The Ghost in My Brain (10 page)

An hour later, James, relenting, came back to get me. He had found a motel. After we drove there, he went up to the room and went to sleep, leaving me alone to arrange my own belongings. I sat on the curb next to the car, without the slightest clue about how to proceed. A gang of toughs came by, carrying bottles of liquor in paper bags. They jeered at me, shoving me with their feet. I thought they might steal my things, or beat me up, but in the end they left. It took me an hour of intense work to get from the car to room 201, which was only fifty feet away, guiding myself through the chaos one inch at a time. I inched my way up the stairs and into the room, then fell asleep on the floor with my eyes open.

BALANCE AS A COMPONENT OF THOUGHT.
It is seldom considered, but in fact balance is linked to basic cognition, and is part of the way we construct multifaceted symbols in our brain. Without the orienting-within-space grounding of the balance system it becomes almost impossible to think clearly. When I lost my own sense of balance during times of brain distress, I also coincidentally found that the symbols I used for all kinds of problem solving became impoverished as well.

For example, we think of the concept of a
symmetric relationship
as being “the same in each direction.” But the subconcept of
direction
, at least for me, includes as part of it a sense of space, a sense of objects being present in that space, and the idea of potential motion from one of the objects to the other.
With symmetry, whatever “happens to” one of the objects also “happens to” the other object, albeit in a reversed direction. But each of these images—direction, space, objects in space, motion, “happens to,” and reversal—in turn tends to involve the even more basic concept of a horizon, and upness and downness, and leftness and rightness as well, each grounded in our
balanced orientation in the world
.

Furthermore, these thought-objects are placed in space, often in front of our foreheads, certainly not behind our ears or our knees, so our own orientation within the thinking landscape is part of our reference. When the balance system is malfunctioning, essential elements (our perspective, orientation in space, “leftness,” “upness,” etc.) of each of these basic features (“happens to,” direction, motion, etc.) of the basic symbols of thought (symmetry, relationship, etc.) leave us. We can still think, and still manipulate symbols, but once again the visual system has to overfunction to make up for the absent natural richness of the original symbols. This is very fatiguing, and often not maintainable for more than a few minutes.
*

Maintaining balance in our lives goes far beyond merely staying upright.

WHEN GEOMETRY LOSES ITS STRUCTURE.
In the few months prior to the crash, I had started to gut the burned house I was living in, so that I could rebuild it. I had four brick walls, three doors, and a few newly replaced windows, as my home. I was using a duct-taped garden hose and a laundry tub for a shower, and most important—with the Chicago winter looming—I was soon to have no roof. It was unfortunate that it was at this point in the rebuilding process that I got the concussion.

Because funds were so extremely dear, I felt I had no choice but to continue with the rebuilding, working with subcontractors and doing much of the work myself. But this meant that with almost no ability to form or understand plans, I still had to be on the job every day managing all aspects of this large project.

I did virtually all of the shopping for parts and supplies
myself. On a typical shopping day, I might arrive at Home Depot with a list of a hundred complicated parts that the plumber needed
that day
in order to keep working: twelve 60° angled male-to-female ¾ inch PVC joints, four ¾ inch copper sweat-fit right-angle joints, an inverted water-tank pressure-relief valve, and so on.

Scanning for items in a store is a highly structured visual process that makes use of much conceptual information in the brain to rapidly interpret the massive amounts of visual data coming in. The data is sorted and filtered according to the concepts: horizontal shelves, and the vertical stacking of those shelves; shelves arranged in bays; the bays in aisles; the aisles in departments. The objects on the shelves have sizes, shapes, and colors, and these are used to index and chunk together the store items in an organized way.

For example, if you see a can of Glidden latex paint, which has an easily identifiable Glidden label, and your peripheral vision indicates that all the other objects on the same horizontal plane have the same labels, the same colors, the same sizes, and the same shapes, then there is an immediate, visceral understanding that this is a shelf full of
Glidden paint.
If you are looking for Behr paint, whose cans have the same shape as Glidden cans, but differently colored labels, or are looking for plumbing parts, which have a different shape entirely from that of paint cans, then a normal brain will immediately, through a low-level visual-symbolic process, remove all bays containing Glidden paint from the search. It is not necessary to look at
each
can of paint and try to decide if it is the object you are looking for.

With the kind of visual disturbance I suffered, searching for my plumbing parts soon deteriorated into a process that can be imagined as follows:

Take all four thousand objects that will pass across your field of vision when walking through the plumbing aisle and randomly place them in a large patch of open floor. Take the cardboard tubes from the middle of a pair of paper-towel rolls and tape them over your eyes so that you can only see what is directly in the center of your field of vision, and so that what you are seeing has no peripheral context at all. Now, for the first item on your shopping list, start walking through the store items that are randomly placed on the floor. For each object on the floor, pick it up, and without naming it, describe the
details
of it to your brain to see whether it matches the first item on your list, which you are now trying to find: the color, the shape, the corners, the texture, its mass, and any interesting features it might have. Taken all together, do these features constitute the
PVC elbow joint
that you are looking for? If so, then try to locate your cart and put the elbow joint in it. Otherwise, put it back on the floor. Having located the first item on your list in this way, move on to the next one.

Note that in walking through the four thousand items that are strewn about the floor there is no way to recognize whether you have returned to some spot you have already visited. There is no global field of vision. And, too, there are only the tiny component features (e.g., color, texture, angles) that make up the objects themselves: you've lost the ability to automatically translate these features of the objects into the gestalt of the “thing” itself.

As you grow more brain-fatigued, the tubes over your eyes get smaller in diameter, and your ability to
describe the features of the items to your brain deteriorates as well. You move ever more slowly. At some point what's known as
thrashing
sets in: you are taking so long to examine any one object that by the time you have gotten around to describing the last of its features to your brain, you have forgotten what the first features were, and you have to go back to refresh that part of your description—in an endless loop. Ultimately, you have to stop.

This is what it is like to go shopping for plumbing parts when you have concussion brain damage.

After five minutes of searching through shelves and bins, my head would start to hurt. After ten minutes I would have to hold on to the shelving to stand up. In twenty minutes the nausea would be problematic. After thirty minutes I would be almost completely unable to make sense of the visual scene, apprehending only the component features of items directly in front of me, in the center of my vision: a bit of texture, some color, a shadowing, an angle formed by the joining of two edges, and so on.

By this point I would lose the spatial sense of being “in an aisle” in the store. I would lose all concept of horizontal space, and could no longer see “shelfness.” I was moving in slow motion. I had to support myself by holding on to the shopping cart if I moved down the aisle.

Sometimes I could find a plumbing associate in the store who would help me find some of the parts. But this was tricky. If I asked them where to find an “inverter plate,” which was written down on my list but not something with which I was familiar, it might turn out that it was right in front of me. But if the associate said, “It's right there next to the green shutoff valves on the top
shelf,” it could be trouble. I couldn't rapidly retrieve the concepts of “shelf,” “top,” and “green,” and what a valve looked like (
valves? valve?—circular motion . . . , piston . . . , tubelike object . . . ?
). I would typically say something like, “I'm really sorry, but I don't have my correct glasses on, and can't see very well. Could you point to it?” But I did not
look
like a person who could not see. After pointing out two or three items, associates would get impatient with my slowness and drift off to help other customers.

At some point I would give up and head for the checkout counter, doing my best to appear normal. Several times, early on, I pushed myself too far, and had to leave my cart in an aisle and go to my car to rest. The sensory overload from the unfiltered sights and sounds was too much for me.

Lines at the checkout counter could also be problematic; once my body stopped moving I would get stuck, resting my head on the shopping cart and unable to move forward when a gap opened up. It was difficult to understand speech. If the cashier asked any questions about an item (“Is this washer galvanized?”), I just had them put it back, saying, “I'm very sorry. I don't want it now.” Over time I learned how to push myself just far enough that I could still pay for my items, find my car, and get home.

After checkout came what was often the most difficult part of a shopping trip, especially if it was during the winter and cold: finding my car in the parking lot.

I would stand by the exit doors, not having a clue where my car was, not able to get my legs to move, viewing the world as though everything were a mile away. I could make no sense of the spatial characteristics of parking lots after shopping: the grids, the compass orientation, the parking aisles, the colors and shapes of the cars. And because my memory of where I
had parked the car was stored using these low-level concepts, I had no idea where to look for it. I might wander around a parking lot for half an hour, examining the minute details of each car as I came up next to it, trying to decide whether it was mine. In the winter I was often freezing by the time I found my car. Then I had to wait a long time before my brain settled and I knew it was safe to drive.

I often thought longingly about those handicap parking spaces near the entrance of the store. Having a handicap sticker would have been such a godsend! But government regulations did not make allowances for a long-distance runner who was yet often unable to walk to navigate a parking lot after shopping.
*

NORTH SOUTH EAST WEST.
You will recall that on the day of the accident I had trouble navigating to the police station to retrieve my driver's license. Within a few days I realized that I'd completely lost my sense of direction, which had always been grounded in the North-South-East-West (NSEW) grid that can be laid over the earth. My former sense of direction had been so acute that I had once intuitively retraced my steps for fifteen miles, through entirely urban terrain, to a house in an obscure and anonymous neighborhood full of curving streets, which I had visited exactly once—when buying a car from a stranger five years earlier.
*

By contrast, my friend Jake had no NSEW grounding whatsoever. Before my concussion, our contrasting styles of navigation used to clash when traveling: Jake had a Garmin GPS device in his car, and always set it so that maps were displayed with north pointing
up
. This drove me out of my mind, and if I wore Jake down enough he'd relent and finally let me set the Garmin so that north pointed
north
. Similarly, if we had a map laid out on a table, Jake would set the map so north was facing up, away from him, but I would always turn the map so that it corresponded to the real face of the earth—even if it meant I was reading the words upside down. At a visceral level it was hard for me to imagine always being as lost in the world as Jake seemed, to me, to be.

When I lost my “perfect direction” sense in the moment of the crash, I lost all of my absolute grounding in the directional-symbolic world as well. This loss is much more profound than simply having to relearn how to get around the city, using a map. I found that many of the basic symbols of my intellectual-mathematical life had also been grounded in my directional sense, and having lost
it
I also lost important parts of
them
. Thus I lost foundational, elemental pieces that gave meaning to numbers, relations, analogies, and functions. I could no longer, for example, “see” the number seven in the same way, and when I tried to use it in even simple arithmetical calculations, I struggled. For me, the number seven had always in some obscure way stretched
east
, a component concept that no longer had any internal meaning.

I also had trouble with dreams. Ordinarily, it was my experience that dreams helped me work out—in a highly symbolic way—ongoing problems that arose during my waking life. But for me the linking between the two worlds—dream and
real—was highly spatial in nature, including
directionally
spatial. That is, formerly the concept of “north” actually
was
north—in my dreams and in the real world—and this was an important linkage between the two. In this way, for example, some dream-vision of a long green-lit corridor with a red-striped carpet, and through which I was walking, would
of course
be oriented northeast/southwest, because my conception of the corresponding real-world difficulty was also oriented in that diagonal way on the face of the earth—say representing a conflict between two friends whose houses lay in that particular northeast/southwest orientation. Although I continued to have the same types of shape- and relationship-filled dreams, I would wake up with the distinct feeling that they had taken place in a groundless, disoriented world, and could no longer be linked to real life in a way that carried meaning. Thus my dreams were often no longer productive in the same way. I'd lost the
perfect reference
in which I could work out problems.

But how hard this is to explain to a normal! There is no checkbox on a neurologist's form, nor is there a
DSM-5
code to describe this unsettling loss. “Doctor, do you have a diagnosis for me? I can't find north in my dreams anymore. . . .”

SLEEP AND THE VISUAL SYSTEM.
In addition to losing the NSEW grounding of my dreams, I had other visual/spatial problems associated with sleep, some of them surprising.

In previous passages we have seen that I learned to fall asleep with my eyes open, and in the first few months after the crash I had to resort to this often to keep from getting seasick once I closed my eyes. But sleeping with one's eyes open is not necessarily so unusual. Some parents reading this may recall
those times when they've checked on their babies at night wondering if they have a zombie child: sound asleep, staring sightlessly off into the distance.

Contemporary research, indicated by self-reporting but consistent with fMRI scans, suggests that people vary widely in how “visual” they are in their thinking. Some people create images in their minds that are almost as vivid as the deepest, most vivid dreams. A small percentage of the population reports not being visual at all in their thinking. I am toward the high end of the spectrum of visual thinkers. I made use of this predilection, for example, in my graduate study days, when I actively trained myself to enter a mild “lucid dreaming” state when working on the most difficult problems.

Similarly, there is a wide range in how much people dream. The conventional thinking has long been that people dream during REM sleep, and experience dreamless sleep at other times. But it turns out that some people also dream during the non-REM periods, and this is only sometimes associated with disorders. Prior to the crash I was at the absolute end of the bell curve of sleep dreamers: if I was asleep I was dreaming. Always.
*

My being a highly visual thinker, combined with the fact that if I was asleep I was dreaming, happened to be two parts of an unfortunately bad mix, especially during the first year after the crash. By the end of the day, the visual processing
parts of my brain were almost always exhausted, and were what most needed rest. But dreaming is primarily a
visual
exercise—especially so for a highly visual thinker like me. This meant that during the process of falling asleep I would immediately enter into my visually vivid dream world, and within a few minutes would become exhausted, nauseated, and completely disoriented—absolutely overwhelmed. When I was in this state, instead of going to sleep, no matter how tired I was, I had to sit and stare at some object five to ten feet away, doing absolutely nothing that would require the creation of any scenes in my head—any of the symbols of thought. (And although I didn't piece it together until later, it turned out that on days when I did not have to make too much use of my eyes for balance, I could often sleep in the normal way.)