The sleeping beauties And other stories of mystery illness

Review by Booklist Review

Much of doctoring involves detective work. Clues gleaned from the story the patient tells, a physical examination, and results of medical testing are puzzled together to form a diagnosis. Neurologist O'Sullivan vigorously examines several outbreaks of enigmatic sickness occurring around the world and identifies them as mass psychogenic illnesses. She convincingly explains how psychological, cultural, and social factors give rise to symptoms and can produce disability. She provides a powerful perspective of functional neurological disorders. O'Sullivan warns readers not to underestimate these conditions nor devalue their legitimacy. The "Sleeping Beauties" of the title refers to hundreds of children (most from families seeking asylum) in Sweden who cannot be awakened and require feeding tubes. They appear to be unconscious, but their brain-wave tracings are fine. The condition is dubbed "resignation syndrome." Elsewhere, more than a hundred people in neighboring towns in Kazakhstan behave strangely and develop a kind of sleeping sickness. Schoolgirls in Colombia suddenly begin fainting. Miskito people in Nicaragua suffer from an illness manifested by visual hallucinations and convulsions. Diplomats in Cuba are afflicted with hearing problems, dizziness, and headaches (Havana syndrome). Teens in New York develop Tourette-like tics. This is a startling and empathetic investigation into the power of the mind, the contagiousness of fear, and the consequences of hopelessness.

From Booklist, Copyright (c) American Library Association. Used with permission.

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Review by Publisher's Weekly Review

Drawing on fascinating case studies, neurologist O'Sullivan (Its All in Your Head) delivers a razor-sharp study of illnesses that often cannot be explained in traditional medical terms. O'Sullivan highlights the deeply entwined biological, psychological, and social factors behind illnesses commonly called "mysteries." In a refugee community in Sweden in the early 2000s, for example, hundreds of young girls fell into a deep sleep for months or sometimes years; "the social elements should never be underestimated," O'Sullivan points out, having discovered that those affected were "unconsciously playing out a sick role that has entered the folklore of their small community." O'Sullivan also explores widespread seizures among young women in Colombia in the 2010s, the spread of a Tourette's-like syndrome among adolescents in New York in 2011, and large groups of people falling asleep for days in Kazakhstan in 2015. Along the way, O'Sullivan makes a convincing argument for changing how illnesses are discussed: "functional neurological disorders... have numerous triggers, only some of which are related to psychological distress. They can be a response to injury, disease, false medical beliefs, hardship, conflict, contagious anxiety." As O'Sullivan masterfully narrates the cases, she movingly allows the subjects to tell their own stories, too. Fans of Oliver Sacks, take note. (Sept.)

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Review by Library Journal Review

Neurologist O'Sullivan (It's All in Your Head) takes readers on a gripping international journey documenting outbreaks of psychosomatic illnesses (once called mass hysteria, now called functional neurological disorder or FND). In Sweden, young asylum seekers with resignation syndrome spend their days in a comatose state. In the mountains of Colombia, schoolgirls experience fainting spells and convulsions. "Every medical problem is a combination of the biological, the psychological and the social," O'Sullivan explains. She explores a number of case studies, aiming to uncover how external factors meet with brain function to create disabling symptoms. Psychosomatic illnesses often carry stigma, and patients are sometimes accused of faking their symptoms; as a result, FND sufferers and their families generally resist such the diagnosis. O'Sullivan argues that it is precisely because FND is more common in women and young girls that it is stigmatized or dismissed, although the symptoms are real and debilitating. Her book proposes that physicians should look beyond basic diagnoses, to the environmental factors and social context that may contribute to patients' illnesses. VERDICT O'Sullivan has written a medical page-turner that makes a compelling argument for a holistic approach to health care.--Ragan O'Malley, Saint Ann's Sch., Brooklyn

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Review by Kirkus Book Review

A neurologist investigates psychogenic disorders, characterized by complex, holistic sets of symptoms that take root in a particular culture and time. Psychosomatic suffering--"real physical symptoms that are disabling, but which are not due to disease and are understood to have a psychological or behavioural cause"--is no longer considered purely hysterical, framed in Freudian interpretation, or dismissed as simply mysterious. O'Sullivan, a London-based Irish neurologist, marches straight into this deep, strange pocket of experience. A pleasing storyteller, she puts to good use her neurological background while melding it with a closely observed appreciation of environmental, social, and cultural elements in the dissociative process. She introduces a variety of psychosomatic disturbances, beginning with resignation syndrome in Sweden, "a disorder that exclusively affects children of asylum-seeking families," rendering them in a sleeplike state that is indecipherable with today's instrumentation. Sadly, explanations "come with the inevitable need to apportion blame, passing judgement on the child and…family." The author also investigates the aggressive hallucinations experienced by members of the Miskitos peoples of Nicaragua, a foreboding sleeping sickness in Kazakhstan, and many more. All lead the author to the idea of "a cultural concept of distress," with the body intimately involved in cognition, responding to the environment, the specific circumstances of the moment "and the socially constructed ways of responding to illness." O'Sullivan keenly explains illness templates that are coded in our brains by our sociocultural environment, so that "when you look for symptoms, you find them." As the author connects dot after dot, she discusses the role of induced illnesses as a language of distress, in which the members of a specific community understand symptoms as metaphors of personal suffering or a way of exteriorizing a conflict. Doctors, she writes, "still struggle to appreciate the magnitude and reality of the interaction between mind, body, and the environment." A fascinating view of mind that mingles culture with biology, creating a richly embroidered, albeit difficult, world. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

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1. The Sleeping Beauties I had barely stepped foot over the threshold and I already felt claustrophobic. I wanted to turn back. People shuffled into the room in front of me, while somebody else stood directly behind me, a little too close. It felt hard to escape. I could see Nola lying in a bed to my right. She was about ten years old, I guessed. This was her bedroom. I had come knowing what to expect, but somehow I still wasn't prepared. Five people and one dog had just walked into the room, but she didn't have so much as a flicker of acknowledgement for any of us. She just lay perfectly still, her eyes closed, apparently peaceful. "She's been like this for over a year and a half," Dr. Olssen said, as she bent to stroke Nola gently on the cheek. I was in Horndal, Sweden-- a small municipality a hundred miles north of Stockholm. Dr. Olssen was my guide. She was a slim, deeply tanned woman in her sixties, with a distinctive triangular white patch in the fringe of her light brown hair. She had been caring for Nola since the child had first fallen ill, so she knew the family well. Dr. Olssen's husband, Sam, and their dog had also come with us. All three were regular visitors to Nola's home and knew their way around it. From the front door, they had led me promptly and directly to Nola's room. It was almost too abrupt for me. One moment I was outside in the midday sunshine, then suddenly I was in the twilight of a sleeping child's room. I had an impulse to open the curtains. Dr. Olssen must have felt the same, because she walked to the window, drew the curtains aside and let the light in. She turned to Nola's parents and said, "The girls have to know it's daytime. They need sun on their skin." "They know it's day," her mother answered defensively. "We sit them outside in the morning. They're in bed because you're visiting." This wasn't just Nola's room. Her sister, Helan, who was roughly a year older, lay quietly on the bottom of a set of bunk beds to my left. From where I stood, I could only see the soles of her feet. The upper bunk--their brother's bed--was empty. He was healthy; I had seen him peeping out from around a corner as I walked to the girls' room. Dr. Olssen turned and called to me: "Suzanne, where are you? Aren't you coming to say hello? Isn't this why you're here?" She was hunkered down by Nola's bed, brushing the child's black hair to one side with her fingers. I stood wavering near the threshold, struggling to take the final few steps of a long journey. I was pretty sure I was going to cry, and I didn't want the others to see. I wasn't ashamed; I am human and upsetting things upset me. Sick children in particular upset me. But this family had been through so much and I didn't want to put them in the position of having to comfort me. I fixed a smile on my face and approached Nola's bed. As I did, I glanced over my shoulder at Helan, and was surprised to see her eyes open for a second to look at me and then close again. "She's awake," I said to Dr. Olssen. "Yes, Helan's only in the early stages." Nola showed no sign of being awake, lying on top of her bed covers, laid out in preparation for me. She was wearing a pink dress and black and white harlequin tights. Her hair was thick and glossy, but her skin was pale. Her lips were an insipid pink, almost colourless. Her hands were folded across her stomach. She looked serene, like the princess who had eaten the poisoned apple. The only certain sign of illness was a nasogastric feeding tube threaded through her nose, secured to her cheek with tape. The only sign of life, the gentle up and down of her chest. I crouched beside her bed and introduced myself. I knew that, even if she could hear me, she probably couldn't under­stand. She knew very little English, and I didn't speak Swed­ish or her native language, Kurdish, but I hoped the tone of my voice would reassure her. As I spoke, I looked back at Helan again. Her eyes were fully open and she met my gaze, allowing me to see that she was watching me. I smiled at her, but her expression didn't change. The girls' mother stood at the end of Nola's bed, leaning a shoulder against the wall. She was a strik­ing woman, with high cheekbones and a prominent café-au-lait birthmark on her forehead. She had relinquished control to Dr. Olssen and was watching me closely. She seemed calm and dignified. Her husband, the children's father, stood at the door­way, shuffling in and out of the room. Like Sophie, whose story I had read in that newspaper arti­cle, Nola and Helan are two of the hundreds of sleeping chil­dren who have appeared sporadically in Sweden over a span of twenty years. The first official medical reports of the epidemic appeared in the early 2000s. Typically, the sleeping sickness had an insidious onset. Children initially became anxious and depressed. Their behaviour changed: they stopped playing with other children and, over time, stopped playing altogether. They slowly withdrew into themselves, and soon they couldn't go to school. They spoke less and less, until they didn't speak at all. Eventually, they took to bed. If they entered the deepest stage, they could no longer eat or open their eyes. They became com­pletely immobile, showing no response to encouragement from family or friends, and no longer acknowledging pain or hunger or discomfort. They ceased having any active participation in the world. The first children affected were admitted to hospital. They underwent extensive medical investigations, including CAT scans, blood tests, EEGs (electroencephalograms, or brainwave recordings) and lumbar punctures to look at spinal fluid. The results invariably came back as normal, with the brainwave recordings contradicting the children's apparent unconscious state. Even when the children appeared to be deeply unrespon­sive, their brainwaves showed the cycles of waking and sleep that one would expect in a healthy person. Some of the most severely affected children spent time under close observation in intensive-care units, yet still nobody could wake them. Because no disease was found, the help doctors and nurses could offer was limited. They fed the children through feeding tubes, while physiotherapists kept their joints mobile and their lungs clear and nurses made sure they didn't develop pressure sores through inactivity. Ultimately, being in hospital didn't make much difference, so many children were sent home to be cared for by their parents. The children's ages ranged from seven to nineteen. The lucky ones were sick for a few months, but many didn't wake for years. Some still haven't woken. When this started happening, it was unprecedented. Nobody knew what to call it. Was it a coma? That word wasn't quite right; it implied deep unconsciousness, but some of the children seemed to have awareness of their surroundings. Tests showed that their brains responded to external stimuli. Sleep certainly wasn't the right word either. Sleep is natural, but what was happening to the children was not-- it was impenetrable. In the end, Swedish doctors settled for "apathy." The Swiss psychiatrist Karl Jaspers described apathy as an absence of feeling with no incentive to act. It is a total indifference to pain and to pleasure, a complete freedom from emotion of any kind. That description fitted with what the doctors were seeing. After a few years, apathy was converted to an official medical designation-- Uppgivenhetssyndrom --literally mean­ing "to give up." In English, this became "resignation syndrome." Standing at Nola's bedside, the label seemed apt. Dr. Olssen rolled up Nola's dress, exposing her bare stomach and revealing that she was wearing a nappy under her tights. Nola didn't resist the intrusion. Her hand lolled over the side of the bed, the dog nudged it with his nose, but she didn't respond to that either. Dr. Olssen pressed on her stomach and listened to it with a stetho­scope, and then listened to her heart and lungs. The examination, Dr. Olssen's friendly chatter, the stranger in the room, the pacing of the dog--none of these elicited any sort of reaction. Periodically, Dr. Olssen turned to me to report on her findings. "Her heart rate is ninety-two. High." When she said that, I again felt uncomfortable to the point of upset. Ninety-two seemed high to me, too. Ninety-two did not sound like the heart rate that goes with an absence of emo­tion, in a child who had not moved for over a year. It suggested a state of emotional arousal-- in other words, the very oppo­site of apathy. The autonomic nervous system has unconscious control over the heart rate. The parasympathetic nerves slow everything down when a person is at rest, while the sympa­thetic system powers our fight-or-flight mechanism, speeding up the heart in preparation for action. What was Nola's body preparing for? Excerpted from The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O'Sullivan All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

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