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Non-Fiction Blog

New thinkers, mavericks and mavens

Interview with Susannah Cahalan

When my coworker put this book in my hands, she assured me that I would get through one page and be unable to put it down. So, I strolled to my desk, grabbed my lunch and got started. What followed was an afternoon of stolen glances into the book while attempting to focus on my work, a subway ride with my head buried in its pages and a long evening curled on my couch with my mouth hanging open in shock and surprise. Once you reach the last sentence of this memoir, you will know two things for sure: first, that this is a terrifyingly brave book that will forever change the way you think of the brain, and also, that Susannah Cahalan is one phenomenal woman.

Brain on Fire tells Susannah's personal experience with a neurological illness entitled Anti-NMDA-Receptor Autoimmune Encephalitis. In basic terms, Susannah's body was attacking her brain causing a variety of terrifying symptoms from psychosis to seizures to body numbness. Her memoir tells the story of how she went from a successful, vibrant woman in her twenties, to a paranoid, catatonic, unrecognizable version of herself. For the duration of her hospital stay, Susannah remembers almost nothing.  Brain on Fire is a tremendous account of this time period that Susannah has gathered from notes, medical reports, video footage of her in the hospital, personal accounts from friends, family and the medical staff, and from a journal her father kept.

I can imagine that very few things are more terrifying than mistrusting your own mind and body.  This memoir is a courageous and touching story in which Susannah exposes the rawest of emotions. Her conversational tone will make you feel as though she is sitting across from you in a coffee shop, recounting her haunting tale.

We were lucky enough to speak with Susannah about her stunning memoir.

Indigo Non-Fiction Blog (INFB): In an interview for BEA this year, you say that beauty can come out of terrible things. How has your life changed recently after this whole experience and having it now widely discussed in this memoir? 

Susannah Cahalan (SC): My life has so much meaning now than ever before. I have a mission, a goal to get the word out about this disease and to give some support and comfort to people out there suffering from known, undiagnosed, or not yet discovered diseases. It makes me – ever the optimist that I am – see getting this disease as some kind of gift rather than a tragedy.

INFB: With all the medical knowledge you have gained through this experience, do you find yourself particularly fascinated with the brain in your current work as a journalist? 

SC: Most certainly! Now I see almost everything I encounter through the lens of science and neurology (sometimes too much so…). I also tackle my stories differently. I’m a more sympathetic reporter. I think I can relate to suffering and hardship in a way that was impossible before and, because of it, I believe I’m a better writer and reporter.

INFB: You have allowed footage from security cameras in the hospital to be included in video interviews.  How haunting is it for you to see these intimate and haunting images repeatedly and not recognize the woman on the screen? 

SC: Seeing myself on those videos – with my dirty hair, my wild eyes, my emaciated frame – is unnerving. I can’t at all remember what it was like to be her, yet there it is, evidence that another version of myself once existed. And not only is she a stranger, but she’s frightening. She’s angry; she’s mad. I can’t quite put into words how it feels, but it does make you rethink our understanding of our own identity, something that I once thought was so fixed and rigid, can be upended so easily. That’s terrifying, probably the most upsetting thing I’ve learned while writing this book.

INFB: I was incredibly touched by the relationship between you and your boyfriend throughout the book.  After only being together for a few months prior to your experience, he remained one of your most stable supporters, along with your parents and step-parents. For me, as a reader, this was a truly beautiful love story. How did your relationship change once you had finally begun to feel like yourself again?

SC: It was hard at first. Our relationship had been turned upside down, gutted really, when it was made into a caregiver/patient relationship. But we weathered through that, too. When I first started getting back a bit of my old personality and confidence, I used to battle against his urge to baby me. Now our relationship is more complex than the one we had in the hospital room, it’s more nuanced, but it’s also more balanced. We do fight and quibble but it’s about insignificant things; it’s the big deal things that we know we can get through together.

INFB: Your parents play such an important part in your story. During your time in the hospital, your connection with your father deepened.  He seemed to wrestle with his own misgivings and turned to journaling as a means of coping. As a journalist yourself, can you speak to the cathartic nature of writing down your thoughts?  Also, as your health progressively improved, how did your relationship with your father change? 

SC: What an interesting way of looking at it! My father became a journalist! It’s true. When you write things down, you take ownership of the narrative with that journalistic distance, even when you truly have no control. That’s one of the reasons why I wanted to write this book, because I felt I wanted to wrest control over what happened to me and I think my father was trying to do the same thing.

My relationship with my father now is the strongest that it has ever been. And that is another beautiful thing that has come out of something so dark. I feel so lucky to have such a great relationship with him now and often wonder if we would have been as close if this hadn’t happened. 

INFB: Through this book and your call to readers to share their personal stories, you have truly become an inspirational advocate for awareness of Anti-NMDA-Receptor Autoimmune Encephalitis. The memoir is even dedicated to those suffering undiagnosed and similar neurological illnesses. How have you felt about the outreach you have received?

SC: Nothing can really prepare you for it. The horror and the desperation are hard to deal with and you want to help everyone, but you really can’t. But when you actually are able to help someone or to get someone though a terrible time by being there, either in spirit on the page or in person, it’s incredibly satisfying. So even with all the horror and desperation, I know that through this process I will truly help people and there’s nothing better than that.

Susannah is extremely active on Twitter and you can follow her at @scahalan. We would like to greatly thank Susannah for speaking with us and Simon & Schuster Canada for organizing the interview!


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