The Ghost in My Brain (7 page)

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.

After two days of forced fasting, and although I was loath to do it, I finally called Jake, and asked him to please instruct me to either eat the apple, or eat the salami. Jake's simple “Okay, go eat the salami first, then eat the apple”—just that one sentence, spoken over the phone, but which gave me a command to follow similar to that which allowed me to initiate physical motion—was enough to end the forty-eight hours of struggle.

KNOWING IS NOT CERTAINTY.
People will talk about decisions as “gut-level feelings,” and indeed decisions do seem to happen as a welling-up of action from the core of our being. Yet if
most of us were to look closely at the actual process of making a decision, we would find that choices are usually represented with a visual/spatial metaphor, with two or more options laid out symbolically, such that particular features are shown in contrast along some spectrum. We might, for example, find ourselves choosing between the feel of “leftness versus rightness,” “heaviness versus lightness,” “peacefulness versus chaos,” “intimacy versus expansiveness,” or “wrongness (dark?) versus rightness (light?),” with colors, or shapes, or shadings, representing aspects of those concepts along a dimension.

The intellectual part of decision making, the “knowing” stage, is concerned with clarifying how the choices are represented, their various weights, and so on. Sometimes we might eliminate choices altogether by using logic.

But this is only the first part of the deciding process, and, surprisingly, is neither the most important, nor actually even necessary. (All people, in certain circumstances, can operate purely on intuition and skip the “knowing” stage altogether: “I don't know, just pick one and worry about it later!”)

Much more critical is what follows. Once the choices have been captured in a symbolic, visceral, spatial way,
certainty
arises—or at least enough of it arises—and one of the choices is now marked within the 3D visual space as a goal. The body then responds by producing actions: a hand starts to reach for the apple, or the mind sees the words “Fine! I'll call her now . . .” and starts the vocalizing process to speak the words, and so on.

But this is the crucial step that is missing for the concussive with a fatigued brain:
certainty
never arises, the visual/spatial goal is never marked, and without a target the body cannot respond. No amount of inner dialogue from the “knowing” phase is of any help.

This is why the knowledge that either choice—eat the apple
or
the salami first—would be far better than no choice at all did not help me. It is also why the lack of a clear visual/spatial target left me physically stuck, unable to move, in exactly the same way I would get stuck at the top of stairs, or in trying to walk through a doorway: if I could not “see” the goal, my motor system could not respond.

Certainty also comes as a spectrum: you are completely certain that the sun came up this morning; you are reasonably certain that it was hot in Phoenix yesterday; you are somewhat certain that the Cleveland Indians will win the pennant this decade. There is a complex relationship between the degree of logically “knowing” something is likely to be true and the strength of certainty it generates—but the two are not always correctly linked, just as people sometimes use base rates correctly, and sometimes ignore them altogether.
*
Similarly, people will sometimes use the degree they
know
something to be true to create a like amount of
certainty
that it is; but sometimes they won't. Most people experience this as the difference between logic and intuition. In messy environments, especially when logical antecedents are incomplete—which is much of our world—informed intuition (enough certainty to allow us to act) is a critical part of our lives.

From an experiential standpoint, those who suffer from obsessive-compulsive disorder (OCD) often have similar problems: they might fully understand that they have already checked four times that the gas oven has been turned off; they might fully
understand that they are having an OCD attack and that returning once again to the house to check the oven is not going to help. But
knowing
does not help them, either. They too are missing that same elusive sense of certainty that drives the lower-level planning system so closely tied to motor control. (And we should note that OCD is sometimes clearly linked to a previous TBI.)
*

Elemental cognitive
certainty
—a concept easily understood but so elusive it defeats any attempt at formal algorithmic description—is a necessary component of many complex cognitive functions.

WHEN PIECES OF THE COGNITIVE MIND GO MISSING.
Another difficult, insidious feature of concussion, and possibly the one that has most contributed to so many misdiagnoses and so much general misunderstanding of the condition, is that when cognitive capabilities go missing they are often so fully gone that the concussive does not miss them in the way a normal person would, or indeed sometimes even realize they've gone absent.

In my case, at the time when I was struggling with the apple, I was in the still-early phases of my post-concussion trauma. I didn't realize I had any kind of well-defined syndrome. I seemed unable to perform certain tasks, but outside of a vague uneasiness about the way things used to be, I had no real “sense” of the missing capabilities themselves.

Consider this analogy: You have a friend Joe, who for our purposes will represent a cognitive function that goes missing, such as decision making. If Joe moves to a monastery in
Thailand, you will know that you cannot call him to come over for a barbecue, and you might miss the interactions that you used to have with him. But you still know who he was, know how you
would
interact with him if he returned, and know exactly what is now missing from your life.

By contrast, for a concussive, when Joe moves to Thailand, it is as though he never lived at all. All relationships between Joe and anything else in the concussive's life have been removed, all memories of interaction with him are gone, and except for a vague, undifferentiated sadness for the way things used to be, there is no sense of missing
him
.

In this way—as I experienced during my unsuccessful ER visits—concussives are often unable to articulate what is wrong with them.
The cognitive machinery that is missing is also, exactly, the machinery necessary even to conceive of the machine itself.
In the case of the apple, the capability was easily described and easily understood: there are two objects, or paths of action, so pick one. Thus, intellectually, I
knew
what a decision was. But—and this is important to understand—I had no visceral
sense
of what a decision was. I had no feeling for what led up to the making of a decision except that magic used to happen, and now it no longer did.

NO LONGER HUMAN.
This brings us, now, to one of the most troubling aspects of TBI, and one that we have to at least suspect is a significant contributor to the reported increase in the suicide rate among those of us with concussions: that we have, in many ways, already lost that which makes us
human.
*
For a
concussive, no matter how long the list of
identified
cognitive deficits might become, there will still be hundreds of other small cognitive changes that are much less easy to define—though collectively they are perhaps even more important in the end.

This ubiquitous phenomenon is ultimately quite troubling for a concussive. For example, suppose you had lost the ability to naturally order your words as “the big blue box,” instead of saying “the blue big box.” Well, you would sort of know that something was wrong, and so would others, but exactly where is this syntactical preference capacity stored? A concussive is not privy to the internal workings of the brain, any more than anyone else is. It just
feels strange.
This kind of small breakdown happens all the time in so many ways—each contributing to the sense of alienation that many concussives share.

The net result is an overall feeling that we are no longer part of the human race: We look the same. We talk the same. People around us don't really notice too much difference. We haven't grown feebleminded, and the individual quirks that give us our essential personalities are all still in place. But inside, without really comprehending why, we are hugely changed. The person we have always known is strangely missing. This feeling is so pervasive among the concussives I've met over the years that it has become a standard private joke:
Welcome to life in exile. Welcome to life among the nonhumans.

This feeling of being lost carries with it a sometimes terrible sadness—a longing to go home again, to taste again, just for a little while, the joys, and even sorrows, of being truly human just one more time. But, ultimately, it also carries with it the knowledge that the only way back is after first passing through the gates of death.

This is a dangerous combination. On the one hand, a concussive may feel that to a large extent he has already died. The step from life as a nonhuman to the ending of life altogether may not seem to matter very much. On the other hand, there is a longing to return home, to be human again. At some juncture, usually after the first two years have passed, most every concussive will finally approach the realization that in
this
life anyway, he is
never
going home again. When this happens, it is easy to imagine that finally shedding one's broken-down body—a body that can no longer support being human—might allow the spirit to return home on its own. Taken together we can see that in this way, for a concussive, pondering suicide might have nothing to do with a depressed and painful mental state, or being a cry for help, but rather a giving in, a simple final acknowledgment of what really, inside, has already happened. It is a walking
to
, instead of a walking
from
.

Another aspect of concussion that can be emotionally troubling is that the business of getting through the day just becomes so much work. As we've already seen in my own life, tasks that require any sort of visualization, or planning, or pattern matching, or balance, or decision making—in other words, more or less even the simplest things one might desire to do—become a struggle. Often a concussive will just want to put that burden down. Considering all the small battles fought just to get through a single day, life with concussion can feel like the labors of Sisyphus endlessly pushing his boulder up the hill.

On more than one occasion I wrote in my notes that I would have preferred to have lost two legs and one arm than to have suffered from concussion. I judged this to be a reasonable trade-off in my favor. At least I'd still be human.