The Ghost in My Brain Read online

  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.

  PART ONE

  CONCUSSION

  MIDNIGHT

  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—three 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. . . .

  THE SIZE OF THE PROBLEM: THE MAGNIFICENCE OF THE HUMAN BRAIN

  The human brain is a magnificent device, and the complexity of the human mind it supports is staggering to ponder. It is not possible for us fully to understand the enormity of the changes that take place when someone suffers a traumatic brain injury (TBI)—a concussion*—without first having some idea of the phenomenal (astronomical!) computational powers of the device we are considering.

  Some supercomputer researchers estimate they’ll need exaflop computing speeds (1,000,000,000,000,000,000 floating-point operations a second) to model a single human brain. Put in layman’s terms, that’s 50 million desktop computers all networked together—and a single such modern desktop is a pretty powerful device, far more sophisticated than the big boxes of the 1960s and ’70s that might each support a company with thousands of employees. Another way to picture this is that 50 million desktop computers laid end-to-end would stretch halfway around the earth, with another three thousand miles to spare.

  For those of us who are trying to mimic some of the brain’s systems, these are not even the impressive numbers. Rather it is the design of the system—the organization of the software, so to speak, and the impregnated information—that is the truly extraordinary aspect of who we are.

  Imagine for a second that you are back standing outside the front door of the place you lived when you were five years old. What color is the door? Does it have glass in it? Does it open outward or inward? Are there steps in front? A landing? Is there a doorknob or a latch? On which side are the hinges? Remember that door?

  Estimates on the size of human memory vary widely. We are not even sure how to define it because, for example, retrieving information from memory also modifies it at the same time. But by almost all reckoning, it is very, very, large.

  To get a handle on the numbers, let’s imagine that we are writing everything we remember down on sheets of paper, in a 12-point font, on both sides of the paper (one byte per character). The more we have to remember, the more pieces of paper we put on our stack. The size of our memory is the height of the stack of paper. So how tall is the stack?

  Harvard researchers have been able to store large amounts of information in DNA molecules, and if our brain were made of pure DNA, our memory-capacity stack of paper might stretch out into space for 2,485,795,454 miles—or circle the earth 100 million times. So we know that biological systems can store a great deal of information! Many estimates of actual human memory capacity have the pile of paper extending a much humbler distance—merely up to the moon and back.

  But now we ask about the real magic—how did you get 238,000 miles up to the moon alongside that stack of paper, halfway back, another six hundred miles, twelve hundred feet, eight inches, fifty-eight pages, and two paragraphs along to find the exact location of the information about that front door you haven’t seen in twenty years? How did you know to look there? How did you do that in less than a second? Because that is typically how long it takes us to retrieve that long-disused information . . .

  What holds us in the greatest awe is not merely the hardware, but rather the design of the truly elegant system that runs on it, giving us the human mind.

  And when we start talking about our minds—that which really makes us human—the numbers get even more staggering. At the University of Leicester, James Nelms, Declan Roberts, Suzanne Thomas, and David Starkey calculated that capturing everything that could contribute to a human’s mental state would require 2.6 tredecillion bits (2.6 followed by 42 zeros).* In their fun paper, they note that to transmit that much information using a Star Trek–like teleporter, but at high-speed Internet bit rates, it would take . . . several hundred thousand times the current age of the universe.

  To simulate concussion damage to a human brain then, we’ll need to gather together those 50 million desktop computers, the 500,000-mile-high stack of paper, and the almost inconceivable amount of information it takes to construct a human mind, then loose a hurricane on the system, ripping out network lines, laying waste to vast sections of memory, and sending landslides to smash hundreds of thousands of computers.

  In this way we can imagine the size of the problem we are trying to address: with a single blow to the head—in that moment of impact from concussion—we’ve caused staggering losses in computational power to the unimaginably complex systems that go such a long way in making us human.

  Fortunately, this magnificent device is also largely plastic and able to reconfigure itself over time, borrowing a little here, and a little there, and in this way able to restore much of its lost functioning—though, as we will see, not always without a little clever jump-starting of the stalled processes.

  THROUGH THE KALEIDOSCOPE

  . . . My time was running out, but I was still stuck in the middle of Grant Park. And now, not only was my brain fatigue
d, but my mind was also growing dull from the onset of hypothermia. My body was giving up. I could not feel my toes or my fingers. I was fading away.

  The question was, How do I get moving before it is too late?

  Then magic happened. I swayed in the wind and tipped forward. My left foot moved on its own to keep me from falling, then my right foot, then my left again. Stump, stump, stump. I stared intently at the now inconceivably distant horizon where I knew my car was. There is where I am going. My jaw dropped farther, and my tongue hung down in my mouth. I could not feel the soles of my frozen feet. My index fingers popped out again, to help with balance, and I walked with a bent-kneed, shuffling gait—like a zombie. I willed myself toward my car a few inches at a time.

  Within each unfolding moment, my world was made of fractured images: little scenes of blades of grass poking through the snow, of darkened tree branches, lights in the distance, and night shadows. Nothing was whole. The Dolly Zoom Effect was in full force, and though I knew, intuitively, that my car was just up ahead—thirty feet away—it still looked an impossible half mile distant. My feet were again coming . . . to . . . a . . . stop. . . . Out of desperation I changed tactics, and just reached for the car, let my feet walk toward the feeling of it, almost within my grasp. And then at last, from within the chaotic tunnel of my senses, my long journey—the first stage in the gauntlet—was finally over.