Tag Archives: world

Good news at last: the world isn’t as horrific as you think | Hans Rosling

Things are bad, and it feels like they are getting worse, right? War, violence, natural disasters, corruption. The rich are getting richer and the poor are getting poorer; and we will soon run out of resources unless something drastic is done. That’s the picture most people in the west see in the media and carry around in their heads.

I call it the overdramatic worldview. It’s stressful and misleading. In fact, the vast majority of the world’s population live somewhere in the middle of the income scale. Perhaps they are not what we think of as middle class, but they are not living in extreme poverty. Their girls go to school, their children get vaccinated. Perhaps not on every single measure, or every single year, but step by step, year by year, the world is improving. In the past two centuries, life expectancy has more than doubled. Although the world faces huge challenges, we have made tremendous progress.

The overdramatic worldview draws people to the most negative answers. It is not caused simply by out-of-date knowledge. My experience, over decades of lecturing and testing, has finally brought me to see that the overdramatic worldview comes from the very way our brains work. The brain is a product of millions of years of evolution, and we are hard-wired with instincts that helped our ancestors to survive in small groups of hunters and gatherers. We crave sugar and fat, which used to be life-saving sources of energy when food was scarce. But today these cravings make obesity one of the biggest global health problems. In the same way, we are interested in gossip and dramatic stories, which used to be the only source of news and useful information. This craving for drama causes misconceptions and helps create an overdramatic worldview.

We still need these dramatic instincts to give meaning to our world. If we sifted every input and analysed every decision rationally, a normal life would be impossible. Just as we should not cut out all sugar and fat, we should not ask a surgeon to remove the parts of our brain that deal with emotions. But we need to learn to control our drama intake.

It is absolutely true that there are many bad things in this world. The number of conflict fatalities has been falling since the second world war, but the Syrian war has reversed this trend. Terrorism too is rising. Overfishing and the deterioration of the seas are truly worrisome. The list of endangered species is getting longer. But while it is easy to be aware of all the bad things happening in the world, it’s harder to know about the good things. The silent miracle of human progress is too slow and too fragmented to ever qualify as news. Over the past 20 years, the proportion of people living in extreme poverty has almost halved. But in online polls, in most countries, fewer than 10% of people knew this.

chart

Our instinct to notice the bad more than the good is related to three things: the misremembering of the past; selective reporting by journalists and activists; and the feeling that as long as things are bad, it’s heartless to say they are getting better. For centuries, older people have romanticised their youths and insisted that things ain’t what they used to be. Well, that’s true. Most things used to be worse. This tendency to misremember is compounded by the never-ending negative news from across the world.

Stories about gradual improvements rarely make the front page even when they occur on a dramatic scale and affect millions of people. And thanks to increasing press freedom and improving technology, we hear about more disasters than ever before. This improved reporting is itself a sign of human progress, but it creates the impression of the exact opposite. At the same time, activists and lobbyists manage to make every dip in an improving trend appear to be the end of the world, scaring us with alarmist exaggerations and prophecies. In the United States, the violent crime rate has been falling since 1990. But each time something horrific or shocking happened – pretty much every year – a crisis was reported. The majority of people believe that violent crime is getting worse.

Vaccination session Mali


A vaccination session at the Baraouéli health centre in Baraouéli, Ségou region, Mali. Photograph: Unicef/UN/Keïta

My guess is you feel that me saying that the world is getting better is like me telling you that everything is fine, and that feels ridiculous. I agree. Everything is not fine. We should still be very concerned. As long as there are plane crashes, preventable child deaths, endangered species, climate change sceptics, male chauvinists, crazy dictators, toxic waste, journalists in prison, and girls not getting an education, we cannot relax. But it is just as ridiculous to look away from the progress that has been made. The consequent loss of hope can be devastating. When people wrongly believe that nothing is improving, they may lose confidence in measures that actually work.


It is just as ridiculous to look away from the progress. The consequent loss of hope can be devastating

How can we help our brains to realise that things are getting better? Think of the world as a very sick premature baby in an incubator. After a week, she is improving, but she has to stay in the incubator because her health is still critical. Does it make sense to say that the infant’s situation is improving? Yes. Does it make sense to say it is bad? Yes, absolutely. Does saying “things are improving” imply that everything is fine, and we should all not worry? Not at all: it’s both bad and better. That is how we must think about the current state of the world.

Take girls’ education. When women are educated, the workforce becomes diversified and able to make better decisions. Educated mothers have fewer children, and more survive. More energy is invested in each child’s education: a virtuous cycle of change. Ninety per cent of girls of primary school age attend school; for boys, it’s 92%. There are still gender differences when it comes to education in the poorest countries, especially in secondary and higher education, but that’s no reason to deny the progress that has been made.

Remember that the media and activists rely on drama to grab your attention; that negative stories are more dramatic than positive ones; and how simple it is to construct a story of crisis from a temporary dip pulled out of its context of a long-term improvement. When you hear about something terrible, calm yourself by asking: if there had been a positive improvement, would I have heard about that? Even if there had been hundreds of larger improvements, would I have heard?

This is “factfulness”: understanding as a source of mental peace. Like a healthy diet and regular exercise, it can and should become part of people’s daily lives. Start to practise it, and you will make better decisions, stay alert to real dangers and possibilities, and avoid being constantly stressed about the wrong things.

Hans Rosling was a Swedish physician, academic and statistician, who died in 2017. This is an edited excerpt from his posthumously published book Factfulness: Ten Reasons We’re Wrong about the World (Sceptre)

Brainstorm: Detective Stories from the World of Neurology; Unthinkable: The World’s Strangest Brains – review

When I was a boy I had a recurring dream that Lilliputian figures were scurrying under my bed. I can’t recall if they bound my hands and feet like Gulliver, but I certainly found their activities fascinating and made no effort to resist, even when, on occasion, they succeeded in moving my bed slightly to the left or right.

Every now and then, however, they would push the bed a little too close to the window. That I did not like, because it put me in range of the clown waiting on the balcony (I have always been terrified by clowns). Now, frozen by fear, I really was immobilised and it was only by screaming that I could snap myself awake and escape their night-time peregrinations.

I was reminded of my lucid dream by the story of Donal, one of the patients featured in Brainstorm, Suzanne O’Sullivan’s new book of “detective stories from the world of neurology”. For 30 years Donal led a perfectly ordinary and seemingly contented life as a school janitor. Then one day he was summoned to the headmistress’s office and informed the school was making cuts and his job might be in jeopardy. That’s when he first saw the dwarves – “seven small brightly coloured men”, as Donal put it – scamper across the room and disappear behind the headmistress’s filing cabinet. As you can imagine, at first Donal told no one, but when one night the dwarves appeared beneath his bed and he gripped his wife’s arm in fright, he was forced to come clean and seek medical help.

Those of us who have “normal” brains take our waking lives for granted. Levitating beds and cartoon characters are all very well for the dream world, but when we awake we expect to find the bus stop to be in the same place that we left it yesterday and the street to be the same reassuring shade of grey. But unusual spikes in electrical activity can happen to anyone at any time, sparking transient phenomena such as goosebumps or deja vu, which feel all too real at the time. Moreover, whether as a result of genetic abnormalities, hormonal imbalances, or microscopic lesions, some brains are wired or fire differently. Neurons responsible for one function get crossed with another and suddenly pains take on distinctive tastes, we begin to see vivid auras or are able to access long-lost memories or, conversely, can remember nothing at all and are condemned to the purgatory of the perpetual present.

As one would expect from a neurologist in the Oliver Sacks tradition, O’Sullivan is a sure guide to these maverick brains and strange auras – a word, she reminds us, that is Greek for “breeze” and was originally used in the context of epilepsy. And like the late Dr Sacks, she is careful not to pass judgment on her patients, studiously parsing their accounts of hallucinations and seizures for clues to the underlying neurological dysfunction. Thus, rather than dismiss Donal as a fantasist or someone with psychiatric problems when an MRI scan of his brain proves normal, O’Sullivan hooks him up to an EEG (electroencephalogram) and has him sleep for several days in her epilepsy clinic to monitor and film his seizures. In this way, she finally captures the sudden telltale increase in electrical impulses that attends the dwarves’ appearance and recognises it as a seizure affecting Donal’s occipital lobe, the brain region that controls visual phenomena. Why dwarves, and precisely what triggers these seizures she cannot say, but by giving Donal medication to control his hallucinations she restores his mental equilibrium.

The individuals canvassed in science writer Helen Thomson’s book Unthinkable are not so fortunate. The manifestations of their strange brains cannot be so easily treated, nor, in many cases, would they wish them to be. Take Bob. He can recall a day from 40 years ago as easily as yesterday. Not just who he was with and what the weather was like, but his exact thoughts and sensations. Sometimes, as when the experience was unpleasant, these memories can be a source of pain. But replaying such memories also enables Bob to learn from his mistakes and, in the case of a lost loved one, his extraordinary memory allows him to travel back in time. Indeed, Bob makes a point of memorising relationships that are valuable to him, the better to be able to relive them later.

According to Thomson, we can learn a lot from people like Bob. She too takes inspiration from Sacks, but not being a neurologist, she cannot bring us diverting tales from the bedside. Instead, Thomson makes a virtue of her limitations by travelling the world in search of “strange brains” in an effort to understand them as a “friend might”. It is, for the most part, a successful strategy and although I did not fully buy her claims to have entered her subjects’ peculiar sensory universes, by the end of her journey she had certainly persuaded me to see the world differently.

Take Reuben. Born with red-green colour blindness, Reuben nonetheless claims to be able to “see” vivid auras enveloping people and objects (someone to whom he is sexually attracted flashes red; those he dislikes are yellow, a colour he associates with sourness). The technical term for Reuben’s condition is synaesthesia (crossed senses) and, in case you think he’s faking, his colour blindness and ability to consistently identify coloured auras has been confirmed by rigorous scientific tests. But knowing that does not capture the mysterious nature of Reuben’s colour spectrum or indeed anyone else’s. In short, though we can both objectively agree that such and such an object is red, I cannot be certain that my subjective experience of redness is the same as yours.


It’s as if when he zapped himself in the bath he also zapped his sense of self

But we can both agree that we are alive, otherwise how would we be conversing and exchanging notes about redness? Or can we? Graham can happily talk about redness, but insists he is dead. Specifically, Graham is convinced he is brain dead and finds living so pointless he sometimes forgets to eat – after all, if you’re dead what’s the point? Graham can trace his conviction to the day he tried to commit suicide by getting into a bath with a hairdryer after his wife left him. Afterwards, PET scans of his brain showed almost no metabolic activity in the regions governing his ability to rationalise and reflect on his own existence. The result is that even though Graham has been told he is suffering from a rare syndrome known as Cotard’s, no one can convince him he is alive. It’s as if when he zapped himself in the bath he also zapped his sense of self.

Of course, as with Donal and his dwarves, Graham’s abnormally low brain activity may be the physical manifestation of an underlying psychopathology. But that doesn’t detract from the realness of his symptoms to him. Maybe one day doctors will find a way to turn Graham’s brain back on but, until then, Thomson argues that his sense of being a member of the “waking dead” deserves to be taken seriously, offering yet another clue to the mysterious wizard behind the curtain.

That is a verdict with which O’Sullivan would concur. For all the advances in neurology – from MRI scans and EEG to the mapping of neurons for particular conditions, to new genetic techniques – she points out that cures for conditions such as epilepsy, Parkinson’s, autism and schizophrenia remain tantalisingly out of reach. That is why when it comes to probing the mysteries of our most complex organ there is no substitute for patients’ subjective accounts of their misbehaving brains. Even the names patients use to encapsulate their experience may contain vital clues. “When I record a patient’s seizures in their notes I always include these names,” she writes. “They are more vivid than any medical terminology.”

Brainstorm by Suzanne O’Sullivan is published by Chatto & Windus (£16.99). Unthinkable by Helen Thomson is published by John Murray (£20). To order a copy of Brainstorm for £14.44 or Unthinkable for £17 go to guardianbookshop.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99

Brainstorm: Detective Stories from the World of Neurology; Unthinkable: The World’s Strangest Brains – review

When I was a boy I had a recurring dream that Lilliputian figures were scurrying under my bed. I can’t recall if they bound my hands and feet like Gulliver, but I certainly found their activities fascinating and made no effort to resist, even when, on occasion, they succeeded in moving my bed slightly to the left or right.

Every now and then, however, they would push the bed a little too close to the window. That I did not like, because it put me in range of the clown waiting on the balcony (I have always been terrified by clowns). Now, frozen by fear, I really was immobilised and it was only by screaming that I could snap myself awake and escape their night-time peregrinations.

I was reminded of my lucid dream by the story of Donal, one of the patients featured in Brainstorm, Suzanne O’Sullivan’s new book of “detective stories from the world of neurology”. For 30 years Donal led a perfectly ordinary and seemingly contented life as a school janitor. Then one day he was summoned to the headmistress’s office and informed the school was making cuts and his job might be in jeopardy. That’s when he first saw the dwarves – “seven small brightly coloured men”, as Donal put it – scamper across the room and disappear behind the headmistress’s filing cabinet. As you can imagine, at first Donal told no one, but when one night the dwarves appeared beneath his bed and he gripped his wife’s arm in fright, he was forced to come clean and seek medical help.

Those of us who have “normal” brains take our waking lives for granted. Levitating beds and cartoon characters are all very well for the dream world, but when we awake we expect to find the bus stop to be in the same place that we left it yesterday and the street to be the same reassuring shade of grey. But unusual spikes in electrical activity can happen to anyone at any time, sparking transient phenomena such as goosebumps or deja vu, which feel all too real at the time. Moreover, whether as a result of genetic abnormalities, hormonal imbalances, or microscopic lesions, some brains are wired or fire differently. Neurons responsible for one function get crossed with another and suddenly pains take on distinctive tastes, we begin to see vivid auras or are able to access long-lost memories or, conversely, can remember nothing at all and are condemned to the purgatory of the perpetual present.

As one would expect from a neurologist in the Oliver Sacks tradition, O’Sullivan is a sure guide to these maverick brains and strange auras – a word, she reminds us, that is Greek for “breeze” and was originally used in the context of epilepsy. And like the late Dr Sacks, she is careful not to pass judgment on her patients, studiously parsing their accounts of hallucinations and seizures for clues to the underlying neurological dysfunction. Thus, rather than dismiss Donal as a fantasist or someone with psychiatric problems when an MRI scan of his brain proves normal, O’Sullivan hooks him up to an EEG (electroencephalogram) and has him sleep for several days in her epilepsy clinic to monitor and film his seizures. In this way, she finally captures the sudden telltale increase in electrical impulses that attends the dwarves’ appearance and recognises it as a seizure affecting Donal’s occipital lobe, the brain region that controls visual phenomena. Why dwarves, and precisely what triggers these seizures she cannot say, but by giving Donal medication to control his hallucinations she restores his mental equilibrium.

The individuals canvassed in science writer Helen Thomson’s book Unthinkable are not so fortunate. The manifestations of their strange brains cannot be so easily treated, nor, in many cases, would they wish them to be. Take Bob. He can recall a day from 40 years ago as easily as yesterday. Not just who he was with and what the weather was like, but his exact thoughts and sensations. Sometimes, as when the experience was unpleasant, these memories can be a source of pain. But replaying such memories also enables Bob to learn from his mistakes and, in the case of a lost loved one, his extraordinary memory allows him to travel back in time. Indeed, Bob makes a point of memorising relationships that are valuable to him, the better to be able to relive them later.

According to Thomson, we can learn a lot from people like Bob. She too takes inspiration from Sacks, but not being a neurologist, she cannot bring us diverting tales from the bedside. Instead, Thomson makes a virtue of her limitations by travelling the world in search of “strange brains” in an effort to understand them as a “friend might”. It is, for the most part, a successful strategy and although I did not fully buy her claims to have entered her subjects’ peculiar sensory universes, by the end of her journey she had certainly persuaded me to see the world differently.

Take Reuben. Born with red-green colour blindness, Reuben nonetheless claims to be able to “see” vivid auras enveloping people and objects (someone to whom he is sexually attracted flashes red; those he dislikes are yellow, a colour he associates with sourness). The technical term for Reuben’s condition is synaesthesia (crossed senses) and, in case you think he’s faking, his colour blindness and ability to consistently identify coloured auras has been confirmed by rigorous scientific tests. But knowing that does not capture the mysterious nature of Reuben’s colour spectrum or indeed anyone else’s. In short, though we can both objectively agree that such and such an object is red, I cannot be certain that my subjective experience of redness is the same as yours.


It’s as if when he zapped himself in the bath he also zapped his sense of self

But we can both agree that we are alive, otherwise how would we be conversing and exchanging notes about redness? Or can we? Graham can happily talk about redness, but insists he is dead. Specifically, Graham is convinced he is brain dead and finds living so pointless he sometimes forgets to eat – after all, if you’re dead what’s the point? Graham can trace his conviction to the day he tried to commit suicide by getting into a bath with a hairdryer after his wife left him. Afterwards, PET scans of his brain showed almost no metabolic activity in the regions governing his ability to rationalise and reflect on his own existence. The result is that even though Graham has been told he is suffering from a rare syndrome known as Cotard’s, no one can convince him he is alive. It’s as if when he zapped himself in the bath he also zapped his sense of self.

Of course, as with Donal and his dwarves, Graham’s abnormally low brain activity may be the physical manifestation of an underlying psychopathology. But that doesn’t detract from the realness of his symptoms to him. Maybe one day doctors will find a way to turn Graham’s brain back on but, until then, Thomson argues that his sense of being a member of the “waking dead” deserves to be taken seriously, offering yet another clue to the mysterious wizard behind the curtain.

That is a verdict with which O’Sullivan would concur. For all the advances in neurology – from MRI scans and EEG to the mapping of neurons for particular conditions, to new genetic techniques – she points out that cures for conditions such as epilepsy, Parkinson’s, autism and schizophrenia remain tantalisingly out of reach. That is why when it comes to probing the mysteries of our most complex organ there is no substitute for patients’ subjective accounts of their misbehaving brains. Even the names patients use to encapsulate their experience may contain vital clues. “When I record a patient’s seizures in their notes I always include these names,” she writes. “They are more vivid than any medical terminology.”

Brainstorm by Suzanne O’Sullivan is published by Chatto & Windus (£16.99). Unthinkable by Helen Thomson is published by John Murray (£20). To order a copy of Brainstorm for £14.44 or Unthinkable for £17 go to guardianbookshop.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99

Brainstorm: Detective Stories from the World of Neurology; Unthinkable: The World’s Strangest Brains – review

When I was a boy I had a recurring dream that Lilliputian figures were scurrying under my bed. I can’t recall if they bound my hands and feet like Gulliver, but I certainly found their activities fascinating and made no effort to resist, even when, on occasion, they succeeded in moving my bed slightly to the left or right.

Every now and then, however, they would push the bed a little too close to the window. That I did not like, because it put me in range of the clown waiting on the balcony (I have always been terrified by clowns). Now, frozen by fear, I really was immobilised and it was only by screaming that I could snap myself awake and escape their night-time peregrinations.

I was reminded of my lucid dream by the story of Donal, one of the patients featured in Brainstorm, Suzanne O’Sullivan’s new book of “detective stories from the world of neurology”. For 30 years Donal led a perfectly ordinary and seemingly contented life as a school janitor. Then one day he was summoned to the headmistress’s office and informed the school was making cuts and his job might be in jeopardy. That’s when he first saw the dwarves – “seven small brightly coloured men”, as Donal put it – scamper across the room and disappear behind the headmistress’s filing cabinet. As you can imagine, at first Donal told no one, but when one night the dwarves appeared beneath his bed and he gripped his wife’s arm in fright, he was forced to come clean and seek medical help.

Those of us who have “normal” brains take our waking lives for granted. Levitating beds and cartoon characters are all very well for the dream world, but when we awake we expect to find the bus stop to be in the same place that we left it yesterday and the street to be the same reassuring shade of grey. But unusual spikes in electrical activity can happen to anyone at any time, sparking transient phenomena such as goosebumps or deja vu, which feel all too real at the time. Moreover, whether as a result of genetic abnormalities, hormonal imbalances, or microscopic lesions, some brains are wired or fire differently. Neurons responsible for one function get crossed with another and suddenly pains take on distinctive tastes, we begin to see vivid auras or are able to access long-lost memories or, conversely, can remember nothing at all and are condemned to the purgatory of the perpetual present.

As one would expect from a neurologist in the Oliver Sacks tradition, O’Sullivan is a sure guide to these maverick brains and strange auras – a word, she reminds us, that is Greek for “breeze” and was originally used in the context of epilepsy. And like the late Dr Sacks, she is careful not to pass judgment on her patients, studiously parsing their accounts of hallucinations and seizures for clues to the underlying neurological dysfunction. Thus, rather than dismiss Donal as a fantasist or someone with psychiatric problems when an MRI scan of his brain proves normal, O’Sullivan hooks him up to an EEG (electroencephalogram) and has him sleep for several days in her epilepsy clinic to monitor and film his seizures. In this way, she finally captures the sudden telltale increase in electrical impulses that attends the dwarves’ appearance and recognises it as a seizure affecting Donal’s occipital lobe, the brain region that controls visual phenomena. Why dwarves, and precisely what triggers these seizures she cannot say, but by giving Donal medication to control his hallucinations she restores his mental equilibrium.

The individuals canvassed in science writer Helen Thomson’s book Unthinkable are not so fortunate. The manifestations of their strange brains cannot be so easily treated, nor, in many cases, would they wish them to be. Take Bob. He can recall a day from 40 years ago as easily as yesterday. Not just who he was with and what the weather was like, but his exact thoughts and sensations. Sometimes, as when the experience was unpleasant, these memories can be a source of pain. But replaying such memories also enables Bob to learn from his mistakes and, in the case of a lost loved one, his extraordinary memory allows him to travel back in time. Indeed, Bob makes a point of memorising relationships that are valuable to him, the better to be able to relive them later.

According to Thomson, we can learn a lot from people like Bob. She too takes inspiration from Sacks, but not being a neurologist, she cannot bring us diverting tales from the bedside. Instead, Thomson makes a virtue of her limitations by travelling the world in search of “strange brains” in an effort to understand them as a “friend might”. It is, for the most part, a successful strategy and although I did not fully buy her claims to have entered her subjects’ peculiar sensory universes, by the end of her journey she had certainly persuaded me to see the world differently.

Take Reuben. Born with red-green colour blindness, Reuben nonetheless claims to be able to “see” vivid auras enveloping people and objects (someone to whom he is sexually attracted flashes red; those he dislikes are yellow, a colour he associates with sourness). The technical term for Reuben’s condition is synaesthesia (crossed senses) and, in case you think he’s faking, his colour blindness and ability to consistently identify coloured auras has been confirmed by rigorous scientific tests. But knowing that does not capture the mysterious nature of Reuben’s colour spectrum or indeed anyone else’s. In short, though we can both objectively agree that such and such an object is red, I cannot be certain that my subjective experience of redness is the same as yours.


It’s as if when he zapped himself in the bath he also zapped his sense of self

But we can both agree that we are alive, otherwise how would we be conversing and exchanging notes about redness? Or can we? Graham can happily talk about redness, but insists he is dead. Specifically, Graham is convinced he is brain dead and finds living so pointless he sometimes forgets to eat – after all, if you’re dead what’s the point? Graham can trace his conviction to the day he tried to commit suicide by getting into a bath with a hairdryer after his wife left him. Afterwards, PET scans of his brain showed almost no metabolic activity in the regions governing his ability to rationalise and reflect on his own existence. The result is that even though Graham has been told he is suffering from a rare syndrome known as Cotard’s, no one can convince him he is alive. It’s as if when he zapped himself in the bath he also zapped his sense of self.

Of course, as with Donal and his dwarves, Graham’s abnormally low brain activity may be the physical manifestation of an underlying psychopathology. But that doesn’t detract from the realness of his symptoms to him. Maybe one day doctors will find a way to turn Graham’s brain back on but, until then, Thomson argues that his sense of being a member of the “waking dead” deserves to be taken seriously, offering yet another clue to the mysterious wizard behind the curtain.

That is a verdict with which O’Sullivan would concur. For all the advances in neurology – from MRI scans and EEG to the mapping of neurons for particular conditions, to new genetic techniques – she points out that cures for conditions such as epilepsy, Parkinson’s, autism and schizophrenia remain tantalisingly out of reach. That is why when it comes to probing the mysteries of our most complex organ there is no substitute for patients’ subjective accounts of their misbehaving brains. Even the names patients use to encapsulate their experience may contain vital clues. “When I record a patient’s seizures in their notes I always include these names,” she writes. “They are more vivid than any medical terminology.”

Brainstorm by Suzanne O’Sullivan is published by Chatto & Windus (£16.99). Unthinkable by Helen Thomson is published by John Murray (£20). To order a copy of Brainstorm for £14.44 or Unthinkable for £17 go to guardianbookshop.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99

Brainstorm: Detective Stories from the World of Neurology; Unthinkable: The World’s Strangest Brains – review

When I was a boy I had a recurring dream that Lilliputian figures were scurrying under my bed. I can’t recall if they bound my hands and feet like Gulliver, but I certainly found their activities fascinating and made no effort to resist, even when, on occasion, they succeeded in moving my bed slightly to the left or right.

Every now and then, however, they would push the bed a little too close to the window. That I did not like, because it put me in range of the clown waiting on the balcony (I have always been terrified by clowns). Now, frozen by fear, I really was immobilised and it was only by screaming that I could snap myself awake and escape their night-time peregrinations.

I was reminded of my lucid dream by the story of Donal, one of the patients featured in Brainstorm, Suzanne O’Sullivan’s new book of “detective stories from the world of neurology”. For 30 years Donal led a perfectly ordinary and seemingly contented life as a school janitor. Then one day he was summoned to the headmistress’s office and informed the school was making cuts and his job might be in jeopardy. That’s when he first saw the dwarves – “seven small brightly coloured men”, as Donal put it – scamper across the room and disappear behind the headmistress’s filing cabinet. As you can imagine, at first Donal told no one, but when one night the dwarves appeared beneath his bed and he gripped his wife’s arm in fright, he was forced to come clean and seek medical help.

Those of us who have “normal” brains take our waking lives for granted. Levitating beds and cartoon characters are all very well for the dream world, but when we awake we expect to find the bus stop to be in the same place that we left it yesterday and the street to be the same reassuring shade of grey. But unusual spikes in electrical activity can happen to anyone at any time, sparking transient phenomena such as goosebumps or deja vu, which feel all too real at the time. Moreover, whether as a result of genetic abnormalities, hormonal imbalances, or microscopic lesions, some brains are wired or fire differently. Neurons responsible for one function get crossed with another and suddenly pains take on distinctive tastes, we begin to see vivid auras or are able to access long-lost memories or, conversely, can remember nothing at all and are condemned to the purgatory of the perpetual present.

As one would expect from a neurologist in the Oliver Sacks tradition, O’Sullivan is a sure guide to these maverick brains and strange auras – a word, she reminds us, that is Greek for “breeze” and was originally used in the context of epilepsy. And like the late Dr Sacks, she is careful not to pass judgment on her patients, studiously parsing their accounts of hallucinations and seizures for clues to the underlying neurological dysfunction. Thus, rather than dismiss Donal as a fantasist or someone with psychiatric problems when an MRI scan of his brain proves normal, O’Sullivan hooks him up to an EEG (electroencephalogram) and has him sleep for several days in her epilepsy clinic to monitor and film his seizures. In this way, she finally captures the sudden telltale increase in electrical impulses that attends the dwarves’ appearance and recognises it as a seizure affecting Donal’s occipital lobe, the brain region that controls visual phenomena. Why dwarves, and precisely what triggers these seizures she cannot say, but by giving Donal medication to control his hallucinations she restores his mental equilibrium.

The individuals canvassed in science writer Helen Thomson’s book Unthinkable are not so fortunate. The manifestations of their strange brains cannot be so easily treated, nor, in many cases, would they wish them to be. Take Bob. He can recall a day from 40 years ago as easily as yesterday. Not just who he was with and what the weather was like, but his exact thoughts and sensations. Sometimes, as when the experience was unpleasant, these memories can be a source of pain. But replaying such memories also enables Bob to learn from his mistakes and, in the case of a lost loved one, his extraordinary memory allows him to travel back in time. Indeed, Bob makes a point of memorising relationships that are valuable to him, the better to be able to relive them later.

According to Thomson, we can learn a lot from people like Bob. She too takes inspiration from Sacks, but not being a neurologist, she cannot bring us diverting tales from the bedside. Instead, Thomson makes a virtue of her limitations by travelling the world in search of “strange brains” in an effort to understand them as a “friend might”. It is, for the most part, a successful strategy and although I did not fully buy her claims to have entered her subjects’ peculiar sensory universes, by the end of her journey she had certainly persuaded me to see the world differently.

Take Reuben. Born with red-green colour blindness, Reuben nonetheless claims to be able to “see” vivid auras enveloping people and objects (someone to whom he is sexually attracted flashes red; those he dislikes are yellow, a colour he associates with sourness). The technical term for Reuben’s condition is synaesthesia (crossed senses) and, in case you think he’s faking, his colour blindness and ability to consistently identify coloured auras has been confirmed by rigorous scientific tests. But knowing that does not capture the mysterious nature of Reuben’s colour spectrum or indeed anyone else’s. In short, though we can both objectively agree that such and such an object is red, I cannot be certain that my subjective experience of redness is the same as yours.


It’s as if when he zapped himself in the bath he also zapped his sense of self

But we can both agree that we are alive, otherwise how would we be conversing and exchanging notes about redness? Or can we? Graham can happily talk about redness, but insists he is dead. Specifically, Graham is convinced he is brain dead and finds living so pointless he sometimes forgets to eat – after all, if you’re dead what’s the point? Graham can trace his conviction to the day he tried to commit suicide by getting into a bath with a hairdryer after his wife left him. Afterwards, PET scans of his brain showed almost no metabolic activity in the regions governing his ability to rationalise and reflect on his own existence. The result is that even though Graham has been told he is suffering from a rare syndrome known as Cotard’s, no one can convince him he is alive. It’s as if when he zapped himself in the bath he also zapped his sense of self.

Of course, as with Donal and his dwarves, Graham’s abnormally low brain activity may be the physical manifestation of an underlying psychopathology. But that doesn’t detract from the realness of his symptoms to him. Maybe one day doctors will find a way to turn Graham’s brain back on but, until then, Thomson argues that his sense of being a member of the “waking dead” deserves to be taken seriously, offering yet another clue to the mysterious wizard behind the curtain.

That is a verdict with which O’Sullivan would concur. For all the advances in neurology – from MRI scans and EEG to the mapping of neurons for particular conditions, to new genetic techniques – she points out that cures for conditions such as epilepsy, Parkinson’s, autism and schizophrenia remain tantalisingly out of reach. That is why when it comes to probing the mysteries of our most complex organ there is no substitute for patients’ subjective accounts of their misbehaving brains. Even the names patients use to encapsulate their experience may contain vital clues. “When I record a patient’s seizures in their notes I always include these names,” she writes. “They are more vivid than any medical terminology.”

Brainstorm by Suzanne O’Sullivan is published by Chatto & Windus (£16.99). Unthinkable by Helen Thomson is published by John Murray (£20). To order a copy of Brainstorm for £14.44 or Unthinkable for £17 go to guardianbookshop.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99

‘She changed my world’: how a teacher saved me after my mum died

My world was rocked at the age of 12 – but my extraordinary English teacher helped me through it. Now we’re reconnecting

Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey.


Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey, which aims to tackle the stigmas surrounding mental health. Photograph: Ella Young

I was 12 years old, and my mum had just died from cancer. It was horrific to watch that happen to someone. My dad had an alcohol problem that mum had been managing all these years – suddenly he had a good reason to drink, and no one to stop him any more. He hit the bottle hard.

I went from being quite a high achieving student to being in the bottom quarter for English. But among all this, there was my English teacher, Miss Ward, who was so supportive. She wasn’t trained in mental health: she just saw someone who was distressed and unhappy, but who also had potential. She changed my world.

She listened to me and engaged with me. She had me talking in front of the English class, and was always chasing me to write something for the school magazine. She’d always find the good in the stuff I wrote.

I started the #FindMissWard campaign after going to a class reunion. Nobody knew what had happened to her. I’d just written a book about my journey on foot around the edge of the UK to highlight the stigmas surrounding mental health – and I thought it would be fantastic if she came to the launch. I think about 1.3 million people saw the tweet asking for help finding her, and tens of thousands of people retweeted and engaged with it.

Chris Young (@walkamileuk)

#FindMissWard

Dear, lovely people of Twitter – Miss Ward HAS BEEN FOUND!!

Thanks to social media – a load of emails and an old school style letter we’ve exchanged some emails and we’ll be meeting up soon

She wishes to remain anonymous & I’ll respect that

Thank you Twitter!!

February 1, 2018

The lovely thing was that so many people came out and said they had a “Miss Ward” too. One person on Twitter sent a message about their own Miss Ward and about five tweets later this woman said, “Here I am!”. They were reunited almost instantly – it was astonishing. I’m certain there’ll be lots of people who have never got round to looking for the teacher who made a lasting impact on their lives, but maybe wish they had.

When I think back, it took a long while for the personal difficulties after my mum died to really hit home. I fell to bits for a long time. I left school with almost no qualifications, but I had my O-level English and a few others. I ended up training to become a social worker because not many people had been there for me – and I wanted to be there for other people.

Later, in 2007, when I was diagnosed with borderline personality disorder, I became homeless after leaving my job. The experiences I had during that time made me feel it was important to challenge the stigmas surrounding mental health. By walking around the edge of the UK, I wanted to highlight how people with mental health problems feel on the edge of society. I was really pleased when I finally produced the book.

I’m not sure I would have had belief in my writing without Miss Ward. I think a lot of my other teachers at school were just a bit busy and didn’t see what was going on. It’s challenging to look after more than 30 pupils at a time, but somehow I came away from her classes feeling special.

We’re going to be meeting up in a couple of weeks. I just want to touch base and say thank you. I feel very lucky to have had her in my life.

Chris Young is founder of the Walk a Mile in My Shoes campaign, challenging stigma around mental health, and author of Walk a Mile: Tales of a Wandering Loon.

Follow us on Twitter via @GuardianTeach, like us on Facebook, and join the Guardian Teacher Network the latest articles direct to your inbox

Looking for a teaching job? Or perhaps you need to recruit school staff? Take a look at Guardian Jobs, the education specialist.

‘She changed my world’: how a teacher saved me after my mum died

My world was rocked at the age of 12 – but my extraordinary English teacher helped me through it. Now we’re reconnecting

Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey.


Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey, which aims to tackle the stigmas surrounding mental health. Photograph: Ella Young

I was 12 years old, and my mum had just died from cancer. It was horrific to watch that happen to someone. My dad had an alcohol problem that mum had been managing all these years – suddenly he had a good reason to drink, and no one to stop him any more. He hit the bottle hard.

I went from being quite a high achieving student to being in the bottom quarter for English. But among all this, there was my English teacher, Miss Ward, who was so supportive. She wasn’t trained in mental health: she just saw someone who was distressed and unhappy, but who also had potential. She changed my world.

She listened to me and engaged with me. She had me talking in front of the English class, and was always chasing me to write something for the school magazine. She’d always find the good in the stuff I wrote.

I started the #FindMissWard campaign after going to a class reunion. Nobody knew what had happened to her. I’d just written a book about my journey on foot around the edge of the UK to highlight the stigmas surrounding mental health – and I thought it would be fantastic if she came to the launch. I think about 1.3 million people saw the tweet asking for help finding her, and tens of thousands of people retweeted and engaged with it.

Chris Young (@walkamileuk)

#FindMissWard

Dear, lovely people of Twitter – Miss Ward HAS BEEN FOUND!!

Thanks to social media – a load of emails and an old school style letter we’ve exchanged some emails and we’ll be meeting up soon

She wishes to remain anonymous & I’ll respect that

Thank you Twitter!!

February 1, 2018

The lovely thing was that so many people came out and said they had a “Miss Ward” too. One person on Twitter sent a message about their own Miss Ward and about five tweets later this woman said, “Here I am!”. They were reunited almost instantly – it was astonishing. I’m certain there’ll be lots of people who have never got round to looking for the teacher who made a lasting impact on their lives, but maybe wish they had.

When I think back, it took a long while for the personal difficulties after my mum died to really hit home. I fell to bits for a long time. I left school with almost no qualifications, but I had my O-level English and a few others. I ended up training to become a social worker because not many people had been there for me – and I wanted to be there for other people.

Later, in 2007, when I was diagnosed with borderline personality disorder, I became homeless after leaving my job. The experiences I had during that time made me feel it was important to challenge the stigmas surrounding mental health. By walking around the edge of the UK, I wanted to highlight how people with mental health problems feel on the edge of society. I was really pleased when I finally produced the book.

I’m not sure I would have had belief in my writing without Miss Ward. I think a lot of my other teachers at school were just a bit busy and didn’t see what was going on. It’s challenging to look after more than 30 pupils at a time, but somehow I came away from her classes feeling special.

We’re going to be meeting up in a couple of weeks. I just want to touch base and say thank you. I feel very lucky to have had her in my life.

Chris Young is founder of the Walk a Mile in My Shoes campaign, challenging stigma around mental health, and author of Walk a Mile: Tales of a Wandering Loon.

Follow us on Twitter via @GuardianTeach, like us on Facebook, and join the Guardian Teacher Network the latest articles direct to your inbox

Looking for a teaching job? Or perhaps you need to recruit school staff? Take a look at Guardian Jobs, the education specialist.

‘She changed my world’: how a teacher saved me after my mum died

My world was rocked at the age of 12 – but my extraordinary English teacher helped me through it. Now we’re reconnecting

Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey.


Chris Young in Largs, Scotland, as part of his Walk a Mile in My Shoes journey, which aims to tackle the stigmas surrounding mental health. Photograph: Ella Young

I was 12 years old, and my mum had just died from cancer. It was horrific to watch that happen to someone. My dad had an alcohol problem that mum had been managing all these years – suddenly he had a good reason to drink, and no one to stop him any more. He hit the bottle hard.

I went from being quite a high achieving student to being in the bottom quarter for English. But among all this, there was my English teacher, Miss Ward, who was so supportive. She wasn’t trained in mental health: she just saw someone who was distressed and unhappy, but who also had potential. She changed my world.

She listened to me and engaged with me. She had me talking in front of the English class, and was always chasing me to write something for the school magazine. She’d always find the good in the stuff I wrote.

I started the #FindMissWard campaign after going to a class reunion. Nobody knew what had happened to her. I’d just written a book about my journey on foot around the edge of the UK to highlight the stigmas surrounding mental health – and I thought it would be fantastic if she came to the launch. I think about 1.3 million people saw the tweet asking for help finding her, and tens of thousands of people retweeted and engaged with it.

Chris Young (@walkamileuk)

#FindMissWard

Dear, lovely people of Twitter – Miss Ward HAS BEEN FOUND!!

Thanks to social media – a load of emails and an old school style letter we’ve exchanged some emails and we’ll be meeting up soon

She wishes to remain anonymous & I’ll respect that

Thank you Twitter!!

February 1, 2018

The lovely thing was that so many people came out and said they had a “Miss Ward” too. One person on Twitter sent a message about their own Miss Ward and about five tweets later this woman said, “Here I am!”. They were reunited almost instantly – it was astonishing. I’m certain there’ll be lots of people who have never got round to looking for the teacher who made a lasting impact on their lives, but maybe wish they had.

When I think back, it took a long while for the personal difficulties after my mum died to really hit home. I fell to bits for a long time. I left school with almost no qualifications, but I had my O-level English and a few others. I ended up training to become a social worker because not many people had been there for me – and I wanted to be there for other people.

Later, in 2007, when I was diagnosed with borderline personality disorder, I became homeless after leaving my job. The experiences I had during that time made me feel it was important to challenge the stigmas surrounding mental health. By walking around the edge of the UK, I wanted to highlight how people with mental health problems feel on the edge of society. I was really pleased when I finally produced the book.

I’m not sure I would have had belief in my writing without Miss Ward. I think a lot of my other teachers at school were just a bit busy and didn’t see what was going on. It’s challenging to look after more than 30 pupils at a time, but somehow I came away from her classes feeling special.

We’re going to be meeting up in a couple of weeks. I just want to touch base and say thank you. I feel very lucky to have had her in my life.

Chris Young is founder of the Walk a Mile in My Shoes campaign, challenging stigma around mental health, and author of Walk a Mile: Tales of a Wandering Loon.

Follow us on Twitter via @GuardianTeach, like us on Facebook, and join the Guardian Teacher Network the latest articles direct to your inbox

Looking for a teaching job? Or perhaps you need to recruit school staff? Take a look at Guardian Jobs, the education specialist.

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

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!”


Her mum pointed a finger at Sharon, aged five: ‘Don’t tell anyone about this. They’ll say you’re a witch and burn you’

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.


Spinning fixes the problem. ‘I go into a cubicle, close my eyes and spin around. It’s my Wonder Woman impression’

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.”

At 60, Sharon was Iaria’s case number four.

***

Sharon tells me that she was not permanently lost from the age of five. “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 she 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.” No one ever noticed that most of the time she was lost. “I would follow my friends when we walked to school, and if it happened during class, I’d spend the rest of the lesson trying to memorise the way the room looked so I’d know where everything was the next time it happened.”

One day, when Sharon was still a young girl, she discovered a solution. She was at a friend’s party, and next to play pin the tail on the donkey. “After I spun around, I knew something was horribly wrong. I felt like I was walking in completely the wrong direction.” When she took off the blindfold, she thought, “I know I’m at my friend’s house, but this doesn’t look like my friend’s house.”’


They said I needed to see a psychiatrist – they thought I was crazy. I wanted to die

But when it was her turn to be blindfolded and spun around for a second time, Sharon’s world flipped back to normal. “That’s when I learned that spinning could cause the disorientation. 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. When I open my eyes, my world is recognisable again.”

She chuckles and points towards the picture pinned to her fridge. “I call it my Wonder Woman impression.”

Why does she 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? I always did it in secret because I was humiliated by it.”

***

For most of us, navigating feels easy. But many of Iaria’s patients feel as if 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. But to remember all your journeys this way would place a huge strain on your memory. Instead, we use a dynamic tool, a cognitive map, a kind of internal representation of our surroundings that becomes familiar.

Our cognitive map is created by a number of different cells. There are those that fire only when we pass through a specific location. A nearby cell fires at a different location. Then there are cells that fire only when our head is facing a particular direction, and others that are responsible for where we are in relation to walls and boundaries. One might fire, say, when there’s a wall to the south or when we’re near the edge of a cliff.

We also fill our mental maps with permanent landmarks that are meaningful to us, like the post box at the end of our road, or the bus stop outside our office. There is a part of the brain dedicated to this task – the retrosplenial cortex. The current theory is that the combination of all these cells’ activity creates a map of our world, which is constantly updated to help us find our way around. But when one or more of these regions isn’t working correctly, things can get very confusing.

Sharon drives us to a nearby restaurant for lunch, insisting she knows the way. From her condo we drive around a couple of roundabouts, pass through a set of traffic lights and indicate left then right without a hitch. We turn on to a small highway that runs through the town, the Rocky Mountains dominating the landscape to the west. Sharon tells me that sometimes she’ll be driving into town when she suddenly realises that the mountains are to the north and she’ll know that her world has flipped. Then we fly past the entrance.

Later, when we get there, we sit down and Sharon explains what she sees when her world flips. She tells me to think about a busy street. “Imagine you’ve had a day shopping,” she says. “You come out of the last shop and head left towards the station. All of a sudden, you realise the station is actually on your right, because you were in a shop on the opposite side of the street to where you thought you were. In that split second, you feel momentarily disoriented because the station that you thought should be east is now west. Your world hasn’t flipped but your perception of it has.”

Most people’s brains are surprisingly forgiving. As soon as it gets confused, the brain spins everything around and reorients itself within milliseconds. But that split second in which your mental map doesn’t match with where things actually are is how Sharon feels when her world is flipped.


The doctor looked at me like I was telling a made-up story. She asked how I correct it and I told her I spin around

“I just can’t flip my world back around like you can,” says Sharon. “Unless I do my Wonder Woman impression.”

I ask why we missed the entrance to the restaurant. Sharon explains that it was on a curved road, and that they make her world flip. It has made finding work difficult. Every time she had an interview, she would have to work out in advance where the building was and whether it sat on a curved road. If there were a lot of winding passages in the building itself, she would have to turn down the job.

Was it not possible for her to recognise enough of her environment to work out which way to turn? “Think about standing in front of a bathroom cabinet with a mirrored door,” she says. “Open that door and look at the rest of the room through it and you’ll know it’s your bathroom, but everything’s kind of in the wrong place. Plus you’re stressed because everything looks different. It makes it hard.”

When Sharon has to get up in the night to go to the toilet, or if she’s in a rush in the morning and doesn’t have time to do her Wonder Woman impression, she says she feels like she is in a different condo. When she had young children, she would have to follow their cries to find their room in the night.

Sharon was almost 30 before her secret came out. Her brother had phoned her, asking to be taken to the hospital. He had Crohn’s disease and was feeling unwell. Sharon rushed out of the house in a panic, got into the car and set off on the short journey to his house. But on the way, her world flipped and she got completely lost. She pulled into a petrol station to call him. “I can’t find your house,” she said, and described the petrol station. Her brother was confused. He said, “You’re two blocks away from me – how do you not know where you are?” After the two of them had returned from the hospital, her brother asked her what was going on.

“It was so emotional for me, I could hardly say the words.” It was the first time Sharon had talked about her condition since she was five. Sharon’s brother told his doctor, and the doctor set up a meeting with a neurologist. He told her it sounded like a benign tumour or epilepsy. He organised a barrage of tests, but Sharon’s brain looked healthy.

“They said I needed to see a psychiatrist – they thought I was crazy.” She suffered a bout of severe depression. “I wanted to die. I’d just had my hopes raised, thinking that the doctors would find something that could be fixed.”

Sharon saw a psychologist for more than a year, and although he helped her work through her depression, he was unable to fix her disorientation. He told her to keep checking in with a neurologist every few years, to see if the research community had discovered anything new.

Sharon with her eyes closed


‘I’ve always been silly and funny because it misdirected people away from the things I was hiding,’ says Sharon. Photograph: Benjamin Rasmussen for the Guardian

When Sharon turned 40 she decided to see another doctor. But as soon as she sat down, she felt uncomfortable. “She looked at me like I was telling her a made-up story. She asked me how I correct it and I told her I spin around and it fixes it. She said, ‘Let me see you do it.’” Sharon had never spun in front of anyone before. She winces at the memory. “I swallowed my pride, stood up and closed my eyes. I spun around in circles until I knew the world had flipped.”

The doctor asked Sharon what she saw. “I said, ‘Well, I’m in a different room now. I know logically I’m not, but this doesn’t look like the same room.’”

Sharon spun around again and sat back down. The doctor put down her pen and pad and said: “Has anyone ever suggested the possibility that you have a multiple personality disorder?” Sharon was mortified. “I felt like I was being told I was crazy again. I just couldn’t go through that again. I left.”

It was another decade before Sharon made a further attempt to understand what was wrong with her brain. A friend had read some books by the neurologist Oliver Sacks and recommended that Sharon write to him. Sacks replied, apologising that he had not heard of such a condition. But he said the problem might be similar to another condition called prosopagnosia, in which people are unable to recognise familiar faces.

Sharon Googled “prosopagnosia” and found a website that tested how good you are at recognising faces. After the test, there was a questionnaire. 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, who wrote everything about her condition in the notes section. “Within a week, I received a call from Brad Duchaine, a researcher at University College London.” Duchaine had created the online test. “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.”

Two years later, in 2008, Duchaine emailed her, saying he had good news. There was an Italian researcher moving to Vancouver to start researching the condition she had described. That man was Giuseppe Iaria.

“The first time Giuseppe called, 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 each other. Over the next five years, he began to test this theory.


Sharon’s brain looks anatomically normal, but several of the areas involved in navigation don’t communicate properly

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 each other. His team concluded that the best navigators were those with higher levels of communication.

This concept is called network theory and it’s an idea that underlies many human behaviours – that the connections between different regions of the brain 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 scanned the brains of a group of people with Sharon’s disorder. They noted a difference in the activity of their right hippocampus, an area involved in memory, and parts of their frontal cortex, an area that allows us to draw all the information about navigation together. It’s also an area involved in reasoning and general intelligence.

As Iaria’s patients had no problem with their memory, or reasoning, he concluded that the condition must be a result of ineffective communication between the two regions. “It’s not enough for the individual parts of the brain to be able to speak,” he tells 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. Still, how could Sharon sometimes navigate perfectly well and then suddenly flip?

“Some people don’t actually lack the skill of forming a mental map,” Iaria explains, “but somewhere in the process of collecting all the pieces of the puzzle, errors accumulate, information gets lost, and suddenly the map shifts.”

To Iaria’s knowledge, Sharon’s spinning technique is unique. “I have to admit I have no idea why it works,” he says. “There’s nothing wrong with her vestibular system – she doesn’t get nauseous or have problems with her balance – but somehow shaking this system resets her mental map.” He sighs. “I can scan her brain, but I can’t enter her mind.”

A lobster ornament outside Sharon’s home


Louie the lobster, the ornament that tells Sharon she’s home. Photograph: Benjamin Rasmussen for the Guardian

Recently, Iaria has been testing his theory that developmental topographical disorientation has a genetic link. Of all the people he has identified with the condition – almost 200 of them – about 30% have at least one other family member affected. His team identified a handful of potential genes that might be causing the problem. While it’s unlikely that they will be able to replace the broken genes any time soon, it might be possible to intervene – using brain-training exercises that help children with these genes use other parts of their brain to navigate.

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. Did Sharon’s condition appear spontaneously, I wonder, or might it have been inherited?

“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. She never went anywhere by herself.”

Knowing there are people out there trying to understand her condition has helped. “I’ve always been silly and funny because it misdirected people away from the things I was hiding. Everyone said, ‘You’re always in such a good mood.’ They didn’t know that I would go home at night and cry. Before meeting Giuseppe, I was still a scared little girl. I don’t think I grew up and became a woman until the last 10 years, really. I’m happy now. I realised that in order to be fulfilled I needed to learn to like myself and accept who I am.”

As I leave, I catch another glimpse of her lobster lawn ornament. “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 and I see Louie, I know I’m home.”

  • Some names have been changed. Sharon asked that we did not use her surname.
    This is an edited extract from Unthinkable: An Extraordinary Journey Through the World’s Strangest Brains, by Helen Thomson, published on 22 February by John Murray at £20. To order a copy for £17, go to bookshop.theguardian.com or call 0330 333 6846.
    Commenting on this piece? If you would like your comment to be considered for inclusion on Weekend magazine’s letters page in print, please email weekend@theguardian.com

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

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!”


Her mum pointed a finger at Sharon, aged five: ‘Don’t tell anyone about this. They’ll say you’re a witch and burn you’

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.


Spinning fixes the problem. ‘I go into a cubicle, close my eyes and spin around. It’s my Wonder Woman impression’

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.”

At 60, Sharon was Iaria’s case number four.

***

Sharon tells me that she was not permanently lost from the age of five. “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 she 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.” No one ever noticed that most of the time she was lost. “I would follow my friends when we walked to school, and if it happened during class, I’d spend the rest of the lesson trying to memorise the way the room looked so I’d know where everything was the next time it happened.”

One day, when Sharon was still a young girl, she discovered a solution. She was at a friend’s party, and next to play pin the tail on the donkey. “After I spun around, I knew something was horribly wrong. I felt like I was walking in completely the wrong direction.” When she took off the blindfold, she thought, “I know I’m at my friend’s house, but this doesn’t look like my friend’s house.”’


They said I needed to see a psychiatrist – they thought I was crazy. I wanted to die

But when it was her turn to be blindfolded and spun around for a second time, Sharon’s world flipped back to normal. “That’s when I learned that spinning could cause the disorientation. 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. When I open my eyes, my world is recognisable again.”

She chuckles and points towards the picture pinned to her fridge. “I call it my Wonder Woman impression.”

Why does she 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? I always did it in secret because I was humiliated by it.”

***

For most of us, navigating feels easy. But many of Iaria’s patients feel as if 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. But to remember all your journeys this way would place a huge strain on your memory. Instead, we use a dynamic tool, a cognitive map, a kind of internal representation of our surroundings that becomes familiar.

Our cognitive map is created by a number of different cells. There are those that fire only when we pass through a specific location. A nearby cell fires at a different location. Then there are cells that fire only when our head is facing a particular direction, and others that are responsible for where we are in relation to walls and boundaries. One might fire, say, when there’s a wall to the south or when we’re near the edge of a cliff.

We also fill our mental maps with permanent landmarks that are meaningful to us, like the post box at the end of our road, or the bus stop outside our office. There is a part of the brain dedicated to this task – the retrosplenial cortex. The current theory is that the combination of all these cells’ activity creates a map of our world, which is constantly updated to help us find our way around. But when one or more of these regions isn’t working correctly, things can get very confusing.

Sharon drives us to a nearby restaurant for lunch, insisting she knows the way. From her condo we drive around a couple of roundabouts, pass through a set of traffic lights and indicate left then right without a hitch. We turn on to a small highway that runs through the town, the Rocky Mountains dominating the landscape to the west. Sharon tells me that sometimes she’ll be driving into town when she suddenly realises that the mountains are to the north and she’ll know that her world has flipped. Then we fly past the entrance.

Later, when we get there, we sit down and Sharon explains what she sees when her world flips. She tells me to think about a busy street. “Imagine you’ve had a day shopping,” she says. “You come out of the last shop and head left towards the station. All of a sudden, you realise the station is actually on your right, because you were in a shop on the opposite side of the street to where you thought you were. In that split second, you feel momentarily disoriented because the station that you thought should be east is now west. Your world hasn’t flipped but your perception of it has.”

Most people’s brains are surprisingly forgiving. As soon as it gets confused, the brain spins everything around and reorients itself within milliseconds. But that split second in which your mental map doesn’t match with where things actually are is how Sharon feels when her world is flipped.


The doctor looked at me like I was telling a made-up story. She asked how I correct it and I told her I spin around

“I just can’t flip my world back around like you can,” says Sharon. “Unless I do my Wonder Woman impression.”

I ask why we missed the entrance to the restaurant. Sharon explains that it was on a curved road, and that they make her world flip. It has made finding work difficult. Every time she had an interview, she would have to work out in advance where the building was and whether it sat on a curved road. If there were a lot of winding passages in the building itself, she would have to turn down the job.

Was it not possible for her to recognise enough of her environment to work out which way to turn? “Think about standing in front of a bathroom cabinet with a mirrored door,” she says. “Open that door and look at the rest of the room through it and you’ll know it’s your bathroom, but everything’s kind of in the wrong place. Plus you’re stressed because everything looks different. It makes it hard.”

When Sharon has to get up in the night to go to the toilet, or if she’s in a rush in the morning and doesn’t have time to do her Wonder Woman impression, she says she feels like she is in a different condo. When she had young children, she would have to follow their cries to find their room in the night.

Sharon was almost 30 before her secret came out. Her brother had phoned her, asking to be taken to the hospital. He had Crohn’s disease and was feeling unwell. Sharon rushed out of the house in a panic, got into the car and set off on the short journey to his house. But on the way, her world flipped and she got completely lost. She pulled into a petrol station to call him. “I can’t find your house,” she said, and described the petrol station. Her brother was confused. He said, “You’re two blocks away from me – how do you not know where you are?” After the two of them had returned from the hospital, her brother asked her what was going on.

“It was so emotional for me, I could hardly say the words.” It was the first time Sharon had talked about her condition since she was five. Sharon’s brother told his doctor, and the doctor set up a meeting with a neurologist. He told her it sounded like a benign tumour or epilepsy. He organised a barrage of tests, but Sharon’s brain looked healthy.

“They said I needed to see a psychiatrist – they thought I was crazy.” She suffered a bout of severe depression. “I wanted to die. I’d just had my hopes raised, thinking that the doctors would find something that could be fixed.”

Sharon saw a psychologist for more than a year, and although he helped her work through her depression, he was unable to fix her disorientation. He told her to keep checking in with a neurologist every few years, to see if the research community had discovered anything new.

Sharon with her eyes closed


‘I’ve always been silly and funny because it misdirected people away from the things I was hiding,’ says Sharon. Photograph: Benjamin Rasmussen for the Guardian

When Sharon turned 40 she decided to see another doctor. But as soon as she sat down, she felt uncomfortable. “She looked at me like I was telling her a made-up story. She asked me how I correct it and I told her I spin around and it fixes it. She said, ‘Let me see you do it.’” Sharon had never spun in front of anyone before. She winces at the memory. “I swallowed my pride, stood up and closed my eyes. I spun around in circles until I knew the world had flipped.”

The doctor asked Sharon what she saw. “I said, ‘Well, I’m in a different room now. I know logically I’m not, but this doesn’t look like the same room.’”

Sharon spun around again and sat back down. The doctor put down her pen and pad and said: “Has anyone ever suggested the possibility that you have a multiple personality disorder?” Sharon was mortified. “I felt like I was being told I was crazy again. I just couldn’t go through that again. I left.”

It was another decade before Sharon made a further attempt to understand what was wrong with her brain. A friend had read some books by the neurologist Oliver Sacks and recommended that Sharon write to him. Sacks replied, apologising that he had not heard of such a condition. But he said the problem might be similar to another condition called prosopagnosia, in which people are unable to recognise familiar faces.

Sharon Googled “prosopagnosia” and found a website that tested how good you are at recognising faces. After the test, there was a questionnaire. 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, who wrote everything about her condition in the notes section. “Within a week, I received a call from Brad Duchaine, a researcher at University College London.” Duchaine had created the online test. “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.”

Two years later, in 2008, Duchaine emailed her, saying he had good news. There was an Italian researcher moving to Vancouver to start researching the condition she had described. That man was Giuseppe Iaria.

“The first time Giuseppe called, 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 each other. Over the next five years, he began to test this theory.


Sharon’s brain looks anatomically normal, but several of the areas involved in navigation don’t communicate properly

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 each other. His team concluded that the best navigators were those with higher levels of communication.

This concept is called network theory and it’s an idea that underlies many human behaviours – that the connections between different regions of the brain 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 scanned the brains of a group of people with Sharon’s disorder. They noted a difference in the activity of their right hippocampus, an area involved in memory, and parts of their frontal cortex, an area that allows us to draw all the information about navigation together. It’s also an area involved in reasoning and general intelligence.

As Iaria’s patients had no problem with their memory, or reasoning, he concluded that the condition must be a result of ineffective communication between the two regions. “It’s not enough for the individual parts of the brain to be able to speak,” he tells 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. Still, how could Sharon sometimes navigate perfectly well and then suddenly flip?

“Some people don’t actually lack the skill of forming a mental map,” Iaria explains, “but somewhere in the process of collecting all the pieces of the puzzle, errors accumulate, information gets lost, and suddenly the map shifts.”

To Iaria’s knowledge, Sharon’s spinning technique is unique. “I have to admit I have no idea why it works,” he says. “There’s nothing wrong with her vestibular system – she doesn’t get nauseous or have problems with her balance – but somehow shaking this system resets her mental map.” He sighs. “I can scan her brain, but I can’t enter her mind.”

A lobster ornament outside Sharon’s home


Louie the lobster, the ornament that tells Sharon she’s home. Photograph: Benjamin Rasmussen for the Guardian

Recently, Iaria has been testing his theory that developmental topographical disorientation has a genetic link. Of all the people he has identified with the condition – almost 200 of them – about 30% have at least one other family member affected. His team identified a handful of potential genes that might be causing the problem. While it’s unlikely that they will be able to replace the broken genes any time soon, it might be possible to intervene – using brain-training exercises that help children with these genes use other parts of their brain to navigate.

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. Did Sharon’s condition appear spontaneously, I wonder, or might it have been inherited?

“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. She never went anywhere by herself.”

Knowing there are people out there trying to understand her condition has helped. “I’ve always been silly and funny because it misdirected people away from the things I was hiding. Everyone said, ‘You’re always in such a good mood.’ They didn’t know that I would go home at night and cry. Before meeting Giuseppe, I was still a scared little girl. I don’t think I grew up and became a woman until the last 10 years, really. I’m happy now. I realised that in order to be fulfilled I needed to learn to like myself and accept who I am.”

As I leave, I catch another glimpse of her lobster lawn ornament. “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 and I see Louie, I know I’m home.”

  • Some names have been changed. Sharon asked that we did not use her surname.
    This is an edited extract from Unthinkable: An Extraordinary Journey Through the World’s Strangest Brains, by Helen Thomson, published on 22 February by John Murray at £20. To order a copy for £17, go to bookshop.theguardian.com or call 0330 333 6846.
    Commenting on this piece? If you would like your comment to be considered for inclusion on Weekend magazine’s letters page in print, please email weekend@theguardian.com