On hearing this, Sharon took to the internet and googled “prosopagnosia.” She came across a website that tested how good you are at recognising faces. After the test, there was a questionnaire. Halfway through, one of the questions hit a nerve: “Have you ever been in an environment that you know you should recognise but doesn’t look familiar?”
“I was like ‘Holy shit!’” says Sharon, as a bemused waiter places our lunch on the table. “I wrote everything about my condition in the notes section, trying to be as succinct as possible.”
Sharon pauses and turns to the waiter.
“She’s writing a book about crazy people,” she tells him. “And I’m one of them!” She laughs.
Without any further explanation, she returns to her story.
“Within a week, I received a call from Brad Duchaine, a researcher at University College London.” Duchaine had created the online test that Sharon had filled in, as part of a project that attemped to work out what brain mechanisms allow us to recognize our friends and family.
“He was so sweet,” says Sharon. “He believed everything I said, and assured me that at some point there would be someone doing research on my problem.”
“I promise you,” Duchaine told her. “When I find out who it is and where they live, I will let you know.”
“He just really made me come out of my funk,” says Sharon. “He gave me hope that what I had was a real thing, that I wasn’t just crazy, that I wasn’t a witch.”
Later that year, Duchaine emailed her saying he had good news. There was an Italian researcher moving to Vancouver to start researching the condition that she had described. That man was Giuseppe Iaria, and shortly afterward Iaria contacted Sharon to invite her over to his lab.
“The first time Giuseppe called, I sat at my kitchen table and I told him everything. He was such a gentle man, he nearly cried when I told him about the witch thing.”
IARIA TOLD SHARON that he thought there might be a problem with the way in which the different navigational cells in her brain communicate with one another. Over the next five years, he began to test this theory.
He started by scanning the brains of healthy people, looking at how different brain regions known to be important for orientation and navigation communicate with one another, and how that communication related to orientation skills. His team concluded that the best navigators were those with higher levels of communication among all of the regions of the brain involved in navigation.
This concept is called network theory and it’s an idea that underlies many human behaviors—that the connections between different regions of the brain that allow them to talk to one another may be more important than how well the regions function by themselves. It’s like having a quartet of the world’s best brass players who individually make wonderful sounds, but if they’re not playing in time with one another, that music turns into mayhem.
Iaria’s team then went on to scan the brains of a group of people with Sharon’s disorder. They noted a difference in the activity of their right hippocampus and parts of their frontal cortex, an area that allows us to draw all the information about navigation together and make judgments upon it. It’s also an area involved in reasoning and general intelligence.
Since Iaria’s patients had no problem with their memory, or their reasoning, he concluded that the condition must be a result of ineffective communication between the two regions, rather than a defect in each individual region alone.
“It’s not enough for the individual parts of the brain to be able to speak,” he told me. “They have to have good conversational abilities too.”
Since then, Iaria’s team has discovered that, just like Claire’s, Sharon’s brain looks anatomically normal, but several of the areas involved in navigation don’t communicate properly. I understood how this could prevent Sharon from forming a mental map of her surroundings, but I was confused as to why she could sometimes navigate perfectly well. “What causes the sudden flipping?” I asked Iaria.
“Some people don’t actually lack the skill of forming a mental map,” he said, “but somewhere in the process of collecting all the pieces of the puzzle, errors accumulate, information gets lost and suddenly the map shifts.”
The condition appeared to have varying degrees of severity. One of his patients’ worlds would shift back and forth every minute of the day. “One moment her brain was telling her the bathroom was on her left, the next it was on her right. It literally drove her crazy,” he said.
I asked Iaria what he thought of Sharon’s spinning technique. He said he knew of others who seemed to be able to reset their mental map, normally by concentrating on things around them. But, to his knowledge, Sharon’s technique is unique.10
“I have to admit I have no idea why it works,” he said. “There’s nothing wrong with her vestibular system—she doesn’t get nauseous or have problems with her balance—but somehow shaking this system by spinning around resets her mental map.”
He sighed.
“I can scan her brain, but I can’t enter her mind.”
* * *
Recently, Iaria has been testing his theory that developmental topographical disorientation has a genetic link.11 Of all the people he has identified with the condition—almost two hundred of them—around 30 percent have at least one other family member affected by the problem. To confirm their suspicions, he and his colleagues have been sequencing their patients’ entire genomes. They have identified a handful of potential genes that might be causing the problem. “We’re really close to identifying exactly what genes are responsible,” he said.
It’s a huge step. This kind of research will allow doctors to sequence the genes of children whose family members suffer from the disorder and predict whether they too will develop navigation problems. While it’s unlikely that they will be able to replace the broken genes anytime soon, it might be possible to intervene using brain-training exercises that help children use other parts of their brain to learn how to navigate.
“The earlier we catch it, the more likely we can do something to teach that child to learn specific navigational skills that might not develop naturally,” said Iaria.
I wondered whether there was anything the rest of us can do to improve our navigational skills or if it is too late by the time we’ve reached adulthood. “Sure,” said Iaria. “If you’re in a new area you should return to one point—your home base—often as this will help you build a better mental map.” He said you should also pay much more attention to your surroundings, take note of specific landmarks and think about their orientation to one another. “And don’t forget to turn around or look backwards from time to time: it’s a trick that animals do to make it easier to recognize their way home.”
* * *
As we leave the restaurant, I ask Sharon whether her daughter, son or grandchildren have any signs of the condition.
“No, thank goodness—they are all really good at navigating,” she says.
We walk a few steps in silence. Did Sharon’s condition appear spontaneously, I wonder, or might it have been inherited?
“Do you reckon—” I begin.
“My mum?” Sharon guesses. “Yes, I think she must have had it. Looking back it all makes sense. She never told my dad about my condition, probably because she’d never told him about hers. She never walked us to school or picked us up from anywhere unless there were other people with us. The only time she ever left the house was when she was in the car with my father or visiting neighbors on our street. She never went anywhere by herself—never.”
While it may be too late to help Sharon, just knowing there are people out there trying to understand the condition has been enough to help her turn her life around.
“I’ve always been silly and funny because it misdirected people away from the things I was hiding. Everyone always said, ‘You’re always in such a good mood.’ They didn’t know that I would go home at night and cry. Now I don’t need to. Now all my friends know wh
at I’ve got and why I have to go off and do my Wonder Woman impression when we’re out.”
That’s not to say there aren’t times when her condition is still a nuisance. Recently she got lost in a department store. She was late for a party, so in order to spin around and find her way back to her car she grabbed a pair of shorts and ran into the changing room. Only then did she realize the shorts she was carrying were for a toddler. She walked out of the changing room with her head held high.
“I just told the shop assistant, ‘Sorry, they were a little small.’”
I wonder, as we drive back to Sharon’s house and I recognize a few of the turnings, whether her brain is completely different from mine, or whether she is just at the far end of a navigational spectrum on which we all sit. I later asked Iaria what he thought. He said that the condition certainly exists in varying degrees of severity, but based on what we know so far, it’s not possible to conclude whether Sharon is at the bottom of the spectrum or off it completely.
“Look at it this way,” he said. “If you take a hundred people and relocate them in a new city, some will begin to learn their way around the area within days, others will take weeks, some will take months. After a year, all of those people will know their way around with varying degrees of confidence. But take someone with Sharon’s disorder to that city and they will never be able to give you directions, not after a year, not even after a decade. They will get lost every single day. The mechanisms involved are the same, but something, somewhere, is completely different from you or me.”
SHARON AND I WANDER back into her house, where she points me in the direction of the kitchen, this time to a plate of banana bread that she’s made for my flight home. We stand in front of her fridge again, arguing about how many pieces of cake I can legitimately take through security. Sharon insists I should take the whole plate. I compromise and carefully wrap three slices in a piece of tinfoil. I would later receive texts and emails from her, checking that I had gotten home safely.
I tell her that I am amazed, given what she has been through, that she is so nice, so normal. I know she won’t take offense at the word.
She glances back at the fridge. “The way you see me now is because of Giuseppe. I wasn’t this person before I saw Giuseppe. I was still a scared little girl. I don’t think I grew up and became a woman until the last ten years, really. I’m a happy person now. I realized that in order to be fulfilled I needed to learn to like myself and accept who I am.”
She smiles. “Now I have Wonder Woman on my refrigerator. I’m really proud of what I am today.”
Out on her doorstep I catch another glimpse of her giant lobster lawn ornament waving at me.
“I know he’s awful,” says Sharon, as she walks me to my car, “but I call him Louie.” She looks back at the house. “If I’m lost trying to find my way around all the condos and I see Louie . . . I know I’m home.”
* * *
On the plane, I look at a picture the two of us had taken together in the restaurant. Sharon’s bright red hair and beaming smile shine out. From the outside you would never know there was anything strange about the way she sees the world. Yet her mountains can leap from one direction to another; the home she recognizes can change in an instant.
We’re slowly creeping closer toward an idea of why this happens—just how the different cells in and around our hippocampus communicate with one another to form our internal GPS. Perhaps one day we’ll know enough to fix it when it goes wrong. But in the meantime, I wonder how many others are out there like Sharon, hiding a similar secret. People who are making excuses, working out tricks, driving themselves into depression for fear of being stigmatized. All because we find it so difficult to compare objectively how we see the world.
“Beautiful, isn’t it,” says the man sitting next to me, pointing out of the window.
I glance down at the twinkling lights of London coming into view and smile in agreement. But I have a peculiar feeling in my stomach. A few days ago, I would have taken it for granted that we were appreciating the same thing—the dark blue curve of the River Thames, the silhouette of the Houses of Parliament. But Sharon taught me that it was entirely possible that this gentleman and I were seeing the world completely differently from each other. I look at my neighbor, thinking about whether my London resembles his.
As we approach the city, the distinctive lights of the Shard growing larger in the window, I wonder, Is there any way of finding out?
Rubén
Seeing Auras
I squint as the bright sunshine greets me at the end of the tunnel. My bus rumbles past the Guggenheim Museum, with its erratic curves of stone, glass and titanium gleaming brightly. Farther down the road I am joined by a gigantic dog, twenty feet tall, covered with multicolored blooms. In the distance, a needle-thin tower soars into the sky, squeezed between a Gothic church and row upon row of orange-roofed apartments.
This is Bilbao, a Spanish city that sits at the northern tip of the Iberian peninsula. It is early morning and the temperature is already climbing. I am due to meet a fellow journalist, someone who I’m hoping will help me understand how other people’s worlds differ from my own. But first I have to find him.
I hop off the bus at a huge roundabout and try to figure out which of its seven exits to take. I am newly grateful for an ability to bring to mind a mental map of my surroundings, but am still finding it difficult to know which way to turn. I briefly consider attempting some Spanish to ask for directions, before deciding instead to follow the sounds of Abba’s “Chiquitita” being strummed on a sitar. This takes me out across the Nervión river that runs through the city dividing its districts. My final destination—an opera house called the Teatro Arriaga—is visible just across the bridge. I settle down on the amphitheater steps that lead into the theater, then sit back and give every man who passes a lingering stare.
In the end, with his thick brown beard, black-rimmed glasses and heavy-set frame, thirty-year-old Rubén Díaz Caviedes isn’t hard to miss. He turns toward me as I jump down the steps, waving awkwardly. We meet at the bottom. I hold out my hand; he ignores it.
“We do it the Spanish way,” he says, giving me a kiss on either cheek.
I must look surprised. Not at the kisses but his voice.
“Ah yes, my accent,” he says. “I’m told I sound like a posh Englishman.”
I laugh and we chat easily as Rubén leads me toward Bilbao’s old town in search of a traditional Basque breakfast: a large black coffee.
As we amble along the city’s cobbled streets, Rubén explains how he traveled to Bilbao from a village just along the coast, where he works for a contemporary culture magazine. Until recently, he lived in Madrid and then Barcelona, but moved to the countryside for a better work-life balance. For the mountains and the greenery, he says. “The things you can’t buy with money.”
Rubén’s new life is in his home town of Ruiloba, where some of his family still live. He is the oldest child of three—all boys, two and a half years apart. His childhood was a happy one, but unremarkable. Rubén was twenty-one when he first realized that he had an extraordinary brain. But to find out more, I have to ask him a question that I know he is going to detest.
“Rubén, you’re going to hate me for using this word, but is it auras that you see?”
Rubén takes a deep breath.
“Yes, I suppose, if you have three hours to explain it,” he says. “But if you have just a few minutes with someone and you tell them that, then people are going to think you’re a magic leprechaun or—” He pauses, searching for the right word in English. “Or a twat.”
* * *
In 1997, Loftur Gissurarson, an Icelandic scientist working in Reykjavik, invited ten remarkable people into his lab. All ten claimed they could see auras.
Auras are perhaps most commonly associated with religion, often seen floating around the bodies of Mary and Jesus in Christian artwork. They are alluded to in many spiritual practices as chi, prana or
chakra—mystical energy centers that are said to coincide with seven major areas of the human nervous system. They have been described as a halo of color or light, or an electromagnetic field that surrounds all creatures—emanations thought to reflect health, mood and enlightenment. The majority of the scientific establishment dismisses them.
I asked Gissurarson—now a managing director at a geothermal company in Reykjavik, but once described by peers as a “jovial, convivial, pipe-smoking parapsychologist”— which camp he was in. He said that for him it was purely a matter of experimentation; he had been interested in studying the aura because at the time the phenomenon had not been put to the test, scientifically speaking.
“A number of ostensible psychics claimed to be able to see auras and I was curious to see how it would make out in a controlled situation in a lab,” he said.
Paranormal activity had long captured Gissurarson’s imagination. He wrote his PhD thesis on Indridi Indridason, Iceland’s first and most prolific medium. In a book he later coauthored, he details the investigation of the phenomena produced by Indridason, which included making his own arm disappear, levitating and invoking the appearance of multiple voices during seances.1 So prolific were Indridason’s talents that several distinguished scientists, including Gudmundur Hannesson, a professor of medicine, twice president of the University of Iceland and a member of Parliament, studied him at close quarters. Hannesson’s records were meticulous. During seances in which objects would appear to fly around the room, Hannesson would attempt to limit every conceivable means of deception. He’d place a net around the room, he would hold Indridason’s feet and hands, he’d investigate the possible use of mirrors or accomplices. At the end of his study, he remarked that at almost every seance he noticed something that he considered suspicious, and at the next one would be especially vigilant on that particular point. “But,” he concluded, “in spite of all [precautions], I was never able to ascertain any fraud. On the contrary, the bulk of the phenomena were, as far as I could judge, quite genuine, whatever their cause may have been.”
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