'Brain on Fire': A Writer Possessed
In 2009, a rare autoimmune disease grabbed writer Susannah Cahalan and plunged her into a nightmare world of paranoia, psychosis, and ultimately, catatonia. In another era, it’s likely she would have been permanently institutionalized or given a lobotomy; in another culture, she might have been exorcised for demonic possession.
Yahoo Health: Autoimmune Disease
With taut, horror-movie plotting, Cahalan’s new memoir, ‘Brain on Fire: My Month of Madness’ pieces together her utter physical and mental breakdown, her terrifying lost month in the hospital, and the grueling year it took to recover.
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Before she mysteriously contracted the disease, Cahalan was a bright, outgoing, and ambitious 24-year-old reporter for the New York Post. After exhibiting flu-like symptoms that were initially diagnosed as mono, she suddenly began experiencing delusions and behaving erratically. Within a few weeks, she became increasingly abusive, moody, and paranoid. Her doctors brushed off her condition as a result of too much partying and stress, but her first violent seizure signaled there was something critically askew.
Late one night, her guttural moans and grating squeaks woke up her boyfriend, Stephen. “My arms suddenly whipped out in front of me like, like a mummy, as my eyes rolled back and my body stiffened,” she writes. “I was gasping for air. My body continued to stiffen as I inhaled repeatedly, with no exhale. Blood and foam began to spurt through clenched teeth. Terrified, [he] stifled a panicked cry and for a second he stared, frozen, at my shaking body.” She now describes her seizures as eerily similar to the character Regan’s outbursts in ‘The Exorcist.’
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Cahalan says that this moment “marked the line between sanity and insanity.” She was admitted to the New York University Medical Center, and spent a month that was forever erased from her memory as her brain short-circuited. Only later, by cobbling together physician’s notes and her father’s journal, and viewing chilling hospital videos would she fully understand the extent of her disintegration. Her frontal lobe function was almost at zero and the medical staff couldn’t be sure the right hemisphere of her brain would be salvageable. Although $1 million worth of medical tests provided few clues to her illness, her parents never gave up. “They were completely focused on finding an answer,” Cahalan tells Shine.
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Her savior, who she lovingly refers to as Dr. House, was Souhel Najjar, a Syrian immigrant who was deemed “stupid” as a child, and told he would never amount to anything. “His life experience shaped who he is as a doctor, and he also happens to be brilliant,” says Cahalan. “He’s so adamant about getting the full sense of you as a person…he was told that he was too slow for his elementary school. He’s made it his life’s mission to not let people fall through the cracks.”
While her other doctors had all but given up on finding a diagnosis, Najjar swiftly ordered a brain biopsy that would confirm his hunch that she was suffering from an autoimmune disease that had only been identified two years earlier. Cahalan was the 217th person in the world to be diagnosed with anti-NDMA-receptor encephalitis, a relatively treatable illness that causes swelling in the right lobe of the brain. Untreated, she may have sunk into coma and eventually died.
Najjar also provided the title to her book. “At a pivotal moment in my disease, he pulled my parents out of the hospital room and literally said to them, ‘Her brain is on fire,’” Cahalan tells Shine. “At that point, they felt it was a relief to hear that. Describing it in layman’s terms gave them some hope.”
Cahalan wants her story to help people who might “otherwise get lost in the system.” She tells Shine, “We don’t understand how neurological autoimmune disorders work. They are so under diagnosed. About 75% occur in women who may get told they are just stressed. Or they are hysterical. My disease was only discovered in 2007—how many more diseases haven’t been identified yet?”
‘Brain on Fire’ is available November 13.