The nurse returned after a while. I sat up and she put a small paper cup with some pills in it in my hand. She said something to me, but she was talking very fast because they were busy, and I couldn’t process what she said. I didn’t understand what to do with the pills, so I just lay back on the bed, holding them in my hand, working hard trying to understand the situation. I could see that the pills were two different shapes, and I didn’t know what that meant. I didn’t know what was going on, what I was supposed to do, or what was going to happen.
After forty-five minutes the nurse came back. She was upset that I still had the pills in my hand. I believe the idea was that I was to have taken the pills, and they would wait for them to take effect and see how I was doing.
“Oh, good grief,” she said. “What are you doing? Why didn’t you take the pills? We’ve got a lot of really sick people here.” My head hurt at the sound of her harsh words.
So I swallowed the pills (one for nausea, and one for the head pain?). In retrospect, I guess the nurse just saw me as a malingerer who wouldn’t follow instructions and was taking up a bed needed for someone with a broken leg. I put my clothes back on, accepted some papers, and left.
It took me half an hour to figure out how to get back to the garage and find my car. (This is a two-minute trip ordinarily—the emergency room is next to the garage.) I couldn’t make sense of the hospital corridors; it was hard for me to get up the stairs because I couldn’t “see” them; I didn’t understand the geometry of the parking garage; I had to hold on to the walls for balance. When I finally found the Mazda, I was exhausted. So I sat in the driver’s seat with the door open, just resting, waiting until it was safe for me to drive.
But I had no luck. After twenty minutes the security guard came and told me he had seen me prowling around the garage, and if I didn’t leave immediately he was going to have me arrested.
And even though I had done nothing wrong, in my weakened condition I really did fear that this might happen: I looked disheveled, I was acting as if I was perhaps on drugs, I was sitting in a car with a smashed-in rear end, and it would be hard for me to explain my circumstances—not exactly a person to inspire confidence as the cream of society. With the unfamiliar shapes, the stress, and the noise, jail would be more than I could manage.
Alarmed, I mustered the energy to drive out of the parking garage, and stopped down the street, where I rested and contemplated my strange condition. I finally got home three hours later.
I felt much worse than when I had gone to the hospital in the first place, and also now knew definitively that the emergency room was not an option that was going to help. I was on my own on this one.
Not surprisingly, I vowed never to return to the hospital. And I never did.
APPLE, SCARF, TREE
Despite my difficulties with planning, I did manage, finally, during this period to make contact with a local neurology group. At the prompting of the family doctor, I had tried to see an established neurologist, but the soonest one could see me was in two months. I was reluctant to wait this long, fearing that I was possibly sustaining further damage to my brain—my symptoms were so strange, and not getting better. The office could “squeeze me in,” they said, in three weeks with a neurologist who had just joined their practice.
I spent a day carefully writing out notes on exactly what I had been experiencing, which I now know to be classic symptoms of concussion, but which, apparently, were not of interest to most physicians at the time. I used up another morning getting the notes into a stamped and addressed envelope to be picked up by the postman, to be read in advance of my appointment.
On the day of my consultation I arrived well rested, and had done nothing the least bit taxing since the day before. I wanted to be at my best.
“Good morning, Dr. Elliott,” said the middle-aged neurologist. “I understand you are concerned about a concussion? Tell me, were you in an automobile accident? Is there a lawsuit? Were you wearing your seat belt?”
These were standard questions asked of me by virtually every physician I saw. We can suppose there are often, on the one hand, annoying troubles from lawyers that make extra work for physicians, and, on the other hand, lucrative expert witness fees when there are lawsuits. It also seems to be the case, to me, that there is always an assumption that if there is an automobile accident, there will be lawsuit money, and thus everyone is immediately suspicious that you are faking it.
I told him there was no lawsuit.
He then gave me a variation of a thirty-question test called the Folstein Mini–Mental State Examination.
“What is today’s date?” he began. “Can you tell me what season it is?”
I did fine at the beginning of the test.
“Okay. Good. Now remember these three objects: an apple, a scarf, and a tree. Can you repeat them back to me?”
“Sure. Apple, um . . . scarf, and, uh, um . . . tree.”
He then had me count backward by sevens from one hundred. This was quite stressful because of the sequencing and the visualization, which, as we will see, were very challenging for me. I had only been with the doctor for a few minutes but I was starting to feel strange and disoriented again, in the way that was becoming quite familiar.
“One hundred, ninety-three, . . . eighty-six, . . . , . . . seventy-nine, . . . , . . . , . . . seventy-two,” I said, getting slower and slower as I progressed. I could feel my tongue getting heavy, and I began to lose my balance as I sat in the chair.
“Okay, fine,” said the doctor. “Now tell me the three objects again.”
“Um, uh, apple,” I said.
“Go on!” he said in a commanding voice.
“Ah . . . ah . . . ,” I said. I could see the scarf in my mind’s eye, but as soon as I tried to say the word, the image went blank, and I couldn’t speak. My eyes were staring. I was getting increasingly nauseated. “Scarf,” I finally managed.
“GO ON!” he said in an even louder voice.
But I couldn’t manage it.
He now started to verbally abuse me. “Say the word!” he shouted. “TELL ME THE THIRD WORD! THREE items, not TWO!”
It was as though I could either “see” the word in my mind’s eye, or say it, but not both. I was having trouble understanding even the concept of there being three items. His shouting felt like I was being beaten in the head. I recalled the image of a tree, but then the word “Tree” began to blend together with the word “Three,” which was similar. I was drowning in sensory and cognitive input.
“Tree,” I finally managed.
He made notations in my file. Then he gave me a simple drawing exercise to complete.
“Do you see,” I said, “that I am now having trouble with motor coordination, with controlling my hands?” I was doing my best, but by now drawing very slowly.
He didn’t say anything, but instead waited for me to complete the drawing. He wasn’t interested in what I had to say.
He then gave me a physical exam that specifically included reflex testing, banging me below my knees and near my elbows.
At the end of the exam, which had lasted about fifteen minutes, he said, “You are fine. I don’t see any real problem here. I think if you rest for a few days, you’ll be okay.”
But I felt far from fine. And I had done nothing but rest for weeks. The simple mental exercises he had given me were specifically very difficult, and had left my cognitive state seriously depleted. I was moving in slow motion. I was becoming unable to filter sensory information.
On leaving the office I avoided the elevator because I did not want to have to deal with the disorientation I knew would result. But then I got stuck at the top of the stairwell. I couldn’t “see” the stairs. I gave up and sat down on the top step, unable to proceed. It took me forty-five minutes to get down the single flight of stairs, moving from step to step, holding on to the wall, and anoth
er hour to manage the short drive home.
I was no closer to understanding what was happening to me. The doctor had said I was fine, but everything was still so difficult for me.
Given what I know now from my own experience, and from talking with other concussives, there was critical information missing from that exam. First, in a theme that would come up again in the future, had the cognitive exams been given to me a second time I would not have been able to complete them, because a signature of my concussion was the rapid cognitive deterioration that took place under certain kinds of cognitive stress. That is, I would present as almost normal for a few minutes, but then would fall off a “cliff,” so to speak, under the cumulative mental load. Yet, in my experience, standard medical procedure never calls for repeating these types of exams. Second, in another theme that would come up in my interactions with medical professionals, there was no baseline set for a patient’s raw cognitive intelligence or education—which can be crucial information in determining what deficits have occurred. Third, the onset of balance difficulties and the deterioration of motor skills during the exam should have been a dead giveaway.
In short, at the time, the standard neurologists’ response to concussion was to give me an exam designed for dementia, and, my having passed that, and a simple set of reflex tests, send me home.
A week later, the neurologist sent a letter to the family doctor suggesting that I get a little more rest before teaching my classes. He completely missed both the nature of, and the extent of, my impairment.
I was so enraged by the letter’s cavalier treatment of my difficulties, and also by the fact that the doctor appeared not to have even bothered to read through the careful list of symptoms I had sent him—and which, in my condition, had taken me so much effort to prepare—that I composed a draft of a detailed response letter complaining about his commentary. As a professor, I was disappointed that he would be so unscientific—his conclusions didn’t match the facts. But I never sent it. I couldn’t manage the details of getting the letter into an envelope, stamped, addressed, and into a mailbox.
So my immediate options had run out. It happened to be the case that as a cognitive scientist, I found my symptoms interesting, and it also happened to be in my nature that I just seldom gave up when I was pursuing the solution to some hard problem, consistent with my work at the university. So I kept at it for almost a decade, without the slightest encouragement that I’d ever get better. In fact, I heard repeatedly from various branches of the medical profession that after a certain point I would not get better, that no one ever did.
But we have to ask, how many other concussives have simply given up at this point? Virtually every “expert” I had seen had shown little interest in my condition, and even less understanding. I had been treated with suspicions that I was a malingerer, a troublemaker, and perhaps even a scam artist. I had no idea what had happened to me, and didn’t even, really, understand that there was anything seriously wrong with me. I thank my stars that at least I was not diagnosed as a mental case and treated with psychotropic drugs.
Given my experiences, I am certain that there are thousands of people in the United States alone still needlessly going through exactly the same misadventures that I did. They’ll have no understanding of what has happened to them. They might find that cognitive treatments are not covered by medical insurance, or recognized by the armed forces, or understood by their physicians. They’ll run into hostility and the suspicion that they are faking it, or that they have mental problems. They may end up paying for treatments that don’t address the root of the problem, and listening to well-meaning professionals’ unfortunate conclusions, then go home to live with their condition for the rest of their lives because they have nowhere else to turn.
PART TWO
THE COMPONENTS OF COGNITION
In this section of the book, we will focus on the important cognitive themes that defined my concussion experience over the next eight years. How was I able to manage such severe symptoms, and yet still keep my job? What was the relationship between my visual system problems and my balance difficulties? Why was it that one day I couldn’t walk across a parking lot, but the next I could run a marathon? Why couldn’t I read anymore?
BACKGROUND
Despite the obvious challenges, I was in many ways blessed by the structure of my life, both at work and at home.
Very important to this story is my employer, DePaul University—our nation’s largest Catholic university—which afforded me critical flexibility in my work schedule, and thus allowed me to continue working as a professor. DePaul is quietly one of the little-known jewels in the academic world. Faculty positions were—and are—highly sought after by those (like me) who believed in a strong commitment to both teaching and service in such an eclectic environment—in addition to their pure research—because this meant that there were many ways for us to make a contribution to the university. This emphasis on a broader kind of service to the academic community allowed me further flexibility in how I could approach my job. I was surrounded by peers who were high-quality researchers, but also, in this unique academic environment, universally good teachers as well. This ubiquitous “teaching personality” generally made them curious about, and sensitive to, the idiosyncrasies of others—including me. My students, too, were both thoughtful and helpful in working around my impairments. The service-oriented Vincentian ethics of the school provided a trickle-down grounding that fostered the well-being of its faculty, staff, and students, and thus wrapped me in a very supportive environment.* And, too, I was part of the hugely vibrant College of Computing and Digital Media, which has sported, for many years, one of the largest graduate programs in computer science in the world, giving me a great deal of flexibility in the courses I could teach. I was very lucky to be at DePaul.
My faculty peers were understanding. The dean of my school was compassionate, and strategic about making the best use of my diminished skills. I scaled back my promising international research career in computing emotions and instead focused on collecting and developing ideas for much later publication. I emphasized service to the college and my teaching.
At the time of the crash I was, after two decades, away from the stress of a long-failing marriage. I had my own place to live. Except for some initial difficulties in getting to see my older children, life was on the upswing. It was, overall, a time of great promise. My natural exuberance for life was still intact. I was surprised to find that, even after only a few hours of something like sleep, I woke up almost every morning thinking, Hmm—how about that, another good day!
I only gradually began to realize—after a fashion—that my life was significantly changed and that this was not just some temporary state, like having the flu. After all, as long as I didn’t think, I looked and felt pretty much normal. And when I did have to think, I became so engrossed in solving the immediate resulting problems that I didn’t have room for making a global assessment of my circumstances. It was just one foot after another, every hour, every day.
It’s true that I was daily encountering strange and difficult problems to solve. But solving hard, novel problems—mostly on my own—was for me a way of life, both personally and professionally. It was, in many ways, just business as usual. The work was similar; the problems were different.
A month before the crash I had moved into a small, burned-out house with only limited power and plumbing, which I was intent on rebuilding. I lived there alone, except when my older children were visiting. After sustaining the concussion I continued to work at the construction with various subcontractors as I was able, with no choice but to finish much of the job myself over the course of several years.
I had many big hearts around me during that difficult time. I formed what are now ongoing thirteen-year bonds with my second wife, Qianwei—a Chinese computer scientist—and my deeply thoughtful stepdaughter Lucy, with each of whom I remain close, despite de facto s
eparation starting in 2006. Qianwei’s parents lived with us for a year, during which time they became grandparents to our enchanting daughter Erin (my youngest), who has lived with me her entire life—including mostly having me as a single parent from the time she was two years old. Nell, the oldest of my three children from my first marriage (the rocket girl, who has been unfailingly supportive of me), has been with me most of her life—and exclusively so from early high school through the completion of her master’s degree at Brown University in combinatorial optimization. Peter, my second, lives close by, and has visited with me off and on. Lucy, my third by age, was always with me, even when her mom was frequently out of the country on long business trips. Paul, my fourth (who was crucial in getting me through my most difficult challenges with his little sister, and who often just helped with whatever I needed at the time), spent almost half his time at my house. So, during this entire period I was often the single parent for a houseful of bright and thoughtful children.
My good friend Jake, who also figures prominently in this narrative, lived nearby in Chicago until he moved to take a job in San Diego in 2002, where he continued to support me remotely.
Although none of the treatments I pursued ever helped with any of the actual root causes of my brain problems during this eight-year period, I kept hacking away at it, leaving no stone unturned, so to speak, in looking for such help. In addition to my visits to the emergency room, and to the first neurologist, I later visited a nationally known rehabilitation center, a balance clinic, a neurotherapy clinic, a homeopath, various M.D.s, and had every diagnostic psychological test available at the time. I saw two prestigious neurologists and a psychiatrist. All of these practitioners and institutions were serious about their work. Some of my visits were informational—which in itself was helpful to me—but beyond that, no one had anything to offer a TBI victim beyond compassion and the suggestion that I learn to live with my permanent symptoms.
The Ghost in My Brain Page 5
