ALiEM Bookclub: Brain on Fire – My Month of Madness

“Looking back at this time, I see that I’d begun to surrender to the disease, allowing all the aspects of my personality that I value – patience, kindness, and courteousness – to evaporate. I was a slave to the machinations of my aberrant brain. We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.” – Brain on Fire, Susannah Cahalan

Brief Synopsis

Brain on Fire is the New York Post’s reporter Susannah Cahalan’s (@scahalan) captivating account of her battle with a mysterious and life-threatening illness. Her progressive physical, cognitive, and psychological symptoms worried her family and stumped physicians, who searched for an explanation. Cahalan pieces together her “month of madness” by supplementing her limited recollections of her illness with those provided by family and friends—as well as scouring through her medical records. Here, the reader is exposed to the sometimes confusing and harsh world of healthcare seen from the perspective of Cahalan as the patient. In addition to telling her story, Cahalan also applies her reporting skills to meticulously research her ultimate diagnosis, Anti-N-methyl D-aspartate Receptor (Anti-NMDAR) encephalitis—a disease that has only recently been acknowledged. All together the memoir gives the reader an intimate and informed testimony of her experience as a patient.

THE PATIENT PERSPECTIVE

Cahalan describes her visits to the emergency department, various doctors’ offices, and finally a prolonged hospitalization in an epilepsy unit. As medical professionals, we know these environments intricately, but rarely from the viewpoint of our patients. The author’s recollections of her and her family’s experience as a patient give the medical reader a different perspective into our profession. Especially frustrating was how often her initial symptoms were dismissed as consequence of a young person living the party life in NYC, even though Cahalan and her family would deny excessive drug and alcohol abuse. But as a medical professional, it is easy to see how that type of conclusion could be made from a young person presenting to the ED with complaints of paranoia, hallucinations, and otherwise odd behavior. And thus the beauty of this book, in reading the patient’s narrative, we are able to better understand the impact of our practice, unintended judgement, clinical decisions, and communication with our patients and their families during times that are often the scariest and most uncertain in their lives.

Clinical Application

Cahalan’s book forces the reader to take a hard look at the current methods of medical training. In medical and nursing training, our focus is on understanding pathology, diagnosing disease, and acquiring the language of medicine. During the time patients spend in our care, it is common for us to identify them by their disease—for example, the chest pain in room 5, or the laceration in the hallway. In Brain on Fire, Cahalan recounts her experience during medical rounds after she is diagnosed with Anti-NMDAR encephalitis:

“Now that we had a diagnosis that had never before been seen at NYU, young MDs, hardly a day older than me, stared at me as if I were a caged animal in a zoo and made muffled assessments, pointing at me and craning their heads as more experienced doctors gave a rundown of the syndrome.”

Teaching by way of clinical rounds is a necessity in the medical world, but have we given enough thought to what it feels like from the other side of the bed—as the person being rounded upon? We know the details of our patients’ medical history and clinical course, but we also need to be aware of our patients’ own perspective on their illness, and we should be sensitive to what they experience emotionally during their treatment.

Reading a patient’s memoir, gives us this crucial and often overlooked insight that could make us more compassionate physicians. This makes this book applicable, not only to the junior learner in the medical setting, but also to the seasoned practitioner to serve as a gentle reminder that our patients’ narratives and recollections of their medical experience goes beyond the simple and sterile labeling of a diagnosis.

Discussion Questions

Medical professionals often use defense mechanisms to separate themselves from the many difficult situations we face at work. Cahalan recounts an interaction between her mother and one of her doctors in which the doctor refers to a bet she has regarding the final diagnosis. Have you ever found yourself using a defense mechanism and why?
Many different physicians evaluate Cahalan during her illness before her ultimate diagnosis is made. Do you think she was initially misdiagnosed?
The author acknowledges the good fortune she had in finally reaching a diagnosis and receiving the appropriate treatment. What factors do you believe contributed to her eventual diagnosis and treatment?