Reading Brain on Fire: my month of madness by New York Post journalist Susannah Cahalan makes me want to get tested for autoimmune diseases. Like, every single one. But specifically NMDA-receptor autoimmune encephalitis. Because that is the one that rendered Susannah nearly catatonic for a month during the spring of 2009, the one that one of the world’s top neurosurgeons cured her of…but one that is commonly mis-diagnoised as schizophrenia or similar mental illnesses. Yes, a disease that, had the right doctors not cared for her, could have landed her in a mental institution.
What began as two assumed bedbug bites quickly turned into no-holds-barred paranoia, seizures, and manic-depressive behavior. Susannah was in her early 20s, thriving as a journalist and enjoying her life in Manhattan. The first doctor she saw was convinced that she was over-worked and probably drinking too much. Days later she was on the epilepsy floor at NYU on the brink of being transferred to the mental health ward because of her uncontrollable and erratic behavior. It was only her father’s daily presence outside of her hospital room door and her boyfriend’s nightly visits that kept her calm enough for the necessary procedures to be completed which kept her as a neurological patient instead of a psychiatric one.
The brain is a monstrous, beautiful mess.
Susannah was cured. Obviously. People in catatonic states tend not to write memoirs. But she fought really, really hard to get back to her old self. The month in the hospital might have been the worst, but it by far was not the end. The past three years have been a daily struggle, trying to get her physical and mental abilities back to where they were pre-diagnoses. The disease that attacked her brain led her to compose this stunning memoir of her experiences, as well as those of her family’s (verbatim from a journal her divorced parents used to communicate with one another between visits), and doctor’s. She is an inspiration to anyone suffering from any disease because she fought to bring herself back.
Susannah’s situation brings to light – at a very appropriate time – the discussion this nation must have about mental health. Her month-long stay at NYU cost over $1 million, covered by her employe’s health insurance and her parent’s ability to cover the out-of-pocket expenses. The combination of the two is an unlikely combination for many Americans suffering from mental disease. Imagine if her insurance had run out, or wouldn’t cover the costly experimental tests, or if her father weren’t retired and able to spend all day with her, advocating for her to the doctors. Imagine if she were poor, and when her symptoms came across as schizophrenic, she couldn’t afford the tests that proved otherwise. Would she ever have recovered? Would she have spent her life in a mental institution? Or worse, in prison because of a crime she inadvertently committed while under duress of the disease?
But this is all the more reason that psychiatrists and neurologists are finding ways to break down the barriers set in place between psychology and neurology, urging for one uniform look at mental illnesses as the neurochemical diseases that they are, and in the process…getting more grant money to study the overlap.
Susannah writes about the duress mental health physicians are under, often seeing 35 patients each work day. This forced assembly-line care is unsuited to the long-term one-on-one care that many (supposed) mental health patients require.
I’m the one who is lucky. I did not slip through a system that is designed to miss cases just like my own – cases that require time and patience and individualized attention.
This 250-page memoir is a true story of resilience, dedication, faith, and success. It could have been one about failure. I pray that this book, this story, makes its way into the hands of people who have the ability to alter the way individuals with mental health diseases are tested, diagnosed, treated. Please read my review of 72 Hour Hold for another author’s take on mental health in America.