In this book, Susannah Cahalan recounts her wild journey, she calls her “month of madness,” that ended with her diagnosis of anti-NMDA receptor encephalitis. Susannah was a very active, talkative, outgoing 24-year old journalist when her symptoms began. As with many neurological conditions, the symptoms started as small, non-worrisome signs that can be chalked up to nothing serious. She noticed some numbness in her left arm, some personality changes (such as paranoia) that were abnormal for her, and an inability to focus at work. Susannah became paranoid that her apartment was infested with bed bugs and had an exterminator come and spray for them even though he told her he was no signs of them anywhere in her apartment. She confided in a coworker about another episode of paranoia, where she looked through her boyfriend’s emails, convinced that he was cheating on her. This was very abnormal for Susannah, but her coworker told her to not worry- it’s a common thing to be curious or even suspicious about boyfriends/girlfriends. To be honest, if one of my friends confided in me like Susannah did to her friend, I think I would have told her the same thing. While it’s not a healthy behavior, it’s also nothing to go to a psychiatrist about. But Susannah knew something was not right. She eventually took herself to the doctor (another abnormal thing for her, as she rarely got sick or went to the doctor even if she did), convinced that she had bipolar disorder or another psychological illness.
Susannah ended up enduring numerous doctor’s appointments as her symptoms got worse, and one doctor was convinced that Susannah’s symptoms (paranoia, erratic behavior, personality changes, seizures) were a result of alcohol withdrawal- from partying too much. But this simply wasn’t true. Susannah frequently drank wine at dinner, but only a glass or two. She and her family knew that this was simply not true.
Her behavior became so concerning (she even attempted to jump out of a moving car) that her mother brought her to New York University Langone Medical Center, where Susannah experienced her second seizure, thus beginning her “month of madness.” They ran multiple tests on Cahalan, including an EEG and MRI, that all came back normal. However, her actions were anything but normal. She was violent, experienced hallucinations, and did not engage in conversations when people spoke to her. It was as if she was there physically, but not there mentally. It wasn’t until a new doctor was assigned to Susannah's case that her family saw a glimmer of hope. Dr. Najjar did not believe that Susannah's issue was psychological. He asked her to draw a clock, and when she drew all the numbers on one side, he told her parents that he believed she was suffering from an autoimmune disease that was attacking her brain, causing inflammation. He recommended a brain biopsy, a procedure not commonly done as it is very invasive. However, it came back as showing inflammation in her brain, just as Dr. Najjar had thought. He is the one that told Susannah's parents that her brain was “on fire.” From there, she was diagnosed with anti-NMDA receptor encephalitis, which is a very rare autoimmune disease. Less than 250 people had been diagnosed before Susannah. She was treated with IVIG (intravenous immunoglobulin therapy) which is essentially an immune system boost, plasmapheresis, and steroids.
Although Susannah did eventually return to “normal” after many months, she will never be the same. She only remembers bits and pieces of that month, and many of those pieces have been put together by her family telling her what happened, as well as watching videos of herself in the hospital. She is committed to telling her story in hopes of helping others who might have the same disease and have been misdiagnosed. She went on the TODAY show and her story actually ended up saving a life when a family member of a young girl suffering from similar symptoms heard Susannah's story on TV.
Susannah's story is chilling, detailed, and inspiring. She was a healthy, active young woman and this disease took her sanity away from her rather suddenly. While I have not had an experience anything like hers, I do identify with her on some levels. I was diagnosed with cancer at the young age of 20, and I was by all accounts healthy otherwise. No one ever sees a scary diagnosis coming, but is comes as more of a shock when you are young and healthy. I also was surprised to find that I took one of the same steroids as Susannah did during her time in the hospital. While I did not write a book about my experience, I did keep a blog during my treatment. I think that it actually helped me cope with my “new normal” and helped people to understand my condition and experience better. Like Susannah, I am ‘back to normal” now, but I will also never be the same. Susannah has a scar on her head from her biopsy, and I have one on my neck from mine. They serve as permanent reminders of what we have been through. Going through something like that changes you forever- not just physically with scars, but emotionally as well. I am inspired that Susannah tells her story to eloquently and boldly. Highly recommend this book!
Cahalan, Susannah (2012). Brain on fire: My month of madness. New York, NY: Simon and Schuster Paperbacks
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