The Ghost in My Brain (5 page)

Several weeks after the crash I was feeling so debilitated and confused that I again called the family doctor, and again was told to go to the emergency room.

I was understandably reluctant to return to the hospital, but I was getting desperate. I couldn't make sense of what was happening to me. By this time a whole potpourri of strange things had been occurring. I would get stuck in a chair, unable to get up for an hour at a time. I could go up stairways, but I could not go down them. I couldn't understand jokes that people told. I couldn't follow announcers on the radio. I often had to sleep with my eyes open. I had serious balance problems. Shopping was almost impossible. I couldn't take the train, or manage an elevator. I couldn't listen to anyone on the phone for more than a minute or two before nausea began to set in.

The emergency room was busy. After waiting forty minutes, I was taken inside and told to take my clothes off, put on a gown, and lie down on a bed. This took me a long time. The geometry of my clothing was difficult for me to “see,” and consequently my hands were moving in slow motion, and awkwardly.

A harried emergency room nurse came in to talk to me.

“Why did you come here?” she asked.

“I don't know why I came,” I said honestly. “I don't know what's wrong.”

She looked at me suspiciously. “How can we help you, if you won't tell me why you are here?”

She was right, but I didn't know what to do. So I didn't say anything.

“Dr. Elliott, have you been taking drugs? Did you take something? Have you been drinking?”

I shook my head, but didn't say anything.

She left, and sometime later, a doctor came in. Presumably he had looked me up, and seen that I had been diagnosed recently with a concussion. He had a clipboard with him.

“Are you in pain?” he asked.

“Yes,” I said. “A lot of pain.” This was true. Whenever I had had to think about anything the pain in my head and in the neck muscles under my skull was intense. “Strange things have been happening to me.”

“Do you have nausea?” he asked.

“Yes,” I said. “If I try to read, or think about much of anything at all, I have to work hard to keep from throwing up.”

“Okay,” he said, and wrote something on the clipboard without any explanation. Then he left. I lay on the bed and stared at the cloth curtain that separated me from the next bed.

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.

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 another 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.