* * *
Something Bob said to me as we finished our meal stuck with me. “You know, one of the best things about having a perfect memory,” he said, “is the ability to remember those I have lost.
“I make sure I think a lot about people I love when they’re alive so that I can go back to any time in their life that I was with them and remember it like it was yesterday. Then if they’re no longer with me, it’s like I can still spend time with them. The people I’ve lost don’t feel like they’re truly gone because my memories of them are so clear. I can go back to my younger brother’s life and not have to mourn him like others do, because I can remember our times together so well. I think about people a lot and appreciate my time with them because once they’re gone, they won’t be here, but my memories always will be.”
I’ve thought about that a lot since we met. When my mum was diagnosed with incurable breast cancer, it motivated me to spend the last year of her life making a special effort to concentrate on the time we were spending together. Those memories, I hope, are there for good.
I know my memory will never be as perfect as Bob’s or Jill’s. But others, like Mullen and Koltanowski have shown me that even my ordinary brain is capable of remembering so much more than I ever realized—just by creating a special palace around my memories that can never be erased.
Sharon
Being Permanently Lost
1952
Out on the front lawn, Sharon was blindfolded while her friends ran around her, laughing, trying not to be caught in a game of blindman’s bluff. Sharon grabbed hold of someone’s sleeve and whipped off the scarf that covered her eyes. “You’re it!” she shouted.
Then she blinked and looked around her. Suddenly, panic started to rise. The house, the street, it all looked different. She had no idea where she was.
Sharon ran into the back garden and discovered her mother sitting in a lawn chair.
“What are you doing here?” Sharon asked. “Whose backyard is this? Where am I?”
Her mother looked at her, puzzled.
“What’s wrong with you?” she asked her daughter. “This is our house!”
Sharon was totally disoriented. She told her mother that everything around her looked different. Her mother looked irritated. She wanted to know why Sharon thought this wasn’t her home. Sharon didn’t understand: Why wasn’t her mother helping her?
“I don’t know where this place is, it all looks wrong,” she said. “I’m so confused.”
Her mum looked her in the eye, and pointed a finger at her face.
“Don’t ever tell anybody about this,” she said. “Because they’ll say you’re a witch and burn you.”
PRESENT DAY
“I can remember that moment as if it were yesterday,” Sharon says, over the phone. “I was five years old.”
Sharon had woken up the following morning knowing that something weird had happened again. She says it was as though her walls had moved in her sleep. She was in her bedroom but things didn’t look like they were in the right place. Her door was on the wrong side of her for a start. “I knew it had to be my bedroom,” she says, “and bits of the room were familiar, but it was all wrong at the same time, nothing was where I thought it should be.”
Sharon didn’t know it at the time but her brain was having trouble producing an accurate mental map of her surroundings.
Sharon’s disorientation began to occur more and more frequently until it became a constant presence throughout her day. It made finding her way around her neighborhood and her school completely impossible. In spite of this, she never mentioned her problem to anyone. Instead, she used a natural sense of humor and sharp intelligence to complete her education, make friends and even get married without anyone ever knowing she was almost permanently lost.
“I hid it for twenty-five years,” she says.
“Twenty-five years?”
“Yes, well, you know . . . the witch thing.”
* * *
Sharon’s condition was one of the most peculiar I had ever come across. The loss of an ability that I had never given a second’s thought to—the ability to orient.
I had first heard about the condition after it was described in a medical journal called Neuropsychologia.1 One of the authors of the paper had been kind enough to put me in touch with Sharon, whose case was among the most severe he had discovered.
Eager to find out more about this mysterious disorder, and to include Sharon in my journey, I emailed her. Would she mind if I came over to Denver to meet her in person?
“That would be wonderful!” she replied.
I was keen to see her in her own home. Even there, she said, she can get lost walking between her bathroom and her kitchen.
Just hours after saying farewell to Bob, I grab some sleep in a musty motel that smells of damp clothes and cheese and wake at the crack of dawn to get back to the airport. Bleary eyed, I arrive in Denver. My phone beeps as I sit in the parking lot familiarizing myself with the left-hand drive of my rental car. It’s a text from Sharon: “I hope you can find your way here without a problem. Call me if you get lost . . . maybe I’ll be able to guide you. Ha, what am I thinking!”
I smile and switch on the GPS. The screen flashes and then goes dead. Eventually I manage to get the map to appear—although the image is dark and fuzzy. The irony isn’t lost on me, despite my jet lag.
Several wrong turns later, I pull into a quiet neighborhood full of neat little condos. I work my way around the maze of streets and spot Sharon, standing on her veranda, waving down at me.
I announce my arrival to her neighbors by starting the car alarm while attempting to turn off the engine and change out of my driving shoes. I am wearing only one sandal when Sharon opens the car door. It wasn’t exactly the first impression I had intended to make. Nevertheless, she greets me with a warm hug and a huge smile on her face.
“It’s so great to meet you finally. Aren’t you just adorable!”
Sharon has flaming-copper hair, swept into a stylish crop that is set off by a bright-pink blouse. The colors complement her deep-red lipstick. Her sunglasses instantly remind me of one of those slightly eccentric grandmas you see in Hollywood movies.
I surreptitiously slip on my second sandal and follow her to the front door, where we are met by a giant metal lobster with the word “Welcome” written across his rusty belly.
Sharon shows me into her house, which is open plan, peaceful and as neat as a pin. She offers me a drink, and we wander into the kitchen, where I stop to stare at her fridge. There’s the normal assortment of memorabilia stuck on the door—pictures of friends, magnets, telephone numbers, notes from grandchildren, a picture of Wonder Woman—but it’s a large piece of paper right in the center that catches my eye.
It is a photo of a handsome young Italian, with thick eyebrows and three-day-old stubble, looking into the distance. It is held up with a magnet that says: “A true friend knows everything about you . . . and likes you anyway.” A smaller photo, of Sharon and the same man sitting at a dinner table together, arms around each other’s shoulders and smiling at the camera, is pinned above it.
“Who’s that?” I ask.
“That’s Giuseppe. Isn’t he cute? He’s such a gentle and compassionate man. He changed my life.”
* * *
AS A YOUNG POST-DOC, Giuseppe Iaria was fascinated by navigation. His interest had begun as an undergraduate student, when he worked on a project investigating why people with damage to one side of their brain sometimes have problems navigating. Later, while working at the University of British Columbia, he decided to investigate why some healthy people have a better sense of direction than others. One day, completely out of the blue, a middle-aged woman, whom I will call Claire, showed up at his lab complaining of a peculiar problem: she was constantly lost.
Iaria suspected that Claire’s disorientation was the result of some other condition. He began ruling out possible options one by one. He knew, for in
stance, that inner-ear infections can damage a delicate tissue called the labyrinth, causing the sensation that your world is moving around you. Perhaps it was this, he thought, that was causing Claire to feel disoriented? Brain tumors, lesions and dementia can damage the hippocampus, which, as we know, is involved in many types of memory. Could one of these things be preventing Claire from being able to remember her way around? Or maybe it was epilepsy that was stopping her from being able to memorize directions; sudden bursts of uncontrolled electrical activity in the brain can do that. It took Iaria and his mentor, Jason Barton, two years to cross off all potential problems. But, as far as their tests showed, Claire was in perfect health.
Claire told Iaria that she hadn’t lost the ability to orient herself; she’d just never learned it in the first place. She recalled that from the age of six she would panic at the supermarket each time her mother disappeared from view. During school, she would have to travel with her sisters or parents, and she never left home by herself because she got lost each time she tried. As an adult, Claire had figured out how to get to work by taking a particular bus, and memorizing the stop and a prominent landmark near her office. But her work was moving to an unfamiliar area, and she had decided it was time to get some professional help.
Iaria was intrigued. He routinely encountered disorientation as a symptom of other conditions, but never as a developmental disorder—one that occurs as you grow up. Determined to get to the bottom of the problem, he took Claire out for a short walk around the local area. He then handed her detailed directions for how to repeat the route by herself. Claire followed the directions without any mistakes. However, when Iaria asked her to draw a map of the route she had just walked, or of the town in which she lived, she found it impossible. She said she did not have “in my mind a map to report.”2
Iaria called her Patient One and named the condition developmental topographical disorientation disorder: the inability to generate, and therefore use, a mental map of your surroundings, despite an absence of any brain damage.
Iaria figured there must be others out there with the same condition and created a website to encourage people to test their navigational skills. He also went on a radio chat show to talk about the disorder. In the middle of the broadcast, he received a phone call live on air.
“It was like we’d staged it,” he told me. “A guy called in and said, ‘I’m always lost. I’ve always been this way. I’ve told people and they just don’t get it, they think I get distracted and I give up. I don’t tell people anymore, they just don’t believe that I can be that bad at directions.’”
Over time, Iaria found others. One person told him: “No matter how long I live in the same building I can never picture in my mind where the washroom is.”
Sharon was case number four. Unfortunately, by this time, she was sixty-one years old.
* * *
I settle on the sofa with a glass of water. Sharon sits opposite.
“Take me back to the beginning. Were you permanently lost from the age of five?”
“No,” she says. “Some of the time my world looked perfectly normal and I could navigate perfectly well. But then all of a sudden my world would flip, and I’d become completely disoriented.”
“And you never told anyone?”
“No. Instead I was the class clown. I thought if I could stand up and make the class laugh, they wouldn’t know my secret, so I became this comedienne.”
“So no one ever noticed that most of the time you were completely lost?”
“No. I would just follow my friends when we walked to school, and if it happened during class, I’d spend the rest of the lesson trying to memorize the way the room looked so that I’d know where everything was the next time it happened.”
One day, when Sharon was still a young girl, she came across a solution. She was at a friend’s party, and next in line to play Pin the Tail on the Donkey.
“You know the one,” she says. “Where you’re blindfolded and you spin around and then try to stick the tail in the right place. After I spun around I just knew something was horribly wrong. I felt like I was walking in completely the wrong direction. I pinned the tail on the donkey and everyone laughed like they do, and I took the blindfold off. I thought, ‘I know I’m at my friend’s house, but this doesn’t look like my friend’s house.’”
This momentary crisis turned out to be the saving grace that would help her navigate the rest of her life. For when it was her turn to be blindfolded and she was spun around for a second time, Sharon’s world flipped back to normal.
“That’s when I learned that spinning could cause the disorientation to happen. But that it also fixed it.”
“These days I usually try to find the nearest bathroom,” Sharon says. “I go into a cubicle, close my eyes and spin around. I can’t quite describe the sensation. It’s not a sound, just a sense that everything feels back to normal. When I open my eyes my world is recognizable again.”
She chuckles and points toward the picture pinned to her fridge. “I call it my Wonder Woman impression.”
“Why do you do it in the bathroom?”
“Well, what would you think if you saw an old woman standing by her car spinning around in circles with her eyes closed?”
She has a point.
“I always did it in secret because I was humiliated by it all.”
* * *
For most of us, navigating feels easy and automatic. You arrive in a new city and your brain starts trying to make sense of the place. On your first day, you find your home, your base for the trip, and over time you start recognizing certain landmarks. You become familiar with your surroundings.
Many of Iaria’s patients feel like they live in a constant “first day.” No matter how much time they spend somewhere, their surroundings never become familiar.
Like Claire, many have learned to navigate the most important routes in their life by remembering a specific sequence of turns. To get from their desk to the bathroom, for instance, they know they need to turn left at the printer, right at the potted plant and go through the double doors.
But there’s a reason this isn’t how you or I navigate. To remember all your journeys this way would place a huge strain on your memory. Instead, we use a dynamic tool, what scientists call a cognitive map, a kind of internal representation of our surroundings that becomes familiar so that we don’t have to remember a specific sequence of directions, but can merely visualize where things are in relation to one another and ourselves.
Try it for yourself now. If I asked you to think about the route you’d need to take to get to the bathroom, could you do it? You probably don’t even have to try. We tend to take for granted the ability to picture a route in our mind’s eye, but it is a remarkable skill—in fact, one of the most complex behaviors that our brain can perform. And one that has puzzled scientists for decades.
Part of the problem is that normal navigation enlists several areas of the brain, all of which are having an incredibly sophisticated conversation with one another.
WHEN SHE’S NOT SCANNING world memory champions, Eleanor Maguire spends a great deal of her time trying to work out exactly what parts of the brain are doing the talking. Her motivations aren’t completely selfless—although she is one of the UK’s top navigation researchers, she is also hopeless with directions.
“It was absolutely the reason I got into this area of research,” she said, when I dropped by her lab one day. “I’m so bad at directions—it’s really debilitating.”
We were sitting in her office, in Bloomsbury, central London. Maguire tells me that when she goes out the front door she will deliberately turn in the opposite direction to where she thinks she needs to go. That way, she said, “I’m correct about ninety percent of the time.”
One afternoon not long ago, I hurried past Maguire’s lab on my way to get my hair cut. I was late so I rushed to the main road and stuck out my hand. I was rewarded by the appearance of Geoff, a black-cab driver
who had been ferrying people around the streets of London for more than twenty years. I climbed into the back seat and reached for my seat belt.
“Where to, love?” he asked.
“South Molton Street,” I replied.
Without a second’s thought, Geoff spun the cab around, slipped down a side street and headed directly to the salon. He never once consulted a map. That’s because he had mastered the Knowledge, a famous test that all London cabbies must pass, which involves learning all twenty-five thousand roads within a six-mile radius of Charing Cross station.
Maguire wondered whether cab drivers like Geoff, who have an incredible sense of direction, might reveal what makes other people so good at navigating. By scanning their brains, she discovered that the back part (posterior) of the hippocampus in taxi drivers is larger compared to that of non-taxi drivers.3 But was that a result of being a taxi driver, or were people with bigger hippocampi just more likely to become taxi drivers? To find out, Maguire scanned the brains of seventy-nine trainee taxi drivers several times over four years as they began to learn the Knowledge. Those who passed the test had a bigger posterior hippocampus than when they started, whereas there were no changes seen in trainee taxi drivers who failed their exams or in thirty-one people whose age, education and intelligence were similar to the taxi drivers’, but who had never attempted to learn the Knowledge.4 Clearly, the hippocampi were growing alongside navigational abilities, which raises the following question: How do they help us get from A to B?
IN THE 1960S, the British neuroscientist John O’Keefe, also at University College London, began dabbling with the idea that the secret to normal navigation lay in the hippocampus. To test this theory, O’Keefe studied the brains of rats as they walked around an open space. He wanted to know which neurons were active as the rodents explored their environment. He did this by placing a set of thin electrodes into their hippocampi, which could record the little spike of electricity that occurs when an individual neuron is communicating with its neighbors.
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