Everything was going well for 24-year-old Susannah Cahalan. She was starting a promising career at a prominent New York City newspaper, and she was entering a serious relationship with a wonderful man. But slowly, things started going wrong. She had bouts of paranoia, strange hallucinations, and she was utterly unprepared for a major interview at work, which was highly uncharacteristic. She knew something wasn’t right, but numerous doctors gave her a clean bill of health. Eventually, however, they couldn’t ignore that something was seriously wrong with this bright young woman.
Although her early doctors couldn’t find anything physically wrong with Susannah and assumed she was suffering some sort of mental illness, her family was determined to prove that wasn’t the case; there had to be a physical cause of their daughter’s descent into madness. Susannah spent weeks in the hospital, having what seemed like demonic fits and growing progressively sicker. Finally, the celebrated neurologist Souhel Najjar stepped in and was able to diagnose her with a rare, newly discovered autoimmune disorder, which caused her body to attack her brain. Right in the nick of time, Dr. Najjar was able to save Susannah’s life.
When Brain on Fire opens, Susannah wakes up strapped to a hospital bed with no memory of how she wound up there. For the first time in weeks, she is able to think clearly. She learns that she has been in the hospital for nearly a month, during which she suffered psychosis, became catatonic, and nearly died. Using her journalistic skills, Cahalan pieces together the story of her month of madness, chronicling her early symptoms, hospitalization, her doctors’ attempts to figure out what was wrong, her eventual diagnosis with anti-NMDA-receptor autoimmune encephalitis, and her slow return to health.
This was a really frightening book. To see a healthy young woman with a bright future find herself suddenly transformed into a paranoid psychotic for no apparent reason, and to see how close she came to death because her doctors didn’t have the knowledge to correctly diagnose her, is scary. Cahalan writes about how easily she could have been diagnosed as schizophrenic and relegated to a psych ward for the rest of her life, as many people surely have throughout history. It’s heartbreaking to think how many lives have been ruined because this disease went undiagnosed and untreated.
Brain on Fire, which started out as an article for the New York Post, has done wonders to raise awareness of this disease. As Cahalan writes in her book’s conclusion,
“In the spring of 2009, I was the 217th person ever to be diagnosed with anti-NMDA-receptor autoimmune encephalitis. Just a year later, that figure had doubled. Now the number is in the thousands. Yet Dr. Bailey, considered one of the best neurologists in the country, had never heard of it. When we live in a time when the rate of misdiagnoses has shown no improvement since the 1930s, the lesson here is that it’s important to always get a second opinion.”
This was a fascinating, terrifying book that I highly recommend reading. It’s like the TV show House but REAL — and it’s all the more powerful because it’s true. Brain on Fire is at once an excellent piece of journalism, a gripping medical mystery, an informative piece designed to raise awareness, and a criticism of the medical industry that almost let Susannah fall through the cracks.