Memoirs & Movies: Brain on Fire by Susannah Cahalan

You know how the saying goes: the book is always better. When works of fiction are turned into films, we're quick to notice the differences from page to screen, and most of the time are left dissatisfied because they didn't meet the expectations of our imaginations. More often than not, authors' voices are lost during production, their stories placed into the hands of screenwriters and producers. 

But what about the memoir genre? Very few memoirs have successfully been turned into films - usually when a work of nonfiction is brought to the screen, the words "based on a true story" appear during the opening credits. The line between fiction and reality is blurred in Hollywood, especially in cases of dealing with the lives of actual people and things that happened to them.

I wrote about this topic in The Vindicator last fall, after I saw the film adaption of one of my favorite books, The Glass Castle by Jeanette Walls, a memoir. While Walls' story is remarkable the contents of the book aren't exactly lighthearted.  I voiced my concerns with Hollywood's glamorization of trauma and their misrepresentation of Walls' experience with poverty. I was initially shocked when Walls let her story become vulnerable to the likes of Hollywood, and even more so when she wrote an article for The Los Angeles Times expressing her gratitude to the film's director and crew for working closely with her to get little details of her story right, because when I left the theater I felt as though their efforts did not do Walls and her family much justice. 

A month or so ago  I watched Brain on Fire on Netflix, starring Chloe Grace Moretz as Susannah Cahalan, a  24-year-old New York Post journalist who goes from being healthy to catatonic in a month. The film is based on Cahalan's 2012 memoir Brain on Fire: My Month of Madness that chronicles her journey through medical mystery and finding her diagnosis in a rare brain disease called autoimmune encephalitis. The disease starts with flu-like symptoms, and in Cahalan's case, violent seizures, then swiftly progresses to the point of losing the ability to speak, read, write, and even walk. Some cases are even fatal. Cahalan's diagnosis was a breakthrough - after a month of multiple doctors, tests, prescriptions, and other diagnoses including schizophrenia, Dr. Souhel Najjar asked Cahalan to draw a clock. Cahalan drew all the digits on the right side of the clock, which confirmed Dr. Najjar's belief that the right hemisphere of her brain was inflamed (he used the exact words "Your brain is on fire"). 

While Chloe Grace Moretz gave a promising performance, it's clear that a lot of Cahalan's story was left in the margins. As captivated as I was, I found myself thinking "There's more to this woman's story." And undoubtedly, there is more than what we see on screen. 

Right before the film's debut on Netflix, Cahalan wrote an article for The New York Post describing the experience of watching her story come alive. In 2015, Cahalan and her brother, James, were invited to the set in Vancouver in the middle of production. What struck me about Cahalan's article was that she immediately addressed the differences between her reality, and Hollywood's depiction of her descent into madness. She picked a more poignant scene to focus on - when she first said "I love you" to her boyfriend (now husband), Stephen. As described in the book, they expressed their feelings to each other outside of a restaurant in New Jersey while Cahalan was in the middle of a psychotic episode - but instead she had to watch Chloe Grace Moretz and Thomas Mann play out this scene in a hospital room. 

The Brain on Fire movie went into production more quickly than Cahalan anticipated. The script, she said, came together in a matter of months, but she was given little control, which she noted in her Post piece -  "I agonized over the director’s decision to remove my brother from the script, and I pushed (again, unsuccessfully) for the movie to add more about the long recovery process. As the production wore on, I began to realize that I was nothing but a bit player in my own life story." Thankfully, though, Cahalan and Dr. Najjar were able to contribute to the medical aspect of the script. 

Even though there were notable parallels between her book and the film, Cahalan was grateful for the experience of seeing the moment of her diagnosis, clock-drawing and all, for the first time. Another side effect of autoimmune encephalitis is memory loss, one that sadly robbed Cahalan of the ability to recall the moment that changed her life. 

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Oddly enough, I found a copy of the memoir in one of the host stand drawers at work, and upon realizing it was the movie I watched a couple weeks earlier, I started reading. When I got cut, I took the book home and read it on the bus, then finished it during my morning shift the next day. Susannah Cahalan did not hold back with her writing, combining thorough medical research and emotional insight into her illness and recovery. Some parts made me cringe, some made my heart twist and turn. Cahalan's story confirms the fact that our own bodies are mysteries to us, and can inexplicably turn on us. Our minds can be extremely powerful yet fragile at the same time, which is a harrowing thought.

Autoimmune encephalitis made Susannah a stranger to herself and her family, friends, and coworkers. The most heartbreaking part of the book was her healing process - Dr. Najjar's timely diagnosis made it possible for Susannah to start aggressive treatment, but the road to recovery was anything but smooth. The medications and various types of therapy transformed Susannah's appearance, and made it hard for her to feel good about herself. She put so much energy into becoming a pre-illness version of herself - social, quick-witted, a loving daughter, sister, and partner, a respected colleague, and had to regain her cognitive and motor abilities. People didn't know how to approach or treat her. Her diagnosis and resulting treatment meant that she had to give up independence that she worked so hard for - trading her first apartment in New York for living with her parents while she recovered, and having to get permission to run simple errands. 

Despite the struggles and setbacks, though, Cahalan realized that she came out of her situation extremely lucky. If Dr. Najjar hadn't been made aware of her case, she would have ended up in a psychiatric ward, or succumbed to her condition. Her case in particular was brought to light by several other doctors and medical journals, and Dr. Najjar received many accolades for diagnosing Susannah. The clock-drawing test is now a common procedure. While Cahalan was the 217th person to be diagnosed with autoimmune encephalitis, thousands have been diagnosed after her. When Brain on Fire was published, several people with different illnesses reached out to Cahalan, and the same happened when the film was released. 

While yes, there is little precaution and preservation when it comes to memoir-to-movie adaptions, there is something much deeper to be taken from this remarkable medical story that was dependent on hope and happenstance, stated by Cahalan in the conclusion of her Post article:

"I realized then that none of my petty problems about the film mattered. The movie was not my story anymore — because it was no longer just 'my story.'

So I lay down the sword I had no business picking up in the first place, having realized this movie is not about me.

This movie has the potential to save lives."