How rare is the neurological disorder known as Anti-NMDA-Receptor Autoimmune Encephalitis? Susannah Cahalan is only 217th person in history to be diagnosed with it. One day Cahalan was a successful, 24-year-old reporter at the New York Post. The next—and for a month thereafter—she was strapped to a hospital bed, nearly paralyzed and slipping from delirium to catatonia. Her new memoir Brain on Fire: My Month of Madness is a stark account of the mysterious malady that wiped out a month of her memory and almost killed her. In this Zola Q&A, the author discusses the surprising role books played in her recovery and the unique challenge of chronicling an experience she can’t remember.
Zola: One of the effects of your illness is memory loss. Since you remember little of the month you spent in the hospital, you had to interview dozens of people to help recreate your ordeal. What was that process like?
Susannah Cahalan: I often liken it to Tom Sawyer watching his own funeral. I got to hear all these things people would probably never tell me had I not been in danger of dying. I was able to broach unusual subjects with my closest loved ones and get sometimes candid, sometimes overly complimentary answers. You really can get a warped sense of yourself after going through an interview process like this, but hopefully I’ve retained a measure of journalistic distance about it all.
Zola: Did writing the book help trigger any memories?
SC: Initially, I tried handwriting instead of typing. I woke up really early in the morning or started writing late into the night trying to get access to a “lost” part of my self. But it didn’t happen.
Zola: What did you read to learn how to read again?
SC: My cousin Hannah told me that I asked her for a copy of The Catcher in the Rye when I was in the hospital. Because I couldn’t read, I asked her to read it to me. For some reason, I seemed to have this irrational urge to read that book. So when I got better, that is one of the first books I recall reading. I don’t know what that says about my cognitive or emotional state at that time.
But to really learn to read, as in “build up my vocabulary,” which I believed I lost, I started reading Infinite Jest by David Foster Wallace because an arrogant professor was shocked that I hadn’t yet read it in college. I kept a pen by me and as I read filled a notebook with words that I didn’t know how to define. I only got about halfway through that 1,000-page book when I gave up. I had realized that I didn’t at all even understand what was going on. Again, I don’t know if that’s a function of the book itself or of my state of mind at the time.
Zola: Have you read any other books that helped you cope with your experience?
SC: There are so many incredible “illness memoirs”—though I don’t really like using that term. The Year of Magical Thinking by Joan Didion was incredibly comforting to me, even though she was on the other side of that suffering. I also read a magnificent first-person account of an early 20th century playwright’s [Frigyes Karinthy] struggle with a brain tumor called A Journey Round My Skull.
This article was updated on September 29, 2014
This article originally appeared on Zola Books.