In 2009, I lost my mind, my memory and my identity. A year later, I battled to right those wrongs the only way I know how: Write about it.
Writing has always given me a sense of control, a way to map out and chart my own feelings and actions. I still have journals that date back to elementary school; I toiled away as editor of my high school newspaper; and I spent many late nights hunched over a keyboard at Washington University’s Olin Library wrestling with my budding voice.
After I graduated from Wash. U. in 2007, I joined the staff of The New York Post, where I continued to write, this time about criminals and celebrities, never about myself. Reporting in New York City is nutty and unpredictable, so much so that I nearly ignored the fact that my life was rapidly falling apart.
The signs start innocuously. I thought I had bed bugs when I didn’t. I believed that my boyfriend, an honest and forthright musician named Stephen, was cheating on me with his ex, when he wasn’t. I became convinced that my job was in jeopardy, so I stopped going. And when I did go, I could hardly make heads or tails of my interview subjects.
Later, I had my first in a series of grand mal seizures. Stephen watched in horror as my body shook and blood and foam spurted out of my mouth.
I would spend the next month of my life in a hospital bed under guard and constantly monitored. At one point, I actively hallucinated that I was on the news and the nurses and fellow patients were spying on me, ready to sell “my story” to my own newspaper. Doctors thought I might be suffering from schizoaffective disorder, a psychiatric condition that combines features of schizophrenia and bipolar disorder; I believed that I had “multiple personality disorder.”
Eventually, after three weeks in the hospital, one brilliant doctor was able — through a simple but creative test — to make a diagnosis. I was not suffering from a psychiatric disorder, but a rare and treatable autoimmune disease, called anti-NMDA-receptor encephalitis, which occurs when the body’s immune system attacks the brain.
Recovery, during which time I was treated with steroids and immune therapies, was a slow onward march. When I left the hospital, I couldn’t read or write, the two things that had once defined me.
Six months later, I recovered enough to return to the Post, where I was assigned my first big story in nearly a year: write about this so-called month of madness.
It was a Herculean task. Most of that time was lost because my memory had been so severely impaired. What’s more, I didn’t really want to remember the worst of it. But I pushed forward in spite of it all. The article was published in October 2009.
After that, I realized I had a responsibility to tell my tale in a larger way and began to mull the idea of writing a book. I spent the next year, still slowly recovering, as an investigator of the self, burrowing away into the darkest moments of my life. I interviewed doctors and nurses, interrogated family and friends, read through thousands of pages of medical records, and even watched videos of myself in the hospital at my most vulnerable and psychotic.
This was not an easy choice. The project was at times painful and trying. I cut myself off from “real life” and entered the very lonely author’s world surrounded only by my own inner suffering. But in the end, I can say with absolute certainty that this project was by far the most rewarding experience of my life. I have a sense of control over this “lost time,” and I’m now finally able to move on from it.
Susannah Cahalan is author of The New York Times best-selling book Brain on Fire: My Month of Madness. She graduated with a bachelor of arts in English literature from Washington University in 2007.