One day in 2009, twenty-four-year-old Susannah Cahalan woke up alone in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. A wristband marked her as a ‘flight risk,’ and her medical records—chronicling a monthlong hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability. About Susannah Cahalan’s Brain On Fire: My Month of Madness
A team of doctors would spend a month—and more than a million dollars—trying desperately to pin down a medical explanation for what had gone wrong. Meanwhile, as the days passed and her family, boyfriend, and friends helplessly stood watch by her bed, she began to move inexorably through psychosis into catatonia and, ultimately, toward death. Yet even as this period nearly tore her family apart, it offered an extraordinary testament to their faith in Susannah and their refusal to let her go. Then, at the last minute, celebrated neurologist Souhel Najjar joined her team and, with the help of a lucky, ingenious test, saved her life. He recognized the symptoms of a newly discovered autoimmune disorder in which the body attacks the brain, a disease now thought to be tied to both schizophrenia and autism, and perhaps the root of ‘demonic possessions’ throughout history.
If you’re young and previously healthy and have the kind of symptoms Cahalan first exhibits, doctors may think you have mono—a common illness, well known. If you then proceed to develop symptoms that resemble a messed up mind, your docs might think you’ve just been partying too much—or are way too stressed out.
That was the case with Cahalan until…
Her first violent seizure. Things could no longer be explained away so handily. This is the turning point she now perceives as the moment she lost her “sanity.”
She tells Dave Davies in an interview some of what was to follow:
I believed that I could age people with my mind. If I looked at them, wrinkles would form, and if I looked away, they would suddenly, magically get younger. And I believed that my father had murdered my stepmother. I believed all these incredibly paranoid — a huge, extreme example of persecution complex. And then as the days went on, I stopped being as psychotic, and I started entering into a catatonic stage, which was characterized by just complete lack of emotion, inability to relate, or to read, or hardly to be able to speak.
Multiple misdiagnoses later is when Cahalan became the 217th person in the world to find out she had anti-NMDA-receptor autoimmune encephalitis. Explains John Wilwol, BookForum:
Essentially, this means that an autoimmune disease compromised the ability for the neurons in Cahalan’s brain to talk to one another, silencing essential conversations that ‘are at the root of everything we do.’ Although she’s mostly recovered today, she now talks in her sleep every night, and when she compares pre- versus post-illness photos of herself, she sees ‘something altered, something lost—or gained.’
While the uncertainty proved maddening for her family members, however, it was also what bonded them together. Cahalan’s estranged parents, in particular, found a common purpose as a result of their daughter’s plight, putting her health before old hardships. After numerous tests revealed nothing, an observed increase of white blood cells in her cerebrospinal fluid eventually clued in medical professionals…Cahalan and her family embarked on the long, hard road to recovery. Through the lonesomeness of her illness, a community emerged, the members of which were dedicated to returning the author to her former life as a beloved daughter, sister, lover and friend.