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A Neuroscientist Who Lost Her Mind Says It Can Happen To Anyone

Discussion in 'Neurology' started by Mahmoud Abudeif, Apr 30, 2021.

  1. Mahmoud Abudeif

    Mahmoud Abudeif Golden Member

    Mar 5, 2019
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    You can be an expert on brains and spend 30 years studying mental disorders, and it still will not prepare you for your own madness. Expertise won’t explain why you no longer recognize your house or car, or why you’ve gone for a morning jog with a plastic bag full of purple henna on your head and have no idea where you are, even though this is your own neighborhood, your own streets, and these are the trees and flowers you pass every day.


    If anyone should have been able to recognize the changes in her own behavior and connect them to transformations in her brain, it was Barbara Lipska. As a neuroscientist and director of the Human Brain Collection Core at the National Institute of Mental Health in Bethesda, Maryland, Lipska has poked, prodded, examined, sliced, diced, and analyzed countless brains, trying to find the distinctions between sickness and health.

    Yet when she lost her own mind in 2015, Lipska didn’t know that things were going awry. Neither did her family of doctors. “We were completely oblivious to it,” she says.

    Now, Lipska has to check sometimes to make sure she’s thinking clearly. “I’m terrified. I won’t see it when it happens. I watch myself. I ask questions of my family,” she says. “Am I sane? Am I logical? Am I making sense? How would I know? It’s a terrifying experience.”

    Losing it

    You may never lose your mind, but there’s a good chance that you will have, or already have had, a mental-health issue at some point in your life. Anxiety, depression, attention deficit disorder, post-traumatic stress, psychosis, schizophrenia, are all common.

    In the US alone, one in every five adults, or more than 43 million people, experience mental illness in any given year, according to the National Alliance on Mental Illness. Worldwide, one in every four individuals will suffer from a mental health condition in their lives, according to an Oct. 9 report in The Lancet medical journal by 28 global experts.

    Yet few resources are devoted to this critical aspect of health, and the result is a global crisis—a “monumental loss in human capabilities” that will cost $16 trillion by 2030, according to the report. Because mental health services are “routinely worse than the quality of those for physical health…all countries can be thought of as developing countries” in this regard, write the global experts in The Lancet.

    Lipska believes the world can get better at treating mental illness. But as she explains in her book The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, published in April 2018, part of the solution lies in ceasing to distinguish between mental and physical problems.

    The neuroscientist wants the world to understand that mental illness is an organ malfunction, quite common and life threatening. In her book, she argues that we still judge brain malfunctions as if they are character deficits, reflections on a person’s value rather than the result of physical processes gone awry.

    Speaking with Lipska on Oct. 12, I asked her whether we will ever know the brain well enough to truly understand it. Can the mind ever comprehend the mind? It’s like the eye trying to see itself, after all.

    “Yes,” Lipska replies. “It won’t happen in my lifetime but we will someday understand the brain and then we’ll treat mental illness like the thing it is—physical illness that manifests in an extremely complex organ.”

    “No one is guilty because they’re mentally ill. It’s not their fault.”
    On this, Lipska is intent. From her perspective, “there is nothing metaphysical” about mental illness. The brain is not a simple organ like the heart, which is basically a pump. It’s an organ with billions of neurons and billions of connections, in constant transformation, changing with every interaction and experience, absorbing culture, manifesting in our behavior, and running our personal shows.

    Sometimes the show is no good, and it loses its director altogether. “But no one is guilty because they’re mentally ill,” Lipska says. “It’s not their fault. It’s an illness like any other, we just don’t understand it.”

    Lipska’s personal experience transformed the way she thinks about mental health and mental illness, as she writes in her book. For most of her adult life, she was an energetic, determined, ambitious researcher, devoted to her work, family, and running marathons. But after she was diagnosed with brain cancer in 2015 and began taking medications to deal with the illness, she became someone else—and not someone she liked. “I was completely disinhibited.”

    She was angry, cranky, demanding, insistent, unreasonable, intolerant, and sometimes a danger to herself and others. She made bad decisions. One day, she tried to walk home alone from a supermarket. She got lost, urinating on herself, eventually hitching a ride home to a house she couldn’t recognize or point out to the driver. She was mean to her beloved grandkids, and rude to medical personnel who tried to help her. She saw menace in situations that were non-threatening, and missed the real dangers of insisting on doing the things she’d always done, like driving.

    After Lipska was diagnosed with brain cancer in 2015, she became someone else—and not someone she liked.
    She can’t say precisely what caused her behavioral changes, whether it was cancer or medications or stress of illness or all three combined. But she can point to the region in the brain that was affected. “In my case, there was a lot of pressure on the frontal cortex and this regulates our behavior,” the neuroscientist says. When her frontal cortex was malfunctioning, she could no longer control herself—all the rules about where and when to do certain things, and how to communicate, became irrelevant to her. They were inaccessible, for all practical purposes nonexistent.

    The experience has changed her work. After a lifetime of studying brains, looking for evidence of disease in the mysterious organ, she’s more sensitive—more aware of how people with mental illness suffer, and more tolerant of the struggle involved, both for those who are sick and those who surround them.

    “Of course, I knew all this before,” she explains. But knowing in theory isn’t the same as experiencing the effects herself. So when she recovered from cancer and the pressure was off her brain, literally, she applied her scientific knowledge to the terrifying personal experience and wrote her book. In one passage, she writes:

    Despite all my years of studying brain disorders, for the first time in my life I realize how profoundly unsettling it is to have a brain that does not function. And the more I remember from the days and weeks of my madness, the more frightened I become that I will lose my mind again. Perhaps madness is not the proper term to describe my condition at the time. After all, it is not an official diagnosis, but it is often used informally to mean instability, insanity, and and angry and disorganized behavior. So instead I think of myself as having experienced a number of symptoms connected with a range of mental disorders. In other words, I had a brush with insanity. And I have come back.

    The book is also an effort to help alleviate the stigma around mental illness. “If people like me come out with this problem and acknowledge that despite their will, they lose it, things can change,” Lipska says. She went out on a limb, exposing the most unpleasant aspects of her otherwise highly accomplished and admirable existence so that society might realize everyone, anyone, can lose their mind, forever or for a time.

    “If people like me come out with this problem and acknowledge that despite their will, they lose it, things can change.”
    Lipska was surprised to discover after the book was released just how many people needed to hear what she had to say. She has been flooded with appreciative messages from people who say she inspired them. Still, she’s not sure why her experience is inspiring, because it’s just something that happened to her—she lost her mind for a time. “I didn’t choose this path,” Lipska points out. And it’s something that might happen to her again.

    When I pause to scribble down her response to one of my questions, she breaks the silence: “Am I making sense?” she asks.

    “Yes,” I reply. “You’re making perfect sense.”

    In that moment, it becomes apparent that Lipska isn’t exaggerating about checking herself. She’s still living in the shadow of the alternate reality that she experienced. The neuroscientist can no longer completely trust herself or rely on the brain that made her into a world-renowned researcher. For a time, her mind failed her, and now she is cautious. “I don’t dwell in the negative. There was just a way I behaved in illness. Now I have to be more conscious,” she says.

    Dream fish nightmares

    I wish I could say that I have no idea what Lipska is talking about. But I do. That’s why I read her book.

    One day, my brain broke—or maybe it wasn’t one day. It could have been a cumulative process, the result of a lifetime of use. It could have been bad sushi—there’s a fish called the dream fish that causes 36 hours of hellish hallucinations, which I’d love to pin my own brush with madness on conclusively. But it could have been a million things. And I won’t ever know.

    This, I can tell you. My head hurt. It felt like a hole was drilled through the center of my brain and everything fell through it—past, present, future, fact and fiction, all of my personal stories and those I’d consumed, journalism, movies, TV, books. It all became one nonsensical story that I tried to sort through but could not.

    I searched for meaning everywhere. In license plates, on bumper stickers and street signs.
    I searched for meaning everywhere. In license plates, on bumper stickers and street signs, in receipts I found in trash cans when I walked the dog, in the birds that flew overhead, in the flickering of lights in the neighbor’s house next door, in the pouring rain, in my books which were suddenly all blank, no writing inside when I looked. I saw strange things happen—characters from different points in my life all driving by in a caravan in the forest, for example, all with dogs by their sides.

    I had memories during this period, but they weren’t reliable. Everything was intertwining. You could have told me anything about myself, and I’d have believed it possible. Perhaps I was a criminal. Every client I’d ever had when I worked as a criminal defense attorney might actually have been me. Any story could have been mine and, though I couldn’t remember committing a crime, I felt guilty enough to confess to anything.

    At home, I rearranged all the artwork on the walls after staring at it long and hard. When my husband asked what happened to the images, I told him I was trying to rewrite the story so it would have another ending. And he was patient, explaining that the movie posters and comics didn’t tell our tale. We weren’t vampires in The Lost Boys. We didn’t live in The Cabinet of Dr. Caligari. He wasn’t actually The Punisher. But then, the next day, when the art was all off the walls, he got beyond worried, especially when I told him I would be locked up and that it all had something to do with Donald Trump.

    It sounds kind of funny now. But it was not.

    I saw a doctor. She had no idea what was wrong except that I seemed pale and thin. Next I saw a psychiatrist. He said, “People with as much education as you have don’t just go crazy.” His ignorance incensed me.

    Yet his response resembled the one I got from a nurse when I served in Peace Corps more than a decade before. She laughed when I told her I was going nuts in a tiny, remote village, saying, “You’re the sanest person I’ve ever met.” Later, it turned out I had cerebral malaria and had been walking around with a fever for months, so there really was something wrong with my brain—but she’d been right that I wasn’t insane, per se.

    We assume there’s a certain type of person who loses their mind. In fact, it could happen to anyone.
    Which brings us to Lipska’s point. We assume there’s a certain type of person who loses their mind. In fact, it could happen to anyone, for any number of reasons that we don’t even know yet. And because the brain and its behavioral manifestations are so mysterious, and because we are so ignorant of it, we are afraid and ashamed of its power to destroy us.

    We don’t feel the same type of shame when we catch a cold or break a bone or get diagnosed with cancer. The brain is a different story, however. “You could lose your work. You could be shunned. Saying you have a mental illness is like ‘whoa,'” Lipska notes. But, she says, we won’t find ways to address mental illness unless, and until, we can dispel the secrecy and stigma.

    In my case, a brain MRI showed nothing out of the ordinary. That was something of a relief, but also slightly disappointing. Some physical thing to point to would have explained the experience at least.

    How do I stop my mind from getting all jumbled again? And what made it happen in the first place?
    The worst of it lasted only a few days. After two weeks, I was more or less fine. I spoke to friends. I read again, without confusion. I tackled Infinite Jest with relish, feeling a new kinship with author David Foster Wallace, who could not live with his brain and had committed suicide since the first time I’d wrestled with his daunting text. I returned to me.

    Everything went back to normal, sort of. But nothing will ever be the same again. Like Lipska, I don’t totally trust my brain anymore. It’s obvious to me now, not theoretically but actually, that everything is perception; that reality is delicate. And it seems that we only function because of our brain’s ability to filter and separate experiences and keep everything sorted. But how do I stop my mind from getting all jumbled again? And what made it happen in the first place?

    Who are you?

    Hannah Upp was a Bryn Mawr college student in New York who lost her identity in 2008. She went missing in the city. Security cameras spotted her at gyms and in Apple stores, but when people confronted her to ask if she was the missing woman, she denied it. After three weeks, she was found by a Staten Island ferry captain in the water and taken to a nearby hospital, where she was able to tell medical personnel her name. Upp disappeared from herself. And then she came back.

    Doctors later concluded that she experienced a fugue state. The term “fugue state”—think fugitive—was first used in a 1901 French journal of mental health in an article about a young woman who seemed to transform into other selves for short periods. Under hypnosis, she could describe the actions of the alternate selves, but when conscious she could not recall inhabiting another reality.

    In the field of psychiatry, which is rife with mysteries, fugue states are, perhaps fittingly, totally elusive. They are rare, extreme escapes from the self that last as little as a few hours to years. But they do happen, and they seem to be triggered by common life stressors—financial woes, work problems, relationship difficulties, and the like.

    The mystery writer Agatha Christie was diagnosed with a dissociative fugue in 1926 after her mother’s death and upon discovering her husband had a lover.

    For example, the mystery writer Agatha Christie was diagnosed with a dissociative fugue in 1926 after her mother’s death and upon discovering her husband had a lover. She left a series of confused notes, disappeared for days, ditched her car by a lake, and was found checked in at a spa under another name.

    These dissociative states demonstrate just how delicate “the self” actually is. “In our culture, we have a nice narrative that personality is stable. That is a fiction. When a person enters a fugue and becomes someone else—or isn’t there—it’s an exaggerated version of the way we all are,” Etzel Cardeña, a professor of psychology at Lund University in Sweden, tells the The New Yorker.

    In other words, the self is a fabrication of sorts, a compilation of memories more than an actual entity.

    “In our culture, we have a nice narrative that personality is stable. That is a fiction.”
    We need the experience of self, however tentative or illusory, in order to function. David Spiegel, a professor of psychiatry at Stanford University and an expert on dissociative states, believes it’s impossible to be in the world without an identity, some way to separate ourselves from all the other beings. “It may be sparse, with far less structure or detail to it, but I don’t know if you can be a functioning human without something that passes for a self,” he tells The New Yorker. “You need some kind of orientation for understanding who you are and what you are doing here.”

    Evidence of this is the fact that people who experience sudden dissociative states, breaking from themselves, often unconsciously replace their identities. In February 2013, for example, Michael Boatwright awoke in a Palm Springs, California hospital. He had a US passport and a California identification card, but he spoke only Swedish and insisted his name was Johan Ek. It turns out that he lived in Sweden as a child, and for a time he disappeared from himself, replacing his identity with an alternate conjured from the past. Boatwright was diagnosed with “transient global amnesia in a fugue state.”

    There’s no medication to treat fugue states, and relatively little is known about them. It’s possible that, like other forms of amnesia, they happen due to an imbalance in relationships between parts of the brain, the frontal cortex which inhibits responses, and the limbic system, where memories are stored. According to Spiegel, people with dissociative disorders often have a hyperactive frontal cortex and low activity in the limbic system, particularly the hippocampus, which results in inhibited memory. It seems loss of memory results in a temporary abandonment of self as well.

    Recovery can be sudden and complete, as was the case for a 28-year-old Nigerian medical student who went missing for two days after hallucinating a skeleton in his room. He reappeared at his brother’s home, miles away, days later, with no recollection of what happened in the interim. Researchers posit that his case was brought on by the stress of medical exams, which he had failed previously, and for which he had to borrow money. He had no history of mental illness, took no drugs, didn’t drink alcohol, and there was no evidence of any injury to his brain. He just left himself during an especially stressful time and reappeared again.

    These extreme cases of escape from the self, and return, emphasize both the fragility and resilience of the mind. We rely on it entirely to survive, to formulate a self that seems to belong to us. But it can fail us, for hours or days or years, or for a lifetime. More often than not, we don’t know why. It’s a troubling reminder of just how tenuous our grasp on ourselves can be.

    The false boundary

    I ask Lipska if it’s easier to discuss what happened to her because she knew that cancer and medications could explain why her brain had changed, ultimately leading to her strange and uncontrollable behavior. But she dismisses the idea that the cancer or medication provide her with a unique excuse: “It’s all physical illness.”

    The false distinction between physical and mental illness is fueling the crisis, costing lives and money.
    This is her recurring theme. The false distinction between physical and mental illness is fueling the crisis, costing lives and money. Serious mental illness costs the US $193.2 billion in lost earnings per year, NAMI reports. The World Health Organization says that globally, depression is the third leading cause of illness and disability among adolescents, and that suicide is the third leading cause of death in teenagers between 15 and 19. “We should do more research,” Lipska says. “It needs to be better funded. And mental illness needs to be covered by insurance. There’s a taboo about it and we’re afraid to make a big stink. If we understand it as we understand cancer, we can come up with a mechanism to deal with disorders and a cure.”

    Lipska is far from the only doctor to have experienced mental illness. Back in the 12th century, for example, the medieval physician and philosopher Moses Maimonides (pdf), doctor to the Egyptian sultans, spent a whole year in bed after his brother’s death, utterly depressed and feverish. His writing evidences his understanding of body and mind as one unified whole, to be treated in totality.

    Nine hundred years later, Western medicine is still struggling with this concept. Lipska is impatient with the slow progress, though she deeply believes that at some point, we will be able to see that any mental manifestation can be traced to a change in the brain. She concludes, “We are the brain. There’s nothing besides it. If something is wrong, it’s physical.”


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