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:
An excellent review on The Book Forum:
Yesterday I heard Susannah Cahalan on Fresh Air on PBS. Here is the interview:

Friday, November 9, 2012

India's Summer

By Thérèse
Stamford CT, The Fiction Studio, 2012
258 pages            Fiction

India Butler is almost 40 and she feels stagnant in her job and her life. She is an unmarried high school teacher in London, and she is longing for something different. At the opening of the book she has organized a fire walk as a way to challenge her students but also to challenge herself. She wants a new life.

Who she really wants to be is her twin sister Annabelle, a Hollywood actor, married to a rock star, the mother of two daughters, rich and famous, and on and on and on. So, she goes to visit her sister during a break from school to try on a Los Angeles lifestyle, complete with paparazzi, expensive meals, support groups, name dropping, and an amazing love affair with a movie star. 

India’s Summer is a coming of age story or perhaps a “second coming” of age story. I think everyone wants to try on a new life but not everyone has the opportunity. It is that second chance that makes the book fun.  India has the opportunity to try on a new lifestyle and discover again (or perhaps for the first time) her worth and value. 

One of the devices Thérèse uses to create the atmosphere of superficial Los Angeles is to designer-name every item of clothing, furniture, and accessory. For example “She sat down on the Gubi stainless steel chair.” I, of course, have no idea what a Gubi stainless steel chair is, living, as I do, in a house full of hand-me-down furniture and a living room couch I am starting to hate. The closest thing I have to designer clothes is a couple of Eileen Fisher sweaters I bought recently at the Eileen Fisher recycle store and outlet. Oh, oh, oh---I do have a Michael Kors t shirt from TJ Maxx. Can TJ Maxx be considered a designer boutique?

She carries this device on, as well, with her classy pen name and the names of the people that endorse the book, including Arianna Huffington, Goldie Hawn, and Orlando Bloom, among others. Overkill, perhaps, but all in good fun.

Where I could identify with India's Summer is in the idea of trying on a new life. That is what travel is all about, and I think that is what Thérèse is conveying. Every once in a while, it is good to reassess who you are and where you are in your life. Every life, no matter how glamorous or meaningful becomes tedious. A shot of change is just what may be needed. Such change may not result in the love of a famous movie star, ala India Butler, but change will give the thoughtful person a new perspective and a new focus. I was reminded of a memoir I reviewed about a year ago—Working It Out—about a woman who appeared on The Biggest Loser television show after tragedy forced her to make massive changes in her life. Compared to Abby Rike’s life changing experiences, India’s appears frivolous and trite. Yet, India’s Summer does remind us that looking at our life through fresh eyes is always valuable.

I received this book from the publicist. Although I probably wouldn’t have picked it up on my own, it was a fun diversion from the dissertations and journal articles I have been editing all day every day. I will return to meatier subjects with Drift by Rachel Maddow, the book I am currently reading.

Thérèse is a first time author. Here is her blog:
She shares a lot of humorous entries about moving from England to living in Los Angeles. It is worth looking at.

Thursday, November 1, 2012

Saving Each Other

By Victoria Jackson and Ali Guthy
Philadelphia, Vanguard Press, 2012
252 pages       Memoir
The Shortlist

Victoria Jackson and her husband Bill Guthy are Infomercial superstars and celebrities. That doesn’t keep them from having the same life problems that other families have. Their teenage daughter Ali was diagnosed five years ago with an uncommon syndrome called NMO, which affects the optic nerve and the spinal cord.

Their book, Saving Each Other, describes the family’s fight to get control of the disease in Ali’s body and to get control of the effect the disease was having on Victoria and the rest of the family. Written in two parts (Victoria’s part and Ali’s part), the narration is part journal entries and part detail of the journey they took over the next few years to heal Ali and to get control over what would seem to be uncontrollable.

Saving Each Other is also the story of the beginnings of their foundation the Guthy Jackson Foundation, whose mission is to alert the world to NMO and to raise money to find a cure and to give support to those who are suffering from NMO, an “orphan” disease.
Victoria Jackson has a powerful personality and is a person who has overcome a lot of odds to achieve success. She holds to the relatively fatalistic attitude that if there is a 2 percent chance of something bad happening, it will happen to her. She discusses this several times in the book and she calls it her 2 percent rule. In telling the story of Ali’s disease, she is also telling the story of her life and her career.

Ali seems to be a pretty level-headed girl who thought that she could manage to ignore as best she could what was happening to her body. She told her doctor and family that she didn’t want to know what was the matter with her. The family went to great ends to try to keep her unaware of the nature of the illness. When she inadvertently finds out, she joins the family in the fight for a cure and in developing the foundation. She says that she doesn’t think that she should be the poster child for this “orphan” disease because she is currently is in such good health. She closes her portion of the book with some very good advice for those who receive a life-challenging diagnosis:
  • 1.       Discovery: She suggests that her ignoring the diagnosis wasn’t such a good idea.
  • 2.       Throw a Fit: It’s OK to be mad about the diagnosis.
  • 3.       Face the reality: “Put on your makeup and get out there.”
  • 4.       Don’t be a victim
  • 5.       Remember “The Sun will come out tomorrow.”
  • 6.       Never give up
This memoir of illness was sent to me by the publicist and could be beneficial to other families who face a child’s debilitating illness. It is never fatalistic, despite Victoria’s 2 percent rule, and it is very encouraging.

The Guthy Jackson NMO Foundation:
Victoria and Ali on the Ellen Degeneres Show: