27 October 2020

Brain on Fire, by Susannah Cahalan

Brain on Fire, now a Netflix film starring ChloĆ« Grace Moretz, Thomas Mann, and Tyler Perry, is easily one of the most unnerving medical books I've read in a while. What's most frightening is Cahalan's complete inability to understand or control, what was happening to her. At 24 years old, just as she was truly making a name for herself in journalism in New York City, she awoke to find herself strapped in a hospital bed, completely unaware of what had happened to her. Memories erased, speaking was impossible, moving was not allowed, nor was she able to even if she tried: she was strapped to the hospital bed. Pieces of each day began to fragment into moments that increased doubt in her own confidence and undeniable fear at the unknown of what happened to her, the question of what was happening in her body that plagued her, possessed her, but the most terrifying is that it appeared out of nowhere. All within one month. A month that turned into more time erased, a life re-drawn into something maniacal. Her life as she knew it, how she was leading it and loving it, was gone. Doctors diagnosed her as bipolar, manic depressive, with her conditions of erratic behavior leading to fainting and seizures were frantically increasing at an alarming rate.

How it happened still is a mystery encased in medical riddles continuing to be untangled today about an auto-immune disease; we know it happens to primarily young women, but other than that, there is no true and consistent understanding. Historically over the past 100 years, there is an unexpected number of documented cases of young women who suddenly were filled with "hysteria." A notion befitting a 1900s novel on high society, women with fainting spells, however in today's advanced medical community, doctors and nurses and researchers might have a tiny inkling of reasonable and sound evidence to prove something significant. Something within the auto-immune disease category, but more specifically the unique and rare anti-NMDA receptor encephalitis.

But even though medical communities might slowly be familiar with this, science is still unfolding pieces every day for more awareness, how to manage it, and one day, hopefully a cure. The "madness" that descended upon the author, one that tested a relationship with her new boyfriend, and also assuredly bonded her once estranged parents, became a goal to combine efforts to figure it out together, in collaboration with doctors who believed. With her family dedicated to her, they shared a common journal in her hospital room to record moments they recorded when they visited with her, seizures, and events that went beyond understanding for a healthy human body, comparing these journaled events with shocking camera footage to decode a pattern, anything to explain why Cahalan was besieged with this medically "new," disease.

What I respected was her acknowledgement that she was lucky, on so many levels. She had a solid family support structure, and a boyfriend who was there for her every step of the way, even though they had just started dating. She had extensive medical health insurance as well, but even with all of that, while it still gave her the luxury to be potentially cared for more than others, she still encountered doubt and disbelief and many diagnosed her initially with mental disorders, paranoia, and more. What about patients who don't have the "right" healthcare coverage, who don't fit into the "approved" and "believable" medical population? What might patients such as those experience?

Moving and heart-wrenching, and downright scary, this memoir of a young woman's spiral into a series of medical appointments, memory loss, physical debilitation, seizures, and more is at times thoughtful and straight-forward, but mostly filled with downright horror. It is completely terrifying to imagine what it might be like for a young mind to go awry, astray, and fall apart, all without any medical research or support for those suffering from an auto-immune disease that many still don't believe exists.

Read this. Recommend it to your friends with young daughters. Watch all and care for them. This is important.

Disclosure: I downloaded this book for free from my library's Libby app.

About the Author (from her website)

Susannah Cahalan is an American journalist and author, known for writing the memoir Brain on Fire, about her hospitalization with a rare auto-immune disease, anti-NMDA receptor encephalitis.

She has worked for the New York Post. A feature film based on her memoir was released in June 2016 on Netflix.

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