Thursday, November 15, 2012
Brain on Fire: My Month of Madness
By Susannah Cahalan
New York, Free Press, 2012
284 pages Memoir
It all started with two little dots on her arm that Cahalan thought were bedbug bites. It was during the bedbug scare in New York and she was sure that there were bedbugs in her apartment. When Brain on Fire opens, Cahalan is a young reporter at the New York Post, in her own apartment for the first time and in a serious relationship with a young man named Stephen who emerges as one of the heroes of the story. After the bedbug scare, Cahalan starts to lose control of her mind and some of her extremities. She becomes extremely paranoid, even to the extent of searching her boyfriend’s emails for exchanges that occurred with an ex-girlfriend. She is abusive to her parents, says crazy things to her friends, and misses important deadlines at work. This madness is followed by a series of seizures from which she emerges completely without memory, mad and almost catatonic.
The real madness occurs as doctors try to sort out what is happening to her. She receives diagnosis after diagnosis from bipolar to schizophrenia to epilepsy. No diagnosis seems to fit; it is many days before doctors even start to come close to understanding what is happening. At the height of the frenzy to try to find a diagnosis, a neurologist named Souhel Najjar, who emerges as another of the story’s heroes, administers a paper and pencil test that shows once and for all that something is wrong with her brain. "I drew a circle, and I drew the numbers 1 to 12 all on the right-hand side of the clock, so the left-hand side was blank, completely blank," she tells Fresh Air's Dave Davies, "which showed him that I was experiencing left-side spatial neglect and, likely, the right side of my brain responsible for the left field of vision was inflamed." Her brain was literally “on fire.” A biopsy of her brain showed that Najjar was indeed right and finally there is a diagnosis: Anti-NMDA-receptor autoimmune encephalitis. A course of treatment is begun which gets her out of the hospital after a month and her healing begins.
Cahalan captures brilliantly the nuances of the way her mind betrayed her with hallucinations and paranoia. These are things she remembers, but at a point just before she enters the hospital, she completely loses her short term memory. The events that follow her entry to the hospital were recreated after she returned to health.
More than a memoir of her illness, Cahalan uses her newswoman’s investigative skills to uncover the details of her month-long memory loss, including details about the treatments that were tried, the discussions that ensued, and the valiant efforts of her parents and friends to care for her and keep her case in the spotlight at the hospital so that she could be treated and cured. Interspersed throughout the memoir is more of her investigative skills as she uncovers truths about an unknown disease (Anti-NMDA-receptor autoimmune encephalitis) that scientists think may stretch back through history—madness that strikes suddenly with deadly force—what are sometimes called “demonic possessions.”
In many ways, Brain on Fire is a scary book—scary for Cahalan, her parents, her boyfriend, the attending physicians, and ultimately for everyone when they looked at the bills approaching $1 million. More importantly, Dr. Hajaar has come to a scary conclusion that many of the diagnoses of schizophrenia may indeed be an inflammatory swelling of the brain. He has learned a great deal from Cahalan’s case, and has contributed greatly to the current knowledge on brain diseases. What makes this book important is the forensic journalism done by Cahalan as she dissects the disease, the diagnosis, and the painful trip back to health.
I read Cahalan’s account of a frightening illness that nearly caused her death with a great deal of interest. My niece, Cory, suffered from an undisclosed neurological illness for about 6 months last year and fought back with enough success that she was able to run a 5K race in June. Now I am wondering if she also might have had Anti-NMDA-receptor autoimmune encephalitis. I am taking this book to her when I see her in a couple of weeks.
There are many illness books available. I have read several, most recently Saving Each Other by Victoria Jackson and Ali Guthy about another neurological disease. Brain on Fire is the most journalistic and the most compelling. I recommend it.
Susannah Cahalan's website: http://www.susannahcahalan.com/
An excellent review on The Book Forum: http://www.bookforum.com/review/10447
Yesterday I heard Susannah Cahalan on Fresh Air on PBS. Here is the interview: http://www.wbur.org/npr/165115921/a-young-reporter-chronicles-her-brain-on-fire