When we left the hospital, Giulia wanted to celebrate—to go shopping and have a nice dinner. Her optimism made me feel emptier than ever.
“You don’t have Alzheimer’s!” she said jubilantly.
I hadn’t even thought I had Alzheimer’s! Well, maybe I had for a while, but that was before I’d discovered CTE.
“Are you never happy?” she asked as we hailed a taxi outside the hospital.
I reflected for a moment before answering, “Lately, no,” and hanging my head.
She clicked her tongue. “Jesus! You are such a drama queen! It’s great news! Be happy!”
I smiled and ignored her. I wasn’t in the mood for a fight. What I really wanted to do was curl up under a tree for a few hours and sleep the whole trip off. I thought back and remembered another New York Times article, in which a number of neurologists said they often didn’t tell patients with progressive dementias their diagnoses because the knowledge sent people into a downward spiral. It was easier to keep living with a sliver of hope. I didn’t really want to know about another hopeless prognosis, but I couldn’t help wondering what significant atrophy meant. And what was left after significant? Total? Comprehensive? Extreme? Absolute? Whatever it was, it wasn’t good.
I called my mother right after the appointment to tell her I was in town and to ask if Giulia and I could pop around and say hello. We had emailed each other on a few occasions since her lightning visit to Singapore, and I had contacted her when I had been in Sydney for work visits, but she had never been free to meet me. This time I caught her off guard.
“Oh,” she said, and began to fumble for an excuse. “Well, I suppose if you’re quick. I’m going out soon.”
“We will be quick,” I promised.
After my mother disposed of my father’s rare book collection, she sold the family home and moved into the apartment she had inherited from my grandfather. We turned up at her apartment, which wasn’t far from the hospital, and I introduced her to Giulia. I could tell instantly that my mother didn’t like Giulia. I wasn’t sure whether it was the fact that Giulia was fifteen years my junior, or if it was just my mother’s long-standing prejudice against pretty blonde women. She did her best to be polite and invited us in.
I told her I was in town to visit the neurologist and that I’d just had an MRI. That I was concerned about a deterioration in my memory.
“Don’t be ridiculous! Why would you have dementia? What a silly thing to think!” she said, looking to Giulia for support. Giulia nodded at her in agreement. I resisted the impulse to scream.
While we drank a cup of tea, my mother told me that all her friends were sick or dying. She discussed each in turn. Then she glanced at her watch. “I need to get ready now. I’m going to the opera.”
As we rode the elevator to the ground floor, Giulia looked at me, shook her head, and leaned in to hug me. “Your mother is horrible!” she said.
There was still a small part of me that was wounded every time I had contact with my mother. I couldn’t help wishing things were different. I couldn’t help hoping she would change.
Back home in Hong Kong, I visited the Wanchai Computer Center. A colleague who had just had her first baby and struggled with “baby brain” mentioned that Nicole Kidman had endorsed a Nintendo DS game with brain exercises. I love Nicole Kidman and considered her a credible spokeswoman for neuroplasticity, so I decided to get one for myself.
I stumbled inside a shop selling computer toys and attempted to haggle with an old man who had a thick clump of lucky hair sprouting from his chin. I failed and paid full price for a Nintendo device and the brain games disc. All my hopes hung on a game that had Nicole Kidman’s stamp of approval.
I took my Nintendo home, turned it on, and inserted a disc the size of a postage stamp marked Brain Age. A cartoon likeness of a Hawaiian man who claimed to be a famous neurologist popped up on the screen and invited me to test my brain age. I did as I was told. To my horror, all the questions involved numbers. Seconds later a message flashed up on the screen: Sorry, your brain age is 87! Hands trembling, I picked the Nintendo DS up and shoved it inside a drawer of my desk. That little device had seen in a matter of seconds what Giulia and Laura and my mother had failed to see. Days later I gave the Nintendo to a friend’s son.
Eight months after my visit to the neurologist, Filippo died from kidney failure. Giulia and I stroked his belly, and I kissed his head as the vet slipped a needle into his leg. His death and the decline that led to it left me devastated.
The day after Filippo died, I lost my job at the tobacco company. My old boss, whom I liked, had moved to London and been replaced by a new boss I didn’t like. He came into my office, closed the door behind him, and said, “Look, your performance is excellent, but you don’t fit in here.” It was hard to argue with that.
Giulia had spent two years with the tobacco company. She was a perfect fit, so in a rather awkward twist, she stayed and I left.
Days after I packed up my office, Giulia told me she had fallen out of love with me. She had just been promoted and loved her new job. I was heartbroken. I had known for more than six months she was drifting away from me, but there was nothing I could do. There wasn’t anyone else. She had just grown tired of me, and my depression, and my mood swings, and my anxiety. It had stopped being fun. I had stopped being fun.
My life felt like a plane falling out of the sky. In my relationship with Giulia, I had tried so hard to avoid repeating the same mistakes I had made with Laura, and yet here I was again. The problem was me.
Things got worse. I subscribed to a brain-training website called Brain HQ, which was developed by a neurologist who was an exponent of brain plasticity. I did the most basic exercises under the following categories: Attention, Brain Speed, Memory, and People Skills (facial and voice recognition), and I was horrified to learn I scored in the bottom quarter on each dimension. My brain was in worse shape than I had thought it was.
I called my neurologist and explained my frustrations. I was noticing problems with my brain almost every day, but the people I’d worked with, my best friends, and the person I’d lived with for six years had noticed nothing. Giulia left me because she had tired of hearing me complain about something she could not see, or so she said.
“Well, if she didn’t want to stick around, she wasn’t worth the effort,” my doctor said over the phone. “You haven’t invented anything. You have a problem. The scans show that. We just don’t know what kind of problem yet. I have a patient with Alzheimer’s who is a professor of architecture. He’s cut his teaching load, but he still works.”
I fell silent.
“You do not have Alzheimer’s! I’m just trying to make the point that no one has noticed his problems. That’s how it is for many smart people with brain conditions. They may notice a decline, but it is not necessarily evident to others. It might not be for some time.”
I exhaled.
“Any decline with you is happening very slowly, if at all,” he added. “Keep writing.”
I thanked him and hung up the phone, thinking that losing one’s memory and cognitive abilities was a lot like draining a dam using a bucket. It could take a while.
I found a job working four days a week in HR for a construction company, and Giulia and I both decided to move across town to the greener, cheaper side of Hong Kong. We took leases on two apartments in the same block. Our goal was to continue to coparent our dogs and cats. Between us, we now had four rescue dogs; Giorgio, the cat Giulia had bought in Singapore; and two cats I had rescued. We wanted them to be able to move between our apartments with ease. We split the costs of a domestic helper who could care for our pets when we were at work. I made Giulia promise she would care for them forever should anything happen to me, and she gave me her word. I told her if she ever changed her mind that I would come back from the dead and make every day of her life hell.
“That’s okay,” she said, suppressing a smile. “I lived with you long enough. I know w
hat hell feels like.”
I spoke to my two closest friends, Helena and Isabelle, and told them about my significant atrophy. Both of them were adamant that they couldn’t detect any problems with my brain but promised that, if they did, they would tell me. Isabelle offered to take me to Zurich if things got really bad. “I’ll hold your hand,” she said. “I promise.” That meant a lot.
I began to retreat from life. When I wasn’t at work, I spent my time at home with our dogs and cats. Sofia, a black-and-white dog who looked eerily like Bess, would not leave my side. We had rescued her within a week of Giulia moving to Hong Kong, after someone had found her starving, without fur, and doing her best to raise seven tiny puppies. Her puppies found homes quickly, but she had shifted around in foster care for more than a year before we saw a sign in a vet surgery saying she needed a home urgently. Sofia and I had formed the kind of bond I had shared with Bess. She was an incredibly loving and empathetic dog who sat at my feet when I was at my desk or beside me on the sofa when I watched TV. At night she took Giulia’s place in my bed, stretching out alongside me, under the covers whenever it was cold, making sure that part of her was in contact with part of me. On the few occasions I cried, she licked my hand and would not stop until I did.
Things continued to get worse in my head. In early 2013 I emailed my neurologist and explained that I had entered what seemed like the next wave of deterioration. What felt like a bad day less than a year ago was now the best of days. I could no longer trust my memory. It didn’t matter if I was talking to friends about a movie we had seen or trying to remember something about a place I once visited. I was almost invariably wrong. For someone who had spent most of her life reminding everyone around her she was right, this required some adjustment. My dining room table was smothered with Post-it notes—things I had forgotten and finally remembered, and things I needed to remember in the future. I felt like I was stepping down a ladder into the sea, with every couple of months bringing new, unwelcome challenges.
I told my doctor I had found a new job that allowed me to work a four-day week because I needed the money and a visa to allow me to continue living in Hong Kong. The problems with my brain were not impacting my work, as long as I went everywhere with a notebook and wrote everything down. My coworkers had only commented on my memory once. Two of them had giggled when I offered to buy them coffee and wrote their orders down inside my notebook. “Three coffees and one of them is yours,” one laughed. “Can’t you remember?” I shrugged and smiled. It had become exhausting. I promised myself that I would stop work as soon as I turned fifty and use what time I had left to write.
I told the doctor that my brain felt exhausted—one part was always trying to pick up the slack from another part that had perished. I worried that soon the parts of my brain capable of compensating would shrink and I’d have nothing left at all.
He wrote back: “I share your concern about your impaired cognitive function. It is difficult to know without studying you closely whether the condition is progressing or whether you had a monophasic insult that has left its damage, and now, over time, your reserve of memory and capacity for multitasking has started to reduce.” Come back and let’s repeat the tests, he suggested, and do some psychometric tests.
The last time I had submitted to psychometric tests, I had learned my IQ was around eighty. That news had devastated me. The IQ test I had taken in the newspaper the night I found myself unable to sleep in London had increased that score to ninety. It was still a very low number. I would never submit to the stress of another series of psychometric tests.
Without much in the way of an alternative, I decided to stay in Hong Kong, sharing my dogs and cats with a woman who no longer loved me and spending the hours I wasn’t working writing in an attempt to preserve whatever memories I had left.
I longed for the day when I could finally give up.
12
MELANCHOLIA
I stopped working in December 2013, three months after my fiftieth birthday. My days in HR were finally over. I would never fire another person, hire another person, discipline someone for absenteeism, or tell another chief executive that “cunt” was not an acceptable term to use in the workplace.
I had reconciled myself to arranging my own death, rather than lose my mind to the dementia I was convinced awaited me. I prepared a will and started giving my favorite possessions away to my friends. I stopped buying things that I wouldn’t use immediately. The last thing I wanted to leave was a legacy of clutter. In fact, I wanted to leave no trace at all. I sold my car. I sold my house in Sydney. I promised my cousin I would buy her a house in return for taking care of my dogs, should anything happen. She lived on Queensland’s Sunshine Coast and worked only part-time. The pups would be happy enough there, where they could gambol along the sands of Coolum Beach.
I planned to be dead by the following Christmas.
I downloaded paperwork from Dignitas, an organization based outside Zurich that assists terminally ill people to die. I wasn’t terminally ill, of course, but that seemed, to me, a minor stumbling block. It had taken me months to summon the courage to even open the link on their website. Once I had, everything became much simpler. I was taking matters into my own hands and choosing to die a peaceful, dignified death, before dementia ravaged what was left of my brain. I started thinking about my last supper, a fondue and chocolate dinner with my closest friends at a fancy restaurant in Zurich, followed by all the champagne I could drink. I toyed briefly with the idea of paying for a high-end call girl. Sadly, perhaps, that was something I would not be able to follow through on. Assisted suicide I believed I could manage. Hiring a call girl I could not.
In April 2014 I traveled to Sydney to see my neurologist. I planned to ask him to sign the paperwork saying I was a suitable candidate for assisted suicide. We talked for a couple of minutes before he sent me off to imaging for a brain MRI and a new scan I had never had before, a spectroscopy. Brain spectroscopies are performed on the same machine as an MRI, but they measure changes in brain chemistry.
An attractive woman with perfect teeth and short dark hair invited me into a small, stark, white room and helped me lie down on the bed.
“The tests are going to take forty minutes,” she said, and I looked at her with horror.
“I don’t think I can lie in there for forty minutes. That’s a very long time.” I had struggled in the past to lie still even for twenty minutes.
“This is a brand-new machine,” she said gently. “It’s much quieter than the older ones, and it has a rearview mirror. You can watch the street if you like. It helps the time pass. There’s music too. Buddha-Bar.”
Normally I would rather stick a pitchfork through my foot than listen to world lounge music, but what choice did I have? She placed a set of headphones over my ears, clamped a plastic frame tightly over my head, and asked if I was comfortable.
“No,” I said, and she laughed.
“In an emergency, just press the red button and I’ll come in right away. And no swallowing or twitching during the tests or we’ll need to repeat them. Keep perfectly still,” she said, and winked.
I couldn’t help wondering if she was gay. She was doing a good imitation of flirting, but perhaps it was just a ploy to keep me docile. I waved goodbye with one hand, and she pressed a button that sent me deep inside the large plastic cone.
Her voice came through a microphone, calm and crisp. “Hi, Sarah. Are you okay?”
“No!” I wanted to say, but I croaked, “Yes,” trying to be brave.
The tests began. First the drilling, then the whirring, then the jackhammering, and then a noise that sounded like someone was trying to crack open the shell of my machine with an ax and steal my brain. My mind darted across the Pacific to China, where people woke up in ice baths to discover slits down their fronts and sides and organs missing. I strained to hear the dreary sameness of Buddha-Bar through the clatter.
Saliva leaked down my throat. My chest heaved. I
needed to swallow or I was going to cough—one of those coughing fits that come on in a theater or a concert hall and won’t let go. I will choke, I thought, and drown in my own spittle. I closed my eyes and pretended I was dead.
After what felt like ages, I glanced up at the rearview mirror and looked at the street: an intersection with a café on one corner, a flame tree on the other. A woman trailed behind her dog, and a gaggle of people walked to work. I drifted off and imagined I was the sole witness to a robbery, a knifing, a kidnapping. Like Jimmy Stewart in Rear Window. What would happen then? For a moment or two I forgot my damaged brain.
Finally the nurse pressed a button that slid me out from inside the machine and entered the room.
She took my hand, squeezed it, and looked at me with a mixture of sadness and pity. Your skull is empty. It’s like a giant cicada shell. We can’t find anything inside it, was what I expected her to say.
Instead she said, “Sarah, I’m so sorry. We’re going to have to repeat the tests. I’ve never done a spectroscopy before, and it seems I’ve made an error.”
I was convinced my brain had shown something so shocking that it needed to be viewed from new and different angles. People needed to be assembled to witness the void inside my head and that would take time.
She must have detected my terror because she said quickly, “The problem isn’t you. It’s me.”
Her boss, an unambiguously heterosexual older woman, walked in to explain. “It’s a new machine, and not everyone knows how to use it. It’s just not as simple as it seems. We’re very sorry.”
“This will only take twenty minutes,” the pretty nurse said, squeezing my leg. “You’re going to be fine.”
I tried to smile. I had come a long way for these tests, and I needed them if I was going to be allowed to fly to Switzerland to die.
When the second test ended, I wandered off to another part of the hospital where a middle-aged woman with a rash across her face attached electrodes to my head and conducted an electroencephalogram.
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