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?
Copyright © 2021 by Suzanne O'Sullivan. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.