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
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