A 10th anniversary edition of 'Brain on Fire' was recently released. No one will be able to relate to it.”īoy, was she wrong. One editor told my agent, “The disease is too rare. I was rejected by all but one publishing house. That appearance galvanized me in my quest to spread awareness. By the second time I appeared on TODAY in 2012, I had learned of at least five people who received diagnoses after my appearance, including one TODAY producer who told me her child got tested and diagnosed after symptoms cropped up a year after that first segment. I knew that people enjoyed medical mysteries - “House” was one of the biggest shows on television at the time - but I had no clue that there was such a need for a story like mine. In the days that followed, I received hundreds of emails. I could never have dreamed what would come next. A month in - after a brain biopsy and several spinal taps - I received my diagnosis and became the 217th person in the world with a newly discovered form of immune-mediated brain disease called anti-NMDA receptor autoimmune encephalitis. By the second week in the hospital, I could no longer write my own name, couldn’t walk on my own, and barely could utter full sentences. Their working diagnosis was schizoaffective disorder. After grand mal seizures and a delusional breakdown at my father’s house, I was finally hospitalized. Weeks later I became manic and psychotic. I was lethargic, depressed, unmotivated - and completely obsessed by the notion that bed bugs had invaded my apartment. My initial symptoms emerged a few months before my hospitalization. I remember bracing myself as I tried to anticipate what it would be like to say such intimate and impossible things to millions of people.

I didn’t remember my mom’s wavering voice as she spoke about my seizure or my dad breaking down as he read from his diaries about me. I remember the bright lights of the studio and stifling the urge to laugh when I heard my name on the prerecorded segment about “one woman’s month of madness.” There was the grainy hospital footage of a woman - of me, I remind myself - hallucinating, calling out for help: “I’m on the TV.” I remember a flash of self-conscious clarity when I noticed my failed attempt to curl my hair for the interview. Even today, looking back, I can still feel the prickly sensation akin to dread located in the pit of my stomach. It was January 2010, a few weeks before my 25th birthday. I appeared on TODAY 10 months after I learned how to speak again.

Brain on fire cahalan