The Ghost in My Brain (16 page)

AUDIO SLOWNESS.
One of the profound capabilities we have is turning sounds into words, words into images, and both images and words into meaning. Most of us do this effortlessly throughout the day, and at least part of the time when we are dreaming at night. If we stop to think about it, it is actually a nontrivial computation to turn, for example, the
sound
of the word “dog” (the phonemes) into the word
dog
, into an image of the written form of the word
d-o-g
, into an image of an
actual dog
, and into the conceptual
meaning
of dog-ness. Along the way we might also have picked up, from the context, that we mean
our
dog, with her attendant images, relationships, emotions, and history.

But we can perform such transformations, in all directions, without thought, seamlessly. Unless we get concussions, that is. Then the system breaks down. In the years before treatment, I
became a walking laboratory for studying not only the minute details of human audio processing, but also the complex interactions between our hearing and our visual/spatial systems.

Studies in cognitive science have shown that trying to process two simultaneous aural streams at once—specifically one that is retained in memory and a live one coming in through the ears—is challenging for anyone. For concussives, who because of audio slowness may often be trying to play catch-up by buffering what was previously said and simultaneously trying to process that information along with what is currently coming in through their ears—and who are also by the way particularly stressed by doing two things at once—this is a recipe for disaster. Thus the real-time processing of speech is a serious and ubiquitous challenge for them.
*

Here is how it worked:

I am listening to spoken conversation (including over a broadcast medium). I hear the first sentence, and am trying to process it in real time. But the speaker is moving too fast, and my ability to retrieve the symbolic images representing the speaker's meaning starts to lag behind. By the time the second sentence is being uttered I have not completely made sense of the first sentence. So now I have to either buffer the
sound
of the first sentence in memory briefly (a form of what is known as the
articulatory loop
) as I work through the
phonemes to figure out what they mean, or translate the sentence into an associated visual image of the words. But while I am still processing the first sentence in this way I have to simultaneously listen to the incoming sound of the second sentence being spoken.

To make matters worse, as I fall farther behind, I automatically start using
error-correction
algorithms to fill in the blanks for words that I have lost—and this is complex processing that uses up a lot of additional cognitive resources. So now we have at least
three
real-time tasks running at once: continuing to listen to the current audio stream, buffering and reviewing what was already said, and error correction on both of these interference-damaged audio streams. At this point cognitive meltdown is not far off: the size of the buffered material spirals out of control, and soon I cannot keep up.

Importantly, my ability to filter out sensory input also fails, so the incoming words can't be tuned out, and the system can't be turned off. Nor can I stop attempting to process the input, no matter how painful it becomes. Nausea sets in, and the incoming words and phrases become like little hand grenades setting off these cognitive explosions in my head. At this point social difficulties arise. The only remedies involve physical actions like hanging up the phone on someone, leaving the room, covering my ears, and begging the speaker to stop talking—social gaffes I am forced to commit many hundreds of times over the course of my injury.

I had an accurate gauge for the change in the speed of my audio processing: Prior to the crash I had no problem listening
to baseball scores as reported on the radio. The announcer would read through teams and scores, usually putting the winning team first (“The Phillies, at home, beat the Reds today eleven to two”), but sometimes mixing in other reversed forms for variety (“The Giants were blanked seven to nothing by the Cards at Pac Bell Park”). Immediately images of the teams, their colors, their parks, and maybe some of their stars would come to mind. My encoding of the winning and losing teams was spatial, with the winning team higher up in my mental image than the losing team. Additionally, I placed the teams geographically, not only within a mental map of the United States, but also on the NSEW grid, relative to my own current orientation. (That is, if I happened to be facing north, I could automatically point right [east] to where the Phillies and Reds played.) Following the crash, I'd only be able to make sense of perhaps three of twelve scores, and I had no geographical grounding for any of them.

Phone conversations (which importantly take place through only one ear) were the most taxing—especially via badly digitized cell phone audio streams. Speech that additionally placed specific kinds of cognitive load on me were also difficult, such as the metaphor-filled and highly intellectual sermons given at the church I attended with my children.

SPEAKING STYLE.
The speaking style of a person was also critically important in determining how hard it was for me to manage a conversation with them. My friend Mary spoke in precise, descriptive language and was easy for me to follow: “Anne, Brian, and Sarah came to my apartment at seven thirty just after I had finished dinner. We sang four madrigals by de Lassus.” My friend Frank was much more of a challenge. He is
smart, broadly read, and has profound reflections on many, and varied, subjects. But he tends to use imprecise language, often interspersed with ambiguous placeholders. Taken together these are a difficult combination. He might say, for example, “We were thinking about jazz groups, so I thought we should just do it. I went into the store and bought some stuff that you might like, such as Miles Davis, and I could send the thing to you.” Prior to the crash, I could queue up the placeholders “do it,” “stuff,” and “thing,” until I figured out what he was talking about. After getting the concussion, I couldn't. I would follow him up until the phrase “do it,” then just lock up, waiting for a picture to emerge. In the meantime I had to queue up the ongoing audio stream of what he was saying. The multitasking required to sort it all out was often very fatiguing.

I also had two very specific difficulties in holding conversations with my mother, who lives in northern California. In the years since I left home, my mother picked up the habit of taking a bite of food, and then talking. When she talked with food in her mouth, the altered phonemes supported only approximations of the words she was speaking. Normals would have little problem apprehending her original meaning—performing natural error correction—but as a concussive I fell further and further behind in trying to parse her food-damaged speech. I was easily overwhelmed. I often had to get up from family gatherings and leave the room in a hurry, which was embarrassing for everyone.

More important, my mother has trouble retrieving nouns. She will start a sentence and then pause while she is trying to think of the label for whatever it is that she is talking about. While this problem tends to progress with age in many people, in my mother's case, somewhat ironically, this speech
pattern started when she fell off a horse as a teenager, fractured her skull, and suffered a concussion. My mother might, for example, say, “I am going down this afternoon to get the . . . [long pause] . . . brakes checked on my truck.”

Because of the damage to my audio processing, I was already hypervigilant about gathering in the audio stream to form it into symbols, and especially wary of symbolic “dropouts” from parts of the stream simply lost because of the slowness of my processing. During the pauses in Mom's speech—when she was searching for a label—I would work particularly hard to “fill in the blank,” even though it was not intended that I do so, and even though, in most cases, there was no possible way I could.

The problem was, there were already so many things that I really
did
miss in the audio stream that I
had
to be hypervigilant: when something seemed missing, I would immediately fire off a background daemon to try to find out (a)
where
the piece of the conversation was missing, and (b)
what
it was—then have it get back to me with that information. Unfortunately, with my mother's pauses, although nothing was missing—and it would be appropriate to just wait—at an important processing level, I didn't know this; it was too similar to the ongoing instances when concussion damage did continually cause me to drop out parts of the audio stream.

The result of this cycle was fatigue. I would often reach the point of simply having to abruptly end phone conversations with her. I love my mom. She is also fascinating to talk with. (How many eighty-year-olds read a nonfiction book a day, then try to fit in their three-mile run, and a trip to the Curves gym before they go down to give a piano recital for the “old people” at the local nursing home?) It was never that I did not want to talk with her, but this was understandably not always
clear to her. It is socially awkward to have to hang up the phone on your mother.

I would coach my mom to “think first, then speak” so that she would not start to talk until she had already fully retrieved everything she was going to say. This helped, and my mom was willing, but it was an ongoing problem for us—communication between one concussive and another!

JOKES.
The audio stream works in both directions, of course, and in my case this highlighted an interesting phenomenon. I generally had much less difficulty
generating
speech than I did understanding it. This was most obvious when trading jokes with a group of people: I could tell jokes without much trouble, yet was often almost completely unable to understand them.

Telling jokes is a creative activity, and generative in nature. It involves memory, creativity, sensitivity to one's audience, and a sense of timing. Because concussion requires so many inventive workarounds each day, a concussive's creativity gets a lot of exercise.

Understanding jokes, on the other hand, requires deductive reasoning, and often the comparison of more than one thread of thought at the same time. It is the odd juxtaposition of these multiple threads (such as in multiple meanings in wordplay jokes), often processed within a certain time context, that make the jokes funny. In addition, a joke teller will time the delivery of the joke to match the processing speeds of her listeners.

After getting the concussion I was often not able to follow a joke, or “get” it. It turns out that the understanding of jokes is a very specific listening/brain skill.

First, as above, I would lag behind in my ability to keep up with the audio-to-symbolic translation of the input signal, and
would thus lose pieces of information. But jokes typically depend on the teller giving just
exactly
the right amount of such information: give too little, and listeners do not have enough cues to work out what is odd—they miss the point; give too much and there is no suspense or moment of surprise.

Second, I was not able to process more than one piece of information at a time, and even if I did catch up, it was not with the natural timing that a normal would use. When the timing is thrown off in this way, and the abstract double-meaning information that has to be just hinted at in the right way is missed, the joke is difficult to understand. If the revealing of a double meaning is made at the wrong time, a joke is not funny.

So when friends and family would gather around after a meal and tell jokes, I might tell a good joke of my own, then spend the rest of the time tuning out, smiling when others smiled, and laughing when others laughed—but I mostly didn't have a clue what they were talking about. The following table illustrates how a damaged audio stream can particularly affect the understanding of jokes:

A concussive's life is socially complex. In general, people won't understand what a concussive's limitations are. There are a number of reasons for this: Many concussives will not, themselves, fully understand what has happened to them. Those who do may very well be attempting to hide their symptoms from others anyway—trying to restore as much normalcy to their lives as they can. Then there is the strange feature—disconcerting to others—of the concussive being almost completely normal one moment, and then quite incapacitated a few minutes later.

It was my common experience that people—including both those who knew me well and strangers—saw my concussion symptoms as just
weird
, and also, in some global way,
annoying.
To be honest, their reactions were probably quite
reasonable: my symptoms
were
weird, and often caused me to act in ways that under normal circumstances would be inexplicable. It was often difficult, if not impossible, to explain to others what was happening to me. People were naturally likely to account for my behavior in the way that made the most sense to them—that I was drunk, that I was difficult, that I was rude. Of course, that's what we all do—we try to explain the world by using what we know of it. Unfortunately this led to repercussions in my life—some of them bizarre.

RAMON'S BRAKES.
One day, I was playing baseball with my son in the front yard. Predicting the visual path of the white baseball—against a backdrop of bright green leaves shimmering in the sunlight—was fatiguing. My cognitive and sensory filters were breaking down. But my son had just started playing in Little League, and I knew it was very important to him to practice, so I forced myself to push through my discomfort.

As we were playing, Ramon, an older man from the neighborhood—a casual friend of mine who would sometimes come by to talk about politics and neighborhood concerns—pulled his car up next to me to tell me that he wanted me to trim my bushes at the corner of the alley. His eyesight was starting to decline, and my bushes further impaired his view when he made the turn into the street. Unfortunately, his old car had terribly squeaky disc brakes. Because of my phonosensitivity I keeled over onto the street in fetal position, covering my ears to shield them from the painful screeching sound, before I could hear what he had to say. He got mad and drove off. Variations of this same difficult episode happened twice more that same week, and the last two times Ramon was yelling at
me as he drove off. I made a mental note to go over to his house on the weekend and ask him what had been on his mind.

But I was too late. Ramon got up early on Saturday morning and cut down all of the young trees I had been cultivating for five years along the side of my yard, which had nothing to do with the bushes at the end of the alley. When I noticed what he was doing, and leaned out the window to ask him to stop, he shouted insults at me at the top of his lungs for my children and neighbors to hear.

I later went to his house to talk to him. After getting him to calm down, and apologizing about the bushes, I asked him why he was so angry—surely those bushes, which we both agreed hadn't reached a sight-impairing point yet, couldn't have been enough to make him cut down my trees and scream obscenities at me!

His face got red. You could see he was getting mad all over again, though he kept it in check because his wife was there.

“You started it!” he accused. “Why did you have to be so rude? I kept my cool that first time you made such a big deal of not listening to me, covering your ears, and lying in the street like a big baby, in front of your boy. I never saw such a thing! The second time you did it I couldn't believe it. Who the hell acts like that, like a spoiled little kid, closing your eyes, covering your ears? What did I ever do to
you
that it is so important you can't take three minutes to listen to what I have to say? The third time on Friday was too much. I decided to teach you a lesson. You're an asshole, is the thing. I guess, what did you expect?”

Even though he listened—suspiciously—as I tried to explain about the brain damage and the squealing brakes, he
didn't really get it. He pointed out that I seemed fine when I was tossing the baseball to my son, and although in the end he apologized about the trees, it was obvious he didn't quite believe me. By now I could easily recognize the half-glazed, half-skeptical look that meant I was being given a little leeway, but no real understanding. Despite the mutual apologies, after that he was no longer friendly toward me when we'd see each other around the neighborhood.

Ramon was a grumpy old guy, sure. But in many ways he was a good man, and someone that I respected for his life of both conviction and action, which I knew about from the chats we used to have. It was not pleasant for either of us to have this friendship end so badly—another casualty of the concussion.

SCANNER BEEP.
At Food 4 Less, a local grocery store, I often had trouble with the loud
beep
from the checkout scanners after the difficult visual pattern matching required when shopping for food. When I asked clerks to turn down the volume, they would generally look at me like I was nuts, and refuse. The problem was that I could not load my groceries on the belt when the clerk was scanning other items, because I had to use my hands to cover my ears. I also could not bag my groceries if the clerk started scanning the groceries of the person after me in line, using the alternate bagging area.
*

One evening—after I'd gone without food for several days because I'd had to abort two previous shopping trips due to debilitating concussion problems—I was in the checkout line
at Food 4 Less and again having trouble with the scanner beep. I was getting desperate, and because I just couldn't make the clerk understand my situation, I finally refused to swipe my credit card until I had my groceries bagged: if the clerk started scanning the groceries of the next customer I would not be able to finish bagging my own. Each
beep!
caused me to double over with pain. My motor coordination had deteriorated, and I was on edge because I knew everyone was waiting as I labored in slow motion with my groceries.

When I finally got outside—it was hard to move my feet—I could make no sense of the parking lot. While I was standing there wondering where my car might be, and how I could find it,
Bang!
My shoulder exploded in pain. I spun around to see the very angry face of the man who had waited behind me in line—he had punched me in the shoulder. His fist was cocked again, and it looked as though he was now going to hit me in the head. Instead he yelled something in Spanish, then walked away.

One afternoon the following August, I was again debilitated from food shopping, and had given up after buying just a few essential items that I was now carrying with me. I was walking in slow motion back to my car in the parking lot: left foot, right foot, trying to make sense of the visual scene around me. A young professional woman walked briskly past me and got in her big SUV, parked a short way down the parking aisle. She jerked back two feet, the way people do when they are in a hurry, moving her SUV out to get a better view and to alert others that she was backing up, before finishing the arc of her backward turn into the aisle. But I was now directly opposite her car. She looked me in the eye in her large side-view mirror. When she saw that I was walking slowly she glared at me, then
started mouthing angry words—I guess thinking I was “slow-walking” on purpose, just to be annoying. She jammed on the accelerator pedal and as the car shot toward me, I just managed to jump out of the way, sprawling on the hot pavement, with my groceries flying in all directions. She then sped away, tires screeching. This was yet another case of “brain tax,” the social penalty of concussion: A woman got mad because I was not acting normal. She assumed I was being aggressive and adversarial, and responded in kind.
*

LECTURES.
There were social aspects of my job that were troublesome as well. For example, attending academic lectures was a necessary part of my work as a professor but quite treacherous for me.

In a typical scene, several years after the crash, I attended a job talk for a vacant faculty position. I was following PowerPoint slides along with twenty-five of my colleagues. Ten minutes into the talk,
audio slowness
set in, and I began to lose my ability to filter out unwanted sensory information. In addition to forming the complex mental images representing the new research being presented, I was also constructing the judgment that for technical reasons this lecture was not very well formed—and this was important because it was a job talk, and I'd later be called on to decide whether this candidate would be a good teacher.

Taken all together, my limited cognitive resources were rapidly draining away. I had to time this just right. I needed to stay as long as I could manage, because assessing these candidates was part of my job. But if I stayed too long, I'd be unable to get out of the room without causing a disturbance—an uncomfortable faux pas given how important this talk would be for the candidate. It would be bad if I had to stop the lecture and ask someone to help me from the room. It would be almost as bad if I had to cover my ears and stagger out on my own.

The problem was the cognitive overload from my having to manage so many independent symbolic streams of thought, and my inability to filter out the unwanted sensory input. I'd hear words from the speaker; I'd hear words the speaker had already said but which were still queued up for processing; I'd hear the squeak of a chair next to me; I'd see candidate words for audio error correction in front of my eyes; I'd hear myself judging the candidate's teaching abilities; I'd be rewriting the slides the way
I
would have done it for clarity; I'd see shadows on the floor; I'd see color patches of clothes; I'd hear the tick of the wall clock, and so on. I'd soon be managing head pain, and nausea, and trying to keep my balance in my chair. But I couldn't stop any of the processing, or shut out any of the raw input.

Over time I grew crafty at managing such lectures. I'd sit in the back where I could surreptitiously put in industrial earplugs, and close my eyes, to get a break from the sensory input. I'd make sure to be near a wall so that I could hold on to it for balance as I snuck out. If a video was available I could watch it later. I'd try to let the speaker know ahead of time that I would not be able to stay for the whole lecture.

In general, if I was rested I could manage about twenty-five
minutes of a lecture before reaching the danger zone when I could no longer walk.

ODD JUXTAPOSITIONS.
Besides the constant worry that I'd have to explain myself to others or risk seriously offending them, there was the added concern that some malicious person would use this information to take advantage of my defenselessness. And I did encounter such people in my life. I had to be always alert, though I often could not understand exactly how I was being exploited, and could not form any real plan to protect myself. At the same time, the only way for me to survive
in general
was to give in, and, at those times of almost childlike helplessness, blindly trust others to help me get by. This juxtaposition was complex for me emotionally as well as cerebrally: a mixture of trusting, acceptance, and a hoped-for recovery on the one hand; and of watchfulness, unrelenting vigilance, and helplessness on the other.

Additionally, everyone, including me, had trouble figuring out my place when I was to cooperate with others: could I be trusted to get the job done? As a high-functioning concussive I had this strange aspect to my life: On the one hand I was helpless and rather stupid—unable, for example, to manage even the simplest kind of planning. On the other hand, I was performing brilliantly, and with stunning creativity, from the moment I woke up until the moment I fell asleep—just to find a way to get through a normal day. In the end I became reluctant to make commitments, something that may be common among concussives.

STUCK IN THE MOMENT OF IMPACT.
When visiting Jake in San Diego, I happened to read a book by John Conroy that he had
on his shelf, about victims of torture in the seventies and eighties. Among other topics, the book raises the issue of the long-term effects of torture, based on interviews with victims. Our cultures and our lives were very different, yet I felt a strong, elemental kinship with those victims on a human level that led to an arresting epiphany.

Although my experience was certainly nothing like what these survivors had had to endure, it struck me how much we nonetheless shared in one very particular aspect of our lives: in one important way, the voices in this book spoke for me as well. In the cases covered in the book, the torture had been exposed, and those responsible had been found accountable, at least by the public. The story had come out.

This was, of course, important and cathartic for the survivors, after all the years of living with public denials of their horrific experience. But then a strange thing happened. The hubbub died down. Everyone seemed to agree that the problem had at last been handled. Everyone else moved on, including the torturers themselves.

But the survivors did not.

Despite the social acknowledgment of their suffering, and a resultant lessening of their outrage, the
neurological trauma
was still with them just as strongly as before, and something they had to deal with every hour, and every minute, of both their waking and sleeping lives.

I often felt that way too: the rest of the world had wrapped my brain damage up in a neat little explainable package and moved on . . . but very deep down, in the lowest level of my neural programming,
I hadn't.
Neurologically, traumatically, I was still stuck back in that moment of impact in September 1999.

The fact of my much later stunning recovery, which included being freed from the imprint of the original trauma, suggests to me that such dual treatments as I underwent—each of which, as we'll soon see, addresses deeply elemental features of
cognition
—might similarly help victims of deep
emotional
trauma, which can itself cause physical and neurological traumatic injury to the brain. Perhaps they could then move on too.