The Ghost in My Brain (6 page)

In this section of the book, we will focus on the important
cognitive themes
that defined my concussion experience over the next eight years. How was I able to manage such severe symptoms, and yet still keep my job? What was the relationship between my visual system problems and my balance difficulties? Why was it that one day I couldn't walk across a parking lot, but the next I could run a marathon? Why couldn't I read
anymore?

Despite the obvious challenges, I was in many ways blessed by the
structure
of my life, both at work and at home.

Very important to this story is my employer, DePaul University—our nation's largest Catholic university—which afforded me critical flexibility in my work schedule, and thus allowed me to continue working as a professor. DePaul is quietly one of the little-known jewels in the academic world. Faculty positions were—and are—highly sought after by those (like me) who believed in a strong commitment to both teaching and service in such an eclectic environment—in addition to their pure research—because this meant that there were many ways for us to make a contribution to the university. This emphasis on a broader kind of service to the academic community allowed me further flexibility in how I could approach my job. I was surrounded by peers who
were high-quality researchers, but also, in this unique academic environment, universally good teachers as well. This ubiquitous “teaching personality” generally made them curious about, and sensitive to, the idiosyncrasies of others—including me. My students, too, were both thoughtful and helpful in working around my impairments. The service-oriented Vincentian ethics of the school provided a trickle-down grounding that fostered the well-being of its faculty, staff, and students, and thus wrapped me in a very supportive environment.
*
And, too, I was part of the hugely vibrant College of Computing and Digital Media, which has sported, for many years, one of the largest graduate programs in computer science in the world, giving me a great deal of flexibility in the courses I could teach. I was
very
lucky to be at DePaul.

My faculty peers were understanding. The dean of my school was compassionate, and strategic about making the best use of my diminished skills. I scaled back my promising international research career in computing emotions and instead focused on collecting and developing ideas for much later publication. I emphasized service to the college and my teaching.

At the time of the crash I was, after two decades, away from the stress of a long-failing marriage. I had my own place to live. Except for some initial difficulties in getting to see my older children, life was on the upswing. It was, overall, a time of great promise. My natural exuberance for life was still intact. I was surprised to find that, even after only a few hours of something like sleep, I woke up almost every morning thinking,
Hmm—how about that, another good day!

I only gradually began to realize—after a fashion—that my life was significantly changed and that this was not just some temporary state, like having the flu. After all, as long as I didn't
think,
I looked and felt pretty much normal. And when I did have to think, I became so engrossed in solving the immediate resulting problems that I didn't have room for making a global assessment of my circumstances. It was just one foot after another, every hour, every day.

It's true that I was daily encountering strange and difficult problems to solve. But solving hard, novel problems—mostly on my own—was for me a way of life, both personally and professionally. It was, in many ways, just business as usual. The work was similar; the problems were different.

A month before the crash I had moved into a small, burned-out house with only limited power and plumbing, which I was intent on rebuilding. I lived there alone, except when my older children were visiting. After sustaining the concussion I continued to work at the construction with various subcontractors as I was able, with no choice but to finish much of the job myself over the course of several years.

I had many big hearts around me during that difficult time. I formed what are now ongoing thirteen-year bonds with my second wife, Qianwei—a Chinese computer scientist—and my deeply thoughtful stepdaughter Lucy, with each of whom I remain close, despite de facto separation starting in 2006. Qianwei's parents lived with us for a year, during which time they became grandparents to our enchanting daughter Erin (my youngest), who has lived with me her entire life—including mostly having me as a single parent from the time she was two years old. Nell, the oldest of my three children from my first marriage (the
rocket girl,
who has been unfailingly supportive
of me), has been with me most of her life—and exclusively so from early high school through the completion of her master's degree at Brown University in
combinatorial optimization
. Peter, my second, lives close by, and has visited with me off and on. Lucy, my third by age, was always with me, even when her mom was frequently out of the country on long business trips. Paul, my fourth (who was crucial in getting me through my most difficult challenges with his little sister, and who often just
helped
with whatever I needed at the time), spent almost half his time at my house. So, during this entire period I was often the single parent for a houseful of bright and thoughtful children.

My good friend Jake, who also figures prominently in this narrative, lived nearby in Chicago until he moved to take a job in San Diego in 2002, where he continued to support me remotely.

Although none of the treatments I pursued ever helped with any of the actual root causes of my brain problems during this eight-year period, I kept hacking away at it, leaving no stone unturned, so to speak, in looking for such help. In addition to my visits to the emergency room, and to the first neurologist, I later visited a nationally known rehabilitation center, a balance clinic, a neurotherapy clinic, a homeopath, various M.D.s, and had every diagnostic psychological test available at the time. I saw two prestigious neurologists and a psychiatrist. All of these practitioners and institutions were serious about their work. Some of my visits were informational—which in itself was helpful to me—but beyond that, no one had anything to offer a TBI victim beyond compassion and the suggestion that I learn to live with my permanent symptoms.

Additionally, I had some success with various treatments
from an electrostimulation therapist, an orthopedic physical therapist who specialized in brain injuries, a standard chiropractor, an Atlas-specialty chiropractor, an herbalist, an acupuncturist, and a sports-medicine specialist. Each helped me to somewhat manage my symptoms, and to persevere. I studied Tai Chi for many years, with a gifted and deeply spiritual teacher who had a profound effect on my ability to experience joy in my much-altered life, and to manage the physical pain. Lastly, I had several years of deep massage with a superb Chicago therapist. His treatment was a godsend for the pain, and always helped, temporarily, to restore some cognitive function.

But, again, none of these avenues of treatment, no matter how effective at briefly addressing my
symptoms
, helped with the brain injury itself.

Besides simple survival, my main task during the years after sustaining my concussion was to figure out the
principles of my impairment
so that I could conserve my resources and make it through the week. Which activities were the most taxing, and why? What were the rules behind the complex interplay of sensory input, brain-body states, and human cognition? Gradually, themes began to emerge—captured here in the ten broad categories that make up this section of the book.

We will consider each of these topics as essential in understanding the cognitive breakdowns occurring in a damaged brain, but should also see them as a unique set of windows onto the fascinating workings of the
healthy
human brain as well. We'll look at many facets of what makes us human at some of the lowest levels of our cognitive machinery. Then, at the close of this part of the book, we'll meet
the Ghost
, who ushered in the period of my miraculous recovery almost a decade after the crash.

THE THREE LEVELS OF COGNITIVE BATTERIES.
Under certain circumstances, for varying but generally short periods of time, I would appear to act—and respond to challenges—normally. Then, under what would appear to outsiders as identical circumstances, I became reluctant and difficult instead. Others in my personal and professional life began to see me as sometimes unaccountably unreliable, or even obstructionist. Frustrated with my own fluctuations, I began to see myself that way as well.

It was hard to explain why it was possible for me to grade one exam in ten minutes, but it took all day to grade five of them; or why one minute I could converse freely about a complex unification algorithm used in AI programs, but ten minutes later couldn't understand what “next Tuesday at 4:15” meant.

Gradually I began to see a pattern. As long as I did not have to
think
and could avoid certain kinds of tasks, and if there were no demands on my balance system, I was more or less functional. The more I used my brain over the course of minutes or hours, the less functional I became. And the rate of my deterioration was highly dependent on the
kind
of brain activity I was performing: Trying to process two streams of simultaneous input (such as talking on the phone while jotting down notes on the conversation), making decisions, or sorting out the visual landscape when shopping, would leave me incapacitated within a few minutes. Performing simpler activities, such as driving, washing dishes, and socializing that did not involve attending to significant conversation, did not cause deterioration. Over time, I learned to make reasonable predictions about my cognitive and sensory breakdowns based on the kinds of thinking activities I had to perform, and on the current state of my brain resources.

Equally important were the varying rates at which I could
recover
from my distress.

Understanding the relationship between these two—the ways that breakdowns occurred, and the different speeds with which I recovered from them—is critical to understanding many of the otherwise puzzling episodes that I so often experienced. Nor was my experience unique: other concussives I spoke to over the years had exactly the same perplexing difficulty. Over time I found myself using a
cognitive battery
analogy to capture the structure of this recurring breakdown and recovery phenomenon:

Imagine that a concussive has three sets of batteries that power her brain.
Set A
—the working set—is immediately available, and also recharges rapidly within a few hours.
Set
B
—the first level of backup batteries—can be accessed if Set A is exhausted, but takes longer to recharge, possibly up to several days.
Set C
—the deepest level of backup batteries—can be used as a last resort at times of extreme demand when Set B is exhausted. But caution must be exercised—Set C charges very slowly, over the course of up to two weeks.

Now here is the problem—it is not possible for our concussive to charge Set B very well until Set C is fully charged, and similarly it is not possible to charge Set A very well until Set B is fully charged. So, once Set C has been drained, it is going to be a long time until our concussive's brain returns to (relatively) “normal” operation.

As long as our concussive can get by using her Set A batteries to power her brain, life will be relatively normal. But this means that her brain can only be used for short periods, and not in ways that are very demanding. These short shallow-demand periods must also be interspersed with regular brain rest—and often, in particular,
visual system
rest. The concussive needs periods of doing nothing, without thinking, or dreaming, or taking action.

But, life intrudes. Some tasks require that our concussive stay focused for longer periods, or require more intense use of her brain than can be powered by the Set A batteries. Going shopping, for example, requires that she perform extensive pattern matching and decision making. Caring for children requires that she always be prepared to respond, even when it is not convenient. At these times the Set A batteries are rapidly used up, and the concussive has to draw on the Set B batteries to power her cognition. Even so, as long as there is a period of several days during which she can recover, life will return to “normal.”

The real problems begin when the Set B batteries are used up, and there is not sufficient time for them to be recharged. Something comes up—say that after returning from an exhausting shopping trip one of the children discovers that he has left his expensive eyeglasses in one of the stores—our concussive has to respond, and as a last resort, she dips into her emergency energy source: the Set C batteries. These work fine, but only for a very short period of time. Using them, our concussive appears normal, and seems to act normally, in responding to the demanding circumstances. But when the Set C batteries are used up, there is nothing else for our concussive to draw on. Her life will not return to “normal” without a week or two of rejuvenating cognitive rest while the Set C batteries recharge.

In my case, this odd, terraced way that my cognitive batteries drained, and recharged, was both a godsend and a curse. On the one hand, it was a blessing because it allowed me, for example, to drive safely, knowing that if some driving situation occurred, requiring that I respond to a series of challenges, I would be able to draw on reserves to react appropriately; it allowed me to keep my job by being mentally present at important meetings that were cognitively challenging; it allowed me to reasonably get through conversations in important social situations. Most important, it allowed me to be an effective parent: if my children needed me, I could step in and take over in a responsible way.

On the other hand, it was a curse because outsiders might look at me doing fine on some task and expect that I would always be able to perform it, and others like it, not realizing the extreme toll it was taking.

Lastly, independent of what I've described as the three
levels of cognitive batteries, there was another, different, effect I could call on. This “extreme emergency” mode could be called up in an instant, to deal with dangerous situations typically associated with rushes of adrenaline, and could usually support “normal” body and cognitive functioning for a very short time—as long as the Set C batteries still had
some
reserve. However, it was exceedingly draining, always took a heavy toll, and required a significant recovery period.

While “deep C battery” mode and “extreme emergency” mode are a godsend to the concussive, acting as emergency buffers, they are not to be taken lightly: from the perspective of the residual emotional/physical trauma they engender, drawing on those deep emergency batteries starts out roughly equivalent to shouting at a child that a big wave is coming, or jamming on the car brakes, and quickly moves up to something more like reaching into a fire to retrieve an important document, or jumping off a roof to avoid danger.

How long did it take for the various battery sets to deteriorate? This does not have a simple answer, because it depended on the tasks being executed at the time. Working up in a tree with a chain saw—which requires intense balance calculations, complex visual pattern matching on both the moving background of the gently rocking tree and the fluttering leaves, and extreme vigilance so an arm or leg does not get cut off, will almost immediately work through Sets A and B, and soon start to carve deeply into the resources of Set C. Twenty minutes in a tree with a chain saw is guaranteed to require a week of rest to get fully back to relative equilibrium. By contrast, being the single parent of a continually chattering three-year-old will slowly exhaust the battery supply over the course of
several weeks, because there is just never any chance for the brain to rest and recover.

A few years after the crash a neurologist told me, “You won't get any better—after two years, no one ever does. But you'll get better at figuring out ways to live with your brain damage.” He was right about the last part. I grew quite crafty about avoiding cognitive and sensory activities that drained my batteries. In this way I sometimes appeared socially odd (“Goddammit, Elliott, why isn't your voicemail turned on!”), but was otherwise able to present a reasonably normal façade to the outer world.

I suspect that many concussives use similar techniques in their lives. So, while their brains may not have recovered, with time they have nonetheless become more adept at compensating for their impairments by avoiding debilitating activities. And, yes, this avoidance behavior will often make them seem irritable, or touchy, or just plain
weird.

GETTING STUCK AND THE MAGIC OF INITIATION.
One great thing that our bodies do for us, and which we never think about, is to
initiate action
. An important element of this is the concept of our spatial sense—our knowledge of who we are within the space around us.
*
The way this works is: we want to look at an item, or pick it up, or walk over to where it is, and the next thing we know we are turning our head to look at it, or reaching for it, or moving our legs to walk to it. But, as we have seen from my adventure getting home from work that winter night, there is a moment we never think about when
“magic” happens, when thought is translated into action, and we make the almost instantaneous transition from being still to being in motion.

Concussives often lose the ability to make that transition.

It is easy to imagine yourself in such circumstances: You are completely comfortable. You are not physically tired. You really, actually, want to rise up out of your chair, and you might even say the words, “Okay, let's go now.” But as you stare off into space wondering why this is happening . . . nothing moves. It is an odd sensation. It is not at all like being numb—you can feel every part of your body, the same as always. It is not scary, the way you would feel if you were paralyzed. Instead it is like being so globally lazy that you just can't get yourself to
feel
like moving. It's like watching yourself sitting there doing nothing from the outside in.

There is a haziness about it too, as though you can't quite “get” what it would mean to actually move. You can't
see
it. In some strange and subtle way it's as though moving, and the comprehension of moving, belongs to an alternate, unknowable universe.

For someone who studies the implementation of artificial intelligence, this can spark a marvelous moment of insight: if you can't “see” where you are going, or the thing you want to reach for—see your target's place, and
your
place, within the visual/spatial representation of the world around us that we all keep in our heads—then your muscles simply will not move. Your low-level motor-control system doesn't respond to words; it responds to
spatial images.
It is all very elemental, complex, useful, pragmatic . . . and it all happens for us without thought, in the blink of an eye.

Being unable to move can be embarrassing, and socially difficult. I learned to plan ahead. Sometimes I'd just avoid walking
down stairs (which were particularly problematic), attending meetings, and making decisions, any of which might get me stuck. Other times, I'd tell a trusted colleague or student of mine that “I'm going to likely have a little trouble after [the meeting/class],” and ask him or her, “Would you be kind enough to pull me up out of my chair and push me out of the room when we are done?” Fortunately, once I
got
moving I was usually okay.

I learned to be humble enough to simply ask strangers, “I'm working around a brain injury—could you possibly give me a little push so I can get going down the Jetway here?”
*

Sometimes I only needed someone to
command me
to initiate the action. In the strangest of my workarounds I could literally tell someone exactly what to tell
me
to do. I could then follow their commands to initiate actions that I couldn't manage on my own. In the most baroque of these scenarios, I would call my friend Jake on the phone to have him get me unstuck.

Me: “Hi, Jake. Sorry. I've been here for twenty minutes. I need you to tell me to get up out my chair and walk into the kitchen.”

Jake (in an authoritative voice): “Okay, Clark—GET UP OUT OF YOUR CHAIR NOW AND WALK ACROSS THE ROOM.”

Me: “Thanks. I'm up now.”

Jake: “No problem. Bye.”

Getting stuck, unable to move at all, is an important symptom of concussion. Many different problems, such as those of pattern matching, cognitive slow motion, decision making, and sensory overload, lead to this elemental breakdown in motor control.

THE MYSTERY OF CHOICE.
Another troubling consequence of concussion may be the loss of the ability to make
decisions.
This has nothing to do with the ability to assess what a correct decision would be. Concussives have not become stupid or irrational. Rather it is the troubling loss of the
innate ability
to pull the trigger on a decision once the data has been collected and an analysis has been made.

Even within the general population, the facility with which people make decisions falls on a spectrum, and a concussive's loss of decision-making ability is best understood in context. We all know intelligent and organized people with good assessment skills who still, in the end—even after careful research—have trouble actually
deciding
what to do, whether it's buying a car or ordering dinner from a menu. We also know people who have little interest in researching facts prior to making a decision, and yet they have no trouble deciding on a path. Thus we can see that the native ability to decide
—
to pull the trigger at the crucial moment—has little general relationship to the amount of knowledge one has collected about the circumstances. Analysis and decision are two distinct processes.