“Though she attempts to communicate some deep, dark part of herself in her writing, she remains incomprehensible, even to myself.”
In 2009, at the age of 24, New York Post reporter Susannah Cahalan seemed to be losing her grip on her life. She found herself suddenly forgetting to do the necessary preparations for her job, snooping through her boyfriend’s things, and having emotional breakdowns at work. All of this was out of character, but then she went suddenly and inexplicably mad, suffering from auditory and visual hallucinations, and paranoid delusions. Her physical symptoms, including numbness and tingling, seizures, and catatonia all suggested that there was something neurological rather than psychological at work, but doctors struggled to find anything physically wrong with her, and a transfer to a psychiatric facility seemed inevitable. Then a new doctor joined her team, and made a life-saving diagnosis of an autoimmune disease discovered only two years before. But when Cahalan finally woke up in the hospital, she didn’t remember any of this, and Brain On Fire constitutes her effort to piece together her own story from the available medical records, videos, and accounts from family and friends, all presented in the clear and straight-forward prose of a talented journalist.
Cahalan initially reported on her own story in the New York Post in an October 2009 article entitled My Mysterious Lost Month of Madness. Brain On Fire expands on this telling, with considerably more polish and detail than the original article, with Cahalan delving deeper into records of her illness. Some of the memories reported in her initial article turned out to be hallucinatory or misremembered after further investigation. Though she had made leaps and bounds in her recovery at the time of the article, her increased re-mastery of language is evident in Brain On Fire. The only drawback in comparison to the article was that the nearly three hundred page book didn’t contain many more direct quotes from her friends and family. Although Cahalan’s own descriptions are incredibly emotionally resonant, her family remains somewhat at a remove as a result of this choice.
Cahalan’s story is a real-life episode of House, complete with misdiagnoses and unsuccessful treatments. One of her early doctors, assuming that she was lying in her medical history, estimated that she was drinking several bottles of wine per day, and was thus suffering from alcohol withdrawal and job-related stress. However, what is most incredible about Cahalan’s story is the number of pieces that had to fall into place in order for her tale to be inspirational rather than tragic (though it is frightening regardless). Cahalan is candid about how lucky she was to finally receive a correct diagnosis. Just three years earlier, no one would have known what was wrong with her, despite the fact that doctors believe her disease is not a new one. Even after the disease was discovered, only those up to date on the most current medical literature would have read about it. She also had medical insurance to cover her one million dollars of medical expenses, and a supportive family that fought to ensure that she received the best treatment when she was unable to advocate for herself.
Although the dark part of this tale is supposed to be the threat of misdiagnosis and slipping through the cracks of the system, another feature was more disturbing. Working beneath the surface of this narrative is an incredible fear of mental illness. Cahalan recounts incidents in which her parents positively bristle at the suggestion that she might be mentally ill or developmentally disabled. Yet in her case, and some others, it was the right thing for her parents to fight against a psychiatric diagnosis. After writing about her illness, Cahalan received letters from another family whose daughter was saved by their refusal to believe their child had schizophrenia after reading about NDMA autoimmune encephalitis. Despite the evident stigmatization of mental illness, Cahalan’s diagnosis also hints at the as-yet undiscovered physiological causes that may underlie some of these conditions, and perhaps ultimately lead to better treatments.