Prognosis
Page 6
After taking the dogs out for an unscheduled park break, I returned to my desk that afternoon. My task was to copy the whole page of an article into my notebook. I had started work on a piece about Singaporean society. I promised myself I would not leave my study until I had completed it and checked it for errors. It took me a week to transcribe that brief journal article; I got through a page per day. Without these self-imposed tasks, I would probably have festered at home on my sofa, spending most of my disability pension on dog food.
Each day I copied excerpts of books and articles into a notepad. In my mind, I was conducting important research, wading through a sea of papers that needed to be waded through. Why, I wasn’t quite sure. I absorbed almost nothing of what I wrote, but that didn’t matter. Each day transcribing became easier, and I accomplished it more accurately and more quickly. I continued reading everything aloud, to improve my speech, to check what I had written, and to limit the jumble of words that came out each time I opened my mouth. If someone were to stop me in the street and ask me how I was spending my days, I had an answer: “I am conducting research for my PhD!” I would need to make sure I closed my mouth when I finished saying it, but I believed I could make it sound convincing—as long as there were no follow-up questions.
As a demonstration of his support for my hard work, George took up residency inside my study. He found an unspoiled patch of carpet underneath the window that caught the afternoon sun and curled himself up like a pretzel.
One day I decided that I needed a particular book and that the only way of finding that book was by visiting the library at the University of Sydney. I told the dogs that I needed to leave them briefly to undertake an important mission. Even when I had a normal, healthy brain, I struggled to find anything in the labyrinth of Fisher Library, so I prepared myself for the worst. Research in the years before the internet involved searching through wooden catalog drawers for a card with the author’s name, book title, and its location within the library. I hunted through the drawer for authors whose names began with RA and found nothing by the author whose book I needed. I looked again. And again. A line of students snaked behind me, clicking tongues, shuffling feet. The familiar beads of sweat congregated along my hairline, and my hands started to tremble. I gave up and headed upstairs to the fifth floor, where I had spent much of my time as an undergraduate. I walked through the shelves to the three hundreds as if on autopilot. Surely if I looked long enough I would find the book. I spent an hour looking. Exhausted, I left the library, angry with myself for giving up. I should have asked someone for help, but I was terrified they would think I was stupid.
Shame stuck to my sides, wherever I went, whatever I did. Shame was the reason I had locked myself away from the world and had severed contact with the people who had once been my friends. I couldn’t bear the thought of anyone I knew seeing the person I had become. A person who was angry, depressed, stupid, and lost.
I was raised in a family of clever people, brought up by a mother who respected people, judged them, and made her own assessments of them based on their intelligence. Not their kindness, their compassion, their generosity, their humor, or their courage. I had done this too. Locked away from the world, I feared being judged by the same standards I had imposed on others. It took brain damage to make me realize how arrogant I’d been.
Years later I asked my mother what my IQ had been at age eleven, when Australian children were required to sit for a standardized IQ test. She seemed to remember it without any trouble.
“It was 127,” she said, removing her eyeglasses and cleaning them with her shirt. “Lower than your brother’s,” she added.
Frankly, I was surprised my IQ was as high as it was, given my tendency to baulk at anything that required even a speck of mathematical reasoning. I’d thought of part of my brain as dead long before my accident. I was terrible with deciphering patterns. Before I started high school, I would stare at a row of numbers in those What comes next? questions and feel completely and utterly bamboozled. Not once in my life had I passed any kind of math test. And not only had I never managed to pass such a test, I had never managed to score more than 25 percent, and if I’m not mistaken, that was when I was eleven and tried to copy the answers of the girl sitting next to me.
My trip to the library was my first visit to the University of Sydney since my father had died. I had parked outside the geology department where he once worked, and as I walked back to my car, I looked up at the office on the fourth floor that used to be his and started to cry. I remembered lunchtimes as an undergraduate when I would pop in and find him sitting behind his desk in a room that stank of sulfur, poring through papers held in place by various bits of rock he had accumulated over the years. As a child when we visited the university on weekends, he would give me sticks of chalk from one of the lecture theaters, and I would use them when we got home to draw hopscotch or handball courts on our driveway. From time to time he’d let me draw on the blackboard inside a lecture theater while he rummaged through the papers in his office in search of something he needed. On the way out, after he had wiped the board clean, we would stop beside the large glass cabinet in the foyer of the geology department that housed hundreds of different rocks, and he would explain the difference between igneous and aqueous rocks, or some other such thing that left me cold.
“I really don’t understand how you cannot be fascinated by rocks, Pod,” he said, with eyebrows raised, as we made our way to the car.
“I’m sorry,” I said, and we left it at that.
A year before he died, my father finished building a library next to our family home. It was a giant stand-alone structure built to house his collection of rare books. It loomed over the front steps of the house, next to an oak tree I had planted with an acorn when I was three. It was an addition that would make the house nearly impossible to sell after his death.
“No one wants a library,” the first agent told my mother. “People around here want swimming pools and tennis courts.”
Instead we had an enormous building gobbling up a tiny patch of land, with floor-to-ceiling bookshelves covering all four walls.
“Knock one hundred thousand dollars off the asking price or knock down the library,” another agent said.
My father’s dream became a bargaining tool for prospective buyers. He had built the library thinking he would use it for the rest of his life. Twenty, maybe thirty years.
My father loved books. Most of his books were shipped to him from booksellers in London and Dublin. Each book cost anywhere between fifty and one hundred pounds. He had bought rare books all his life. The result was a huge collection that took up all the wall space in my parents’ sitting room, dining room, their bedroom, his study, and the library. Most of his books were about natural history, but his tastes were eclectic and he had a handful of novels, first editions of The Life and Opinions of Tristram Shandy, Gentleman, and Sea and Sardinia, and books about churches and architecture. His favorite was the first edition of Cook’s voyages to Australia, which he had given to my mother in place of an engagement ring. His oldest book was an early edition of Boccaccio’s Decameron, published in 1527.
With each new book, my father typed its title, the author’s name, and the year and place of publication on a three-by-four-inch index card. In pencil on the back of each card he wrote the name of the bookseller and the price he had paid. As the faculty libraries at the University of Sydney updated their filing systems and got rid of their old wooden catalog boxes, my father bought them and began to create his own. He told my brother and me that he planned to divide the collection between us when he died. My mother made the decision to give the collection to the University of Melbourne library, where it sat in boxes for years, waiting to be unpacked. Having the books in the house was a constant reminder of her dead husband, she said.
When I returned home from my visit to the university, the dogs treated me as though I had been gone for months. I told them I had not managed to find the b
ook I wanted, and they appeared less concerned about that than I was. They seemed to think it was enough that I had made it home safely. It was the first time I had left the house to do anything other than shop, get more painkillers from the hospital, or collect my disability check. She is slowly getting better, George seemed to say to Bess when he thought I wasn’t looking. We cuddled on the sofa until he reminded me it was time for a walk.
I read more quickly and was able to interpret the content of much that I read when I harnessed all my powers of concentration. I labored over every word and read each sentence again and again, in order to make sure nothing slipped through the holes in my left parietal lobe. Slowly, painfully, through a ponderous process of repetition, I was starting to improve. The feeling was at once horrifying and gratifying. I was reminded of everything I had lost, but I had flashes of optimism. The more I focused, the more progress I made.
My memory of life before the accident remained poor, but slowly my cognitive functioning showed glimmers of improvement. Of course, I was the only judge of this, and there were high chances I was wrong. But I had copied and summarized a great many articles and had started to create sentences of my own. Soon, I hoped, I would be able to begin writing. I had worked consistently most days for what I believe was around four months. I wondered if the results would have been the same if I were cutting up scraps of material for stuffed animals. The PhD, the albatross, the noose around my neck, my own Sistine Chapel, was saving my brain.
One day, around six months after my accident, George raced up to an attractive woman walking a dog in the park. She was blonde, under thirty, with a symmetrical face, which satisfied his criteria for beauty. I waited a moment before glancing around. She sat on the grass, and George rolled on his back beside her, his head reclined in her lap. He gazed up at her lovingly, and I walked toward them. The woman smiled at me, and George shot me a look that said, This woman can’t keep her hands off me and it would be very rude to leave.
“Such a handsome dog!” she said, and I agreed.
George showed no sign of wanting to get up, so I sat down on the grass beside him. It was the first time I had talked to anyone for as long as I could remember.
“It’s a lovely day, isn’t it?”
“Very nice,” I said, trying to remember how to make small talk.
“That’s my boyfriend’s dog,” she said, pointing to a golden Labrador sniffing around after Bess. “I’m dog minding while he’s down in Melbourne on business.”
George nudged the woman with his snout, to remind her to keep petting him.
“He likes you,” I said.
“I like him!” she said, bending her head down toward his and stroking the bridge of his nose.
“What do you do?” she asked.
“I’m working on my PhD.”
She didn’t look at me as though I was an imposter or, worse, a moron.
“What’s it about? In thirteen words or less,” she laughed.
I heard my voice tremble as I spoke and wondered if she noticed.
“That’s great!” she said. “I just finished my master’s degree in psychology. My thesis was on head injuries.” I looked at her closely, thinking that perhaps I had imagined her.
“Head injuries?”
“Yes,” she said, “and how the brain repairs itself after trauma.”
I waited for a moment as her words sank in. “Can the brain repair itself after trauma?” I asked.
“It can,” she said, “and often does. You’d be surprised.”
“Wow,” I said, and she nodded.
I did not tell her about my own injury. I walked away and never saw her again, but it didn’t matter. Without knowing it, she had changed my life.
I was a person whose brain would repair itself, a person whose brain had already started to repair itself.
“How did you know?” I asked George as we started our walk home. I felt myself smile. I used muscles in my face that hadn’t moved of their own accord for months. George looked at me, wagged his tail twice, and nudged the side of my leg with his head.
4
METAMORPHOSIS
If the brain was able to repair itself after trauma, why hadn’t anyone told me? That thought jostled around inside my head after I embraced the prospect of getting some semblance of my old life back. The notion that the brain is “plastic” and able to change had been around for more than one hundred years, and the term “neuroplasticity”—the brain’s ability to build new neural connections in response to internal and external stimuli—had been used since 1948. It was a complicated concept, and poorly understood, but it wasn’t new. So why was I only hearing about it during a serendipitous meeting with a stranger in a park? Why had the neurologist been so adamant that my so-called “mild traumatic brain injury” meant I would never work again, never finish my PhD?
More than twenty years after my injury, how the brain repairs itself after trauma remains a mystery. We know that the extent to which the brain can heal depends upon a set of factors that include the patient’s age and gender; the injury’s severity, type, and force; the region of damage; and the patient’s preinjury cognitive reserves and preexisting medical conditions.7 But the research on neuroplasticity after traumatic brain injury is in its early stages and has been largely confined to lab rats. At the time of writing, little research into neuroplasticity after traumatic brain injury has been done on humans.
We know that in the days immediately following an injury, the cells in the region of the brain that were damaged die, reducing the pathways that transmit messages within the brain. Over time, healthy cells are “unmasked.” Secondary pathways are recruited in place of the pathways that have died, allowing functions that were once performed by the damaged part of the brain to be performed by another healthy part of the brain. This adjustment process—the one I’ve provided a crude simplification of—is known as “compensation.”8
I planted a lawn last year. I went to a garden shop and bought long rolls of grass that I laid out like a carpet over a bare patch of ground. Six months later, around two-thirds of my newly planted lawn had started to grow, but the remainder was parched and brown despite regular watering, fertilizer, and lawn pellets. Nearly twelve months later, the healthy parts of the lawn were thriving and slowly creeping across the areas where the new grass had previously refused to grow. I will never lay another lawn: gardening, it turns out, is not one of my talents. But the lawn is a good metaphor for the way in which the brain compensates for damaged cells. Eventually (perhaps in years to come), the healthy parts of the lawn will be so hardy that no one will notice the bald patches of dead grass. After my chance meeting in the park, that was my new hope for my brain.
As to why no one had told me that the brain can repair itself, the answer may lie in the attitude of health-care professionals toward victims of TBI. Researchers have found that qualified doctors in particular are known to blame TBI victims for their injuries. One study found that “among qualified health-care professionals . . . negative attitudes exist towards survivors of brain injury which can lead to adverse behaviors towards the individual.”9 It’s a scary thought: you turn up in the emergency room after a bad knock to the head, and your treatment is compromised because the doctor who sees you assumes you were foolhardy and responsible for any injury you have sustained. I can’t speak for everyone, but I am fairly certain no sensible person wants a traumatic brain injury, so any suggestion of blame seems misplaced.
According to the Center for Disease Control and Prevention, in 2013 around 2.8 million people in the United States suffered a traumatic brain injury that led to a hospital visit. Of that number, 50,000 died and 230,000 were hospitalized and survived. Those figures do not take into account the many individuals with undiagnosed TBIs who do not seek treatment for their head injuries. The estimated cost of traumatic brain injury in America during 2010, taking into account both direct (medical) and indirect costs (lost productivity), was thought to be around $76.5 billion.10
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Despite the huge numbers of people suffering head injuries every year and the staggering costs associated, research into traumatic brain injury has been chronically underfunded. Alzheimer’s, stroke, cancer, and Parkinson’s disease are the sexy areas of brain research and, not coincidentally, the areas from which pharmaceutical firms are most likely to profit.
From the woman in the park, I had learned that my brain might be able to repair itself, and I intended to do everything within my powers to make sure that happened. My life had been suspended like the empty sleeve of a piñata dangling from a tree.
Emboldened by our meeting, I made the curious decision to return to Singapore, Thailand, and the Philippines to conclude my research. It was the first step I made to leave my cocoon with George and Bess and reenter the real world. Oddly, I have no recollection whatsoever about my decision to travel or of the trip itself. I would not have even known it happened had I not discovered my old passport with stamps showing I left Australia for the Philippines in the last week of July 1995, six and a half months after my accident, and returned home from Singapore a month later. I am told a friend moved in to my home and looked after George and Bess while I was gone, although I cannot recall this either. I have no idea where I stayed, what I did, or how I negotiated my way around Bangkok and Manila without getting myself killed. Singapore was clean and safe and easy to navigate, but given my brain injury, I was in no state to be wandering around Southeast Asia on my own. I very much doubt I was capable of conducting meaningful interviews. The lack of evidence of that trip makes me feel like I was trying to impersonate someone doing their PhD without actually doing anything. Whatever I did while overseas, it was not particularly productive. In the years that followed I remember writing numerous letters to the people I had met during my first trip into the field, before my father died, and asking them for help with questions I had been unable to answer.