Brain on Fire
Updated: Mar 30
The August book choice for Random Reader's Book Club was Brain on Fire by Susannah Cahalan and it did not disappoint. This journalistic memoir is about Cahalan's battle with a rare disease known as anti-NMDA receptor encephalitis. It is unbelievable that Cahalan's story is not fiction and even more incredible that she has been able to share her story with the world. The Random Readers Book Club discussion was lively and thought provoking. As far as memoirs go, this was the perfect fit for a book club discussion.
Cahalan was a healthy, 24 year old reporter working for the New York Post, when she fell victim to bizarre symptoms including sensitivity to colors and noise, trance-like states, hearing voices, erratic behavior, and seizures. She eventually was admitted to the epileptic ward of a hospital where she received numerous tests and misdiagnosis'. The doctors are baffled as her symptoms worsen, sending her into a state of psychosis, eventually leading to her inability to think, talk, and physically function. Her family and boyfriend bravely stand by her side and urge the doctors to keep striving to figure out what is wrong her. After MRIs, spinal taps, CT scans, etc. a doctor known in the medical world for solving bizarre cases hands her a pencil and paper and asks her to draw a clock. Cahalan draws a circle with the numbers 1 through 12 squished onto the right hand side of the clock, leaving the left hand side blank. This simple tests indicates that there is swelling on one side of her brain. A simple pencil and paper were the key to figuring out the mystery to this illness. From there, Cahalan is diagnosed with anti-NMDA receptor encephalitis, an auto-immune disease where the body mysteriously attacks the brain. The doctor simply describes it as her "brain is on fire." They are unable to pinpoint how Cahalan contracted this disease, but are able to set her on the path of recovery.
Brain on Fire📷 is an incredible and true testament to Cahalan's strong will to survive and perseverance. Once Cahalan received her diagnosis, she could begin her road to recovery, but it was a road she walked for years. Cahalan used her position at the Post to publish an article about her experience and was able to spread the word about the condition, which resulted in many people finally finding the reason to their mysterious symptoms. The symptoms of this horrible disease were horrible and fascinating, but the most touching part was Cahalan discussing how her Post article resulted in a family finding a cure for their daughter. She had similar symptoms and for years doctors told her parents that she was mentally ill and they needed to accept this fact and help their daughter try to live her life, as normally as possible. They were unwilling to give up and gave Cahalan's Post article to the doctor and forced them to test her for anti-NMDA receptor encephalitis. She was positive and they were able to start treatment. She went from being wheelchair bound, unable to speak, to ice skating again within a years' time. The family sent Cahalan a letter, along with a video of their daughter ice skating. The impact she made by sharing her story touched my heart and brought tears to my eyes.
Brain on Fire is written from a journalist's perspective. Cahalan pieced it together with her fragile memories, father's journal, hospital footage, and interviews with family members, doctors, and medical staff. She does not remember many weeks and months during which the disease took control of her body in the worst way, therefore she constructed these times from the accounts of others. That fact alone is incredible, but also made me wonder if some parts were slightly fabricated, since memory can be such a tricky thing. Cahalan is very upfront about this and even has a chapter dedicated to something she thought for years was fact, which ended up being untrue, even when other's confirmed it. It just goes to show you that memory can, at times, be unreliable.
Cahalan uses medical terminology and definitions in Brain on Fire, but is able to explain it in layman's terms. I appreciated this because I found her condition fascinating and it is able to help people who are afflicted with the same symptoms. At times, it was a little clunky, but overall flowed very well and did not take away from the story. I read the first half of this book, then listened to the second half on audio. The audio was fantastic and I highly recommend it if you choose to read this book.
I gave Brain on Fire by Susannah Cahalan ★★★★.5 and have added it to my ever growing list of favorite memoirs. It is a medical mystery solved with a journalistic flair. Cahalan is inspirational and a vivid writer. A good friend told me recently that inside everyone, is a story waiting to be written, but not everyone is gifted with the ability to write. As horrible as it was, maybe there was a purpose behind Cahalan getting this rare disease, so that she could educate people and spread awareness.