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 month-long hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability. Only weeks earlier, Susannah had been on the threshold of a new, adult life: a healthy, ambitious college grad a few months into her first serious relationship and a promising career as a cub reporter at a major New York newspaper. Who was the stranger who had taken over her body? What was happening to her mind?In this swift and breathtaking narrative, Susannah tells the astonishing true story of her inexplicable descent into madness and the brilliant, lifesaving diagnosis that nearly didn’t happen. 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.
Far more than simply a riveting read and a crackling medical mystery, Brain on Fire is the powerful account of one woman’s struggle to recapture her identity and to rediscover herself among the fragments left behind. Using all her considerable journalistic skills, and building from hospital records and surveillance video, interviews with family and friends, and excerpts from the deeply moving journal her father kept during her illness, Susannah pieces together the story of her “lost month” to write an unforgettable memoir about memory and identity, faith and love. It is an important, profoundly compelling tale of survival and perseverance that is destined to become a classic.
On Tuesday night, I had the privilege of attending this author’s lecture at the New York Public Library. I had first heard about this book, Brain On Fire at last year’s BEA Blogger’s Conference. I was immediately intrigued by her story.
I was grateful to be able to hear more about her story, not only directly from her, but also from the doctor who cured her, Dr. Souhel Najjar.
I was riveted listening to Susannah Cahalan’s discuss her account and read excerpts to us from her book, Brain On Fire.
Thankfully, her doctor, Dr. Najjar thought outside the box and actually listened to her parents too. If not, she would not be alive today to tell the story.
What all the doctors thought she had was paranoia, schizophrenia, bi-polar, etc… They basically wrote her off as delusional with psychiatric issues.
However, this was not the case at all. What Dr. Najjar discovered was that she had a rare disease called anti-NMDA receptor encephalitis. It’s basically an autoimmune disease causing inflammation to the brain.
It was wonderful to see her speaking and completely cured from this horrible and frightening disease which suddenly comes out of nowhere. One day she was fine and the next day she wasn’t.
I understand all too well what it’s like to suffer from an autoimmune disease. I have what is called fibromyalgia. It’s a virus that causes inflammation to the joints, tendons and muscles. It’s horribly painful. They do not know what causes is nor how to cure it.
There are a host of autoimmune diseases today, by the one that Susannah Cahalan had is the worst by far.
As a result of a reading her book after losing their small daughter to this disease, a couple joined another couple in starting the AutoImmune Encephalitis Alliance. They were also present at this talk and also premiered a short video on this disease.
What really stood out to me in the discussion and the questions posed, was the thought of how many people have been diagnosed with a psychiatric illness when they could in fact be suffering from anti-NMDA receptor encephalitis.
There is still yet much to be learned about this devastating disease.
If you are interested in learning more, I highly recommend reading and sharing with others, Brain On Fire. The more people know about this disease, the better.
Susannah Cahalan is a news reporter at the New York Post whose award-winning work has also been featured in The New York Times. She lives in Jersey City, New Jersey.
Dr. Najjar is an associate professor of neurology at the NYU Medical Center. He joined the Comprehensive Epilepsy Center in 1998 and serves as the director of the EEG Laboratory. Dr. Najjar is also the director of the Neuroscience Center at the Staten Island University Hospital. Dr. Najjar graduated from the Damascus Medical School in Damascus, Syria in 1983, and did his residency at the Albany medical College in Albany, NY, specializing in pathology and neurology. He also completed neuropathology and epilepsy fellowships at NYU Medical Center. His research interests include histological analysis and investigation of neuroinflammatory factors in surgically resected epileptic tissue.