At just 24 years old, Susannah Cahalan was struck down by a mysterious illness. What happened?
Reporter Susannnah Cahalan woke up in a hospital bed unable to speak or move. Just days earlier she’d been perfectly fine. In her riveting new memoir, Brain on Fire, she outlines what happened — and how the medical establishment can get things so very wrong.
What made you want to become a writer?
For as long as I can remember, I have always wanted to be a writer. I can trace a distinct memory back to fourth grade, when I wrote a “book” about familial dysfunction based on the afternoons I spent glued to the TV watching the soap opera “The Bold and the Beautiful” with my babysitter. The book itself was deemed too scandalous for my elementary school class, especially when I used the word “bastard” and was barred from reading anymore aloud. I think that experience cemented my decision to one day be a writer.
Why did you decide to write this book?
There are many reasons why I decided to write this book at this point in time, but two clear explanations jump out at me. For one, I jumped at the opportunity to exhume this lost time, one that I had no memory of or real personal access to. Writing this book gave me a chance at catharsis, something I would have been able to achieve without the weight of a book-length project. The second—and by far the most important reason—was that I wanted to get my story out to as many people as possible, and I felt that writing this book would be the best way to do just that.
How long did it take you to write?
It took me a year to write the book and then another six months or so for edits and putting all the pieces together with my editor.
How did it feel to write the book?
Emotionally the most difficult section of the book to write was the final part, otherwise known as the recovery section. Because it has the most “memoir-like” tone and because the thoughts and feelings were so personal and real to me (unlike those dark and unfocused parts of my months when I was in the throes of the illness), I found it far more painful to maneuver through. Unsurprisingly, this section required the most rewriting! From moment one, I was always fighting the idea of “writing a memoir,” but I was finally convinced by my editor that those serious questions, the investigation of the self was necessary to the story. And she was right. Now, that’s my favorite part of the entire book.
How did you re-create all those missing moments when you were unconscious or perhaps not fully aware of what was going on?
Recreating those missing sections took a bit of detective work. And thankfully I’ve had years of working at a tabloid under my belt, an occupation which has toughened me to the rigors of reporting. To do this, I had to track down any primary documents: medical records, emails, diaries, my parent’s shared hospital journal, etc. And then I had to fill in with interviews. I questioned everyone from the doctors and nurses on my floor to my parents, boyfriends, and friends.
What research did you do?
Along with the detective work I did to recreate that lost time, I also had to understand how the immune system and brain systems work (and then try to understand what happens when they malfunction). This was quite the undertaking, especially for someone whose highest level of study in these fields was in high school biology. So I first started with trying to understand the “stupid questions” and got a book on immunology and neurology “for dummies” — no kidding — and started from the very bottom before I later started asking more advanced questions.
What surprised you most about the experience you went through from a medical point of view? From a personal point of view?
I’m not quite certain how to answer this question, because so much of it was a surprise; however, I believe that the more shocking elements of that time for my whole family were the multitude of misdiagnoses from some of the top physicians in New York City. That was a shock and a lesson for us all. My own greatest surprise is more personal. It’s jarring to realize, especially at such a young age, how much we really are victim to our own bodies; how one when small biological hiccup can cause you to lose everything.
Has the focus of what you write about professionally altered since your experience?
Most certainly. Now I see everything through the lens of my experience and the aspects of medical science that I learned. I gravitate now to science in ways I never did before. And I also believe I have more sympathy for people with mental illnesses than I ever did before, which colors the way I see many news stories, especially those where I perceive there might be a misdiagnoses and mistreatment of people with mental illnesses.
How has life changed for you since this all went on, if at all?
In many ways, I’ve skipped over my twenties and went full-on into a more settled existence. I live with my boyfriend (the same Stephen in the book) and my dog, Gus. Maybe this is a natural progression from one’s middle twenties to late twenties, but somehow I feel that the disease grounded me and slowed me down a bit. I think I’d be in a very different situation had this not happened to me.
How would you say you’ve changed?
This is such a difficult question. One concrete answer that I can give is that I have more purpose to my life now than ever before. I feel as if I’m here for a reason, as cheesy as that might sound, and that gives me a sense of meaning that my life was missing before.
What do you hope people get out of reading Brain on Fire?
There are many things I hope that many different people will get out of Brain on Fire: I hope those suffering from some solace; I hope that families find inspiration; I hope that doctors will find some insight in these pages about how best to treat their patients; I hope everyone can learn something about their bodies that they might not have known before. I think my editor put it best when she said that she held her loved ones a little tighter after reading my book—I hope that happens for readers, too.
What advice would you give people going through a medical crisis?
I don’t know if I’m the right person to answer this question. I feel that my family might be better equipped. But I will say that the best thing you can do in a medical crisis for someone else is to be an advocate. Everyone needs a support structure, especially during times of crisis, and it’s essential that when someone can’t fight for herself, she has a team of people willing to do battle for her.
Would you write another book, do you think? Are you working on something?
I’ve officially gotten the book writing bug and plan to write another one very soon. Right now everything is in the early research stage, so nothing concrete to say just yet.
What was the most interesting thing you’ve discovered about writing a book as opposed to a newspaper article?
Voice plays such a primary role in a longer form piece rather than a newspaper piece and it’s been such a fun journey finding my own voice after years of writing in a specific style for a tabloid newspaper.