds brains by using puzzles, and of Deborah Zelinsky, O.D., who accesses the visual cortex and regrows brain pathways using prescription eyeglasses, gave me back my life.

This is my story.

Just before nine o'clock, on a frigid night in early 2002, I completed my three-hour lecture on artificial intelligence at DePaul University's downtown campus. I was exhausted, and ready to head for home, but it took me another two hours to make my way to the sixth floor of the building across the street, then crawl down the hall to my office and there rest in the dark and the quiet until I was able to attempt my journey north to Evanston. Finally, at eleven, I left the building again and headed off through the brutal wind, intending to walk the five blocks to my car, parked near the lake on Columbus Drive.

Two and a half years earlier I had been rear-ended while waiting at a stoplight in nearby Morton Grove. It had been a relatively minor accident, but it had left me with brain damage from a concussion. Because of it, I found the scene now unfolding to be quite
common: sitting behind the podium in my classroom until long after the students had left, surreptitiously crawling down the hallways when I could no longer walk, then later lying on the floor of my office doing absolutely nothing until I lost track of time. And now I had to face a bizarre gauntlet that would take me across nearby Grant Park to my car, before making the long drive home.

It was scary cold over by the lake at this late hour, but I thought:
I can make it
.

I was walking reasonably well—but quite slowly—when I left my building on Wabash next to the El tracks. As I rounded the first corner at Jackson Boulevard, snow flurries began swirling around my head, flickering in the streetlights. Cars carrying late-working professionals raced down the street next to me as they too headed for home. I started having trouble navigating through the visual chaos around me, and I began to lose my balance when the wind gusted around the corners of the skyscrapers. I shied away from the traffic, and reached out to hold on to the sides of the buildings as I walked. By the time I had gone only two short blocks my brain was already beginning to tire again from the effort.

I stopped to rest on the corner before crossing through the late Michigan Avenue traffic. But even then I only made it to the center island before having to pause for several more traffic-light cycles. I thought,
This is going to be tricky
, and considered turning back. But turning back would mean forming another plan for how to get home, or perhaps where to sleep, and I couldn't manage it.
Easier to go on
, I thought.
It's just across the park
.

By the next block, as I crossed over the Illinois Central tracks and headed up the slight incline, I was moving ever . . . more . . . slowly. I finally made it to the edge of the snow-encrusted park, and started diagonally across it toward my
parking spot on the other side. I was by now shuffling along with a strange, slightly pigeon-toed gait and only managing a few inches with each step. My jaw hung down, and my head bobbed from side to side as I moved.

I felt the onset of a visual impairment similar to what cinematographers call the “Dolly Zoom Effect,” famously used in the opening rooftop chase of Hitchcock's
Vertigo
: Jimmy Stewart is hanging from a rain gutter about to plunge to his death. As he looks down into the alley below, the background visual scene bends and the alley floor drops away, even though the foreground stays the same size. This was the scene playing out in front of me now, except in real life, and I couldn't stop it. With each step I took forward, the distant goal toward which I was walking appeared two steps farther away.

Despite the frightening challenges such breakdowns engendered, I often perversely experienced a kind of existential wonder during these episodes as well, as I watched the great machine disintegrating before my eyes. I became a rare observer of the fascinating structures from which the unfiltered world was actually formed. Simple relationships all around me deteriorated into an unfolding chaos of increasingly eccentric patterns. Time morphed into something hypnotically strange and disjoint. It was all spooky geometry linking one frozen moment to the next.

From within this dim labyrinth I was still just barely managing to power the engine of thought. As I progressed across the park, I had to carefully map out the
shape
of each step from within the shadowy white images, and force my legs to follow the path these shapes described:
left foot forward
 . . .
right foot forward
 . . . But my world was growing increasingly fragmented, and as I lost my ability to put the elusive fragments
together to form visual goals, I simultaneously lost the ability to walk.

After
forty minutes
—thr\ee quarters of the way to my car but still less than four blocks from where I had started—I stopped moving altogether. My brain resources were used up. No crafty logic, no amount of physical strength, and not even an abundance of raw will could bridge the gap between my intention and my feet.

I had known the risks of getting stuck in the park when I went to work in the early afternoon, but I made my decisions from the most deeply felt sense of obligation. Not only did I love my work at the university, but keeping my job was not negotiable: ten people lived on my salary, including what would soon be five children. What other real choice did I have but to run the various gauntlets when I had to, including this one tonight? So now, once again, here I was. From long experience I knew there was not much for me to do but simply wait to find out how this particular scene in my life was going to end.

At this point my world had collapsed inward on itself: the concepts of
distance
and
left and right
had become dim memories. Every discrete event, independent of all context, slowly emerged from the ether and then receded into the void. My sensory filters had deserted me too, and within the great arc that was left I didn't even know where my body ended and the rest of the world began.

So now what? Despite the circumstances I was still at least the shell of a professor who worked at building artificial brains. It was my job to solve hard problems. I looked down at my feet and shouted at myself to walk, but I knew it was hopeless. I had lost the mysterious
initiative
that impels us all forward when we walk, and I knew that without brain rest I wouldn't be
getting it back. I considered lying down in the snow—which would at least give my damaged vestibular system a rest—but because of the bitter cold it seemed unwise. I might never get up again.

In the end I just stood there staring into the distance, absolutely still: slowly and painfully freezing, my jaw hanging slack, my arms out to the side for balance, doing nothing at all. I was seeking a special kind of visual peace, a calming of the outward landscape that would give my brain the cognitive rest it needed. But I had to be careful not to slide into a meditative state—because meditation would require attention and the ability to sense some mystical structure in the nothingness. Each of these would require the forming of spatial images and further deplete the scant brain resources I had left. What I needed instead was a completely different kind of nothing: a run-of-the-mill, down-to-earth, completely, utterly boring nothing of the kind that tortures schoolchildren at 2:30 in the afternoon on beautiful warm days in June.

Midnight was approaching, and I started to shiver uncontrollably. After another twenty minutes—
an hour since leaving my office
—I had the vague thought that perhaps this was finally the end; I would become just another statistic of exposure, lost to the cruel Chicago winter. I reflected with some resignation—an internal shrugging of my shoulders—that this was going to be a lonely way to die, alone in the wind and the cold like this, unable to move. I felt ashamed of my helplessness—all I needed to do was start walking. But there was nothing I could do.

Because of a neurological quirk, I was holding my hands in an odd position, forefingers and thumbs sticking up and outward to form an “L,” while my other fingers bent downward—apparently some elemental effort to help me keep my balance.
With conscious effort I clenched my hands into fists inside my padded leather gloves to keep them warm. But going against my primal neural programming in even this minor way drained me of the last effort I could muster. My system was shutting down.

Be brilliant, Clark, and come up with a solution. But don't you dare use your brain—save every last mental resource to connect your body to the visual goal up ahead, and move your feet toward it
. I wished for some magical solution that would float up out of the ether of my subconscious, one that I could conceive of without having to think at all. But I didn't know how to make this happen.

I was so tired—so bone-deep achingly tired. And somewhere in the cauldron of forbidden thoughts that I could not allow to form, I was also tired of being so tired—just like this—all the time, of having to struggle each day to perform the simplest of actions. But this was not a matter of emotional distress—most days my natural disposition was still upbeat, and I was often simply a careful observer, curious about what my obviously changed future would bring. My global fatigue was, instead, a deep exhaustion from the
physical
grind of thinking, and the resulting constant pain.

After a while an overwhelming desire came over me to lie down in the soft white blanket of snow covering the grass in front of me. The irony was that even though I was aware of the risk of dying, I was by this time no longer able to see what this meant. I couldn't conceive of it—something about time, something about calendars, something about endings, and the right-hand side of a timeline ending in nothing. The difference between life and death had lost its structure in the same way the line between my inner self and the world around me had vanished.
It was too much, too hard, too fuzzy to try to understand. I just wanted to curl up with my back to the stinging wind, and disappear.

But in another twist of irony,
I didn't know how to lie down
. I couldn't see the relationships between the vertical and horizontal planes around me, or how my body fit into them either. My concussed brain couldn't make sense of motion, and the sequence of motion over time. It didn't “get” any of this in the geometric way that would have allowed me to move. Without
seeing
, I couldn't initiate, and without initiating I couldn't lie down in the snow to die. . . .