August 20, 2013
Imagine that you wake up in a hospital room strapped to the bed, powerless to move or speak. You’re often thrown into violent fits of seizures, unable to communicate with your family and friends. Doctors cannot find an explanation for your sudden illness and are beginning to suspect your condition is psychological.
One day, a doctor asks you to perform a simple task—to draw the face of a clock—and the results lead to a momentous leap forward in your diagnosis of anti-NMDA receptor encephalitis, a rare autoimmune disease. Not only do you live to tell the tale, but you also pen a compelling and critically acclaimed memoir.
This is exactly what happened to celebrated New York Post reporter and author Susannah Cahalan when she was just 24 years old. Released last November, “Brain on Fire” tells the story of her illness through a lens of intense research and meticulous reporting.
The novel is also this month’s pick by Target’s Book Club, made up of team members who are just as passionate about great books as you are. Last week, the book club crew was treated to a visit by the author, who came to Target HQ in Minneapolis to read an excerpt and start insightful conversation.
Below, we chatted with Susannah about her incredible recovery and what it took to write this book.
In “Brain on Fire”, you’re piecing together a really emotional time in your life. What made you decide to write this book?
The idea to write the book all started when I wrote an article for the Post. That story grew out of a doctor’s visit to which my editor came. In the few days when I was writing the article, I realized there was so much more I wanted to uncover. After the article came out, the response was overwhelming. I got so many emails and phone calls from people who connected with what they had read. So many people could relate, in some way, to my story, and I knew I had to write a book – not only for myself, but to get the word out about the disease.
What were the most difficult things about writing this book?
There was the emotional difficulty—it was really hard to talk to my family about what happened. Because I didn’t remember anything, I had to rely on them to piece together events, and it was kind of like picking at wounds. Interviewing my father was the most difficult because he would get very emotional. Then there was the intellectual side—figuring out the science was fun, but very challenging. I went from having a high school biology background in science, to trying to make sense of this very complicated biological and neurological disease. That was hard, but the emotions were harder.
What do you hope readers will take away from your work?
I hope they will take away the importance of being an advocate for yourself, or if you can’t be an advocate for yourself, having someone who can speak for you. I think my family unit was key to my survival. It can be very intimidating if you’re in a situation where you’re sick or in the hospital, but it’s good to be able to ask questions and get a second opinion.
How did you research the portions of your book in which you were unaware of what was going on around you?
Luckily, I have several years experience working as a journalist so I knew I could piece things together using my medical records. I had thousands of pages of records at my disposal. I also interviewed my family, my friends, the doctors and the nurses. I also had videos of myself in the hospital. I was on an EEG floor, which is where they monitor you for seizures. Between those three things, I tried my hardest to get an accurate account of what happened.
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Can you explain how Dr. Souhel Najjar’s test of drawing the face of clock on a piece of paper gave you clues to your diagnoses?
At that point I had been in the hospital for three weeks, and they were throwing around a diagnosis of Schizoaffective Disorder—a psychiatric condition. Dr. Najjar ordered a sample test that is typically used for Alzheimer’s and stroke patients—not for people who are 24 years old. He asked me to draw the face of a clock, and I wrote all of the numbers on the right side and completely neglected the left hand side of the clock. That showed him that the right side of my brain was impaired because it’s responsible for the left field of vision—they’re contralateral. It was clearly not a psychiatric condition; no one with a mental disorder is going to have loss like that. Eventually a spinal tap confirmed my full diagnosis of anti-NMDA receptor encephalitis. The clock led them in the right direction.
How has the illness changed your outlook on life?
This book and everything that’s gone along with it has given me a sense of purpose in my life. I’m now an advocate for patients with this disease. I feel that I have a mission and I want to spread awareness, but I’m also really fascinated by health and financing research. I also know how lucky I was. I think staring at death so closely in the face when you’re young makes you more appreciative. I think I have a different perspective that is wiser than it would have been if I hadn’t gotten sick. I don’t really see it as a burden anymore; I almost see it as a gift.
This is your first book. Do you have any plans for a second?
I would love to do another book! I have a few ideas. It’s fun when you write a book that’s so personal, but it’s hard. I don’t think I want to write another memoir, but I know there’s a second book in me!
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