The Washington PostDemocracy Dies in Darkness

She made a career out of studying the brain. Then hers veered off course.

Neuroscientist Barbara Lipska has studied mental illness for much of her career. In 2015 she was diagnosed with brain cancer. After an experimental treatment, she began to exhibit bizarre behavior that alarmed loved ones and colleagues. Lipska was not aware of the change at the time. She recently published a book about her experience. (Astrid Riecken/For The Washington Post)

The walls inside Barbara Lipska’s office at the National Institute of Mental Health are plastered with race plaques: first-, second-, third-place awards. Lipska, 67, only started running in her 40s, but because she does nothing halfway, in short order she was doing marathons and triathlons, while commuting to work in Bethesda, Md., on her bike, a total of 40 miles a day. A decisive, fast-moving woman — capable, her boss tells me, of accomplishing the workload of three or four people — Lipska directs NIMH’s Human Brain Collection Core. “We might get a brain today,” she says hopefully on a Wednesday in late February.

When people die after suffering from schizophrenia, bipolar disorder, depression, opioid abuse or some other mental disorder, Lipska’s team works with local medical examiners to collect their brains. There is a sense of reverence when one comes in. Each brain is a clue in an effort to understand mental illness, which is the subject Lipska has spent her life studying — including, in a roundabout and unexpected way, when her own mind went dramatically wrong three years ago.

It was January 2015 when Lipska reached out to turn on her work computer and something peculiar happened: Her right hand disappeared into a kind of black hole. When she moved her hand to the left, it reappeared within her field of vision. She immediately feared something might be awry in her brain.

She drove to her primary doctor — even with the loss of vision, it would not have occurred to her to ask her husband to come fetch her — but it was only after an MRI exam the next morning that she knew the situation was dire. She had three melanoma tumors in her brain, one bleeding and quite dangerous, necessitating emergency surgery. Doctors went into her skull to remove the bleeding tumor from where it sat in her primary visual cortex. Metastatic melanoma is an aggressive and fast-moving disease; Lipska was expected to live less than a year.

Lipska and her family members — her daughter is a physician; her son, a neuroscientist; her husband, a mathematician and computer software engineer; her sister, a physicist working in radiation oncology — researched every possible treatment avenue. She was soon enrolled in a clinical trial at Georgetown’s Lombardi Comprehensive Cancer Center, where she received an experimental combination of two immunotherapy drugs designed to muster the body’s own defenses to attack cancer cells.

Shortly after the second infusion of drugs, a profound change overtook her brain, affecting her behavior. It would last about two months; even after the period was over, she didn’t know the full extent of what she had done until her family began to reveal it to her in bits and pieces, leaving her horrified.

Did she really accuse the exterminator of trying to poison her? Did she get lost while out walking a mile from her home in Annandale, Va., and decide she didn’t care if neighbors saw her pee herself as she tried to find her way home? Did she walk past a car that had been hit by a tree, and then circle back and point out the felled car again, because she’d forgotten seeing it half an hour before? Moments from that period emerged as if from a mist, leaving Lipska to conclude that for two months in the summer of 2015, she was in some sense not Barbara Lipska at all, but somebody else.

It was then that Lipska set about studying her own brain with scholarly zeal, mapping her mental deficits up to the parts of her brain affected by the cancer. She saw parallels with bipolar disorder, dementia and the disease she’d studied much of her life, schizophrenia. Eventually, she would reconstruct those lost months in a book — “The Neuroscientist Who Lost Her Mind,” co-written with Elaine McArdle — that came out in April. Lipska told me that she needed family and friends to know “what it is like when you are not there.”

She’s made a pretty good recovery, as far as the doctors tell her, but there are still lingering problems in her brain, including occasional difficulty with her mental map. At NIMH, I follow her down to lunch in the cafeteria. Outside the elevator, she looks around for a bit, confused about which direction to head. Left or right? She asks someone. We turn right.

Over lunch, we talk about what it feels like to be forever asking which way to go. Within a few months, Lipska had transitioned from being an expert trail runner to clutching her son’s arm on the sidewalk. The thing she’s realized, Lipska tells me, is that we don’t know the things we think we know. The sense of control, the careful planning for the future — it’s all a mirage. There is such a thin line between life and death, between sanity and insanity. “What separates us? What?” she says. “Just luck.”

The long-term memories are fine. Lipska remembers her childhood in Poland. She remembers picking mushrooms, her father buying a car. She grew up and got her master's, and met a man named Witold, a deeply talented computer scientist, and they married and had two children.

Kasia and Witek were still young when Witold came home one day and told Lipska he’d been diagnosed with melanoma. It was 1980. He was barely in his 30s. Eventually, the cancer spread to his brain, just as it would decades later for Lipska. The stress of his illness was harrowing, and they had no community support; at that time in Poland, cancer carried such a stigma of weakness that they felt unable to tell anyone. Their marriage had all but ended well before he died in 1985. Lipska still carries guilt over the marriage’s disintegration. On a walk one day, she told me that her grandmother, too, had died of melanoma, and spoke about the cruelty of a disease that had taken the people she loved, and then came for her.

Lipska spent the first part of her career researching drugs used to treat schizophrenia, earning $20 a month and dreaming of life outside communist Poland. A few years after Witold’s death, while at a conference in West Germany, she met a top psychiatrist at NIMH who offered her a job. By then, she was with her current husband, Mirek Gorski — and soon they and the children settled in the United States.

At NIMH, Lipska studied rats, injecting neurotoxins into their newborn brains and watching as they grew older and developed a kind of rat version of schizophrenia. With the connections between hippocampus and prefrontal cortex disrupted, the rats had difficulty finding their way around mazes that healthy rats could navigate with ease. Turn left? Or turn right?

Lipska held her first intact human brain five years ago when she became the director of the Human Brain Collection Core. She sliced it down the middle to divide its hemispheres and felt for the first time the heft of the mysterious organ she’d spent her life trying to understand. For Lipska, mental illness had always been a little abstract, even though it was her profession. As a neuroscientist and molecular biologist, she was used to examining the smallest components of human and animal brains. But she vividly remembers her first contact with schizophrenia patients, when she was in her 20s and helping collect blood samples in Poland. Nothing in her scholarly pursuits could have prepared her for how frightening it was to encounter the lived experience of mental illness. Some patients shouted in anger; others were gripped by fear. She thought, “How could one lose his mind like that?” Their eyes were vacant, she thought, as if they were not there.

Lipska's illness has been wrenching for her husband. Mirek Gorski is a soft-spoken man with a patient smile who is utterly devoted to Lipska. "She's his sun," their son-in-law, journalist Jake Halpern, told me. By the time Lipska was diagnosed with melanoma in the brain, Gorski had already seen her through two other bouts with cancer. During those dark months in the summer of 2015, he was often alone with her, struggling to figure out what to do. He could not persuade her to listen to him, to let him drive; he could not convince her that the world wasn't out to get her. She'd always been the dominant force in their family, and now, unaware that her grip on reality had shifted, she insisted on carrying on as usual.

What neither of them knew then was that the tumors, along with the radiation and immunotherapy drugs that were causing the tumors to shed dead cells, were inflaming the tissues of Lipska’s brain, making them swell. That disrupted the operation of her frontal lobe, which controls the higher cognitive functions.

There were times, when her brain was at the nadir of functioning, that Lipska could barely make dinner. She insisted on it anyway, because she’d always been proud of her cooking. But in the summer of 2015, nothing made any sense: She couldn’t recall the proper proportions, and she was convinced her family was hiding the pots and cooking spoons. She served strange meals in rages, and she and her husband sat and ate, no matter how it tasted. Gorski told me that he missed her terribly, even as she sat across from him.

She became impatient and angry, yelling at him and her beloved grandson. She became suspicious of a physical therapist, walking out in the middle of a visit. She found it difficult to understand newspaper articles. She lost her empathy, bringing her husband and daughter to tears with her coldness and anger. While driving, she nearly hit other cars on the highway, drifting past her lane; she drove over a high curb to get out of a parking lot because she couldn’t figure out how to fit through the exit. (She blamed whoever constructed such a lousy exit.) She noticed her family members talking about her but could not grasp that they were concerned; instead, it fed her paranoia. She was certain she was fine. It was everyone else who was acting crazy.

She also had a recurring fear of being poisoned. After her final immunotherapy infusion, she threw up her pizza and thought she saw bits of plastic floating in the toilet. She woke Gorski. “The pizza!” she said. “It’s poison! It was made of plastic!” Once, when their pest control company made a scheduled inspection visit to the house, Lipska accused the inspector of trying to poison her house with chemicals, and fired him.

Lipska’s daughter, Kasia, worried and worried but could not persuade her mother to consult a doctor about her behavior. She feared she was losing her mother before she lost her. “She seemed to be suspicious of anything in the world that didn’t match her internal logic,” Gorski told me. Lipska says that even now, with the benefit of hindsight, she can’t see her behavior the way others saw it. “I only remember that I was angry that he was acting stupidly all the time,” she says of her husband.

It was sometimes difficult for her family to grasp how profoundly her mind had gone wrong. It’s not as if Lipska’s personality changed wholly; rather, she became a caricature of herself. Always strong-willed and opinionated, she became more so.

Sometimes, the old Lipska still seemed to be there. Bad days would be followed by good days, Gorski told me. So maybe she was okay. She kept running and biking and swimming, after all. This was a woman who — two months after brain surgery followed by several rounds of radiation — flew to Hawaii with her family, where she biked more than 200 miles through lava mountains.

“Barbara was saying, ‘I’m fine, I know I’m fine,’ ” Halpern recalls. “When she makes up her mind, there’s a ferocity of will there that is hard to kind of fathom. And she’s a neuroscientist. This is what she knows. That’s a very difficult combination to contest.”

While Lipska’s behavior at home grew increasingly strange, she was still somehow working, managing her staff of more than 15, sending her boss long emails meant to reassure her that she was on top of things. Her colleagues called her Ironwoman. Her boss, Maryland Pao, clinical director at NIMH and a psychiatrist, told me she monitored Lipska and put in place backup systems but for the most part could not tell how much she was struggling. One staffer told me Lipska was really hard on her that summer, and it was only months later, when Lipska held a staff meeting and apologized to everyone, that the staffer understood the physiological underpinnings of her boss’s behavior.

In June, about a month after Lipska began acting strangely, Kasia finally prevailed upon her mother to permit her to contact a doctor and say something wasn’t right. Lipska was scheduled for an emergency MRI. It revealed 15 new tumors and extensive swelling in her brain, which explained Lipska’s bizarre behavior. In her book, she writes that her doctor, Michael B. Atkins, the deputy director of Georgetown’s Lombardi center, at first told her the immunotherapy had failed. She was put on more steroids to reduce the inflammation, sent for radiation to attack the tumors, and prescribed targeted drug therapy, a last-ditch effort to stop the cancer by inhibiting the growth of a mutated gene involved in melanoma.

Even after doctors found and treated the swelling, Lipska’s behavior didn’t go back to normal right away. She still had trouble driving, still had trouble with basic tasks like looking up a phone number in her cellphone contacts, still subjected her family to rages. And then slowly, the old Barbara Lipska began to return, unaware of what had happened in her absence.

Elaine McArdle, Lipska's co-author, told me a big part of her job was figuring out precisely what occurred during the summer of 2015. Faced with an unreliable narrator, she interviewed people Lipska had interacted with during her worst time: family, colleagues, the physical therapist Lipska walked out on. Gorski pulled out his diary, written in Polish, and McArdle sat with them and tried to coax details from Lipska. The memories, when they returned, had a strange quality, Lipska told me, "like waking from a dream."

I watched this happen. After talking to some of Lipska’s colleagues at NIMH, I mentioned to her a story I’d heard second- or thirdhand, about a moment when some of them noticed something was not quite right with her cognition. At first, she only vaguely remembered it, but throughout the day she kept going over the incident in her mind and interviewing members of her staff to see who remembered it. I thought it would be unsettling or embarrassing to ask such questions about oneself, but Lipska seemed energized by the mystery. She was investigating herself, both the researcher and the rat — determined, I think, to assert some scientific rationality over what had been an entirely irrational chapter in her life.

By afternoon she could recall this: There was a budget meeting, and she was holding a sheet of paper, but she couldn’t understand what she was looking at. At last, one of her colleagues leaned over and turned the paper right-side up.

The cancer and its treatments kept dealing blows. In 2016, doctors found and treated another tumor. Around the same time, she experienced a side effect of a radiation technique called the CyberKnife. The tissue around one of her tumor sites underwent necrosis — a dying-off — causing her to go blind in one eye. Yet she still went hiking with her sister in New Hampshire’s White Mountains as the eyesight was disappearing, using trekking poles and falling an awful lot, and then she came home and taught herself how to drive with one eye, and how to bike with the benefit of a mirror Gorski installed on her bike, and how to ski, downgrading from double black diamond. In 2017, more necrosis caused a seizure in her leg, so Lipska found a strong guide willing to swim beside her while she competed in a swimming race, just in case she had a seizure in the water.

Lipska’s doctors eventually came to realize what she had believed all along: The immunotherapy had, in fact, not failed. Throughout her illness, Lipska had immersed herself in research on the treatment, and lying in a hospital bed after the emergency MRI that found 15 new tumors, she told the medical staff about research papers showing that patients undergoing immunotherapy sometimes appeared worse before they got better. Atkins told me that this was probably the case; it seems Lipska’s body mounted an unusually aggressive immune response, contributing to a great degree of swelling. The 15 tumors that looked like they’d arrived mid-treatment may in fact have been preexisting but previously undetected tumors, which looked bigger on that emergency scan because her body was in the process of fighting them off.

“Some patients have such a brisk reaction that it makes tumors look bigger,” Atkins says. To this day, neither Lipska nor her doctor can say how much she owes her life to the immunotherapy, and how much to the targeted drug therapy — a fact that irks Lipska, who seeks precision.

As I got to know Lipska, we talked about running a lot, about the invariable torture of the first few miles, and about what makes people keep going. When I visited her and Gorski, I was training for my first half-marathon. We compared times, and I learned that before the melanoma, she'd been far faster than I could ever hope to be. I asked her for tips, and she taught me some stretches. But what I really wanted to learn from her was something I wasn't sure she could teach me, which was what made her keep going — through the exhaustion of those endless marathons and triathlons and now, in the face of so much loss. Or to put it another way, what precisely her mind was made of.

One night at her home, over a dinner she had cooked for me and her husband, Lipska told me she tests herself sometimes. Once, in the throes of her impairment, she could not calculate a 20 percent tip on a $70 bill, so now she tries to do calculations in her head, tries to recall dates, tries to make sure she’s not disappearing again.

We finished eating and moved to the couch. Lipska and Gorski sat close, and he gave her a smile, and they talked about what’s worse: to be in love with someone who is in acute physical pain and be unable to fix it, or to be with someone who has lost her empathy, a stranger in a familiar body. She talked about the schizophrenic patients she’d once collected blood from, and how the looks in their eyes frightened her, and how she’d learned that during the summer of 2015 she’d looked at the man she loved like that. “Mirek told me I was looking through him, past him, but not at him. And I was absent, like —” She turned to him. “What was the word you were using? Not there.”

She paused to think. Gorski put his arm around her, and she stroked his side. “But I’m here. I’m back.” She barked her signature loud laugh, puncturing the dark mood. “Nothing is permanent,” she said.

Two days later, Lipska took me with her on a trip to the dermatologist to have her skin checked. The doctor found no melanomas, just some precancerous spots that could turn into squamous cell carcinoma if untreated. He froze them off, leaving her with little brown marks all over her face. We got back in the car and searched for a cafe, and this time her maps app was mistaken and tried to lead her astray, except her mental map was working perfectly, and she knew precisely where the cafe was. As we drove, she told me a story about the previous summer, when she and Gorski had gone back to Poland.

They were on a train, and Gorski began telling Lipska that she was acting strangely again. Something was not right, he said. They needed to call Kasia. I am fine, Lipska told him, but he didn’t believe her. She began to doubt herself. Was he right? She didn’t feel like she was losing it, but then again, she hadn’t thought she was losing it before.

Off the train, on the sidewalk, she burst into sobs — huge, wracking sobs from a woman whose husband hadn’t seen her cry once over having melanoma in her brain. Her credibility, she realized, was shot. Even if she was sane, no one would believe her. After all, she was the neuroscientist who’d lost her mind.

It was only later, lying in their hotel room after the argument, that she reached out to Gorski and found him hot. He had a high fever — a symptom of Lyme disease, they’d discover, after they returned to the United States and saw their family doctor. In retrospect, she says, Gorski’s suspicion was probably the result of his being delirious.

Halpern told me later that he’d heard that story, too. He said he had never heard his mother-in-law sound as terrified talking about her cancer as she did when discussing the prospect of losing her mind again.

In her book, Lipska mentions having lost sight in one eye and having leg seizures. But the arc of the illness didn't end there. Just before I visited her in the late winter, she told me that doctors had found another tumor. She traveled to Boston to have it treated. I asked Atkins about it, and he said he still thought her prognosis was good. But the news gnawed at Lipska during my visit, and she and Gorski talked cautiously about the future. Maybe they could be assured of something not too terrible happening for the next few weeks, they said. That was as far as they would go.

She’s had to revise her athletic expectations; before, her plan for old age was a marathon every five years and triathlons in between. Now, her balance and strength and speed are diminished, but she tells me that if trails give her problems, she runs in the street. Sometimes she falls and shreds her arms and knees and declares herself finished, and then something makes her go out and do it again.

One day after I returned home to New York from visiting her, she emailed me that she ran six miles and I thought: I have no business going easy on myself. My hips hurt, and I did the stretches she taught me. When I email her in July, she tells me that her latest scan looked good, and that she’s still running and biking and swimming, trying to bring back the strength she’s lost.

There is still so much that’s unknown about the brain. What is it that makes one person cry over this strange, harrowing, incredible life — and another laugh? What makes some of us give up while others keep running when they bleed? And what causes the brain to veer off course? It’s not usually something so explicable as tumors and immunotherapy. A teenager develops obsessive-compulsive disorder, and a new mother is racked with anxiety, and a man in his 40s decides he never wants to leave his bed again, and we don’t know why — not really, not enough to fix it every time.

The line between sanity and insanity may be perilously thin, but Barbara Lipska’s decision about how to respond to her own experience with insanity was unambiguous: She was determined to understand what had happened to her. The brain that had failed her would save her. As she calmly and clinically retraced for me the damage done to her brain, I couldn’t help but be in awe of its resilience.

Lipska thinks sometimes of her elderly aunt in Poland, who was recently brought to the same psychiatric institute in Warsaw where Lipska used to work. Her aunt was agitated and confused, having suffered from worsening Alzheimer's for years. "That's old age repeating what happened to me," she says. "If we knew more about our brains, maybe it would be preventable, but we know so little that it's heartbreaking." Lipska notes the irony that she'll only get to experience Alzheimer's "if I live long enough." In the meantime, she keeps running.

Libby Copeland is a former staff writer for The Washington Post. She lives in New York and is at work on a book about at-home DNA testing and the American family.

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