By Susannah Cahalan

Author of Brain on Fire and The Great Pretender. 

I wrote my first “novel” in elementary school about a family in the throes of divorce, years before my parents would finally get one. Middle school diaries are filled with various attempts to make sense of the sticky intricacies of female friendship. I joined the student newspaper in high school and began writing for an audience, but at the core I was always writing for myself as a way to try to figure out how I really felt.

Those blank pages were there for me when I was struck by autoimmune encephalitis in 2009. Though I was far too impaired to write during my month-long hospital stay, one of my earliest memories from my recovery was cracking open the spine of a leather-bound notebook and starting to write. The early entries are simple and sometimes dull - I wrote about the weather, boredom, and my unfamiliar new body that had been altered by the steroid treatments. I wasn’t yet capable of asking the hard questions - How was I so easily able to so lose my grip on reality? Who am I after encephalitis? How have I changed? Is this change permanent? Will I ever be the same?

Then came the chance to make sense of it all on a grand scale. I started writing Brain on Fire about a year after my diagnosis, still in the midst of my recovery (though I didn’t want to accept this at the time). Suddenly I was face-to-face with those difficult questions. I learned about all the shocking ways that I had behaved when I was sick, interviewed friends and family about that lost time to recreate it, and gained a greater appreciation for the kind of hell my caregivers went through to get me a diagnosis. I felt gratitude, a little bit of embarrassment, and a touch of sympathy for myself. Writing about that time through the eyes of others allowed me to be kind to myself in ways I would never have allowed had I not put pen to paper.

I thought I was done writing about the time when Brain on Fire came out. But so many questions remained. I became obsessed with how easily I lost my grip on reality, my very self. And then there were the stories of others, those who had similar experiences to my own, those who faced misdiagnosis, mistreatment, who were marginalised or ignored because their symptoms were emotional or psychiatric. I needed to ask other questions: Why do we distinguish between the brain and the mind? Is there really a stark difference between the physical and the mental? What is mental illness anyway?

Out of these questions came my second book, The Great Pretender, which follows modern medicine’s attempts to answer those questions through the story of one charismatic Stanford psychologist named David Rosenhan. He and seven other volunteers went undercover in psychiatric hospitals across the United States to ask the same question that I had been obsessed with: “If sanity and insanity exist, how shall we know them?”

I followed this thread for six years, which morphed from an interest to an obsession to an investigation, but along the way the page was there for me, giving me an opportunity to make sense of those questions that had haunted me after surviving encephalitis. Now I have an appreciation not only for what I went through, but also for my illnesses' place in the modern history of medicine. I am doubly aware of how lucky I am and how far we have yet to go. And I am so grateful for this newfound insight.

Writing might not be the path for everyone - perhaps for some it’s sewing or soccer or swing dancing. But one thing I learned about surviving a brain illness is this: If you can find the one thing that helps you come alive, that helps you beat back the voices of doubt and uncertainty, if you can find that thing that challenges you and emboldens you, if you can wrest back a little control in a life that has spun so wildly out of our hands, hold onto it tightly. Embrace it, cherish it, bring it with you on this uncertain path - it is yours and no one can take it from you.

Thank you for hearing a little bit about my path. I wish you a warm World Encephalitis Day! The community is a remarkable one and I feel honoured to be a part of it. I’m so proud to be a card-carrying member of the Encephalitis Society!

With love,

Susannah Cahalan

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