On spotting the title, Brain on Fire: My Month of Madness, I automatically assumed major mental illness, probably schizophrenia or bipolar disorder. But the author, Susannah Cahalan, isn’t so lucky. What she has is way worse: a rare and maddeningly enigmatic disease called NMDA autoimmune encephalitis. She is only the 217th person worldwide to be diagnosed since 2007 when this scourge was identified.
Before her baffling and complex symptoms, suggestive of assorted mental and physical ailments, erupted, Cahalan was a rising 20-something star journalist at the New York Post. A hip young New Yorker, living in Hell’s Kitchen, she had an enviable life and a bright future that included a cool beau, a close circle of colleagues and friends, as well as dedicated, though divorced, parents.
And then one day, out of nowhere, she awoke with two mysterious marks on one arm—marks she took to be bedbug bites. With obsessive, compulsive determination, she brought in exterminators, turned her digs inside out and generally went crazy with her probably-unfounded conviction. (That said, bites could have been a culprit, since autoimmune diseases are usually two-thirds environmental and one third genetic in origin.) And there began her descent into madness. She writes, “I was a slave to the machinations of my aberrant brain.”
She became another person, unrecognizable to everyone, spinning in a vortex of bizarre behaviours, such as nonstop lip-smacking and rigid, outstretched arms. At times, she even became comatose. Meanwhile, her weird, manic mannerisms were matched by a dizzying display of what appeared to be psychiatric symptoms.
Absurdly, since Cahalan wasn’t much of a drinker, her family doctor diagnosed alcohol psychosis. A succession of other investigators, including prominent specialists, mostly at the New York University Langone Medical Center, tried, unsuccessfully to identify her disease. Many prospects were suspected, from epilepsy to manic depression. But none of the labels quite fit and none of the treatments slowed her deterioration. Eventually, Dr. Souhel Najjar, who tackles mysterious cases, was able to give her rare symptoms a name and a course – a long and difficult course – of treatment.
Throughout, Calahan fought tenaciously for her recovery while her devoted boyfriend and parents kept watch.
The author largely recovers, though, small mercies, due to profound memory loss that comes with the disease, she remembers only very little of her ordeal. “It’s impossible for me to imagine what it must have been like to be her,” she remarks. For the book, she reconstructs her story from journals her parents kept, from videos taken of her during her hospital stay and from research. The author makes it her mission to shed light on this horrid disease.
But readers beware, inspiring though the story, the book is a rough read. If you’re squeamish like me, you’ll flip through the graphic descriptions of her medical procedures, especially the brain biopsy. If, like me, you’re not a science whiz, your eyes will glaze over the long technical explanations. But if you’re in the neuro-science field, you’ll hang on every word because this memoir is as much a gift to leading-edge researchers as it is to the everyday reader. In short, it’s a remarkable project from a remarkable young woman who will change lives.
– Marlene Webber
Marlene Webber is a Toronto freelance writer and speaker. She specializes in mental disorders, including ADHD, fetal alcohol, conduct disorder, early trauma and attachment problems, as well as other disorders over-represented in adoptees and prison populations. She will be reviewing books about social issues for Living Toronto.