“I readily admit that I’m an unreliable source. No matter how much research I’ve done, the consciousness that defines me as a person wasn’t present then. Plus, I’m biased…. What is left, then, is a journalist’s inquiry into that deepest part of the self—personality, memory, identity—in an attempt to pick up ant understand the pieces left behind.” (from the Author’s Note)
This is NY Post reporter Susannah Cahalan’s account of her battle with and recovery from a rare autoimmune disorder that attacked her brain.
She seemed at first to be headed for a psychotic break. She experienced unexplained crying jags followed by inappropriate laughter, paranoia, unreasonable demands on others, and was uncharacteristically unprepared at the job she loved. Out of the blue, she had a seizure. One neurologist attributed it to alcohol withdrawals. She was hospitalized for about a month in an epilepsy ward, of which she now remembers little. She was a difficult and uncooperative patient, trying to escape, pulling EEG leads (and hair) out of her scalp. She lost motor skills, eventually finding even walking difficult.
Arriving at her diagnosis and treatment proved immeasurably difficult. Indeed, no one knows more than Cahalan herself how fortunate she has been to have good insurance, a supportive family and well-informed doctors. It was through chance that one of her doctors happened to read a study of a small number of women with ovarian tumors. In an effort to attack the tumors, antibodies had crossed the blood/brain barrier—once thought uncrossable—and attacked chemical receptors in the brain, causing swelling of brain tissue and leading to symptoms similar to Cahalan’s. She herself did not have an ovarian tumor and no certain cause has ever been determined for her condition. Cahalan is only the 217th person, as of 2009, to have been diagnosed with the condition called anti-NMDA (N-methyl D-aspartate)-receptor autoimmune encephalitis.
The book is dividing into three main parts, dealing with the beginning of the onset, the hospitalization and the slow and painful recovery. Many have complained that this last part of the book is dull, and while the greatest drama is certainly in the first two parts, it appears the author wishes to show that even in the best outcomes, (25 percent of people with the disorder do not survive) recovery is a slow, arduous ordeal. She was one of the lucky ones in that she was able to return to her old life and work.
In preparing for the book, Cahalan watched video footage of herself in the epilepsy ward. She has little memory of the ward and is shocked by the stranger she saw:
The girl in the video is a reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good.” (Chap. 47)
The book brings up questions of identity and consciousness. As the quote above shows. Cahalan, because she has no memory of the time, views herself as a stranger. Who was she watching in those videos? Who are we as individuals?
I can easily recommend this book. While not a happy read, the ending leaves one feeling grateful.
*An earlier version of this review appeared on Epinions, a site that is no longer active. It has been rewritten.*