Book Club review for May 2015: Brain on Fire

May 2015 Brain on Fire: My Month of Madness by Susannah Cahalan

blog by Cindy Bushey

 

The medical world can be intimidating to the average person with its indecipherable jargon, distant physicians and office staff, and complicated billing system that rivals the U.S. tax code. And that is just from the perspective of a healthy person! As soon as an illness or disease enters the picture, all those factors exponentially increase in complexity. Personal stress and anxiety add another layer to the mix. However, after the shock of a diagnosis and a little time to adjust, a new normal seems to emerge. The author of this month’s selection Brain on Fire had to navigate the system while physicians tried to find a diagnosis for her ever more bizarre behavior. Susannah Cahalan was one of those rare cases with an illness still being described and discovered, and she truly was losing her mind.

Ms. Cahalan was and is a reporter for the New York Post, and her natural inclination for research is evident in this accounting. As she traces her journey from sanity to an increasingly less stable condition, she relies on journals kept by her and her father, medical records, and video recordings taken for medical purposes. She maintains an objectivity that surely had to come at a high cost – our readers wondered how she could watch her uncontrolled body movements and erratic speech with any equanimity. However, her goal is to advance public knowledge of her auto-immune disease in which the body actually attacks the brain and can, if not diagnosed and treated, actually destroy it. She blows away the credibility of old adages such as “what you don’t know can’t hurt you” and “ignorance is bliss” and reveals the very thin edge between health and mortality. This is not a comfortable book to read.

Yet, it is an enlightening book in a number of ways. Not only does the author do a wonderful job of defining complicated medical terms and procedures, she explores personal relationships and how they developed during her time of ill health. Her parents, though divorced and non-communicating, come together to provide help and support for her. Sadly, they can’t bridge their gap after working in tandem to heal their daughter. Her new boyfriend amazingly sticks with her through thick and thin and shows an astounding maturity beyond his years; their relationship survived and grew. The medical profession is devastatingly and exaltedly revealed in the persons of the author’s first physician who wanted to blame her condition on alcohol abuse (which he intuited by automatically doubling and tripling the amount she said she drank – note to selves: do doctors do this as standard procedure?) and her savior physician who was able to confirm his diagnosis with a brain biopsy and determine a productive course of treatment (another note: always get a second or third opinion and hope for some luck). Her friends and co-workers fleshed out the story both in their realistic, uncomfortable responses to her behavior and their dedicated support.

It was surprising how many of Zion’s readers have a personal connection to this story. Ms. Cahalan was first misdiagnosed with epilepsy and the descriptions of her tests and exams resonated with a reader whose co-worker has epilepsy and had similar tests and experiences. Often (although not in the author’s case) this disease starts with a teratoma which is a type of ovarian tumor containing remnants of body parts such as hair and teeth. One of our readers had something similar. This book was selected by a reader because of personal family history with mental illness and personal experience of closed head injuries who could identify with the continued problems Ms. Cahalan has with short term memory, reading and retention of information. Another reader’s career in allied medical fields brought experience and statistics to our discussion. We pondered with the author over the amount of undiagnosed or misdiagnosed people and were left with the uneasy conviction that the numbers are probably astronomical. Other readers have family experience with different types of auto-immune diseases. Most of all, our readers were left with a profound sense that there, but for the grace of God, go we.

Unfortunately, Ms. Cahalan’s search for a diagnosis was the most interesting part of the book. The second half seemed long and tedious. It was anticlimactic since we all knew she survived to write the book. Our readers would have been better satisfied if she had delved more into the state of mental health in the United States, appalling as that might be. It was brought home that the level of medical expertise we assume in our health care professionals is probably unrealistic, and we learned that we must be our own primary advocates when navigating murky medical waters. This book is very readable, definitely advanced our knowledge of this particular illness as well as all things medical, and provided a spirited discussion for our readers. They gave 5 one thumb up ratings and 5 neutral ratings.