Brain on Fire: My Month of Madness Read online

  Brain on Fire: My Month of Madness

  Susannah Cahalan

  One day in 2009, twenty-four-year-old Susannah Cahalan woke up alone in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. A wristband marked her as a “flight risk,” and her medical records—chronicling a monthlong hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability. Only weeks earlier, Susannah had been on the threshold of a new, adult life: a healthy, ambitious college grad a few months into her first serious relationship and a promising career as a cub reporter at a major New York newspaper. Who was the stranger who had taken over her body? What was happening to her mind?

  In this swift and breathtaking narrative, Susannah tells the astonishing true story of her inexplicable descent into madness and the brilliant, lifesaving diagnosis that nearly didn’t happen. A team of doctors would spend a month—and more than a million dollars—trying desperately to pin down a medical explanation for what had gone wrong. Meanwhile, as the days passed and her family, boyfriend, and friends helplessly stood watch by her bed, she began to move inexorably through psychosis into catatonia and, ultimately, toward death. Yet even as this period nearly tore her family apart, it offered an extraordinary testament to their faith in Susannah and their refusal to let her go.

  Then, at the last minute, celebrated neurologist Souhel Najjar joined her team and, with the help of a lucky, ingenious test, saved her life. He recognized the symptoms of a newly discovered autoimmune disorder in which the body attacks the brain, a disease now thought to be tied to both schizophrenia and autism, and perhaps the root of “demonic possessions” throughout history.

  Far more than simply a riveting read and a crackling medical mystery, Brain on Fire is the powerful account of one woman’s struggle to recapture her identity and to rediscover herself among the fragments left behind. Using all her considerable journalistic skills, and building from hospital records and surveillance video, interviews with family and friends, and excerpts from the deeply moving journal her father kept during her illness, Susannah pieces together the story of her “lost month” to write an unforgettable memoir about memory and identity, faith and love. It is an important, profoundly compelling tale of survival and perseverance that is destined to become a classic.

  Susannah Cahalan

  BRAIN ON FIRE

  My Month of Madness

  Dedicated to those without a diagnosis

  AUTHOR’S NOTE

  The existence of forgetting has never been proved: we only know that some things do not come to our mind when we want them to.

  —FRIEDRICH NIETZSCHE

  Because of the nature of my illness, and its effect on my brain, I remember only flashes of actual events, and brief but vivid hallucinations, from the months in which this story takes place. The vast majority of that time remains blank or capriciously hazy. Because I am physically incapable of remembering that time, writing this book has been an exercise in my comprehending what was lost. Using the skills I’ve learned as a journalist, I’ve made use of the evidence available—hundreds of interviews with doctors, nurses, friends, and family; thousands of pages of medical records; my father’s journal from this period; the hospital notebook that my divorced parents used to communicate with each other; snippets of video footage of me taken by hospital cameras during my stay; and notebooks upon notebooks of recollections, consultations, and impressions—to help me re-create this evasive past. I have changed some names and defining characteristics, but otherwise this is wholly a work of nonfiction, a blend of memoir and reportage.

  Even still, I readily admit that I’m an unreliable source. No matter how much research I’ve done, the consciousness that defines me as a person wasn’t present then. Plus, I’m biased. It’s my life, and so at the core of this story is the old problem of journalism, made a hundredfold messier. There are undoubtedly things that I have gotten wrong, mysteries I will never solve, and many moments left forgotten and unwritten. What is left, then, is a journalist’s inquiry into that deepest part of the self—personality, memory, identity—in an attempt to pick up and understand the pieces left behind.

  PREFACE

  At first, there’s just darkness and silence.

  “Are my eyes open? Hello?”

  I can’t tell if I’m moving my mouth or if there’s even anyone to ask. It’s too dark to see. I blink once, twice, three times. There is a dull foreboding in the pit of my stomach. That, I recognize. My thoughts translate only slowly into language, as if emerging from a pot of molasses. Word by word the questions come: Where am I? Why does my scalp itch? Where is everyone? Then the world around me comes gradually into view, beginning as a pinhole, its diameter steadily expanding. Objects emerge from the murk and sharpen into focus. After a moment I recognize them: TV, curtain, bed.

  I know immediately that I need to get out of here. I lurch forward, but something snaps against me. My fingers find a thick mesh vest at my waist holding me to the bed like a—what’s the word?—straitjacket. The vest connects to two cold metal side rails. I wrap my hands around the rails and pull up, but again the straps dig into my chest, yielding only a few inches. There’s an unopened window to my right that looks onto a street. Cars, yellow cars. Taxis. I am in New York. Home.

  Before the relief finishes washing over me, though, I see her. The purple lady. She is staring at me.

  “Help!” I shout. Her expression never changes, as if I hadn’t said a thing. I shove myself against the straps again.

  “Don’t you go doing that,” she croons in a familiar Jamaican accent.

  “Sybil?” But it couldn’t be. Sybil was my childhood babysitter. I haven’t seen her since I was a child. Why would she choose today to reenter my life? “Sybil? Where am I?”

  “The hospital. You better calm down.” It’s not Sybil.

  “It hurts.”

  The purple lady moves closer, her breasts brushing against my face as she bends across me to unhook the restraints, starting on the right and moving to the left. With my arms free, I instinctually raise my right hand to scratch my head. But instead of hair and scalp, I find a cotton hat. I rip it off, suddenly angry, and raise both hands to inspect my head further. I feel rows and rows of plastic wires. I pluck one out—which makes my scalp sting—and lower it to eye level; it’s pink. On my wrist is an orange plastic band. I squint, unable to focus on the words, but after a few seconds, the block letters sharpen: FLIGHT RISK.

  PART ONE

  CRAZY

  I have felt that odd whirr of wings in the head.

  —VIRGINIA WOOLF, A Writer’s Diary: Being Extracts from the Diary of Virginia Woolf

  CHAPTER 1

  BEDBUG BLUES

  Maybe it all began with a bug bite, from a bedbug that didn’t exist.

  One morning, I’d woken up to find two red dots on the main purplish-blue vein running down my left arm. It was early 2009, and New York City was awash in bedbug scares: they infested offices, clothing stores, movie theaters, and park benches. Though I wasn’t naturally a worrier, my dreams had been occupied for two nights straight by finger-long bedbugs. It was a reasonable concern, though after carefully scouring the apartment, I couldn’t find a single bug or any evidence of their presence. Except those two bites. I even called in an exterminator to check out my apartment, an overworked Hispanic man who combed the whole place, lifting up my sofa bed and shining a flashlight into places I had never before thought to clean. He proclaimed my studio bug free. That seemed unlikely, so I asked for a follow-up appointment for him to spray. To his credit, he urged me to wait before shelling out an astronomical sum to do battle against what
he seemed to think was an imaginary infestation. But I pressed him to do it, convinced that my apartment, my bed, my body had been overrun by bugs. He agreed to return and exterminate.

  Concerned as I was, I tried to conceal my growing unease from my coworkers. Understandably, no one wanted to be associated with a person with a bedbug problem. So at work the following day, I walked as nonchalantly as possible through the newsroom of the New York Post to my cubicle. I was careful to conceal my bites and tried to appear casual, normal. Not that “normal” means a lot at the Post.

  Though it’s notoriously obsessed with what’s new, the Post is nearly as old as the nation itself. Established by Alexander Hamilton in 1801, it is the longest continually run newspaper in the country. In its first century alone, the paper crusaded for the abolition movement and helped promote the creation of Central Park. Today the newsroom itself is cavernous yet airless, filled with rows of open cubicles and a glut of filing cabinets packed with decades of unused, forgotten documents. The walls are freckled with clocks that don’t run, dead flowers hung upside down to dry, a picture of a monkey riding a border collie, and a big foam Six Flags finger, all memorabilia from reporters’ assignments. The PCs are ancient, the copy machines the size of small ponies. A small utility closet that once served as a smoking room now holds supplies, and is marked by a weathered sign warning that the smoking room no longer exists, as if someone might accidentally wander in for a cigarette among the monitors and video equipment. This has been my eccentric little world for the past seven years, since I started here as a seventeen-year-old intern.

  Especially around deadline, the room buzzes with activity—keyboards clacking, editors yelling, reporters cackling—the perfect stereotype of a tabloid newsroom.

  “Where’s the fucking picture to go with this caption?”

  “How is it that he didn’t know she was a prostitute?”

  “What color were the socks of the guy who jumped off the bridge?”

  It’s like a bar without alcohol, filled with adrenaline-soaked news junkies. The cast of characters here is unique to the Post: the brightest headline writers in the business, the hardened newshounds hunting after exclusives, and type-A workaholics who possess the chameleon ability to either befriend or antagonize almost anyone. Still, on most days, the newsroom is subdued, as everyone silently combs through court documents, interviews sources, or reads newspapers. Often, like today, the newsroom is as quiet as a morgue.

  Heading toward my desk to start the day, I wove through the rows of cubicles marked by green Manhattan street signs: Liberty Street, Nassau Street, Pine Street, and William Street, throwbacks to a time when the Post was actually flanked by those downtown streets in its previous home at the South Street Seaport. My desk is at Pine Street. Amid the silence, I slid into my seat beside Angela, my closest friend at the paper, and gave her a tense smile. Trying not to let my question echo too loudly across the noiseless room, I asked, “You know anything about bedbug bites?”

  I often joked that if I ever had a daughter, I’d want her to be like Angela. In many ways, she is my newsroom hero. When I first met her, three years before, she was a soft-spoken, shy young woman from Queens, only a few years older than me. She had arrived at the Post from a small weekly paper and since then had matured under the pressure of a big-city tabloid into one of the Post’s most talented reporters, churning out reams of our best stories. Most late Friday nights, you’d find Angela writing four stories on split screens simultaneously. I couldn’t help but look up to her. Now I really needed her advice.

  Hearing that dreaded word, bedbugs, Angela scooted her chair away from mine. “Don’t tell me you have them,” she said with an impish smile. I started to show her my arm, but before I could get into my tale of woe, my phone rang.

  “You ready?” It was the new Sunday editor, Steve. He was just barely in his midthirties, yet he had already been named head editor of the Sunday paper, the section I worked for, and despite his friendliness, he intimidated me. Every Tuesday, each reporter had a pitch meeting to showcase some of his or her ideas for that Sunday’s paper. At the sound of his voice, I realized with panic that I was completely unprepared for this week’s meeting. Usually I had at least three coherent ideas to pitch; they weren’t always great, but I always had something. Now I had nothing, not even enough to bluff my way through the next five minutes. How had I let that happen? This meeting was impossible to forget, a weekly ritual that we all fastidiously prepared for, even during days off.

  Bedbugs forgotten, I widened my eyes at Angela as I stood back up, gamely hoping it all would work out once I got to Steve’s office.

  Nervously, I walked back down “Pine Street” and into Steve’s office. I sat down next to Paul, the Sunday news editor and close friend who had mentored me since I was a sophomore in college, giving him a nod but avoiding direct eye contact. I readjusted my scratched-up wide-framed Annie Hall glasses, which a publicist friend once described as my own form of birth control because “no one will sleep with you with those on.”

  We sat there in silence for a moment, as I tried to let myself be comforted by Paul’s familiar, larger-than-life presence. With his shock of prematurely white hair and his propensity to toss the word fuck around like a preposition, he is the essence of a throwback newsman and a brilliant editor.

  He had given me a shot as a reporter during the summer of my sophomore year of college after a family friend introduced us. After a few years in which I worked as a runner, covering breaking news and feeding information to another reporter to write the piece, Paul offered me my first big assignment: an article on the debauchery at a New York University fraternity house. When I returned with a story and pictures of me playing beer pong, he was impressed with my chutzpah; even though the exposé never ran, he assigned me more stories until I had been hired on full time in 2008. Now, as I sat in Steve’s office wholly unprepared, I couldn’t help but feel like a work in progress, not worthy of Paul’s faith and respect.

  The silence deepened until I looked up. Steve and Paul were staring at me expectantly, so I just started talking, hoping something would come. “I saw this story on a blog… ,” I said, desperately plucking up wisps of half-formed ideas.

  “That’s really just not good enough,” Steve interrupted. “You need to be bringing in better stuff than this. Okay? Please don’t come in with nothing again.” Paul nodded, his face blazing red. For the first time since I’d started working on my high school newspaper, journalism disagreed with me. I left the meeting furious at myself and bewildered by my own ineptitude.

  “You okay?” Angela asked as I returned to my desk.

  “Yeah, you know, I’m just bad at my job. No big deal,” I joked grimly.

  She laughed, revealing a few charmingly crooked incisor teeth. “Oh, come on, Susannah. What happened? Don’t take it seriously. You’re a pro.”

  “Thanks, Ang,” I said, sipping my lukewarm coffee. “Things just aren’t going my way.”

  I brooded over the day’s disasters that evening as I walked west from the News Corp. building on Sixth Avenue, through the tourist clusterfuck that is Times Square, toward my apartment in Hell’s Kitchen. As if purposely living the cliché of a New York writer, I rented a cramped one-room studio, where I slept on a pullout sofa. The apartment, eerily quiet, overlooked the courtyard of several tenements, and I often awoke not to police sirens and grumbling garbage trucks but to the sound of a neighbor playing the accordion on his balcony.

  Still obsessed with my bites, despite the exterminator’s assurance that I had nothing to worry about, I prepared for him to spray the place and spent that night discarding things that could be harboring bedbugs. Into the garbage went my beloved Post clips, hundreds of articles reminding me of how bizarre my job is: the victims and suspects, dangerous slums, prisons and hospitals, twelve-hour shifts spent shivering inside photographers’ cars waiting to photograph—or “pop”—celebrities. I had always loved every minute of it. So why was I suddenl
y so terrible at it?

  As I shoved these treasures into the trash bags, I paused on a few headlines, among them the biggest story of my career to date: the time I managed to land an exclusive jailhouse interview with child kidnapper Michael Devlin. The national media were hot on the story, and I was only a senior at Washington University in St. Louis, yet Devlin spoke to me twice. But the story didn’t end there. His lawyers went nuts after the article ran, launching a smear campaign against the Post and calling for a judicial gag order, while the local and national media began debating my methods on live TV and questioning the ethics of jailhouse interviews and tabloids in general. Paul fielded several tearful phone calls from me during that time, which bound us together, and in the end, both the paper and my editors stood by me. Though the experience had rattled me, it also whetted my appetite, and from then on, I became the resident “jailhouser.” Devlin was eventually sentenced to three consecutive lifetimes in prison.

  Then there was the butt implant story, “Rear and Present Danger,” a headline that still makes me laugh. I had to go undercover as a stripper looking for cheap butt enhancements from a woman who was illegally dispensing them out of a midtown hotel room. As I stood there with my pants around my ankles, I tried not to be insulted when she announced that she would need “a thousand dollars per cheek,” twice the amount she charged the woman who had come forward to the Post.

  Journalism was thrilling; I had always loved living a reality that was more fabulist than fiction, though little did I know that my life was about to become so bizarre as to be worthy of coverage in my own beloved tabloid.

  Even though the memory made me smile, I added this clip to the growing trash pile—“where it belongs,” I scoffed, despite the fact that those crazy stories had meant the world to me. Though it felt necessary at the moment, this callous throwing away of years’ worth of work was completely out of character for me. I was a nostalgic pack rat, who held on to poems that I had written in fourth grade and twenty-some-odd diaries that dated back to junior high. Though there didn’t seem to be much of a connection among my bedbug scare, my forgetfulness at work, and my sudden instinct to purge my files, what I didn’t know then is that bug obsession can be a sign of psychosis. It’s a little-known problem, since those suffering from parasitosis, or Ekbom syndrome, as it’s called, are most likely to consult exterminators or dermatologists for their imaginary infestations instead of mental health professionals, and as a result they frequently go undiagnosed.1 My problem, it turns out, was far vaster than an itchy forearm and a forgotten meeting.