Book Review: Brain on Fire

This past week I traveled to Cincinnati, OH to play maid of honor in my best friend’s wedding. In short, it was four fun-filled days of raucous behavior, champagne slurping, scotch imbibing, can’t-stop-my-feet-if-I-tried dance fever, and a beautiful ceremony that brought even the most stoic to tears. It also included four flights and two layovers. When I grabbed a copy of Susannah Cahalan‘s Brain on Fire: My Month of Madness from one of those airport book stands, I didn’t realize that I was about to uncover a harrowing tale of one woman’s real-life struggle with an unknown disease that nearly drove her insane.

It’s 2009 and a cold spring night in Manhattan. Cahalan and her boyfriend have spent a relaxed evening on the couch watching PBS and drinking wine. After weeks of uncertainty and not feeling quite like herself, she falls asleep peacefully; unaware that that night would be the start to her month-long nightmare. “My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened. I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth.” For Cahalan, it was a scene straight out of The Exorcist and the beginning of her slow decent into madness.

Cahalan wakes up restrained in a hospital bed a month later, with little to no recollection of what happened to her yet very aware that something went terribly, terribly wrong. Through video evidence and first person accounts from her friends, family, and doctors, Cahalan is able to piece together her story that followed after that first horrifying seizure. The picture she paints is of a woman completely unrecognizable. Simply put by one of her doctors, “her brain is on fire.” As her body deteriorated so too did her mind. Aside from the extreme weight loss, failed muscle control, and inability to speak, she also experienced increasingly violent seizures, outbursts, extreme paranoia, hallucinations, insomnia, and a near-death catatonic state. She vaguely remembers as she watched in horror as doctor after doctor gave up on her prognosis, all but signing her death certificate.

That is until Dr. Souhel Najjar is called in to assess her case. After an initial exam and a few lab results that have ruled out all known causes, he decides to administer one more test. “Draw me a clock.” When she draws him a clock that contains the numbers 1 through 12 on the right side he nearly jumps for joy – she is the victim of anti-NMDA receptor encephalitis. Now with her diagnosis they are finally able to treat her and for the first time Cahalan and her family experience hope. Only the 217th confirmed case at the time, anti-NMDA is a new illness in the medical field. So new in fact that Cahalan could well have spent the remaining years of her life confined to a straight jacket with a misdiagnosis of Schizophrenia if it wasn’t for Dr. Najjar’s persistence.

Cahalan has since recovered but her experience changed her forever. Brain on Fire is almost like an out-of-body first person account of a young woman’s struggle to not only find her mind but her place in a world that no longer feels welcoming. Her story is both frightening and uplifting where even in the most painful passages you experience courage. Courage in her refusal to give up, courage in her brutal honesty when talking about the ugliness of her disease. Her writing is poetic, humble, and filled with compassion for herself, those who have had the disease, and for those who love her but will never truly understand what she went through, no matter how hard they try.

Brain on Fire is not for the faint of heart. It is a poignant story that weaves a tale of loss, isolation, and a relentless desire to live. While the ending concludes with an uplifting message, it is sobering to know that Cahalan will never be the person she was before and must also live with the knowledge that she can relapse at anytime and without warning. But it is with that knowledge that she lives each day without regrets, knowing at any time that day could be her last.