At nine thirty in the evening I turned off the light, closed my eyes, and drifted into sleep.
When I awoke, the electronic clock beside my bed read ten thirty p.m., or five thirty in the morning back in Hong Kong. I turned on the bedside lamp and picked up the day’s newspaper. I toyed with eating the chocolates that were left on my pillow as part of the turndown service, but they’d acquired a calcified look. I wondered how many turndowns those chocolates had seen and decided instead to take a Mars bar from the minibar. Propping myself up with pillows, I opened the wrapper and bit into the chocolate.
In the six months leading up to this London visit, my memory problems had escalated to a point where I noticed problems almost daily. At first I thought my problems might have been caused by the steroids I was taking for my asthma, but I had stopped taking prednisone, which seemed to have the worst effect upon my memory. Even when I went weeks without any kind of breathing difficulties, the troubles with my memory persisted. I might struggle to remember something I agreed to do at work or forget my own telephone number. Lack of sleep made matters worse. On a bad day it felt like I’d been scalped and then wet cement had been poured inside my head. Something was wrong. I just didn’t know what.
Finishing my Mars bar, my eyes rested on a banner in the top-right side of the paper that invited me to “Test Your IQ!” I groped around for a pen, sat upright in bed, and summoned all my powers of concentration. It was the first time I’d taken any kind of IQ test since meeting Toby at the brain center following my accident. The questions were tougher than I had expected, and it took me a while to answer them. I finished the test and struggled to tabulate my score. Ninety. My IQ was ninety—just ten points higher than it was days after my accident. Thirteen relatively normal years after three bad ones had led me to believe I was out of the woods. Perhaps I wasn’t.
Distressed, I switched on the TV. The first channel showed a man in his sixties, his head in his hands, weeping. The TV guide told me it was a program about the writer Terry Pratchett and his diagnosis of Alzheimer’s. I watched this man wrestle with a puzzle while a woman I presumed to be a psychologist watched. He started to cry again. My body trembled. I decided to watch a show about a woman with tattooed eyebrows and her pole-dancing studio in industrial London, but nothing could erase the image of Terry Pratchett inside my head.
Back in Hong Kong, I talked to Giulia.
“You do not have Alzheimer’s!” she shouted. She insisted that she hadn’t seen any signs of diminishing cognitive functioning or memory problems in the five years we had been together.
“But you don’t know the effort it takes me to remember things, to recall, to think clearly!” I said. “It gets harder and harder.”
“Sorry,” she said, shrugging, “but I don’t see it.”
We continued to have this same conversation on almost a daily basis for the next six months, until she threatened to leave unless I saw a doctor.
An internet search revealed that I needed blood tests to rule out some of the more obvious things that caused memory loss and impaired cognitive functioning in middle-aged women. The big ones were thyroid disease, vitamin B12 deficiency, perimenopause, and menopause. The doctor who called with my lab results told me that I’d tested negative to everything. The results added a new dimension to my panic.
Another internet search produced an article in the Journal of Head Trauma Rehabilitation that warned moderate to severe traumatic brain injury was associated with “later seizures, cognitive deficits, depression, aggression, unemployment, or social isolation.” That part wasn’t a surprise. The article went on to say that brain injury was also associated with “premature death, progressive dementia, Parkinson’s disease, and endocrine dysfunction, particularly hypopituitarism.”19
I felt like I had been dropped into an ice bath. The prospect of a progressive form of dementia terrified me.
In the years since my accident, I had grown accustomed to my anger and depression. They had cost me dearly, killing my relationships with family and lovers. They had become my family. The type of family that visited, overstayed their welcome, left their crap everywhere, and refused to budge from the sofa. I hadn’t chosen them, but I knew them intimately and had learned to live with them. But a progressive form of dementia caused by my head injury was something I had never even considered.
Back on the internet again, I learned about the term “miserable minority.” The term had been coined in the mid-1990s but was still in popular usage and refers to victims of mild traumatic brain injury whose symptoms had lasted beyond twelve months. The neuropsychologists who coined the term believed that most mild traumatic brain injuries resolved themselves within a period of one to three months. The miserable minority were individuals (mainly women according to the case studies provided) who typically suffered from “emotional risk factors,” coexisting medical problems, or were motivated by financial gain through litigation. Their problems, the authors contended, were not necessarily “brain-based.”20 It is an offensive and unhelpful designation, leading one researcher to remark:
When we unwittingly communicate the message that “this is all in your head” (pun intended) we may unintentionally foreclose scientific inquiry, drive persistently symptomatic patients away from the resources meant to proffer support (to them and their families), reinforce ugly gender stereotypes, and risk coming up on the wrong side of history (again).21
I had never suffered any emotional or psychological problems prior to my accident, besides the grief around my father’s death. Nor had I been motivated in any way by the fruits of litigation after my accident. There was no litigation. Nor compensation. I found work as soon as I was able, and I had been employed ever since, apart from my year as a Harkness fellow and the year I spent as a full-time student and in recovery from hepatitis. The problems I’d experienced after my accident—including depression, anger, short- and long-term memory loss, and challenges with word finding and coordination—may not have been visible to the outside world, but they were part of my life, part of me. They were not in my head.
Years after the research into the so-called miserable minority, we know, through MRI technology, that the brain does not return to normal after a traumatic brain injury.22 That explains why subsequent blows to the head can be so dangerous. We also know that a small proportion of sufferers of mild TBI experience the effects of their injury for many years afterward. We do not yet know why.
Recently, attention has been drawn to the fact that the very notion of recovery among brain-injured people is fraught with difficulty. Most clinicians consider an individual to have recovered if they are able to show some improvement in functioning independently. As one article published last year in the journal Neural Plasticity notes:
It is important to point out that sometimes even when an individual appears to have “recovered” [from a brain injury] and is able to function independently, they may continue to show “silent” cognitive and motor deficits in areas such as emotion, attention, or fine motor control.23
I summoned all my courage and called my neurologist in Sydney to explain my problems. He asked me to make an appointment so he could talk to me in person, scan my brain, and test my brain waves. I had no choice but to return home to see him.
It was October 2010 by the time I visited my neurologist in Sydney. By that time, I had decided that my problem was chronic traumatic encephalopathy (CTE), a progressive degenerative disease of the brain I had read about in the New York Times. Its garden-variety name is dementia pugilistica, and it had recently been discovered that boxers and football players who have taken multiple blows to the head were particularly affected. Its symptoms take around seventeen years to manifest, and it had been sixteen years since my accident. Of course, I had suffered only one blow to the head, but who was to say it was impossible to develop CTE after a single traumatic brain injury? What was known about traumatic brain injuries was tiny compared to what wasn’t known. My anxiety was compounded by the media.
There was a stretch of about three months before my appointment when I swear the New York Times ran something about another NFL player with CTE a couple of times a week. Most of those men ended up with a gun in their mouths.
A taxi dropped Giulia and me off in the entranceway to the hospital, and we walked inside to the reception desk. Giulia tried to catch my hand, but I didn’t want my hand held. Nothing she could do could allay my terror. We took an elevator to the seventh floor and walked around in a loop before finding the right office. I had never known more fear than in those moments, circling the hospital floor.
The waiting room was empty, and the doctor invited us in almost immediately. I had only seen him once before, when I started noticing problems with my memory after I stopped working at the newspaper, but there was something about this man I liked from the moment I met him. He was respectful and kind, and he listened without passing judgment.
“So what’s going on?” he asked.
“I’m losing the ability to think. Some days it feels like I need jumper leads to get my brain working before I can process even the simplest things.”
He looked at me and nodded. Giulia looked at him and rolled her eyes.
“You don’t see it?” he asked her.
“I see no problem at all. Nothing.”
He looked at us both in turn and gave a slight smile.
“English is her second language,” I said, only half joking.
Giulia rolled her eyes a second time.
“The worst thing at the moment is my problem with words. I can’t spell anymore. A couple of weeks ago I tried to spell ‘friend.’ It took me an age, going back and forth. In the end I had to pick up a dictionary.
“I used to be an excellent speller. And it’s not just spelling. The meaning of words I once used conversationally are no longer clear to me. Words that are not complicated. Like ‘adjudicate.’ Or the wrong word hijacks my sentences, changing the meaning. When I mean ‘book,’ the word ‘chair’ pops out of my mouth. Or I use words that sound vaguely similar to the word I am trying to say, like ‘beyond the course of duty’ instead of ‘beyond the call of duty.’ It happened a lot after my accident, and it’s started to happen again.
“When I write, my sentences are clunky and awkward, and I can’t use punctuation anymore. I’ve forgotten how. I used to write well, but now writing feels like torture. I’m doing a master’s of fine arts in creative writing, and every time I submit something, a professor red pens the whole thing and asks, ‘What is up with your grammar?’ My grammar was excellent before the accident.”
“They sound like problems caused by your accident.”
“Do you think it could be CTE?”
He looked at me and creased his forehead. “That would be highly unlikely, unless you have had other blows to the head.”
“Just the one, as far as I know. But you can’t rule it out without an autopsy.24 Is it impossible to get CTE after one hit to the head?”
“Not impossible, I suppose. But I would be extremely surprised. Let’s organize an MRI and some brain-wave tests,” he said. “Then we will have a better idea. I’ll get my assistant to book those now, and you can come back and see me at two o’clock.”
The last time I had a brain MRI, when I was forty, I felt like my head had been stuck inside the propeller of a helicopter, so I was doubtful about my ability to endure it. Thankfully, technology had come a long way since then, and the MRI passed quickly and without incident.
An elderly woman in a spotted dress administered the brain-wave test. She told me she was seventy. She looked even older and smelled like a room that needed airing. After coating my head with a thick, sticky paste, she attached a lot of tiny electrodes to my scalp. Each electrode was linked by a wire to a machine. The test lasted forty minutes, during which time she asked me to alternate deep breathing and shallow breathing. During the course of the test she turned the lights on and off several times. As I watched the white-haired woman shuffle around me, performing the electroencephalogram, I couldn’t help thinking it should have been her sitting in the chair, with me doing the testing.
When the tests were finished, I returned to the doctor’s waiting room sick with fear. I would gladly have taken any disease, any illness, had my body paralyzed—anything—as long as my brain still worked. The next twenty years of my life flashed before me. I saw myself sitting in a nursing home—an environment I knew quite well—surrounded by people forty years older, eating nursing home food, sticking my hand up the skirt of every pretty nurse that passed. I had already decided the only sensible thing would be to kill myself as soon as I learned I had a form of dementia.
To be prepared, I had spent a few hours searching assisted dying online and had learned that if I could fork out around eight thousand dollars, the best place to go would be Switzerland. The budget version consisted of making a trip to Mexico and getting myself a couple of bottles of Nembutal. Mexico seemed an awfully long way to go when all I wanted was to sleep.
Giulia sat beside me, oblivious to my inner monologue. She had heard it all before.
The last time I’d brought up my plans, she had said to go right ahead, just as long as she didn’t have to listen to me anymore. I watched her in the waiting room as she calmly flicked through a pile of old issues of Newsweek and Woman’s Weekly. In the interest of medical science and preventing some other poor sucker from ending up in the unhappy situation I found myself in, I planned to donate my brain for research. My body, I’d decided, would be sent to the Chronic Traumatic Encephalopathy Center at Boston University, which led the world in research into damaged brains.
“Can we go to Hawaii this year?” Giulia asked as she thumbed through a soiled, dog-eared copy of the Woman’s Weekly that she had laughingly pointed out was from June 2004. She put her hand on my leg, which was bobbing up and down violently.
“What?”
“Hawaii! Can we go this year?”
“Okay,” I said without really registering her question. Then it occurred to me that in Hawaii I might be able to hurl myself inside a smoldering volcano and be done with it.
I wanted to take Giulia on a tour through my brain—to show her what had been going on behind my skull for the five years we’d spent together. I imagined it would look like a house that had been destroyed by fire. Nothing would be left but the frame and foundations. I’d take her through the belly of the badly charred living room and point out the remains of furniture and personal belongings, things I barely recognized. Everything would be covered in a thick blanket of ash. I would lead her by the hand from room to room and she would see it for herself, so that when I told her my brain no longer worked, she would understand what I was saying.
My mind churned until the neurologist finally opened his office door and invited us inside.
“Look, there is definitely something wrong here,” he said, staring at his computer screen at pictures that showed my brain from multiple angles. “But it’s not Alzheimer’s.”
“No signs of amyloid?” I asked, in a barely veiled attempt to show him I knew what I was talking about. I had read enough in the Lancet Neurology to know that amyloid is an indicator of Alzheimer’s disease.
“None,” he said.
“What is it then?”
“I don’t know.”
“Is it progressive?” That word was harder for me to say than any word I had ever spoken. I couldn’t bring myself to utter the word “dementia.” My mouth refused.
“I don’t think so.”
I was so anxious about being there and having my brain tested, and so relieved to hear the words “I don’t think so,” that I forgot all the questions I had meant to ask him.
Giulia leaned across and hugged me. “What did I tell you?”
He handed me the radiologist’s report. My eyes skipped down the page to the paragraph headed “Conclusion” and came to rest on the phrase “significant atrophy.” I read the section carefully.
There is significant atrophy of
the central sulcal motor cortex and post motor cortex and some atrophy of the posterior parietal region as well as parieto-occipital cortex parasagittally. There is mild ventricular prominence.
I felt like I was reading a different language. The only words that meant anything were “significant atrophy.” The doctor interrupted my reading. He told me the atrophy accounted for the problems I had been having—poor concentration, short- and long-term memory issues, the time it took messages to leave my brain, problems with spatial awareness, diminished vocabulary, and difficulty spelling. I completely forgot about the report from the electroencephalogram, and he didn’t offer to share it with me.
“What happens next?” I asked.
“Watch and see.”
“What can I do?”
“Cut back on alcohol. No spirits, no cocktails. One glass of red wine a day, no more than five times a week. The more expensive, the better.”
I could live with that if I had to. Giulia was not a big drinker, and I drank considerably less with her than I had done when I was with Laura. The problem was weekends, when we went out with friends. Alcohol made everything so much more fun.
“What else?”
“Exercise at least four times a week. Read, write, keep working. Take up a foreign language. Chinese or something with different characters,” he said.
“I don’t want to learn Chinese. I’m too old; I don’t see the point. Languages aren’t my thing. These days I struggle to string a sentence together in English.”
He looked at me and nodded. “Well, writing is great, so keep that up.
“There’s just one more thing,” the neurologist said. “Try to keep a positive outlook. That can make a big difference.” I looked at him, and the expression on my face must have signaled that a positive outlook was about the last thing I was capable of keeping. “Well, try anyway,” he offered.
Prognosis Page 19