The Ghost in My Brain

by Clark Elliott

  Getting a cold or the flu thus not only was a physical problem, as it would be for normals, but also was attendant with the much more taxing cognitive difficulties engendered by losing many backup mechanisms for forming the symbols of thought that would get me through the day.

  Perhaps it helps to think of it this way: my cognitive/sensory landscape was often a changing and unfamiliar environment, without inherent symbolic meaning, and requiring much thought to figure out. By contrast, my body state was relatively constant, and I was thus generally able to use this grounded proprioceptive sense, and other body feelings, to form nonvisual symbols that still allowed reasoning and problem solving to take place. But when I lost the grounding of my body sense because of illness or physical fatigue, I could no longer form these nonvisual symbols in the usual way. My internal landscape became just as unfamiliar as the unfiltered external sensory stream was.

  This can be a perplexing weakness. It often left me asking myself, “What is wrong with me? Why am I so incapacitated by a simple cold?”

  SEIZURES AND OTHER STRANGE PHENOMENA. When someone gets a concussion there may be odd physical failures that can occur in addition to the cognitive changes, and I experienced a few of them myself.

  Under certain kinds of cognitive loads that involved my making sense of lines—especially parallel or concentric lines, and also in some cases geometric rotations of shapes that had well-defined edges that could be perceived as lines—I would start having mild brain seizures that caused my whole body to shake from side to side. Here is an episode from my notes that illustrates how this would happen:

  September 2004: Several days ago I had a large photocopying job that I had to complete before the day was out. I was at the UPS store doing my best to keep the various piles of originals from getting mixed up. It was a complex job, entailing sorting and copying collections of documents, translating two-sided originals into one-sided copies, and so on. The intense visual appraisals required for the mental rotations—top-to-bottom, front-to-back—soon left me disoriented. Because I had a hard deadline, I had to draw extensively on my deep cognitive batteries and keep going—no matter how I felt. There were other customers waiting behind me, adding social pressure.

  Because of the geometric visual demands, I started to experience tremors that caused my whole upper body to shake back and forth. It was embarrassing to hear the “flap! flap! flap!” of the papers waving around as I worked. I kept going, and finished the job because I had to, but it was startling for others in the copy shop to watch—the shop owner offered to call an ambulance for me—and it was a real struggle for me to get home afterward. The seizure movements tapered off and finally stopped after three days.

  I experienced these seizures to one degree or another about thirty times, and always with visual triggers—although it was some time before I made this connection. They lasted from a few hours to a few days. I was often afraid that these were precursors of an impending neurological collapse, but in the end, with rest, they always went away. I didn’t want to take any chances with them, and when I began experiencing seizures I took this as a sign that I had to let virtually everything else go.

  In March 2008, at which point I was well into my recovery, I was more confident, and my scientific curiosity took over. I found that if I tried to mimic the seizure movement manually, I could only approximate it, and I would get tired in only a minute or two. By contrast when the seizures came over me from geometric triggers, they might last for days and I wouldn’t feel any muscle fatigue at all. With experimentation—at times of relatively low stress—I found that just by drawing concentric circles on a sheet of paper I could trigger an episode in as little as four minutes. I would draw a small circle, then another around it, and another around that one, up to five or six concentric circles. Then I’d start another design next to it. For variation I might mix in concentric squares.

  After two horizontal rows of designs (ninety seconds) I started to feel the effects, and also as though I were “falling into” the shapes when I looked at them. After half a page of designs, if I stood up, and relaxed, I would have the seizures, and they would last for about twenty minutes.

  Figure 2: Hand-Drawn Concentric Circles and Squares

  I was able to function well—talk, grasp things, etc.—but I had to be careful not to drop items or knock them off counters or a table top when I was picking them up. My walk was affected: I sort of stumped along, straightening my knees more than usual at the extension point, flinging my feet forward, instead of stepping.

  My intuition is that if I pushed myself, say by drawing five or six pages of concentric designs, the tremors would last for several days.

  • • •

  Another brain-wiring problem—and the scariest one—came from a surprising source: itching.

  Sometime after the car crash I realized that I could no longer effectively locate where certain kinds of back itches were, and without my being able to scratch them, they would not go away. I could feel where the itch was supposed to be on my back, but scratching there didn’t relieve the itch. Instead I had to generally scratch all over my back, my shoulders, and my upper arms, and sooner or later the itch would gradually recede. But for this kind of itch there was never a sense of finding “the” spot. I never actually relieved the itch directly, by scratching, which is, in itself, unpleasant. (Think of a sneeze that just fades away.)

  This may seem like a small problem, but I have many times thanked my lucky stars that I have at least been able to get the itch to slowly go away by scratching everywhere. What a maddening—and even potentially catastrophic—thing it would be if my random scratching were not able to get this phantom back itch to stop! To give some context about how serious this can be, consider the case in which another sufferer of a phantom itch went almost mad, and indeed ultimately scratched through not only her scalp but also her skull bone and into her brain trying to get relief from an incessant itch that she could not control.*

  • • •

  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!

  SPIRALING DOWNWARD

  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 sta
tus 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.