Narrative Medicine Monday: Brain on Fire

Susannah Cahalan’s gripping book Brain on Firerecounts her sudden descent into psychosis and her parents’ frantic search for the cause. (Fair warning that this post contains spoilers to this real-life medical mystery.) Cahalan, a successful young New York City journalist, notes small changes at first: mild numbness, forgetfulness, nagging insecurities.

After Cahalan suffers an overt seizure, she is further evaluated by a top neurologist. He is convinced, after her MRI, exam and blood work all come back normal, that her symptoms are due to alcohol withdrawal, despite no history of heavy alcohol or illicit drug use.

I was struck by the glaring assumptions made by her physician; the details of her narrative were lost on him and the opportunity for detecting her rare diagnosis was missed. Cahalan later in the book asserts the misdiagnosis was a “by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.”

I couldn’t agree more with Cahalan. Our system as it currently stands requires physicians to see more patients in less time, respond to more emails, make more phone calls and review more lab results, often at the end of a nonstop 10 hour day. It’s no wonder details of a patient’s narrative are missed. There’s no space to think deeply about a case, delve into the specific details that may provide a vital clue.

As Cahalan’s mental fitness deteriorates and her paranoia heightens, her mother insists she be admitted to the hospital and her neurologist acquiesces, finding a bed with 24-hour EEG monitoring at New York University Langone Medical Center.

Cahalan doesn’t retain many memories of the month she was hospitalized but does piece them together for the reader, using video obtained while being monitored for seizure activity, hospital notes and the recollections of her family and friends. Through these she paints heartbreaking snapshots of a young vibrant woman’s loss of function and reality.

Cahalan eventually comes under the care of a physician who finds time to listen to her story, every detail from the beginning. His diligence connects her to the proper clinician and results in her correct diagnosis and treatment. Cahalan’s account made me think of Dr. Danielle Ofri’s book What Patients Say, What Doctors Hear. The details of her story were so imperative to discerning, even suspecting, the correct diagnosis. Hers is a cautionary tale that reiterates the need for system reform if we want our doctors to have the time to put their extensive training to use and get it right.

Writing Prompt: After Cahalan recovers, she notes that she has difficulty distinguishing “fact from fiction.” She muses on memories lost and formed and struggles with the fear that she could, at any time, relapse. The experience causes her to reframe the brain as vulnerable. Do you think of the brain as fragile? Why or why not? Do you agree with Cahalan that a primary defect in the medical system is one that forces providers to see so many patients to “maintain their bottom line”? Think of a time this affected you as a patient. If you’re a provider, think of a time a diagnosis was delayed or missed because of systemic pressures resulting in a missed piece of a patient’s narrative. Write for 10 minutes.

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