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- NAUTILUS16 HOURS AGO
Why These Children Fell into Endless Sleep - Issue 107: The Edge
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 10 years old, I guessed. This was her bedroom. 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 colorless. Her hands were folded across her stomach. She looked serene, like the princess who had eaten the poisoned apple.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 Nola didn’t have so much as a flicker of acknowledgement for any of us. She just lay perfectly still, her eyes closed, apparently peaceful. 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.“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.TRAUMATIZED: Before Nola and her sister Helan succumbed to sleeping sickness, their family, like many Syrians who passed through refugee camps, fled their war-torn country. The girls’ mother had been assaulted and shamed. “These children were traumatized long before they fell ill,” writes Suzanne O’Sullivan.Slawomir Kowalewski / ShutterstockI 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 60s, 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—a small but spacious apartment that overlooked a leafy playground—and knew their way around it.From the front door, they had led me promptly and directly to Nola’s room. 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.”When this started happening, it was unprecedented. Nobody knew what to call it. Was it a coma? 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,” she replied.Nola and Helan are two of the hundreds of sleeping children who have appeared sporadically in Sweden over a span of 20 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 behavior 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 7 to 19. 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.”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.Dr. Olssen rolled up Nola’s sleeve and tested her blood pressure. The child didn’t flinch. “One hundred over seventy-one,” Dr. Olssen told me, which is normal for a relaxed child. She lifted Nola’s arm to show me how limp it was. The arm dropped unceremoniously onto the bed when let go. She turned to me and asked me to carry out an examination.I hesitated. I am a doctor, but I wasn’t Nola’s doctor. I looked at her mother, who was still standing at the end of her bed. We had no shared language. What brief conversation we had went through Dr. Olssen. She seemed happy for me to be there, but I longed to talk to her directly, without a go-between. There were so many languages, and such varied dynamics between the people around the bed, that I found it hard to read the room.The lucky ones were sick for a few months, but many didn’t wake for years. Some still haven’t woken. Dr. Olssen raised her eyebrows as she waited for me to answer. “What did you come here to do?”Good question. Suddenly, I didn’t know why I was there. I saw patients a little like those girls all the time in my job. What made them special enough for me to feel the need to visit, and what did I hope to gain?“Come on.” Dr. Olssen coaxed me forward. “You’re a neurologist, aren’t you?”I remembered why I was there. Dr. Olssen was a retired ear, nose, and throat doctor, desperate to help the children and support the families. She’d welcomed me because I was a neurologist. She hoped that I could find an explanation for what had so far been inexplicable; that I would interpret the clinical signs and, by doing so, legitimize the girls’ suffering and convince someone to help them. That Nola had been lying in bed for a year and half without eating or moving had not been deemed impressive enough to get her the help she needed. A neurologist, a specialist in brain disease, would add weight to the diagnosis, or so Dr. Olssen hoped.That’s how modern medicine works: Disease impresses people; illness with no evidence of disease does not. Psychological illness, psychosomatic and functional symptoms are the least respected of medical problems.“Examine her,” Dr. Olssen said again.Reluctantly, I took Nola’s legs in my hands and felt the muscle bulk. I moved her limbs to assess mobility and tone. Her muscles felt healthy, not wasted. Her reflexes were normal. Apart from her unresponsiveness, there was nothing abnormal.I tried to open Nola’s eyes, as Dr. Olssen had, and felt her resist. Dr. Olssen asked me to palpate the muscles in her cheeks. In contrast to every other muscle in her small body, these were rigid. Her teeth were clenched shut—another piece of evidence against passive, apathetic restfulness.I looked behind me, at Helan. The dog was staring at her; Sam, Dr. Olssen’s husband, was holding him by the collar to keep him in check. Helan looked past the dog, at me. I smiled at her again, but she just stared back blankly.Dr. Olssen followed my gaze. “Nola was the first to get sick. Helan only got symptoms after the third asylum refusal, when the family were told they had to leave Sweden.”Resignation syndrome is not indiscriminate. It is a disorder that exclusively affects children of asylum-seeking families. These children were traumatized long before they fell ill. Some were already showing very early signs of illness when they arrived in Sweden, but most only began to withdraw when their families were faced with the long process of asylum application. Nola had come to Sweden when she was two and half—at least, that was the official age she was given on arrival, by a man she had never met before. Nola’s family fled the Turkey-Syria border when she was a toddler, and their journey to Sweden had been uncharted. Somewhere in transit, their papers were destroyed. Arriving at the Swedish border, they had no proof of who they were or where they came from, so the authorities estimated their ages. They determined Nola to be two and a half, Helan to be three and a half, and their younger brother to be one.Nola’s family are Yazidi, an ethnic-minority people indigenous to Iraq, Syria, and Turkey. The worldwide number of Yazidi is estimated to be fewer than 700,000. Walking through the house to Nola’s room, I had seen a picture of a peacock hanging on the wall, dark blue with his open tail feathers displayed behind him. Nola’s father had a peacock tattoo on his arm. The Peacock Angel is central to the Yazidi religion. They believe he was created by the supreme deity and that he governs Earth. The stories told about the Peacock Angel have links to the beliefs of other religions. He is said to have taught Adam and Eve. He is also the reason that the Yazidi have been referred to as devil worshippers. Some say that, because the Peacock Angel rebelled against God and was cast into hell, he therefore represents Satan. It is this sort of interpretation of their beliefs that has seen the group subjected to centuries of persecution. In the 19th and 20th centuries alone, they were subjected to 72 genocidal massacres, while in the 21st century they have been the victims of many bloody attacks, first in Iraq and more recently in Syria. Women and children have been gang-raped and taken as sex slaves. In the region of 70,000 Yazidi people are said to have sought asylum in Europe.That’s how modern medicine works: Disease impresses people; illness with no evidence of disease does not. Nobody can prove what Nola and her family suffered before they came to Sweden—I can only tell you the story I was told. The family used to live in an underdeveloped rural village in Syria, near the border with Turkey. Most of the people had no running water, but they had a communal well to which Nola’s mother made daily trips. One morning, when she went to get water, she was grabbed by a group of four men, who dragged her into the woods and assaulted her. When she came home and told her family what had happened, her father was furious with her for bringing shame on them. Over the next weeks, there were heated arguments between Nola’s grandfather and her parents. In one of them, Nola and her siblings were in the room when their grandfather threatened to kill their mother. At the time of the assault, Nola’s mother had been pregnant with her fourth child, but she soon miscarried.With threats to the family from inside and outside the home, staying in Syria was untenable and the family were forced to flee. Arriving in Sweden with no papers, unable to speak Swedish and unable to read a Latin-script alphabet, they struggled to communicate and had no way of verifying where they’d come from or who they were. They immediately applied for asylum, but asylum depended on them proving they had been persecuted in their country of origin and convincing the authorities that it was unsafe for them to return.At the time, Sweden took a generous stance on asylum seekers, and Nola’s family were given temporary permission to stay. The subsequent process of applying for permanent asylum was very slow. Before it was properly underway, Nola and Helan were already in school. After several years, the family’s application for asylum was processed—and then refused, although they had the right to appeal the decision, not once but twice. By that time, the Syrian war had started, making their birthplace even more dangerous. It was at this point that Nola showed the first signs of withdrawal.The children had lived in Sweden for longer than they had lived anywhere else. All their friends were here, both children spoke fluent Swedish and Helan also had a good understanding of English. I don’t know what Nola and Helan knew of the place they were born, but, even if it was never explicitly discussed, they must have felt the fear associated with returning there. The family had placed themselves in great danger fleeing Syria, and—whether they were believed or not—they had done so for a reason.People who have psychologically mediated physical symptoms always fear being accused of feigning illness. I knew that one of the reasons Dr. Olssen was desperate for me to provide a brain-related explanation for the children’s condition was to help them escape such an accusation. She also knew that a brain disorder had a better chance of being respected than a psychological disorder. To refer to resignation syndrome as stress induced would lessen the seriousness of the children’s condition in people’s minds. It is the way of the world that the length of time a person spends as sick, immobile, and unresponsive is less impressive if it doesn’t come with a corresponding change on a brain scan.Not all the medical interest in this disorder has focused on blood tests and brain scans. More psychologically minded explanations have compared resignation syndrome to pervasive refusal syndrome (also called pervasive arousal withdrawal syndrome—PAWS), a psychiatric disorder of children and teens in which they resolutely refuse to eat, talk, walk, or engage with their surroundings. The cause is unknown, but PAWS has been linked to stress and trauma. The withdrawal in PAWS is an active one, as the word “refusal” suggests; it is not apathetic. Still, as a condition associated with hopelessness, it does seem to have more in common with resignation syndrome than other suggestions.The resignation-syndrome children became ill while living in Sweden, but most had experienced trauma in their country of birth. It seems likely, then, that this past trauma would play a significant role in the illness. Perhaps it is a form of post-traumatic stress disorder? Or could the ordeals suffered by the parents have affected their ability to parent, which in turn impacted on the emotional development of the child? One psychodynamically minded theory is that the traumatized mothers are projecting their fatalistic anguish onto their children, in what one doctor described as an act of “lethal mothering.”There is clearly much of value in investigating the biological and psychological explanations for resignation syndrome, but even when taken together they fall short. Psychological explanations focus too much on the stressor and on the mental state of the individual affected, without adequately paying attention to the bigger picture. They also come with the inevitable need to apportion blame, passing judgement on the child and the child’s family. They risk diminishing the family’s plight in the eyes of others. Psychological distress simply doesn’t elicit the same urgent need for help that physical suffering does.But the biomedical theories are even more problematic. The search for a biological mechanism is in part an attempt to ensure that the children’s condition is taken seriously, but it also threatens to neglect all the external factors that have propelled the children into chronic disability. MRI scans that try to unpick the brain mechanism of resignation syndrome are useful research tools and might offer general insights into how the brain controls consciousness and motivation, but there is something faintly ludicrous about expecting scans done on individuals to explain or solve a group phenomenon.As a neurologist, people expect me to be especially interested in the brain mechanisms that cause disability. But, standing in the bedroom shared by Nola and Helan, the confused neural networks keeping these small children in bed seemed only to be an end point and, therefore, the least important part of what created their situation. A whole lifetime had led Nola and Helan to this place, where they lay in the confines of a Swedish bedroom, the curtains pulled on a sunny day.Suzanne O’Sullivan is the author of The Sleeping Beauties: And Other Stories of Mystery Illness. She is an Irish neurologist working in Britain. Her first book, Is It All in Your Head?: True Stories of Imaginary Illness, won the 2016 Wellcome Book Prize and the Royal Society of Biology General Book Prize. She lives in London.Read our interview with Suzanne O’Sullivan here.From The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O’Sullivan. Reprinted by permission of Pantheon Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. Copyright © 2021 by Suzanne O’Sullivan. Lead image: Bernhard Keil: Young Girl Sleeping. Read More…
- NAUTILUS16 HOURS AGO
Ian and the Limits of Rationality - Issue 107: The Edge
Setting: Chesterfield High, an unusual school in the suburbs of Ohio.The teacher writes on the board:2, 3, 5, 7, ...How, he asks, do we complete this pattern?Now a student might say that the next term is 12. When the teacher asks him why, he says, “I looked out the window and saw the number 12 bus go by.”What’s wrong with this answer?One thing you might say is that there’s a metarule, a rule about rules, and the metarule is: The only valid rules are ones that don’t involve anything specific about the classroom in which the question is asked. There aren’t any “indexical” rules, in the philosopher’s terminology.So then the student says, fine, the next number in the series is 5. And this time, when you ask him why, he says it’s because it’s the fifth term in the series.So then you come back at him and say, but the fourth term is 7; according to your rule, shouldn’t it be 4?Why is your context bigger, or more important, than my lived experience of the number 12 bus? And he replies, no, no, the rule is only that some of the terms correspond to the order in which they appear. One of those special terms is the fifth one.So what about the others? Well (he says), the fourth term is 7, because you’re counting upward from the fifth in units of two. After that, we start counting down again and that’s why the third term is five, and the second term is three. The first term is 2 because that’s where we start, and that sets the size of those backwards steps.You’re understandably frustrated, because the correct answer is that the next term is 11, and the reason is that this is the list of prime numbers, and the student is clearly intelligent enough to know.“Ian,”—call him Ian—“Ian, look, you know that the correct answer is that they’re primes, and the next number in the series is 11. This is 10th-grade mathematics, it’s end-of-term review, and we did the whole unit on the prime numbers.”Ian objects. I thought the rule couldn’t be indexical! What’s the difference between my first answer and yours—mine was about the bus, yours is about where Honors Math is at the end of March? Why is your context bigger, or more important, than my lived experience of the number 12 bus? Is it just that you’re more powerful than me? Is this something to do with standardized tests and the post-War meritocracy?Let’s begin there.DialogueTeacher: I don’t doubt, Ian, that you’re clever enough to come up with any extension of the pattern you like. And I admit that we do have a list of things we want you to know, that the prime number sequence is on that list, and you and I both agree it’s the best match from that list.Practically, we need to evaluate your ability to remember what we want, and we like to make things a bit tricky because one day your boss will want you to read his mind in roughly the same way. Welcome to the real world.But the real reason, if we were to get into it—and, honestly, I’d rather not—is that my rule is better than your rule because my rule is simpler. It’s short, it’s easy to tell someone. It’s elegant. And so if you were to somehow encounter the first few terms of this sequence in the real world—say, in the crash log for a computer program you wrote, or a list of cicada generation times—you’d do far better to think about whether it’s to do with primes, than with your elaborate construction.Ian: Thanks for leveling with me. I appreciate your concern for my future employment. And it’s really useful to know that prime numbers might be a good heuristic one day.I even agree with you that elegance is a good metarule. I know you don’t mean what’s fashionable, or pretty, that you mean something that’s sort of beyond any particular culture—beauty in the abstract, that’s just as good here as it will be when I’m 80 (god forbid), and as it will be when me or my descendants meet aliens on their voyage to the stars. I don’t doubt that you, or whoever will teach me next, will have a whole list of elegant things for me to learn.But how do I know what’s elegant? I’m not saying elegance isn’t real. What I want to know is how to know “they’re all primes” is high in elegance. It can’t be that it’s only three words—I mean, it took me 12 years to learn enough to appreciate the rule, but I explained mine to you in a few seconds.Teacher: If you really want to get into it, we can. The stakes are high, however. If you’re asking questions about completing a pattern, you’re looking under the hood at reason itself.When we look out into the world, it’s natural to say that we see patterns: patterns in how people behave, or how nature works, even patterns that we reflect on in our own minds.But that’s not quite the case. What we see is a field of possible patterns, possible ways to complete the series.Imagine, and this is the standard example from the theory of rational explanation, a doctor. On the surface, it looks like a doctor is in the business of translating a patient’s symptoms into a diagnosis.A good doctor, however, inverts the process: He plays out each disease in turn, seeing how well the symptoms match the story. If a patient had a respiratory virus, for example, it might make some of his symptoms very likely indeed, but others he sees would require an unlikely coincidence. A different disease would easily produce all of the symptoms—but given who the patient is, he would be far much less likely to contract it at all.The doctor contemplates two different ways to complete the pattern. In one case, the respiratory virus, he completes the pattern in a natural fashion—he counts off symptoms, although not all of them match very well. In the other case, he matches reality perfectly—but the pattern is an unusual one, more like your jumbled rule from before. The rational doctor’s job is to weigh the benefits of matching with the plausibility of the underlying template.Ian: This all seems pretty contrived. You have your doctor imagining different diseases, but there are plenty of places where that doesn’t work. When I’m doing translations in Honors Latin, I don’t try a whole bunch of sentences in English, translate them to Latin, and see which one fits the best. I don’t reverse the natural direction. We haven’t even tried English-to-Latin translation yet, it’s much harder.Teacher: Bear with me. In the doctor’s case, the two possible patterns are pretty easy to weigh against each other: He has a sense of how common the two diseases are, and it turns out that there’s an optimal procedure for how to combine these facts with the relative match to the symptoms at hand.Even in your case, the case that started this whole discussion, the answer is pretty easy. Given “2, 3, 5, 7,” and the fact that I’m the one presenting it, and the context you’re in, if your goal is to figure out what’s in my head, the prime number pattern is far more likely than the rules you gave, or any other people have found.Ian: We’ve been over this. That’s not what I’m after.Teacher: Yes. You’re not interested in reverse-engineering the system. You want to know the truth—you want these methods to give you true answers, not useful ones.Ian: Exactly.If I need priors to choose between patterns, I can’t learn the priors themselves in the same way! Teacher: So I’ll give you a new word: “prior.” A prior is a rule for how to judge a pattern before the evidence comes in. What you’re really asking about is how we get the right priors.Having good priors is why Latin-to-English is easier than English-to-Latin. You know a lot about what English sentences look like, because of how you grew up—subjects and verbs and objects in familiar orders. You can spot a few key vocabulary words in the Latin, crossing off sentences before you even entertain them. It’s iterative, subconscious, and you don’t make the leap all at once.Ian: Fair enough. If I think about it, I may even do a little conscious diagnosis, too, at the end. If I have two translations I’m deciding between, I might ask how they’d look in Latin.Where do these priors come from?Teacher: Practically speaking, the answer is that we learn them. If you spend enough time in high school, you learn to prefer patterns that are in the curriculum, and if a doctor spends enough time in practice he learns the right preconceptions—Ian: No, no, I’m sorry to interrupt, but I can see where this is going and I don’t agree. If I need priors to choose between patterns, I can’t learn the priors themselves in the same way! It’s just regress; how can I learn the high school testing pattern without having certain preferences that prefer that pattern over, say, the Illuminati Conspiracy Pattern that tells me you and the rest of the faculty are lizard people who pass messages to me through the bus lines. If you contradict me, I can just say you’re wrong —I’ve done that to other teachers, you know.Teacher: I do. If you trace the regress back far enough, our priors come from evolution. Ancestors with the wrong priors die out; our priors get better; we become more rational.Ian: What does death have to do with rationality? Evolution doesn’t want you to know the truth. It wants you to believe the thing that will bring you more children. If evolution can get you to have more children by thinking beautiful women are actually shadows of a divine order, then a lot of people are going to walk around completely convinced of that, with these kinds of lizard-people priors that are constantly confirmed.Obeying my biology might make me happy, but it won’t tell me the truth, and it won’t get me to the stars. Changing my biology is no better: drugs, brain hacking, it’s just more priors, and how can I judge between them?Tell me about beauty. Beauty is a way out.Teacher: That’s correct. It’s a value, but it’s a universal one—we call it beauty here in Chesterfield High, but that other cultures might have called it something else, and that beauty, or elegance, or whatever it is, is “a thing.” It’s a real, measurable quantity, something that can guide us beyond our biological priors. It’s Occam’s Razor, preferring the simple, avoiding unnecessary complications. Some people even call it the “Universal Prior.”Ian: It sounds a little religious. At least it’s not indexical. I’ll take a universal principle over a specific one. And I confess it has a rather attractive, esoteric feel.This prior, it has to do with succinctness, like a poem—how swiftly the rule can be conveyed. My rule is complicated, yours is not, so yours is more likely.Teacher: Yes. We do as the great physicists did: equate beauty and simplicity, and judge the latter. When we ask which rule is simpler in the most general and abstract fashion possible, we’re talking about something called Kolmogorov Complexity. Every rule has a Kolmogorov Complexity, the length of the rule stated in the most efficient fashion possible. The smaller the complexity, the more beautiful and preferable the rule.Ian: — but —Teacher: And I know where you’re going; you’re going to give all sorts of objections to why your rule is actually simpler than mine.Beauty is a way out. Ian: Yes. And unless you can show me why, I’ll have to assume that this Kolmogorov Complexity is just another ideology, something that’s made up to tilt me in one direction over another. Maybe it’s beauty, but it’s basically the same as getting hot for girls. Or boys.Teacher: Don’t get personal. It’s not a trick. Kolmogorov Complexity—let me put a lot of mathematics aside for a moment—is absolutely real. Every pattern has a simplicity, which corresponds to its Kolmogorov Complexity.Ian: So let’s settle the original question. Is there an app that tells us the Kolmogorov Complexity of our rules?Teacher: No, there’s no app.Ian: Why not?Teacher: Because even though Kolmogorov Complexity is real, and every rule has one, it’s not knowable. It’s not measurable.Ian: That’s nonsense. It might be hard to calculate, but how can it be impossible? Why can’t I just work it out?Teacher: We usually show that with a proof by contradiction. If you tell me that you have a calculation method, I’ll show you how it must—for an unknowable set of patterns —give the wrong answer. And I’ll even show you that you can’t get close. If you think you have a way to approximate it, I’ll show you how that method must be wrong as well.Ian: So there’s a universal prior, but we’ll never know it? You’re using reason to tell me that rationality is unfounded, that there are these unknowable edges. That’s insane.Teacher: A lot of things have edges. In the case of reason, it’s a very crinkly one, hard to spot, and easy to wander back and forth across. It’s quite beautiful, really.Ian: You don’t understand. I’m 16 years old. I’m in high school. Half the people around me are morons, half of them are sex-crazed, and half sold out for status. A plurality are all three. We haven’t even gotten into how I feel about my body. The whole System has traumatized me, and I’m full of harmful—irrational—beliefs.Rationality is my ticket out. The only reason I can trust you is that you seem rational enough to talk to. But now you’re telling me that rationality is just a layer on top of the System—it’s just as irrational as the people I’m trying to escape. I don’t know which is worse: being duped by someone else’s priors, or being a biological machine.Teacher: Don’t go too far. You’re a smart kid—you can iterate faster than most. You can match patterns better. Evolution set you up well. You’ll get better at predicting the consequences of your actions, and better at adapting your environment to your will. Rationality is systematized winning.Ian: It’s not winning I’m worried about. It’s my mind. Maybe it’s silly, maybe it’s a fetish, but I want to know the truth. It’s the principle of the thing. Wanting to know the truth got me this far, but now the only option you’ve given me is believing in something I can’t see. If I know it at all, it can’t be through rational, scientific calculation. There’s some kind of extra-rational process I have to engage in—but what’s beyond the edge of reason?Teacher: Many things. Dreams, intuition, transcendence, love, ascending the ladder, repetition and the leap of faith, philosophy itself ...Ian: ... delusion, fairy tales, fascism!Teacher: Childhood’s end.Simon DeDeo is a professor of social and decision science at Carnegie Mellon University, and external faculty at the Santa Fe Institute. In November, he’ll be leading a public seminar on the future of intelligence through the New Centre for Research and Practice.Lead image: Sergey Nivens / ShutterstockRead More…
- NAUTILUS16 HOURS AGO
The Neurologist Who Diagnoses Psychosomatics - Issue 107: The Edge
Our brains can play the worst tricks on us. They are always looking to explain and categorize incoming stimuli, sometimes perceiving threats out of the flimsiest bits of information gleaned from our bodies and our environment. Every so often they go into overdrive, inducing the worst kinds of illnesses—hallucinations, seizures, paralysis, coma—even when there’s no underlying physical problem.This is the territory that the Irish neurologist Suzanne O’Sullivan has been exploring for years. Based in London, she sees hard-to-diagnose cases, often patients suffering from seizures which may or may not be caused by epilepsy. She’s on a mission to debunk our misconceptions about psychosomatic illnesses. Think they’re not serious? Not real illnesses? People are faking it? O’Sullivan will set you straight with hair-raising stories about people who’ve been permanently disabled by dissociative disorders.Like Oliver Sacks, O’Sullivan is a gifted writer whose compassion for patients bursts through her case studies. In her new book, The Sleeping Beauties: And Other Stories of Mystery Illness, she travels the world to investigate a series of bizarre and fascinating disorders. What’s new in these illnesses is their high degree of contagion. A girl in Sweden becomes listless and hundreds of other kids fall into similar stupors (“Why These Children Fell Into an Endless Sleep”). A teenager in Nicaragua sees a frightening little man in a hat and dozens of other kids in school start having similar apparitions. Dozens of American diplomats in embassies around the world report a cluster of common ailments—headaches, fatigue, memory lapses—despite scant evidence of any physical cause.O’Sullivan says psychosomatic illnesses are far more common than we realize, but few people admit to having them. In fact, she explains, “not accepting the diagnosis forces people to reinforce their symptoms, travel around to doctors, and have test after test. It can be really life-destroying, looking for that alternative diagnosis when there isn’t one.”I reached O’Sullivan at her home in London to talk about these mystery illnesses and the problems with medical diagnosis.MIND AND BODY: “We shouldn’t make the distinction between body and mind,” says Suzanne O’Sullivan. “Our body and mind interact together.” Biology itself isn’t the final word on the sleeping children’s symptoms. “They are real symptoms because they are disabling the children very severely.”Johnathan GreetYou tell the story of a mysterious illness in Sweden where hundreds of children have become bedridden. What did you see when you visited some of these girls?I visited two little girls, aged 10 and 11. The 10-year-old had been in this odd comatose state for a year and a half, and her older sister had been like this for about six months. It was shocking. When we walked into the 10-year-old’s bedroom, there wasn’t even a flicker of recognition. She looked healthy, but when her father tried to pick her up, she was just floppy, like a rag doll. She didn’t open her eyes to any sort of stimulation, and that is exactly how she’s been for a year and a half. Her parents keep her alive with tube feeding.This is called “resignation syndrome.” It was first referred to as apathy because the children withdraw slowly from the world, and they gradually descend into a state in which they can’t interact at all. It’s been happening in Sweden since the early 2000s. What’s most interesting is that these are not just any children. They all belong to families seeking asylum in Sweden, and they fall into this state of resignation syndrome when they are faced with potentially being deported from Sweden. Many of them come from ex-Russian republics or from small groups who’ve had particularly difficult lives, like the Yazidi or the Uyghur Muslims. They’ve probably fled something quite horrific in their countries of origin. But the children I met had been in Sweden since the age of 2 and were now 10 and 11, so this illness must be linked in some way to their lives in Sweden.You met the doctor who regularly sees these girls. How did she explain their illness?When I spoke to the doctor who facilitated my visit, I wanted to talk about this obvious link between the loss of hope the children were facing and the condition they were in, but she wasn’t happy to have that discussion. What she wanted me to do as a neurologist was to speculate about what’s happening in the brains of these children. I certainly think that’s a very interesting conversation. It would teach us a lot about motivation and consciousness, but that discussion took us away from the real problem. These children are in this state because they’re facing deportation.The sickness came along as a sort of sophisticated solution to a problem. Why would these children become bedridden and comatose?I want to make a distinction between disease and illness. When I talk about disease, I’m referring to something which is objective, which isn’t controlled by how we think about our bodies. But an illness is a perception of how one feels, and illnesses can be programmed through expectations in our brains.Let’s imagine we’re one of these asylum-seeking children and we know that the possibility of deportation sometimes leads to apathy. How would we respond when we felt those initial physiological changes? What can happen in illness is that our bodies respond how we expect them to respond. Think about what happens when you’re being deported. First you feel a bit sick and then you don’t have any energy. Then you don’t feel able to get out of bed and then you close your eyes. It isn’t unusual for somebody to manifest physical symptoms in the context of ideas, stories, and stresses. What’s unusual for these children is the extremity of what’s happened to them.The other thing that’s unusual is that it’s not just one or two kids. There are hundreds. It’s a contagion that’s sweeping through these families who’ve settled in Sweden.Again, is that unusual? To a certain degree, illness is a social construct. If you believe that certain provocations will produce certain symptoms because it exists within the folklore of your community, it’s easy for that to overwhelm your system and produce those symptoms. We shouldn’t make the distinction between body and mind. Our body and mind interact together. They are real symptoms because they are disabling the children very severely.One of the recurring themes in your case studies—in Sweden and elsewhere—is that people don’t like being told their illness is psychosomatic. That’s also true with your patients who’ve had seizures and assume they have epilepsy. You say a high percentage of these cases are psychosomatic.At least a quarter of the people referred to me who believe they have epilepsy—who have regular seizures—have purely psychosomatic seizures. It’s a phenomenally common way for the body to respond to certain stresses. It often begins with something biological, like a faint. For example, a young person gets on a packed train and it’s really hot and they faint in a completely normal way. That can create a fear in a person’s brain where the next time they get on the train, they think, ‘Oh, I really hope I don’t faint again.’ They begin examining their bodies in ways that they would not normally do and that can lead to an escalation of symptoms and ultimately to seizures.You investigated other psychosomatic illnesses that become contagious. Some Miskito people in Nicaragua go into trances and have scary hallucinations. What’s happening with them?This is an interesting condition called “grisi siknis.” Within certain cultures, there are specific symptoms and medical diagnoses that exist only in that culture. Grisi siknis belongs to the Miskito tribe of Nicaragua who live in the Miskito Coast. It mostly affects teenagers—schoolgirls in particular—and it manifests as just crazy behavior. They run around manically, then drop to the ground, and they have intense seizures. The family members say they’re so strong that it takes several men to hold them down. This condition goes in waves through the Miskito communities. If one school child gets it, then it might pass through a school.How do the Miskito people explain what’s happening?They believe the person who is affected has been visited by a spirit called the duende. They often hallucinate that spirit, who’s usually a small figure wearing a hat. They believe this spirit infects them and causes the seizures. It tends to occur in young women who are sexually conflicted and receiving unwanted attention from older men.How do the Miskitos treat grisi siknis?They treat it with ritual. There’s a traditional healer who douses the children in herbs. It’s incredibly successful. It’s important to understand that it’s a sophisticated social mechanism that these people are using to deal with a particular social problem. It manifests in situations where the girls are under a particular type of pressure in a conservative society. The grisi siknis acts as a way for them to externalize their distress and express the need for help without having to have that awkward conversation or without having to be explicit about what the exact problem is.The children withdraw slowly from the world and descend into a state in which they can’t interact at all. So it’s probably more effective to go through this kind of ritual, which sounds like an exorcism, rather than going into a hospital to be treated by a doctor.One hundred percent. I think we need to ask what we can learn from these people. People with very similar seizures in the United Kingdom or in the States will go to a doctor, have a brain scan and a variety of other tests, and the recovery rate will only be about 30 percent. These people achieve a recovery rate of about 100 percent. That doesn’t mean we should all start adopting rituals and using traditional healing methods. But we should ask ourselves: What are the seizures trying to tell us? When a Miskito child gets sick, the whole community rallies around them. We lock away people who have these sorts of conditions. We could learn from this more compassionate, community-based response.There’s a very different kind of psychosomatic illness that you investigated in Kazakhstan. What did you find there?I had this amazing trip to two little towns called Krasnogorsk and Kalachi in the middle of Kazakhstan. This story began in 2011 when a middle-aged woman was working in a market stall and fell asleep. People in the other market stalls just couldn’t wake her up. She was taken to a good hospital and all the tests were normal. It went unexplained. After a week, she just woke up and went back to normal again. Unfortunately, then it spread. Over the course of the next few years, 133 people fell into a mysterious sleep, and some got a variety of other symptoms, such as hallucinations. The government in Kazakhstan went into absolute overdrive with these people, trying to understand what was happening to them. They took hair samples, atmospheric samples, water samples. People were looking for poisons and anything that could explain it.There was a mine nearby, so toxins could be one explanation.This was an ex-mining town. These people had lived and worked in a uranium mine for many years and were never sick. The uranium mine had been closed since the 1990s and they got sick 20 years later. That’s not to say it wasn’t reasonable for them to investigate some sort of poison coming from the mine, but those tests were done exhaustively, and nothing was found.What is your explanation?When I saw pictures of this town for the first time, I saw it was a very poor town. It’s dilapidated, with crumbling buildings. People had no work. I had the assumption, like many doctors do, that they were just so stressed that they had dissociated and fallen into this coma. But when I went there, I discovered a different story. These people had been shipped to this secret uranium mining town in the 1970s. They referred to it as paradise, which I didn’t believe at first. But as I heard their stories, I realized it had been paradise in the middle of Kazakhstan. They were under protection from Moscow. They had cinemas and a great hospital. Their shop was filled with produce that wasn’t available anywhere else in Kazakhstan. But then it all changed. The uranium mines shut down and they went from having this very special life to having an especially difficult life.It isn’t unusual for somebody to manifest physical symptoms in the context of stories and stresses. Because once the Soviet Union collapsed, the Russians no longer supported these towns in Kazakhstan.The uranium mines closed, and this town lost its protection. But that is not when they got sick. In stress, you would expect someone to get sick when they start going through these hardships. The problem arose around 2010, when the town had lost so many amenities that the government wanted to shut it down. There were only 300 people left living there and the housing conditions were poor, so the government wanted to rehouse them in a bigger town. But the people didn’t want to go.As they were telling me their stories, I realized that this didn’t have anything to do with hardship. It was about their reluctance to leave the town. It was like a love story. This town had served them phenomenally well. They were living for the day when it would be revitalized—but also realizing that was never going to happen. The sleeping sickness came along as a sort of sophisticated solution to a problem. When they left the town and were rehoused, they recovered. They hadn’t chosen to leave the town, but the sleeping sickness had made the decision for them.The people who got sick believed they were poisoned by the uranium mine. They didn’t want this psychosomatic diagnosis.That is still their conviction. There’s not a shred of evidence for poison, but to this day, the people still strongly believe that they were being poisoned and that’s why they had to leave the town. You can understand why. If the perception is that someone with psychosomatic disorders is weak, or someone with psychosomatic disorders is mad, crazy, or pretending, why would you accept that diagnosis?When you talked to people who had this sleeping sickness, I assume you told them they hadn’t been poisoned. That sounds like a difficult conversation.You know, that’s something I learned from meeting with these people. I have this Western medical perception that if I can just explain to people what’s going on physiologically, and why this is a psychosomatic condition, they will believe me and get relief. That’s absolutely not what happens. People have invested in their own explanation. When you try to raise psychosomatic conditions, however carefully you do it, it’s not welcomed. I realize now that maybe not raising it is sometimes the right thing to do. If psychosomatic conditions have come along to solve a problem, then perhaps it’s not right to always try and force it out into the open.That’s an unusual response to hear from a Western neurologist—let people believe in their mistaken diagnosis.I’m not going to encourage people to believe in a diagnosis that I don’t believe in. But I can try and listen more to the story that the person is telling so I can understand the problem. What happens an awful lot with Western medical doctors is we get into arguments with our patients. I’m saying it’s psychosomatic and the patient is saying, ‘No, it’s not.’ Once you get into that sort of argument with the patient, it’s unproductive, and neither of you will ever get anywhere. It’s perhaps reasonable for me to put my psychosomatic explanation to the patient, but also spend more time listening to the story they’re telling themselves. Sometimes a psychosomatic illness is an embodied narrative that has a beginning, middle, and end. I need to understand what they perceive the solution to be. Obviously, there’s a limit to what is reasonable.The cases we’ve been talking about deal with people who’ve lost their homes, or may live in cultures that believe in spirit possession. But you also write about the American diplomats in Cuba who’ve developed a whole series of symptoms—dizziness, headaches, memory problems, fatigue—in what has been called Havana Syndrome. It’s been widely reported that there must be some secret weapon that our enemies are using to attack American diplomats in foreign embassies. You don’t believe that, do you?It’s not just that I don’t believe it. What has been suggested is biologically impossible. It’s folklore, not unlike believing that you’ve been infected by a duende. The premise for the sonic weapon attack is extremely weak. In December, 2016, an American diplomat in Cuba heard a strange noise and simultaneously got an odd set of symptoms that included things like headache, dizziness, unsteadiness, difficulty concentrating. That began the rumor that people in the embassy were being attacked by a sonic weapon.Or some sort of microwave energy weapon.Well, it’s very interesting how the story evolved. It began as a sound weapon because someone heard a sound. Then other people also said they heard a sound and got sick. Now, there’s a big medical problem. Sound does not damage the brain. An exceptionally loud sound can damage the hearing through the ears. But it does not damage the brain. The scientists involved in this case had to begin to accept that sound doesn’t damage the brain. They said, ‘Well, perhaps it isn’t a sonic weapon in the hearing range. Perhaps it’s something outside of the hearing range, like a microwave weapon.’Here we immediately have a big problem. If the whole premise for thinking there was a sound weapon was based on the fact people heard a sound, then where is the logic in deciding that now it’s a microwave weapon, which doesn’t make a sound? And there are many biological reasons why a microwave weapon is impossible. No such weapon exists. I’m not a weapons expert, but I am a medical doctor who knows that microwave energy would have no preference for the brain if one were attacked by a microwave weapon. It’s not possible to direct a microwave energy from a great distance at one person and only damage their brain. Why wouldn’t one have blood vessel problems in the kidneys, in the heart, in the lungs? It’s a biological impossibility. But the idea clings on and is reported in the press even now.It’s not just that I don’t believe it. What has been suggested is biologically impossible. It’s folklore. The U.S. government hired some prominent doctors to investigate, and they suggested that maybe these symptoms were caused by some secret weapon.Yeah, the difference between what has been reported in the media about that report and what is in that report is very interesting. I’m wondering, Steve, have you read that report?I have not.Therein lies a big part of our problem. I have read the report and the vast majority of people have not. The report says there were so many symptoms in the people examined that they couldn’t even say these people had the same thing. They ended up dismissing huge numbers of people who were reportedly involved in this outbreak, and then boiled it down to a smaller number of people. They then dismissed the psychosomatic explanation out of hand without having a great explanation for doing that. Then they gave many diagnoses that are psychosomatic but use euphemisms to hide that fact. So, for example, they use words like “functional,” and put in brackets “functional, not psychiatric,” which is a way that doctors call things psychosomatic without calling them psychosomatic. They did mention that they thought this was microwave energy, but when one reads the entire report, it’s chilling how little evidence there is for it. They didn’t even meet the people involved.So how do you explain what happened to these American diplomats in Cuba?It’s impossible to know what happened to the first person because in these sorts of outbreaks, the first person could have a completely different illness from everyone else. But they set the template for what may happen next. When you read about the experience of the people in the embassy, it really was frightening. People were told they were potentially being attacked by a sonic weapon. They were told to hide behind walls if they heard a strange noise. They were called repeatedly to meetings and told to examine their bodies for symptoms. They were then told to go to a doctor even if they didn’t have any symptoms. There was escalating anxiety with instructions for people to examine their bodies.This happened after 50 years of tense relations between Cuba and the U.S. The American embassy had just opened under Obama, and they were worried that Cubans would plant eavesdropping devices in the building. There are good reasons why people would be stressed out.It was realistic for these people to believe they could be under threat. There are many precedents for diplomats in Cuba and in Russia having secret listening devices. And these people had been instructed that this attack was potentially underway and instructed to examine their bodies. Well, what happens when you examine your body for symptoms? You find them. If somebody says to you, ‘You’ve been exposed to an illness or an attack, please examine your body for symptoms,’ you immediately start noticing tingling and discomforts that you wouldn’t normally notice.But this is not just a Cuban phenomenon. American diplomats at the embassies in China and Germany reported similar symptoms.It’s now moved around the world. There have been cases reported in London, in Germany. But that’s the nature of contagious symptoms. It’s also worth noting how the psychosomatic possibility was discussed for the diplomats in Cuba. The doctors involved in the case said the diplomats are not acting or pretending, and they don’t want to be sick. Now, if that’s how you perceive a psychosomatic condition, you’re pretty much saying to your patients, ‘Well, here are your choices: You’re either pretending and you’re mad and you want to be sick, or you’re being attacked by a sonic weapon.’ Which would you prefer? The choice is obvious.Steve Paulson is the executive producer of Wisconsin Public Radio’s nationally syndicated show To the Best of Our Knowledge. He’s the author of Atoms and Eden: Conversations on Religion and Science. You can subscribe to TTBOOK’s podcast here.Read about Suzanne O’Sullivan’s emotional trip to Sweden, “Why These Children Fell Into an Endless Sleep.”Lead image: Jorm S / ShutterstockRead More…
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