The Backstory of “Brain on Fire”: Interview with the author



In the spring of 2009, a young reporter woke up strapped to an NYU hospital bed with an orange bracelet on her wrist that read “flight risk,” and rows of wires attached to her head.

The patient was 24-year-old New York Post writer Susannah Cahalan, and she had no memory of how she’d gotten there.

The doctor’s notes on her chart read “seizures” and then “psychosis and possible seizures” and then just “psychosis,” but her diagnosis was still undetermined after a month of tests, while her health continued to decline.

The odyssey of that month is chronicled in the book “Brain on Fire,” documenting Susannah’s mysterious illness and eventual restoration. But not for the fortunate meeting of neurologist Souhel Najjar, MD, who would conduct one simple test that became the gateway out of the labyrinth of identifying her diagnosis, Susannah might not have made it.

It started with what she thought was a bed bug bite in 2009, when New York City was infested with them. But even after an exterminator assured her she didn’t have them, she began experiencing puzzling physical and emotional symptoms, which were seemingly random. Disorganized and paranoid thoughts accompanied physiological symptoms like extreme vision sensitivity, arm numbness, and loss of appetite.

Sitting at her desk at work one day, she began crying for no reason. Her colleagues were concerned, but a few moments later she was laughing as though nothing had happened.

They were the kind of symptoms that raise the “mental illness” flag, and a friend suggested she might have bipolar disorder. Though temporarily comforted by the prospect of a diagnosis, it seemed too easy an out for what was happening, and the diagnosis didn’t make sense to her family. Doctors did tests when she went for exams but they all came back normal and one doctor even suggested she was simply drinking too much.

Then one night her boyfriend woke up to strange sounds. Susannah sat straight up in bed, blood and foam drooling from her mouth. She was having a seizure.

She was admitted to the hospital but tests continued to come back normal, and in a very short period of time she lost motor and speech control, barely able to read a book. But beyond that she became alarmingly paranoid, convinced at one point that her father was trying to kill her stepmother, and that swarms of press waited outside the hospital to interview her.

Then a spinal tap showed a high white blood cell count, which finally pointed to something — possible inflammation or infection. At this point she had become catatonic. It looked like she was close to lapsing into a coma, or possibly even death. Her chart now read “encephalitis (swelling) of an unknown origin.”

Finally Dr. Souhel Najjar entered the picture. He was assigned to her case and was the first doctor to sit down with her and connect all of her symptoms without compartmentalizing them, putting the whole picture in perspective. He asked Susannah to draw the face of a clock and write in the numbers on it. She drew a circle, and then the numbers 1 through 12. Only she wrote them all squeezed into the right half of the circle, leaving the left side blank.

That simple test was the breakthrough. It indicated inflammation on the right side of her brain. Dr. Najjar then wanted to do a brain biopsy — an operation to take a small piece of her brain. A frightening prospect, but it would give them definitive answers about whether or not her brain was inflamed.

One of the most memorable scenes in the book occurs just before Susannah goes in for the operation. “Remember the strategy,” her father says as she lies on a gurney with her head shaved, moments before being wheeled into the OR. “One step at a time,” Susannah says, remembering their maxim despite her groggy condition. “What is the slope of the line?” He asks encouragingly. “Positive,” she replies.

The brain biopsy confirmed that her brain was indeed inflamed, and she began her first round of treatment — three days of an IV drip of steroids administered every six hours, that would reduce the inflammation.

Anti-NMDA Receptor AutoImmune Encephalitis is a mouthful. That was Susannah’s final diagnosis. Doctors did not know about or have a name for the disease until 2007, and her diagnosis came only two years later, in 2009. To date, there have been only around 20 cases ever documented. The disease actually causes the body’s immune system to attack the brain, but the symptoms look very much like mental illness.

“When you get that close to death, and that close to insanity, you come out a different person,” Susannah said in a recent phone interview. “The focus of my life has changed. Now I’m really interested in spreading awareness about the disease.”

The New York Post held her job for her during the time it took her to recover, and when she returned seven months later nothing had been removed from her desk. “I still wasn’t functioning at the level I am now,” she said. “They were really patient and gave me easy stories like ‘Hottest Bartender in New York City.’ They let me kind of learn again and get comfortable interviewing people. That took a while for me to get back to a place where I felt confident again.”

At a colleague’s suggestion she wrote an article for the Post titled, “My Mysterious Lost Month of Madness,” about her experience, which ran on October 4, 2009. Using her skills as a journalist to piece together information, she interviewed her family and boyfriend, and gathered her medical reports and video footage from the hospital, since she had largely no memory of it. Shortly after the article ran, she was asked to appear on the Today show. A family with a daughter exhibiting the symptoms Susannah described saw her on the show, which led them to ask if that was what could be happening to their daughter. It turned out it was.

There was so much more information that could not fit into a limited-word-count story, that Susannah decided to expand it into a book. “I first hand-wrote everything I remembered,” she said. “I got this huge diary and just filled in everything I could remember from each day.”

“Brain on Fire” made the New York Times paperback nonfiction bestseller list, and last month Charlize Theron’s production company reportedly acquired the rights to adapt the book into a film, with Dakota Fanning signed on to play Cahalan.

“I think what my book did was reach, and increase interest in, the lay population,” she said. “A general practitioner might know about it [now] who might not have known about it before, and that is amazing because psychiatrists and general practitioners are the ones who are probably going to see this disease first.”

It’s still a mystery as to what caused the disease in Susannah’s case. One theory is that it’s a combination of having a genetic inclination — antibodies that must be already present and made in your body — combined with a viral infection.

“It does change the way you see things, undoubtedly,” she said of the experience. “I have moments every now and then where I will think, god, you know I actually could not be here right now. It’s cliche and kind of cheesy but it’s true. I think that everyone has in their lives these experiences of close calls, and I had mine really young, and I think that it does inform how you see things and how you live your life.

“I definitely still sweat the small stuff,” she said laughing, “And I definitely still let things get to me that shouldn’t, that didn’t change. But I think it made me more mature and more focused. You know, I just didn’t know what I wanted. Now I very much know what I want, and I feel a fulfillment in talking about these really exciting topics in terms of mental health and cutting-edge neuroscience and the connection between the mind and the body. I feel grateful to have something that’s a big part of my life now that wasn’t before.”

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