The Ghost in My Brain (18 page)

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On one occasion, in August 2001, I temporarily lost part of my vision. I had gone to a carnival with my sister's family and my kids. I was reluctant to go on any rides where there were g-forces other than normal because of my balance problems, but on this occasion there was social pressure to go on a roller coaster so that one of the kids—who needed an accompanying adult—could go. Against my better judgment I went on the ride with him.

Afterward I lost the vision in my right eye. It was not that my eye went black, but rather that I simply could not process any information from it. I couldn't see at all, and my head hurt in a way that I'd not experienced before. This was scary. My vision was gone long enough that I feared it was going to be permanent. Fortunately, about an hour later it came back and the headache gradually receded.

RUNNING: HOW THE BODY FOLLOWS THE BRAIN.
The notes on my marathon running during this period yield some unique supporting data for the power of
visualization
in controlling our lives and our bodies. I believe this has far-reaching implications.

To set the context for understanding why my own experience was important we can consider the thesis of Timothy Gallwey's book
The Inner Game of Tennis.
*
In it, he talks about
the idea of
seeing
oneself succeed as being the most important component of improving one's game. Similarly, in numerous interviews with sports stars like Michael Jordan and Jack Nicklaus, we find the ubiquitous idea of forming a strong mental picture of one's goals, and then
mentally rehearsing
the goals to supplement the actual physical training that takes place.

I began running in 2001, two years after the crash. I thought that perhaps if I could keep in good physical condition I would improve the blood flow to my brain, and give myself the best chance at recovery. By this time I had for two years already had little choice but to force myself to walk daily. But the forcing was highly symbolic in nature: there was nothing wrong with my legs. Rather it was the low-level “seeing” of my progress toward a destination that was diminished, and it was this visualization—the driving engine of motion—that got such a vigorous daily workout.
*

But this discipline of forcing my legs to go, ignoring fatigue, strongly visualizing my goal, and persisting toward it no matter what, were activities shared with long-distance runners. They were training hard, and daily, to run marathons; I was training hard, and daily, just to get across the room, down the hall, across the parking lot.

Once I started to run, it turned out that with only minimal physical training I could run long distances. I am absolutely certain that the daily grind I went through, sometimes even
working against extreme debilitation to do so, year after year, prepared my brain-body system to run what ultimately became marathons.

The effect of such mental training is strong. Because of my child-care responsibilities, and my work, I had very little time to myself. I ran only when I could, and only casually—never more than twice a week, and usually far less. Yet there are many examples of the results of my ubiquitous daily
mental
exercise. For instance, in the fall of 2003 I found myself with an unheard-of Saturday morning when I didn't have any children with me, so I just ran until I felt like stopping—eight hours and
forty-one miles
later. In another example, in 2007, in the seven-month period from January through July, I was able to run only four times, for three miles or less, adding a single longer run in each of August and September. Then I completed the twenty-six-mile Chicago Marathon a few weeks later.
*
In all I completed marathon distances or greater twelve times during my eight years in the concussion soup. My “training” was exceedingly casual, yet my experience when running was just like my normal day:
left foot, right foot, keep going!

MEDICAL DEAD END.
My difficult experiences in the hospital notwithstanding, I made determined efforts to get the best help possible. But over the years I lost hope that the medical community had anything to offer.

By my third year after the crash, I had had appointments with two of the leading neurologists in the Chicago area. One was the consulting neurologist on a huge contract for an internationally famous sports star, which had recently been finalized only after he gave his okay regarding lingering concussion symptoms. Among his other clients were national household names in the sports world. He was compassionate about my condition. At least he understood my symptoms! The other leading neurologist diagnosed, and explained, some of my vestibular difficulties, though he asked no questions, and in the
end had little else to say. Their assessment: Concussives never really get better. The brain is permanently damaged. There is often terraced improvement after three weeks, after six months, after a year, and sometimes at two years. Beyond that, no one improves. I should develop strategies for living with my permanently diminished abilities.

I went through an expensive set of tests at a highly ranked rehabilitation center. But once again, in my strongest opinion, the tests were inappropriate for concussion. In a repeat of my visit to the first neurologist (a few weeks after the crash), I managed to score in the highest percentiles on several cognition tests, but afterward I had trouble talking, and could not walk. My hands didn't work. I was in pain from the simple mental exercises. My sensory filters were failing. When I mentioned my symptoms, I was told brusquely, “That's not part of the data.”

None of what I felt were the interesting components of cognitive breakdown were assessed. And, if the tests were to have been repeated, I would have scored near the bottom. When I mentioned this, I was again told that that, too, was irrelevant. There was zero accounting for changes in cognition under brain stress, which of course is one of the hallmarks of concussion.

Furthermore, there was no accounting whatsoever for differing
baseline levels
of cognitive performance from patient to patient; though I still scored very high on the mental manipulation exams relative to the average, I struggled with the exams, and they were much harder for me than they would have been prior to getting the concussion. None of this was taken into account.
*

Despite the high cost of the tests, the institution's computers were old and the software for testing even older, running on long-outdated operating systems. I once again had the distinct impression that because there was no treatment for concussion, it was not of interest to the medical community, and concussion research did not attract much funding.

The result: I was suffering from post-concussion syndrome, legally classified as an
impairment,
not a
disability.
There wasn't much to be done. Sometimes taking a selective serotonin reuptake inhibitor (SSRI) like Prozac could help to jump-start the brain. (It didn't—no effect.)

STRESS.
At the time of the crash I had worked ahead in my professional life—preparing my courses well in advance—to clear the year for research. I was also feeling good about my personal life, my first wife and I having finally ended a long-troubled marriage four months earlier. Nonetheless, even with such a clear schedule, I was now almost completely unable to keep up with my commitments. I had always been the guy who did whatever it took to get the job done—
always
—and for the longest time I still expected to wake up the next morning and be myself. I couldn't conceive of what was wrong with me, and I held myself to the same standards as always. I had no interest in considering my injury—I just wanted to get back to the work of my life. It was stressful, and frustrating for me to watch, as I had to let one thing after another go.

After six weeks I finally realized that maybe I needed “a little more rest for a while” until I could figure out what was going on. I still had no clue what having a concussion meant, but I did intentionally adopt some different patterns in my life, and was willing to temporarily give up on many of my goals. I started to think, from time to time, “Well, I just can't get that done, so I might as well not worry about it.” I stopped returning
all
my e-mail messages, I accepted losing money from incorrect charges on my phone bill, and I gave up trying to remember everyone's birthday.

Then, one day, sitting in my living room two years after the crash, once again unable to get up from my chair, I realized that I was
never going to get any better.
I recall thinking explicitly that my life had been pretty good; if I was able to get anything more from the shell that was left I would consider it serendipity. I thought about how gracefully my own father had faced his death, and had a small “ah-ha!” moment realizing that I too was now able to manage my own “partial death” in the same way.

“This is it,” I reflected. “I am never going to have another normal day, or hour, or ten-minute period again. I am never going to be a real human being again. I am never going to be close to God again. I won't be publishing my research, and at some point I am going to lose my job. I'll never be able to study music again, or even organize my records so that I can listen to them.”

In that moment, I just let go. I accepted that life as I had known it was over. But this explicitly did not mean that I was giving up. In fact, in a baroque way it was the opposite of giving up. Rather it was a
giving in
—a complete reorganization of how I felt about my time on earth.

So I stopped beating my head against the wall. I openly
told people that I could not handle many of their requests, and was not going to try. I set limits on what people could ask of me, and I learned to say “no” to myself for anything frivolous that would take more than a few minutes. I focused entirely on the needs of my children and on my work.

This had consequences. For example, I couldn't manage the one-eared, digitized sequence-processing component of voicemail. So I turned it off. Many people considered this a rude outrage: they wanted to be able to leave me messages, and accused me of being purposely difficult. But I knew there was nothing I could do about any of it. The
letting go
afforded me a great lessening of stress, and a relief from responsibilities that I could no longer meet.

By continuing to be deliberate about limiting my responsibilities, in the years following I gained back just enough functionality to maintain the status quo. And then in 2004, another baby (Erin) came into our lives. The obligation of being a parent to this young child—which ultimately fell almost entirely on my shoulders—required that I push myself to the absolute limit.

THE TALKING GIRL.
By 2006 I was a de facto full-time single parent of my three daughters, including, most notably, two-year-old Erin, and in addition shared the custody of my son Paul, who was then eleven. It was during this period, starting seven years after the crash, that caring for Erin, and in particular attending to her developing
verbal
needs, brought me to the brink of a complete breakdown.

As any parent knows, raising children can be fatiguing. In addition, one parent alone, taking care of several children,
especially while working full-time, has an increased burden. As a single parent, I was busy, and tired in the normal way, as would be expected from responding to the continual demands. But kids are dynamic too, and being genetically and culturally programmed to respond to the needs of families, mine were also able to adapt to my infirmities. So in general, we got by. If, for example, Nell needed help with her homework assignment, I would stay up late at night working on it, possibly over the course of a few days, and leave explanatory notes for her to read in the morning. But I had constraints too: I could not be counted on to drop whatever I was doing to work on a math problem for ten minutes, because the symbolic processing needed for that ten minutes might mean that I would then not be able to cook dinner.

But two-year-olds are different. Yes, they can also adapt, but the scope of their adaptations is limited. They tend to need what they need
right now
, and are not good at longer-term planning, or at waiting.

Yet even the constant demands of a two-year-old were something that, except for one issue, I could deal with. I had, after all, done it three times before. Healthy two-year-olds, while not being able to plan well for themselves, are also generally predictable, and thus random entities around which a crafty adult can himself plan: if a two-year-old is coming home from the babysitter's house where they have had several hours of play, then, no matter what their apparent mood is, the rule is they need food, and hugs, immediately—otherwise, watch out. If you want them to learn to clean up after themselves, then you have to do it with them often, and they will copy you, as play. And so on.

Basic two-year-old behavior was not the problem.

The one area, however, that was beyond Erin's control, and mine, was her essential biological and cognitive need to
talk all the time
—which in her case was also idiosyncratically emphasized. Erin was, and is, a bright, inquisitive,
engaged
girl. She is highly social, and thinking all the time, and it was also her natural toddler disposition that if a thought came into her head it was also coming out of her mouth.

The verbal style of very young children requires us to use a unique set of resources to process what they are saying. They ask questions and make pronouncements in the middle of other conversations. Their speech is often broken, and slowly formed, with many garden-path sentences that are later backtracked and started again—especially when they are working out complex structures, as bright children are wont to do. It is as though they are thinking out loud, and the sound of their words helps them to form their ideas. For me, following this kind of communication structure was particularly taxing—as we've already seen, people's speaking styles made a big difference in how rapidly I grew fatigued.

When Erin was talking, I fell into the familiar trap of being unable to filter out the verbal/audio stream coming in through my ears: the sensory input was going to be presented to my brain whether I wanted it to be or not, and I would automatically attempt to turn her words into symbolic meaning.
Always.
It was a process beyond my control. I would then fall prey to another familiar problem: having to perform two tasks at once—in this case, making sense of what Erin was saying, and trying to do virtually anything else. In a disastrous spiral I would fall farther and farther behind as I tried to turn her
constant stream of words into meaning, and also go about the rest of my life.

Here is a diary entry giving an example of Erin's speech that I was parsing throughout the day:

“Dad . . . why do spiders like to bite people?
Do
spiders like to bite people? We have spiders in the house. I saw one. Does
that
spider
there
like to bite people? One time . . . Daddy, one time there was a spider on Mommy's sweater.
Was
that spider going to bite her? It was black. Not the sweater. The sweater was her red sweater . . . Looks nice! Was it going to bite her? Do we taste good? Like chocolate? Hey Dad. Daddy! Daddy! Can we have some strawberries? Can you get me some strawberries? Hey Dad, did you get Paul a towel with different colors too? Is that Paul's new towel? Is that like a rainbow? . . . or is it just striped different colors?”
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It was this simple combination—my inability to filter out or process spoken dialogue in real time, and Erin's continual need to talk—that almost led to a final, catastrophic meltdown. The daily processing demands of this problem just led me, over the months, to deep, deep brain fatigue.
*

After a year and a half of this verbal explosion, I had reached the end of the line. This was a tricky place. It was not an option to
not
be taking care of Erin. She needed me as the reliable caretaking parent that she had had all her life. Her mother was, by this time, seldom at home, and additionally spending a good part of the year on business trips in China. There was not enough money for me to hire a regular babysitter—my salary already went to support two households. Yet I could no longer manage working and caring for Erin on my own. I was still, albeit in a much-reduced capacity, trying to be the guy who could be a professor, take care of everyone, raise a young child on my own, build a house on the side—the guy that always came through.
But that guy was gone.

I had to face reality. I couldn't keep up anymore. Unless something changed, I was going to have to resign from my job, which in turn would mean losing my house, losing my ability to support my family, losing everyone's medical insurance, and likely losing contact with my older children. After so many efforts that had done nothing but further drain my resources, I had little hope of finding any help. Nonetheless, because I was now on the precipice, I was prompted to make one last-ditch effort.

It was at this point, in January 2008, that I pulled out my last remaining emergency savings and hired my second professional organizer, Heather. Heather's first task was to help me to write up a detailed letter and send it to twenty selected researchers and centers that focused on traumatic brain injury, and that might either help me themselves, or know of someone who could. We especially focused on those whose work embraced the modern idea of
brain plasticity
. But we had no luck.
In fact, over the months following, we got back only a single short response that said in effect, “I'm sorry! I can't help you at the moment, but I'll think about it.” Outside of that, the silence, as always, was deafening.
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