Rapt with Susannah Cahalan’s recent memoir, Brain on Fire: My Month of Madness, I decided I had to share it with our autoimmune community. One part romance, one part horror, one part medical biography, this bildungsroman will satiate anyone from a young adult to a retiree.
The story chronicles then 24 year-old Cahalan’s brush with death when sudden neurological symptoms send her to NYU Langone Medical Center for a month-long stay. After collecting notes (Cahalan is a NY Post reporter, after all) from doctors, family members, coworkers, friends, her very dedicated boyfriend, and her own fragmented memories, she was able to piece together her experience and write this novel.
The story begins with Cahalan exhibiting some unusual behavior as her illness is slowly errupting. She becomes wild with jealousy and searches her boyfriend John’s apartment for signs of another woman, for no reason at all. She also becomes sensitive to stimulation on her morning commute, and begins imagining that things are happening that are not. For example, she claims that her father murdered her stepmother who is alive and well. By the time she tries to jump out the back seat of her Mom’s car into NYC traffic, believing she’s being kidnapped,her family knows she is in grave danger.
Once checked into NYU Langone Medical Center, Cahalan has one of her grandest delusions yet–that she is on the news and the nurses are spies for the news network.(See below for video). This episode was actually captured via cameras in the room she was evaluated in, which are used to observe patient behaviors to improve diagnosis.
Over the next days and weeks, doctors run tests with little results. Cahalan’s case becomes hopeless as she enters a catatonic state, deteriorating fast. As her parents begin weighing their options, in walked Dr. Najjar–the man who will come to save her. Najjar takes 3 pages of notes about her when he meets Susannah, and she explains that he is one of the only doctors who would actually listen to her. He takes into account that she was having seizures, numbness on one side of her body, and that her heart rate fluctuated between too high and too low. Then, he makes an unusual choice. Noting the similarity between Cahalan’s symptoms and that of an Alzheimer’s patient. Dr. Najjar asks her to draw a picture of a clock. When Cahalan draws all of the numbers on the right side of the clock, Dr. Najjar knows her illness is biological; the right side of the brain was impaired causing her to neglect the left side of the clock. He sensed there was inflammation, and sharpened his lead in narrowing an autoimmune disease, quelling the Cahalans’ fear that their daughter would be misdiagnosed with a psychiatric disorder and institutionalized for the rest of her life.
Cahalan made history in April of 2010 when she was the 217th person in the world to be diagnosed with Anti NMDA Receptor Autoimmune Encephalitis. This rare form of encephalitis occurs when the body attacks the NMDA receptors of the body, which are highly concentrated in the hypocampus. At the time of Cahalan’s diagnosis this autoimmune disease, which often mimics symptoms of schizophrenia, had just a 20% diagnostic rate. With steroids and immune therapies, 80% of people recover from it. Luckily, Cahalan is one of them. But, Cahalan highlights those that have never been diagnosed and cured, and suffered the stigma of having a “nervous breakdown” or having gone “insane”–think as far back as the Salem With Trials or “Joan of Arc”. Many have died (either deteriorated naturally or were put to death) over centuries as a result of this undiagnosed illness.
There is a 20% chance of regressing, and some patients, especially those whose cases are not caught soon enough, simply die. But, Cahalan holds on to hope that this will not happen to her. Now 28, she is doing remarkably well. She has returned to her position at the NY Post in the years following her illness. In fact, her book grew out of an early article she wrote for the Post chronicling her illness, called My Mysterious Lost Month of Madness. She is still with her boyfriend Stephen.
It was a slim streak of luck that saved Cahalan. We hope you find this read as humbling and inspiring as we did.
Kate Bader-Autoimmune Ally