The Sleeping Beauties: And Other Stories of Mystery Illness

by Suzanne O'Sullivan Narrated by Suzanne O'Sullivan

Overview

In Sweden, hundreds of refugee children fall into a state that resembles sleep for months or years at a time. In Le Roy, a town in upstate New York, teenage girls develop involuntary twitches and seizures that spread like a conta­gion. In the U.S. Embassy in Cuba, employees experience headaches and memory loss after hearing strange noises during the night. These are only a few of the many sus­pected culture-bound psychosomatic syndromes-specific sets of symptoms that exist in a particular culture or environment-that affect people throughout the world.
 
In The Sleeping Beauties, Dr. Suzanne O'Sullivan-an award-winning Irish neurologist-investigates psychosomatic disorders, traveling the world to visit communi­ties suffering from these so-called mystery illnesses. From a derelict post-Soviet mining town in Kazakhstan to the Mosquito Coast of Nicaragua to the heart of the María Mountains in Colombia, O'Sullivan records the remark­able stories of syndromes related to her by people from all walks of life. Riveting and often distressing, these case studies are recounted with compassion and humanity.
 
In examining the complexity of psychogenic illness, O'Sullivan has written a book of both fascination and se­rious concern as these syndromes continue to proliferate around the globe.

Editorial Reviews

From the Publisher

At once poignant, surprising and sometimes horrifying . . . Empathic . . . Dr. O’Sullivan uncovers these complex mechanisms while painting a picture of psychosomatic suffering that removes its associated stigma . . . Radical . . . The Sleeping Beauties offers a brilliant, nuanced and thoughtful look at the lived experience of illness while asking important questions about the relationship between body and mind. Dr. O’Sullivan’s rich prose weaves a tapestry as hauntingly beautiful as it is scientifically valid.”
—Wall Street Journal

"Fascinating and provocative . . . [O'Sullivan is ] a globe-trotting Lisa Sanders: a briskly professional but secretly tenderhearted disease detective on a mission to dispel misconceptions that have become obstacles to cures . . . O’Sullivan’s logic is, well, infectious."
—New York Times

“In my view the best science writer around—a true descendant of Oliver Sacks.”
—Sathnam Sanghera, author of The Boy with the Topknot

“A gripping international journey . . . O’Sullivan has written a medical page-turner that makes a compelling argument for a holistic approach to health care.”
—Library Journal

“Fascinating . . . O’Sullivan delivers a razor-sharp study of illnesses that often cannot be explained in traditional medical terms . . . As O’Sullivan masterfully narrates these cases, she movingly allows the subjects to tell their owns stories, too. Fans of Oliver Sacks, take note.”
—Publishers Weekly

“O’Sullivan keenly explains illness templates that are coded in our brains by our sociocultural environment . . . A fascinating view of mind that mingles culture with biology, creating a richly embroidered, albeit difficult, world.”
—Kirkus Reviews

“Suzanne O’Sullivan’s beautifully written book interweaves the stories of those afflicted in this way in a travelogue of illness that is ultimately a travelogue of our own irrational, suggestible minds . . . It is a measure of how effective she is at describing the dilemmas and difficulties of treating psychosomatic conditions that, by the end, a visit to a witch doctor begins to feel like the most sensible medical intervention.”
—The Times
 
“O’Sullivan travels the world collecting fascinating stories of culture-bound syndromes, which she relays with nuance and sensitivity.”
—New Statesman
 
“O’Sullivan doesn’t offer easy answers. She just shows us, with wonderful compassion and the minimum of judgment, the ways in which people across the world have manifested symptoms that have helped them through—or beyond—painful situations . . . It is, in every sense, mind-blowing.”
—The Sunday Telegraph
 
“To compare any book to an Oliver Sacks book is unfair, but this one lives up to it—not because it is alluringly freakish but because it is so compassionate and so driven by deep curiosity about the human psyche. I finished The Sleeping Beauties feeling thrillingly unsettled and wishing there was more.”
—James McConnachie, The Sunday Times

“Powerful . . . This is a startling and empathetic investigation into the power of the mind, the contagiousness of fear, and the consequences of hopelessness.”
—Booklist (starred)

Library Journal

09/01/2021

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

Kirkus Reviews

2021-06-25
A neurologist investigates psychogenic disorders, characterized by complex, holistic sets of symptoms that take root in a particular culture and time.

Psychosomatic suffering—“realphysical 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.

Product Details

BN ID:	2940173165299
Publisher:	Penguin Random House
Publication date:	09/21/2021
Edition description:	Unabridged

Read an Excerpt

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?

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