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 HUMAN MACHINE IS BROKEN
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 emergenc
y” 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.
If I hold up my hands and ask you to pick one, you’ll have no trouble doing so. But here is the question: how did you choose? If you look closely, you’ll realize that in all cases, independent of whether you do any preliminary work, at some point magic happens. A decision floats up from the ether inside your brain and action follows: pointing, speaking, reaching, and so on. Yet some concussives—during periods of brain fatigue—are incapable of such a seemingly simple task: you could offer them a thousand dollars to choose a hand—any hand—but they still might not be able to do so, because they can’t decide.
This debilitating problem with decision making propagates throughout the whole system. The concussive’s arm will not go up to “just pick one” without a clear visual/spatial instruction from the tired brain about where the arm is to reach. Phrases such as “the hand on the left” will not form without an image of the hand on the left, which is used to retrieve the words that make up the phrase. When a concussive looks inside her head for an answer, there
is only an emptiness—like something perched, waiting along with her for the next step to occur. Those who have age-related trouble recalling nouns will have some sense of what this is like: you know you know the name of the movie actor to whom you wish to refer, but when you look inside to retrieve the name, nothing is there.
By January 2000—four months after the crash—I had grown increasingly brain-fatigued. My deep “cognitive batteries” were drained, and my life circumstances were such that I could not get the brain rest I needed for them to recover. I had not been able to manage shopping recently, so my food supplies were low. On one particular afternoon I was also hungry, with low blood sugar, which made matters worse.
Without thinking about it, I took an apple and some unsliced salami out of the refrigerator and placed them on my cutting board next to each other. I now had to decide: Do I prepare the salami first, or the apple?
Nothing came to mind. I was stuck, doing absolutely nothing, waiting for a decision to arrive. From time to time thoughts would arise such as, Just move your arm, you dope! or This is stupid. It makes absolutely no difference which one you prepare first. But mostly I just stood there, hungry, staring at the food in front of me, waiting for the next step.
After fifteen minutes of staring at the food, getting nowhere, I gave up. Because of the intense effort I had made in trying to decide, I now had difficulty with motor control. Moving in slow motion, with contorted hands and shuffling feet, I returned the food to the refrigerator, and went away hungry. I had only made things worse: the need for a decision became ossified, centering around the two objects.
During the course of this particular incident (variations of which occurred over the months and years that followed), I returned to the kitchen ten times over the course of two days trying to get something to eat, like a rat repeatedly traversing a dead-end maze. Every visualization of a plan ended up in the same place: then choose one. Because I could not conceptualize what a decision was—could not see it—I had no way to remove choice from the alternate plans I formed.
The Ghost in My Brain Page 6