‘Suddenly my world would flip’: the woman who is permanently lost | Society

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Sharon’s world is regularly reversed by a rare brain malfunction. Now neurologists, and Wonder Woman, have come to the rescue





An image and a flipped image of Sharon, who has a rare brain condition









‘Your world hasn’t flipped but your perception of it has,’ says Sharon.
Photograph: Benjamin Rasmussen for the Guardian

In 1952, when she was a child, Sharon was playing in the front garden. She was blindfolded while her friends ran around her, laughing, trying not to be caught in a game of blind man’s buff. 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. She panicked. The house and the street 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 back yard 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 told her mother that everything around her looked different. Her mother looked irritated. 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.”

***

“I can remember that moment as if it were yesterday,” Sharon says, more than 60 years later. “I was five years old.”

Sharon woke up the next morning knowing that something weird had happened again. It was as though her walls had moved in her sleep. She was in her bedroom but things didn’t look as if they were in the right place. Her door was on the wrong side. “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’s disorientation began to occur more frequently, until it became constant. It made finding her way around her neighbourhood and her school impossible. She never mentioned her problem to anyone. Instead, she used her sense of humour and intelligence to complete her education, make friends and get married, without anyone ever knowing she was almost permanently lost.

“I hid it for 25 years,” she says.

***

I meet Sharon at her home in Denver, Colorado. Even here, she can get lost walking between her bathroom and her kitchen.

Sharon has flaming-copper hair, swept into a stylish crop set off by a bright pink blouse. The colours complement her deep-red lipstick. Outside her front door sits a giant metal lobster with a faded ‘Welcome’ sign written across his rusty belly. Inside, her house is open plan and as neat as a pin. Stuck on to her fridge door are pictures of friends, phone numbers, notes from grandchildren, a picture of Wonder Woman and a large photo of a handsome young Italian. 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 together, arms round each other’s shoulders and smiling at the camera, is pinned above it.





Sharon's fridge with pictures of Dr Giuseppe Iaria and Wonder Woman



Dr Giuseppe Iaria who diagnosed Sharon, and Wonder Woman who inspired her solution, both feature on her fridge. Photograph: Benjamin Rasmussen for the Guardian

“That’s Giuseppe,” says Sharon. “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. While working at the University of British Columbia, he investigated why some healthy people have a better sense of direction than others. One day, a middle-aged woman, 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 another condition. He began ruling out possible options one by one. He knew that inner-ear infections can damage a delicate structure called the labyrinth, causing the sensation that your world is moving around you. Brain tumours, lesions and dementia can damage the hippocampus, which is involved in many types of memory. Or maybe it was epilepsy, sudden bursts of uncontrolled electrical activity in the brain, that was stopping her from being able to memorise directions. It took Iaria and a colleague two years to eliminate all the 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 orientate 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. 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, memorising the stop and a prominent landmark near her office. But her employer was moving to an unfamiliar area, and she had decided it was time to get some professional help.

Iaria routinely encountered disorientation as a symptom of other conditions, but never as a developmental disorder – one that occurs as you grow up. He took Claire for a short walk around the local area. He then handed her detailed directions so she could 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”.

Iaria called her Patient One and named the condition “developmental topographical disorientation”: the inability to generate, and therefore use, a mental map of your surroundings, despite an absence of any brain damage.

Over time, Iaria found others with the same condition. One person told him: “No matter how long I live in the same building, I can never picture in my mind where the bathroom is.”

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