Imagine waking up tied to a hospital bed with no recollection of how you got there, your head wrapped in gauze and a strange woman standing over you. Your only recent memories are hazy and terrifying, and you can’t quite establish what is real and what isn’t. You find you can no longer communicate clearly through speech or written word, and a horrible paranoia plagues your thoughts. For New York Post journalist Susannah Cahalan, this scene isn’t just the gripping opening chapter of a bestselling book, but also one of the most vivid and horrifying moments of her entire life. It is one of her few clear memories of a month of extreme illness that nearly killed her.
In her early twenties Cahalan appeared to have it all. She was in a committed relationship, working in a prestigious newsroom, and had the kind of natural good looks and outgoing personality that attracted people to her. Surrounded by friends and living in a New York City apartment, Cahalan was well on her way to establishing herself as one of the most promising young print reporters in the city. And yet she felt tired - weighed down by fatigue and other vague symptoms of an unnamed sickness progressively getting more intense . Her thoughts were becoming more and more convoluted and her work was beginning to falter. A variety of tests for things like mononucleosis came back negative, and even after experiencing severe seizures, Cahalan’s illness was still being brushed off by doctors as nothing more than alcohol withdrawal (despite her not being an alcoholic) and stress.
Eventually Cahalan’s condition deteriorated to a point where she was having frequent seizures, violent outbursts, and symptoms of mental illnesses like schizophrenia and bipolar disorder. Unable to live alone or continue working, she first moved in with her mother and was then admitted into New York University hospital. At this stage her condition had become so severe she could no longer properly form memories and was unable to communicate effectively with her family and doctors. For a person whose entire life and career evolved around communication and memory, Cahalan felt like she was losing her mind.
Despite having a team of incredibly intelligent and proactive physicians working on her case, Cahalan’s condition continued to evade diagnosis. She slipped into a state of catatonia, and to this day remembers almost nothing of a full month of her life spent in the hospital. Just as doctors were preparing to admit her to a psychiatric ward, a brilliant physician named Souhel Najjar took on her case and diagnosed her with an incredibly rare and vastly misunderstood autoimmune disease called anti-NMDA receptor encephalitis. Essentially her own body was attacking her brain, causing massive inflammation and leading to symptoms like hallucinations, paranoia, violence, and physical pain.
With an intensive drug regimen, Cahalan slowly began to recover, and with time became curious to learn more about the history of her disease. Through extensive interviews and hours of watching footage of herself in the hospital, she was able to successfully piece together the lost month of her life. Brain On Fire is a compelling and harrowing story about sickness, recovery and all of the unknowns lurking around the corner in life, but also a brilliant analysis of how medical systems deal with people who are difficult to diagnose.
The most interesting pages of Brain On Fire unfold in the book’s third and final section, in which Cahalan analyzes her experiences in the American medical system and considers what would happen to a patient with anti-MNDA receptor encephalitis who didn’t have insurance or wasn’t able to advocate for themselves properly. Though the disease is still incredibly misunderstood, researchers are starting to form a theory that anti-NMDA receptor encephalitis could be responsible for the thousands of cases of so-called demonic possessions that have been reported for centuries - cases which led to young people, women in particular, enduring brutal interventions by quack doctors and religious “experts”. With symptoms that mimic severe mental illness, anti-NMDA receptor encephalitis is likely undiagnosed in many patients who have been sequestered to psychiatric institutions as well.
Brain On Fire is an incredibly well written book, and one that reflects the analytic ability of its author. Cahalan has used her journalism powers for good in this book, and has created a platform for physicians, patients and families to discuss a complex and under-researched disease. This book is a must-read for anyone with an interest in science, journalism, or the American medical system.