| Libby Copeland |
THE walls inside Barbara Lipska’s office at the National Institute of Mental Health (NIMH) 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, Maryland, 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 said 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 tumours in her brain, one bleeding and quite dangerous, necessitating emergency surgery. Doctors went into her skull to remove the bleeding tumour 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 defences to attack cancer cells.
Shortly after the second infusion of drugs, a profound change overtook her brain, affecting her behaviour. 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, Virginia, and decide she didn’t care if neighbours 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 realised, Lipska told 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 said. “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 USD20 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 (US).
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 tumours, along with the radiation and immunotherapy drugs that were causing the tumours 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!”
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 recalled. “When she makes up her mind, there’s 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 behaviour 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 Iron Woman. 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.
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 tumours and extensive swelling in her brain, which explained Lipska’s bizarre behaviour.
Even after doctors found and treated the swelling, Lipska’s behaviour 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 third-hand, 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 energised 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 tumour. Around the same time, she experienced a side effect of a radiation technique called the CyberKnife. The tissue around one of her tumour 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 realise 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 tumours, 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 tumours that looked like they’d arrived mid-treatment may in fact have been pre-existing but previously undetected tumours, 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 tumours look bigger,” Atkins said. To this day, neither Lipska nor her doctor can say how much she owes her life to the immunotherapy, and how much to the targetted drug therapy – a fact that irks Lipska, who seeks precision.
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 tumours 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 noted the irony that she’ll only get to experience Alzheimer’s “if I live long enough.” In the meantime, she keeps running. – Text and Photos by The Washington Post