How a Rare Disorder Makes People See Monsters

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A mysterious neurological condition makes faces look grotesque—and sheds new light on the inner workings of the brain.

 

In 2007, Jason Werbeloff, a twenty-two-year-old graduate student in Johannesburg, South Africa, spent months in bed with a severe case of mononucleosis. Every part of his body—his joints, his skin, his swollen throat—was in pain, and he passed the time staring at the concrete ceiling of his room. Television gave him a headache; he tried to read but often forgot the names of characters by the end of each page. He saw no one except his mother, who occasionally stopped by with groceries.

 

After he recovered, Werbeloff was eager to be around people again, and he spent a night clubbing. In the shifting red light, he looked at a friend’s face and realized that the right side looked odd. It seemed to stretch outward, like Silly Putty being pulled, and a dark, rough patch was visible around the friend’s right eye. Werbeloff blinked and looked away, and his friend’s features briefly returned to normal. Then the distortions appeared again. “That is when people got ugly,” Werbeloff told me.

 

In the weeks that followed, Werbeloff started to notice similar unsettling changes in everyone he looked at. “If they were smiling with their teeth very visible, then, on the right-hand side, the canine tooth would elongate,” he told me. Even his own face in the mirror looked malformed on the right. He had long known that his ability to recognize faces was so poor that it bordered on prosopagnosia—face blindness—but now he wondered whether he suffered from something else. He worried that he harbored an unconscious dislike for almost everyone he met.

 

For fourteen years, Werbeloff treated the facial distortions as an uncanny and ever-present part of his life. He grew accustomed to looking away from faces periodically, so that they would temporarily return to normal. Then he came across a curious Facebook post in a group for people with prosopagnosia. The author of the post wanted to know whether anyone else had seen faces morph into strange configurations. When Werbeloff said yes, he was told to e-mail Brad Duchaine, a professor of psychological and brain sciences at Dartmouth College, who was studying the phenomenon.

 

In May, 2021, Duchaine interviewed Werbeloff via Zoom. Had Werbeloff suffered any traumatic brain injuries? (No.) Did he ever see faces change before his bout with mono? (No.) Did he see distortions on half of the face, or all of it? (Only the right half.) Duchaine said that Werbeloff seemed to have a rare and largely unexplained condition called prosopometamorphopsia, or PMO. He was trying to meet as many PMO sufferers as he could—not only to identify why the distortions were occurring but to illuminate the intricate way in which the human brain perceives faces.

 

During the Zoom call, Duchaine’s Ph.D. student Sarah Herald asked Werbeloff to stare at portrait photos for longer than he was used to. Werbeloff hadn’t realized how distended a face could become: the right side stretched until it was bulging, and the dark patch became a deep concave pit encircling the eye. After the session, Werbeloff cried. “I don’t believe in demons,” Werbeloff told me. “But I can totally understand that someone who was religious would find it a deeply religiously disturbing experience.”

 

This past April, for the first time, Werbeloff visited Duchaine at Dartmouth, where he had his brain imaged while looking at faces under different conditions. A few days later, on a blustery morning in Manhattan, he met me on the steps of the Metropolitan Museum of Art. Werbeloff is now thirty-nine, with short curly hair and brown glasses. He owns a marketing company and hosts Brain in a Vat, a YouTube channel about philosophy. I found his face easy to look at, but I knew that mine might not be, so we sat side by side. (Over the years, he has realized that faces in profile appear less distorted to him.)

 

Werbeloff speaks in a crisp South African accent and seems to choose his words with care. As we watched throngs of museum visitors go by, he told me that he didn’t see distortions if he made sure not to look at any face for more than three seconds. This was possible in a crowd, he went on, but not in intimate relationships. He remembered a time before his condition began, when he dated a man for three and a half years. “From the day I met him until the day I left him, his face didn’t become any less beautiful,” he said. But, since he developed PMO, merely gazing at his loved ones has caused their faces to change. “That was a huge loss,” he told me. “I couldn’t see someone as they were.”

 

In 1947, Joachim Bodamer, a German neurologist, wrote about three patients who struggled with the perception of human faces. Two of the patients had difficulty with recognition, and Bodamer came up with the term “prosopagnosia” to describe them. A third patient, whom Bodamer called Patient B, saw faces as “distorted or displaced.” To this person, the neurologist wrote, “a nurse’s nose was turned sideways by several degrees, one eyebrow was higher than the other, the mouth was squinted, and the hair shifted like an ill-fitting cap.”

 

Scientists ultimately published hundreds of papers on face blindness, and Oliver Sacks wrote about it for this magazine. (“On several occasions I have apologized for almost bumping into a large bearded man, only to realize that the large bearded man was myself in a mirror,” he wrote, in 2010.) Patient B’s condition, however, went largely unexplored. Macdonald Critchley, a British neurologist, was one of only a few scholars who studied visual aberrations that specifically affect the face; in the nineteen-fifties, he introduced the term “prosopometamorphopsia,” from the Greek for face (prosopon); to distort (metamorphoun); and sight (opsis).

 

In 2011, a Dutch woman named Ellen Novara-da Lima sent Sacks an e-mail. “I am a woman of 52 years old and I suffer from an illness,” she wrote. “I think there’s no name for it. I see monsters, ugly faces all day.” Because Sacks couldn’t evaluate her from New York, he referred her to a neurologist in the Netherlands, Jan Dirk Blom, who published a paper about her, with Sacks as a co-author. “She could perceive and recognise actual faces, but after several minutes they turned black, grew long, pointy ears and a protruding snout, and displayed a reptiloid skin,” they wrote. Sacks and Blom diagnosed her as having PMO.

 

Blom works at a nondescript psychiatric facility that is tucked into a medical and business complex in The Hague. When I visited him there, in 2023, I presented my I.D. at the front desk and followed him to a sterile exam room. He wore an authoritative gray suit and polished dress shoes. When he started to research PMO, he told me, there was very little published work on the subject. By reading old case studies, however, he was able to identify seventy-three historical patients who seemed to have experienced the condition. An early account, published in Berlin in 1904, said that, after a seizure, a thirty-seven-year-old woman saw a change in her reflection which gave her “large, contorted eyes.” Five years later, a paper described a seventy-three-year-old stroke patient who began to see familiar faces as “large, strange, and grimacing.” In 1916, a German doctor wrote that a thirty-five-year-old woman, who had an unusual form of migraines, often saw “grotesquely disfigured faces.”

 

One of the first visual depictions of PMO dates to 1965, when an artist, who had had a tumor removed from the left side of his brain, saw distortions on the right half of people’s faces. TNP, as the patient was called in the case report, drew a smiling nurse in a white cap; a pink vortex swirled where the nurse’s right eye should have been. When TNP looked at a doctor’s face, he reported that “the eye became a ghastly staring hole, cheekbone a cavity; he had teeth on the upper lip, often had two ears” on the right side.

 

In 2019 and 2020, eight people with PMO came to Blom’s clinic. A middle-aged man saw skin where people’s right eyes should have been. A young woman told them that, for three weeks, she had perceived the left side of people’s faces as melting, and had seen their left eyes appear to fall toward their cheeks. Another woman painted the distortions she saw in her own reflection: her head getting larger, furrows on her forehead, and then a shrinking of her body and a brightening of colors. (She didn’t like to look at the painting, so she gave it to Blom.)

 

Distorted perceptions are not the same as hallucinations, Blom told me. If you saw an elephant appear in your home office, you would be hallucinating. But, if you looked up and perceived an elephant in an elephantine cloud, that’s more like a distortion. “There’s a cloud—it’s actually there,” he said. He views his PMO patients as very different from psychiatric patients with schizophrenia, who hear voices or see things that don’t exist. People with PMO aren’t helped by antipsychotics; they know that what they’re seeing isn’t right. Blom suggested that PMO could fall under the umbrella of Alice in Wonderland syndrome, a collection of neurological symptoms that can be provoked by migraines, epilepsy, viral infections, or tumors, and which distort a person’s perception of their own body and the world around them.

 

As a clinician, Blom is most concerned with alleviating symptoms, if he can. Although there is no known cure, he has found that some distortions go away with medications for epilepsy. Others simply fade on their own, in the way that migraines come and go. But for those who continue to experience distortions, Blom said, the condition undermines a central part of the human experience. “We’re constantly observing each other, and looking at all these micro-expressions,” he told me. His patients with PMO had lost access to the stories we tell with our faces: that we are curious, or bored, or annoyed; that we are lost in thought, or in love, or need to hear that last sentence again. I suddenly became aware of Blom’s eyes on me, and of all that my face was telling him.

 

The human brain seems drawn to faces from birth. One study found that newborns, in their first minutes of life, tended to follow printouts of faces with their eyes; they were much less interested in scrambled images of facial features, or in blank pages. We even see faces where there aren’t any—for example, in electrical outlets and emoticons. In the nineties, neural imaging revealed that parts of the fusiform gyrus—a brain region near the base of the skull which is associated with vision—are more active when people see faces. A team led by Nancy Kanwisher, a neuroscientist at Harvard, named these regions the fusiform face area, or FFA.

 

Neurologists often learn by studying brains that aren’t working as expected. Damage to the FFA, whether through stroke or injury, can erode one’s sensitivity to faces, and to human faces in particular. In a case study from 1993, a man developed face blindness after a stroke and then became a farmer. He struggled to tell people’s faces apart, but could consistently distinguish between his sheep.

PMO could offer another opportunity to deepen our understanding of facial recognition—something to which Duchaine has dedicated his scientific career. In his lab, in Hanover, New Hampshire, faces are everywhere: portraits of Duchaine and his students hang on the wall; cartoonish pictures of eyes, eyebrows, a nose, and a mouth dangle from a nearby “facial-expression mobile.” “Face Book,” a collection of paintings by Chuck Close, sits on the coffee table. During my visit, this past October, Duchaine led me into his office and talked me through the regions of the brain, holding up his large hands to represent each hemisphere. (Duchaine’s own facial-recognition abilities are “below average,” he told me; his wife teases him for thinking that people with similar hair look alike.)

 

Duchaine first heard about PMO while studying face blindness. He was surprised when studies and surveys suggested that around two per cent of the population develops prosopagnosia. In 2021, he created a Web site that asked people who see facial distortions to get in touch, in the hope that a similar hidden population might surface. Around a hundred and fifty people have reported facial distortions to his team—a number suggesting that, around the world, thousands of people may experience them.

 

Given that many PMO patients don’t have trouble seeing other body parts, or objects, the condition reinforces the idea that there are face-specific networks in the brain. But people with PMO can recognize faces, and this suggests that facial perception and recognition might be separate processes. (Some people with PMO see more intense distortions on strangers, whereas others see them more on loved ones; one patient said in 2012 that she saw the most extreme changes in her grandchildren.) Duchaine’s findings have led him to a novel theory of how we see faces. Roughly a quarter of his patients, including Werbeloff, have hemi-PMO—distortions that affect only half of the face. “The two halves of the face seem to be represented separately from one another, which is a surprise,” Duchaine said. We may consider our lips to be one thing, but our brains seem to see them as the left side of the lip and the right side.

 

PMO may clarify the role of each side of our brains when it sees faces. The right hemisphere seems especially important for facial perception: injury-induced face blindness tends to result from damage to the right. But PMO can apparently be caused by lesions on either side. Lesions on the left can cause distortions on the right side of people’s faces; lesions on the right can cause distortions on both sides. For this reason, Duchaine believes that the left hemisphere processes the right side of faces, and vice versa—and then, he suspects, the right side puts the pieces of the image together. “They’re fused, and they go forward together for later processing,” Duchaine said. “That’s something we didn’t know.” Researchers are able to induce PMO-like symptoms by stimulating specific parts of the brain, especially on the right side. And some hemi-PMO cases involve damage to the splenium, a part of the brain that carries information between the hemispheres.

 

Duchaine is curious about whether anyone develops PMO in the absence of brain damage. He’s in contact with a fifteen-year-old boy who has been seeing distortions for as long as the boy’s family can remember; he calls faces cartoonish, like characters from “The Simpsons.” In one test, the boy looked at a fixed point, and Duchaine’s team showed him faces in his peripheral vision. He said that all the faces stretched toward the point; he was reminded of scenes in the “Harry Potter” movies, when Dementors try to suck out people’s souls. “You could imagine that there are some people out there who have had it their entire lives,” Duchaine told me. “They have no idea what faces look like.”

 

In 2007, Victor Sharrah, who sports a white ponytail and a handlebar mustache, was working as a long-haul truck driver based in Clarkesville, Tennessee. One day that spring, he yanked open the jammed door of his truck. It clocked him in the chin, and he fell backward, hitting his head on the pavement. The blow knocked him unconscious and gave him a concussion. Such injuries can sometimes trigger PMO—but, strangely, Sharrah didn’t develop the condition until one morning twelve years later. The elongated face and enlarged eyes of his roommate alarmed him so much that he left the house. During his commute to work, however, he saw the same distortions on other drivers. “I was freaking out,” he told me. “I thought I woke up in a demon hell.” (It’s possible that Sharrah’s head injury did not cause his PMO; years after his concussion, he was also exposed to carbon monoxide.)

 

When Sharrah posted about what he was seeing in a support group on Facebook, Catherine Morris, a volunteer for the group and a former teacher at schools for the visually impaired, reached out. She suggested he could be experiencing visual distortions—not a psychotic episode, as he feared. “She saved my life,” Sharrah told me. Morris also introduced him to Duchaine, who realized that Sharrah’s PMO had a unique feature: he saw facial distortions only in person, and not on screens.

 

On Halloween, I met Sharrah in a small room in Dartmouth’s psychology building, Moore Hall, where Duchaine’s team was evaluating his symptoms. A Ph.D. student, Antônio Mello, was repeatedly showing him a Ken doll and asking him to rate the severity of facial distortions he saw, from zero to six. “That’s about a four,” Sharrah said. Next, Mello asked Sharrah to look at a student’s face through lenses of various colors—something that Morris had recommended to reduce the intensity of distortions. Through red lenses, Sharrah rated the distortions a four. Then he closed his eyes, put on green lenses, and opened his eyes again. “Two,” he said. It’s not clear why colors make a difference, but a few other patients have reported the same thing.

 

After Sharrah’s exam, we walked together to a park in the center of town. He lit a cigarette as we walked; we passed a few pedestrians in costumes. “Those girls over there are distorted,” he told me, pointing at a group of young women who were not in costume. “It’s always Halloween.” He asked me if I had ever seen “They Live,” a science-fiction film from 1988 in which a man finds a special pair of sunglasses. They reveal everyone around him to have deformed, zombie-like faces. “My whole scenario reminds me of the reverse,” he said. He held up a pair of green glasses that Morris made for him, which he sometimes wears to alleviate distortions.

 

If Sharrah hadn’t mentioned his condition, I never would have guessed that he suffers from it. I could sense how profoundly it distorts his life, however. In his most recent job, he worked in a restaurant kitchen, cooking comfort food like fried catfish and meatloaf; he told me that he liked being away from the customers, where he didn’t have to see facial distortions. For several years, he had a girlfriend whom he met online, but they never met in person. “She was worried about us meeting face to face,” he said. During our conversation, I started to feel self-conscious that my presence might burden him with an unpleasant sight. Before we parted, we took a selfie together. He looked at us on the screen of my phone and nodded in affirmation. “You look normal there,” he said.

 

Recently, Werbeloff got the results of his brain imaging. The protective sheath around neurons in his splenium appeared to have deteriorated. Duchaine told him that he was confident the damage “is the cause of your hemi-PMO (or at least part of the story).” Werbeloff was unsettled to learn the news, but he also found it comforting. “I was quite relieved to have a reason,” he told me.

 

At the Met, Werbeloff and I went to see “Hidden Faces,” an exhibition of Renaissance-era portraits. We stopped at a pair of fifteenth-century portraits by Jacometto Veneziano. One was said to show a nun, whose face was mostly visible under a white headdress; the other, a man in a black hat, in profile. In a hushed voice, Werbeloff told me that the woman’s face was starting to change, but the man’s was not.

 

Next, we looked at an oil painting by Ridolfo Ghirlandaio which showed a beige mask with blushed cheeks framed by mystical creatures. It had the realistic features of a face, but with empty black holes for eyes. A Latin inscription read, “To each his own mask.”

 

“Will this one distort?” I asked.

 

“I have no idea,” Werbeloff said, and paused. “It is distorting.”

 

Then we saw a portrait of a woman who stared straight out at the viewer, by Lavinia Fontana. “Oh, she’s a bad one,” he said.

 

English is replete with expressions such as “to lose face,” “say it to my face,” and “two-faced,” which emphasize that faces are a way to access our most authentic selves. To “deface” something is to destroy it. But PMO is a painful reminder that when we look at someone else, their appearance is partly constructed in our minds. I asked Werbeloff whether he was still able to enjoy art museums. “It’s like looking at a train crash,” he said. “You can’t look away. It’s bad, but it’s fascinating.”

 

One of Werbeloff’s former partners wore glasses, which lessened the facial distortions. “Of course, the glasses have to come off eventually,” he told me, wryly. His current partner wears a gold nose stud, which helps to disrupt the distortions. “That nose ring is the most amazing thing,” he said. “I find him to be the most beautiful creature.” I was moved by the reverence in his voice.

 

At the end of our time together, Werbeloff and I looked at each other face to face. He was staying behind at the museum to explore the contemporary-art wings, where there happen to be fewer portraits. We spent a few minutes bantering about philosophy and his plans for the evening, and I felt like I was hanging out with a friend. Then his eyes darted away from me, and back again. I sensed that he was trying to reset the distortions on my face—to see me, just for a moment, as I was. ♦

 

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