As a journalist at the New York Post, Susannah Cahalan honed her interviewing and research skills to a scalpel's edge.
But she never suspected she'd have to use those skills to perform an autopsy on her own history. For around a month, while a disease called anti-NMDA-receptor autoimmune encephalitis raged in her brain, Cahalan wasn't present in her own life. She has no memories of entire weeks spent in the hospital while doctors scrambled to solve the medical mystery she posed.
Cahalan tells the story of her illness in "Brain on Fire: My Month of Madness," her 2012 autobiography. She spoke about that book, and her new book "The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness," during Westminster College's 2020 Hancock Symposium.
Cahalan still remembers the early days of her illness, when at age 24 she began experiencing mood swings, paranoia, numbness on one side of her body and sensory overload. At first, she thought it had to do with her job - as a NYP reporter, she a day could find her investigating a weird smell on the subway or going undercover as a prostitute seeking illegal butt injections.
"I think in many ways it took me longer to realize that something was going on internally because my external life was so exciting, so new," Cahalan said.
One doctor thought she might have mononucleosis; another falsely believed her to be an alcoholic experiencing alcohol withdrawal symptoms. Then, while sitting on the couch with her boyfriend, Cahalan had a seizure.
Perspectives
"This is a moment when the self starts to disappear," she said. "What follows for a period of time in this talk is a blank space where the 'I' narrative is. What I have to do from this moment on is tell you about what happened to me through the eyes of others."
Cahalan is deeply interested in storytelling and how perspective shapes a narrative. Ask two eyewitnesses to describe a single crime, and a journalist will hear at least two different versions of the story. Usually, that story isn't the journalist's own life.
To write "Brain on Fire," Cahalan interviewed her boyfriend (now husband), parents, friends, colleagues and doctors. She also relied on medical records and camera footage from her hospital stay - Cahalan was placed on the epilepsy floor of New York University's Medical Center, which is under video surveillance to capture seizures as they occur.
Cahalan played an audio clip of herself interviewing her boyfriend about the first seizure.
"He is still grappling with experiencing that whereas I don't have memory so I don't have pain associated with it," she said. "So I'm interviewing him about a time I don't remember, about me, but that he's mostly emotionally affected by. There was this kind of competing interest between my journalistic impulse -when my narrative gets really bad I'm excited because it's better story telling, but I have to deal with the fallout of my loved ones who actually lived through it."
Initially misdiagnosed with bipolar disorder, Cahalan continued to slide into psychosis and had more seizures. She moved back in with her mother (her parents are divorced and took turns caring for her throughout her illness).
Interviewing her parents after her recovery, Cahalan heard competing narratives.
"My father was overly emotional, if you can imagine; he exaggerated a lot he'd say things like I was in hospital for much longer time than I was," Cahalan said. "Whereas my mother had a completely different approach. Every time I interviewed her I actually had to bring my medical records with me. She would deny how bad it was. Her narrative approach was to recreate it into something that wasn't so bad."
Another competing narrative exists in her own head - she remembers hallucinating her father was beating his wife, and later seeing herself on TV, neither of which actually happened.
"It's a strange thing to remember that so vividly," Cahalan said.
Her mother brought Cahalan to the hospital. Cahalan's last memory until partway through her successful treatment was demanding coffee in the hospital lobby. Video surveillance recorded Cahalan's descent: she spoke to people who weren't there, attempted to escape and even struck a nurse.
Ultimately, a brilliant neurologist named Dr. Souhel Najjar managed to diagnose Cahalan after reading an article about anti-NMDA-receptor autoimmune encephalitis, a disease only identified two years earlier. It's sometimes triggered by tumors in the ovaries, and sometimes strikes out of the blue; regardless, it's more common in women. The disease causes the body's autoimmune system to create antibodies that attack important receptors in the brain. This causes inflammation and swelling in the brain, and also disrupts the brain's ability to communicate with itself.
"I became the 217th person to be diagnosed with anti-NMDA Receptor Encephalitis," Cahalan said.
The treatment was intense, involving steroids, filtering Cahalan's plasma and infusing her blood with antibodies from donors. When Cahalan left the hospital, she couldn't read or write and could only walk with assistance. Family members feared she might never return to her old self. But slowly, Cahalan started regaining self-awareness.
"As I started to recover, my narrative started to diverge from other peoples' narratives," Cahalan said.
She remembers attending a wedding; before her illness, the bride had asked Cahalan to be her bridesmaid, but rescinded the request after seeing how off Cahalan still seemed. Cahalan decided to make the most of it by purchasing a bright-pink dress and dancing the night away.
"It's a very positive memory, in my mind; it's the beginning of my reawakening in a lot of ways," she said. "But I went back to this time, through the eyes of others and I found out that everyone at this wedding felt bad for me. I was very altered, I looked different, I acted different. It was such a strange experience, having to put together these various narratives. I felt so alive and so much better, but that wasn't how I was presenting."
About seven months following Cahalan's diagnosis, she made a tentative return to her job at NYP. After Cahalan covered a few easy stories, a colleague suggested she write her own story.
"It was the beginning of finding the vision to shape rest of my career," Cahalan said.
'The Great Pretender'
That article led to appearances on talk shows, a book deal and even a movie. Her story saved lives, leading to the diagnosis of multiple other people with anti-NMDA Receptor Encephalitis after doctors or family members heard Cahalan's story. Some patients had spent years in mental institutions, misdiagnosed with mental illness. As her reputation grew, Cahalan started hearing from other people, too: people who were genuinely mentally ill and felt abused or marginalized by the mental health care system.
"At first I had nothing to say because I didn't know about psychiatry," she said. "I had no idea how inept we are in the care of people who are very very sick."
For her 2019 book, "The Great Pretender," Cahalan took a close look at one narrative that's shaped modern psychiatric care. "On Being Sane in Insane Places" stemmed from an experiment by psychologist David Rosenhan, in which eight people without mental illness faked a minor symptom in order to get admitted into psychiatric institutions. Each participant was misdiagnosed with a mental illness, Rosenhan claimed.
Since the publication of "On Being Sane in Insane Places" in 1973, the face of psychiatric care has changed dramatically, likely partially due to the study's claims. Mental hospitals and institutions closed, and today many mentally ill people are incarcerated or left homeless rather than receiving treatment.
"All of that was shaped by a study I found to be extremely problematic," Cahalan said. "After six years of digging into research I found serious ethical issues with the study - I believe a good deal of it was made up."
Her book concludes Rosenhan excluded one participant whose experience of compassionate care didn't fit the narrative he was trying to build - of psychiatric institutions as uncaring and incompetent cases. Other participants may have have existed in the first place.
"It was a hard narrative to write, writing about a famous study and the complicated unreliable narrative behind it," Cahalan said.
But her own experience as the unreliable narrator of her own story helped prepare her to write this book, she said.
"Reclaiming my lost time and making it my own gave me the confidence to move forward," Cahalan added. "It pushed me to ask questions and dig deeper."
Cahalan's full talk may be viewed at bit.ly/2ZIdndS. Find her new book here.