The Ghost in My Brain (15 page)

So I shut everything down and sat in the car for a long time, staring at the Supra logo on my steering wheel and doing absolutely nothing.

Finally, sufficiently restored, I called Jake and told him that I was going to head west, away from the lake, and hope for the best. I stopped the car every few blocks and gave him an update. Eventually he pinpointed my location on Greenleaf Street, about a mile from my house.

An hour after leaving the lakeshore—more than two hours after leaving the theater—I finally made it back to the block where I lived. Jake stayed on the phone with me and guided me house by house down my street—a neighborhood I had known for twenty-five years but now seemed to be visiting for the first time. I had been so intent on getting home that I wasn't prepared for what followed: I didn't recognize my own house. There was no “home” at which to arrive. My heart started racing. Now what?

“Look, Jake,” I said as I struggled out of the car, “this is really getting out of hand, and definitely scary. What if we've screwed up, and this is someone else's house? I need some kind of cover story in case I'm caught in the yard and some guy comes out wondering what I'm doing here.”

Jake said, “Okay.
Just tell them that you are looking for your dog.
” The particular wording of his statement would later prove to be of seminal importance.

I walked up to the silent house, and verified the address with Jake. I struggled to get the key in the lock, but once in, it worked smoothly, and I was able to open the front door.

I sucked in my breath, and with the same feeling you would have breaking into someone else's house at night, I walked into the darkened living room. In a hushed voice I described the interior of the house to Jake, which included, rather distinctively, two pianos. Given the pianos, and the empirical fact that my key fit in the door, there was no doubt whatsoever—intellectually—that I was in my own house. But I felt none of the transformative and critically important
certainty
that would have been so effortlessly generated in a normal.

I went into the music room and sat down next to my record collection. I could easily have told you which pressings (indicated by the hand-etched lettering near the record label) of Rubinstein's
Carnaval
recording I had on the shelf, or described the sonic qualities of my original Reginald Kell Brahms Clarinet Quintet recording. My memory was fully intact. But without low-level apprehension of the visual/spatial
meaning
of my surroundings, I had no way to interact with them, no way to feel the place for them in my world. I didn't know what to do. I started to wonder where “my dog” was.

“It's like I've never been in this house before,” I whispered over the phone. “I don't recognize anything, and I'm particularly worried that I don't see the dog.” Jake had reached his limit. Satisfied that I was home, he understandably wanted to get back to work.
“Don't worry about the dog!”
he said impatiently before he hung up. Again, his choice of words proved to be important.

I sat for twenty minutes in the dark room, fretting. I was loath to go upstairs and see Qianwei and the kids, because of the nightmare scenario in which I would not recognize them either. After all, I already didn't recognize the house, plus I had no memory of our dog. Why couldn't I remember him, or her?

I knew that we didn't really have a dog, and that this was just a cover story Jake had provided, at
my
request, in case I had actually ended up wandering around in the wrong yard. I knew exactly why we had invented the story, but
could not access that information
in a useful way. Jake had said, “Just tell them that you are looking for
your
dog,” and “Don't worry about
the
dog.” Linguistically each of these implies that there
is
a dog, and having retained Jake's utterances, I could not make this “knowledge” of the mythical dog go away. In my current brittle cognitive state, because it was more current, this linguistic knowledge was interfering with my ability to access my historical knowledge that
we had no dog.

When I found myself in novel states like this, it was important for me to figure out exactly what I did know, and exactly what I did not know. Making sense of the data from these kinds of episodes allowed me to build strategies to effectively “fake it,” and thus cover up my deficits in the future. My inability to remember the dog was particularly troubling, because this was a failure I'd never encountered before, and I was now wondering whether I needed to permanently add this scenario to my stockpile of “concussion problems for which I had to be prepared.” I had no strategy for working around a dog—as in, a member of my family—that was simply
gone
from my memory.

I reasoned that even if I had managed to more or less sneak into the house, surely the dog would have barked, or come to see me. I was losing coordination in my hands but I managed to press speed-dial five and call Qianwei upstairs in the house.

“Hey, Clark,” she said. “When are you getting home?”

“I think maybe I already am home,” I replied.

“What? What do you mean? Where are you?” she asked. I couldn't figure out how to explain.

“It's okay, sweetheart,” I told her. “I'll see you soon. Say, can you tell me what our dog looks like?”

Qianwei was taken aback. “Huh?” she said. “What do you mean? We don't have a dog. Look, can I call you back? I am watching something on Chinese TV that's about to end.” Then she hung up. So now, not only did
I
not remember what our dog looked like, Qianwei didn't either. This made things even harder for me to work around.

With some effort I managed to press speed-dial nine to call my daughter Nell on her cell phone. (She was downtown at a concert in Grant Park.) I reminded her that the next day was her mother's birthday, and to be sure to call. I then casually asked her what our dog looked like. Exasperated, she said, “Dad, we don't
have
a dog.” So I let her get back to her concert. I found out later that her friends thought I was drunk.

This had now become a real problem. I had no clue how to work around it:

1. I did not remember the dog. And not only did I not remember the dog, but I also did not have the sense that I actually
did
remember the dog, and was just unable to make use of the information—a problem that I knew well. Instead, I had a total blank spot where the dog should have been, which was new to me.

2. I was used to relying on all sorts of cues to help me “fake” getting through difficult situations. One of my heuristics was that Jake was generally expert in all areas in which he claims knowledge. He is brilliant, extremely well informed, and precise. When I had asked Jake about the dog he had not said, “You do not have a dog,” but instead had said,
“Don't worry about
the
dog.” Linguistically this implies that I
had
a dog, and that I was instructed not to worry about him, or her. Jake had gotten me home. Jake was the expert.

3. Qianwei and Nell had told me we didn't have a dog, but this didn't explain away
Jake's
“dog,” for which I had already formed a cognitive imprint.

4. Although completely losing all memory of
our dog
was novel, I was still used to the general problem of all kinds of strange things happening to me, wherein I had to adjust to my own deficits while at the same time mostly hiding them from others.

5. But Qianwei and Nell did not remember the dog either. How should I deal with this? I didn't know how to reconcile a world where not only did I not remember important information (or could not access it), but other people developed the same deficits as well.

It was as though I were revealing some under-the-hood construction of the universe in which other people were really me, or connected to me, in some nonphysical “we are all the same person” way—like tendons under the skin of the physical world, like Jung's collective unconscious. Examining such underpinnings of the world, and considering the structure of how it was put together, was something that I had to do all the time, just to get by. In compensating for my concussed brain, I often had to piece together reality from the kinds of detailed input that everyone else just filtered out without thought.

But this enigma was different. I just couldn't “get” it, and I couldn't let it go either. It was too important to ignore. In a downward spiral, I pressed my exhausted brain even further,
forcing it to create the symbols of thought, trying to make sense of it all. In the end, out of desperation—struggling with the last of my brain power to manage the geometry of pressing speed dial six on my phone—I called Jake one last time.

“I'm sorry. I'm sorry!” I said, forming my words with difficulty. “I just can't get this dog thing, and it is so extremely unusual that I feel I have to get to the bottom of it. I fear that I am finally losing my grip on reality. Not only can't I remember anything about the dog—which would be unusual in itself—but Qianwei and Nell can't remember the dog either. Somehow I have ‘infected' them with my brain damage. I don't know what to make of it.”

Jake said, “Really: don't worry about it, Clark. You
don't
have a dog. We just made up the dog so that you would have a story in case it turned out to not be your house, and some old bald guy asked you what you were doing in his yard.”

Jake's “You don't have a dog” contained no information that I did not already know. Nonetheless it changed my current
linguistic
knowledge of the world in a way that allowed me to access that information, and finally allowed me to sew the pieces together.

I went upstairs and fell asleep next to Erin, who was crashed out on our bed, and whom—thankfully—I
did
recognize. Qianwei came in from watching TV a few hours later, and I recognized her as well.

I was more or less normal the next morning, noticing only a distinct increase in the misuse of words when sending e-mail for my work. I was also able to reconstruct the memories of what had taken place the day before with a great deal of accuracy, and from them made these notes. Because it was such an interesting episode, I verified everything against my phone log, and by retracing my steps through the drive home.

There are low points with concussion, but there are amusing times as well. Here we will touch on one of the low points—concussion pain—which none of us likes to think about. But then we'll look at the other side of this life adventure too, examining one of the many bizarre episodes that ultimately were just so quirky as to be funny.

PAIN.
Pain, relative to concussion, comes in three forms: the head and neck pain that comes with thinking, nausea, and the intense pain of sensory overload.

My form of head pain originated inside the top of my head and spread over the sides of my skull. Neck pain was intense, starting underneath the base of my skull and then extending down along the thick muscles that connect to my shoulders.
This neck pain was felt as an undifferentiated, throbbing ache that would not go away.

In the first months after the crash I had head pain from when I first rose in the morning until I went to bed in the evening. It often woke me up at night. Later that first year it went away—unless I had to
think
, which of course was relatively often. I went through several large bottles of ibuprofen to help with the pain, which over time led to a minor stomach ulcer.

I am lucky to be pretty good at dealing with pain. For example, I haven't bothered with dental novocaine—preferring to deal with the pain using meditative techniques—though I've had a few fillings and four dental caps over the years.

But concussion pain is significant. I learned to go to the 7-Eleven store near my house to get a large bag of ice if I was going to attempt, say, balancing my checkbook, or working out the geometry for building a dormer in my house. For certain kinds of mental challenges requiring the manipulation of symbols, such as even simple arithmetic, I would start to get nausea and head pain within about five minutes. Within ten minutes the pain was so intense that it was hard to keep going. At the twenty-minute mark, depending on the task, I would be gritting my teeth, sweating and shaking. But sometimes the work just had to get done, and I had no choice but to persist.

While I was working, I would have had the bathtub filling with cold water. When the pain got so bad that I couldn't push through it anymore, I would empty the ice into the tub, take off my clothes, and lower myself down into the ice water to freeze the muscles in my head, neck, and upper back—thus getting at least some relief. Lowering yourself into an ice bath is . . . inconvenient. And it doesn't get easier over time. But it was better than the head pain.

As discussed, the link between our bodies and the muscles that control our eyes is complex: with even a minute change in the orientation of our head we adjust our eyes to keep them stable with respect to the environment. When we think (e.g., multiply two numbers in our head, or try to recall the name of our second cousin), our eyes move in response to our thoughts. When these feedback systems, and others like them, are damaged, signals to the body may get crossed, and muscles can get knotted up.

At least some of my distress may have been caused by what later turned out to be problems with the integration of my 3D spatial hearing—which the body uses to manipulate the spine, and turn one's head toward objects that are of interest; and my 3D vision—which also places objects within the space around us and which fine-tunes movements of the spine, neck, and eye muscles to bring the object into focus. When these two systems don't agree, the signals to the muscles conflict, and, again, the muscles may get tied up in knots.

The second type of concussion pain, nausea, could be brought on by any number of things. For example, as we have seen, when I had to think about anything that required internal visualization, when I had to perform two tasks at once, or when I had to overrely on my eyes for balance, I would experience nausea. Most of the time it was my tolerance for this nausea that was the limiting factor in how long I could work.

The third kind of pain can be even more intense than the nausea, and is hard to describe to someone who has not experienced it. It comes from cognitive or sensory overload—often from unfiltered sensory input that cannot be turned off, but sometimes just from the act of thinking, which is itself, of course, a highly visual process. In my case the worst culprits
were auditory input such as spoken text that demanded visualization of
meaning
as the audio stream was translated into the internal symbols of thought; complex visual patterns that had to be sorted out, such as making sense of grocery store shelves; trying to perform two or more tasks at once; and last, simply thinking about anything of even marginal complexity. In the first few months bright lights were a problem. Loud sounds—especially if they were high-pitched—were always a problem and could leave me doubled over, holding my ears. In extreme cases, overload from such relentless sensory input is torture—like having a bell lowered over your head while someone beats on it with a sledgehammer, while at the same time someone else is shining a searchlight in your eyes, and filling your nose with sulfur fumes. When this happens, the only thing you want to do is curl up and hide, or run to get away from it, in a purely primal, brain-stem way.

After recovery, and as the concussion problems went away, it became quite clear how the continual presence of pain in my life had just ground me down over time, sapping my energy and taking out some of the cheerfulness of waking up each day. I am glad to be rid of it, and my heart goes out to those with head injuries who have to deal with this in their lives.

But even if life has some challenges, it is generally better than the alternative! If we are going to consider the downsides, we should also consider, as well, the gallows
humor
that would sometimes arise from how ridiculous some of my symptoms became.

RULE FOLLOWING.
Before he moved to San Diego, Jake and I would go out to eat every few weeks. In general, going out requires that many decisions be made: what time to meet, where
to meet, what type of food, which restaurant, who is driving, where to park, what to order, where to sit, and so on. This is a potential nightmare for a concussive who has lost the ability to
decide
. So, knowing of my difficulties, Jake would make the decisions for both of us. I myself got in the habit of simply following rules at such times, which, to a large extent, obviated the need to make choices. For example, I might use the rule to always work from the top of the menu and order the first acceptable entree to avoid having to decide what to eat.
*

One evening Jake called up. I told him I was available, so he said, “Okay, we are going to eat at
Tiffin
on Devon Avenue in Chicago. I am driving. I will pick you up at seven thirty. I will order for both of us. Be ready in an hour.”

I had had a long day. My brain-batteries were drained. Consequently I intentionally placed myself in rule-following mode, to avoid getting locked up over any decisions that might arise. I would follow internal scripts, and was prepared to accept imperative commands from both Jake and myself.

Devon Avenue is the center of a large ethnic Indian neighborhood in Chicago. There are many small stores with bright displays of Indian clothes, specialty groceries, Bollywood videos, and so on. An endless slow-moving traffic jam chokes the streets, and pedestrians crowd the sidewalks. It is a visually taxing environment, and to traverse it I stuck very close to my script, which included the idea of mindlessly following all the rules of eating out.

After we had left the car and walked a block and a half
toward the restaurant, I stopped in the middle of the sidewalk, frozen in place. Jake doubled back.

“Come on. What are you doing?” he asked. He was peckish, and annoyed.

“I am trying to
not
go into that store,” I said, indicating one of the many stores whose windows were stacked high with cheap electronics.

“Why would you want to go in there?” he asked. Jake was understandably puzzled.

“I don't!” I said. “That's why I'm trying to not go in.” I was concentrating heavily—working hard, staring intently at the store, but—except for being able to speak—still frozen in place. I nodded toward the door and said, “Look.”

Jake looked up. On the door was a prominent sign that said
COME IN
!

“I'm trying not to go in,” I said again. “I'm just able to keep from doing it, with effort, but I'm not able to make my feet go down the sidewalk.”

The problem, of course, was that I was in rule-following mode, and the sign was giving me instructions:
COME IN
! To
not
go in, I had to violate the instructions. This was proving difficult for me to resist, and impossible for me to ignore.

“Why don't you just walk past it!” exclaimed Jake. “You're an idiot!”

“It's true,” I responded. “I know exactly what is going on. I
know
that that is just a stupid sign put out to attract pedestrians into this store. I know that I don't want to go into the store. I know that all I have to do is move my feet and walk past it. I know that I am in rule-following mode so that I can get through dinner with you despite having this concussion damage. But none of that helps. I still can't move, except into the store.”

As usual, I also felt guilty. But the truth of it was that, once again, there was nothing I could do. People with stage fright, or motion sickness, also understand exactly what is happening to them, but they can't stop their own symptoms from occurring either.

I started laughing at the ridiculousness of the situation, which at first annoyed the hungry Jake further—he was quite
enthusiastic
in his response when I suggested he give me a push. But soon he was laughing too, and I took some good-natured ribbing about it later during dinner: “What a brain-dead moron! Do you also need me to cut up your food for you?”

Once I had placed myself in rule-following mode it was difficult for me to make the transition out of it. By contrast, the healthy human brain can switch in and out of rule-following mode in the blink of an eye and with no effort whatsoever.