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Brain on Fire
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Brain on Fire Hardcover - 2012 - 1st Edition

by Cahalan, Susannah


Summary

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 month-long 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.

From the publisher

A gripping memoir and medical suspense story about a young New York Post reporter's struggle with a rare and terrifying disease, opening anew window into the fascinating world of brain science. 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 month-long 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.

Details

  • Title Brain on Fire
  • Author Cahalan, Susannah
  • Binding Hardcover
  • Edition number 1st
  • Edition 1
  • Pages 288
  • Language EN
  • Publisher Free Press, New York
  • Date 2012-11-13
  • ISBN 9781451621372

Excerpt


CHAPTER 1

BEDBUG BLUES

Maybe it all began with a bug bite, from a bedbug that didnâÈçt exist.

One morning, IâÈçd 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 wasnâÈçt 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 couldnâÈçt 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 âÈênormalâÈë means a lot at the Post.

Though itâÈçs notoriously obsessed with whatâÈçs 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 donâÈçt 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 reportersâÈç 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 activityâÈ'keyboards clacking, editors yelling, reporters cacklingâÈ'the perfect stereotype of a tabloid newsroom.

âÈêWhereâÈçs the fucking picture to go with this caption?âÈë

âÈêHow is it that he didnâÈçt know she was a prostitute?âÈë

âÈêWhat color were the socks of the guy who jumped off the bridge?âÈë

ItâÈçs 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, âÈêYou know anything about bedbug bites?âÈë

I often joked that if I ever had a daughter, IâÈçd 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 PostâÈçs most talented reporters, churning out reams of our best stories. Most late Friday nights, youâÈçd find Angela writing four stories on split screens simultaneously. I couldnâÈçt help but look up to her. Now I really needed her advice.

Hearing that dreaded word, bedbugs, Angela scooted her chair away from mine. âÈêDonâÈçt tell me you have them,âÈë 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.

âÈêYou ready?âÈë 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 SundayâÈçs paper. At the sound of his voice, I realized with panic that I was completely unprepared for this weekâÈçs meeting. Usually I had at least three coherent ideas to pitch; they werenâÈçt 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 SteveâÈçs office.

Nervously, I walked back down âÈêPine StreetâÈë and into SteveâÈçs 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 âÈêno one will sleep with you with those on.âÈë

We sat there in silence for a moment, as I tried to let myself be comforted by PaulâÈçs 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 exposÃû never ran, he assigned me more stories until I had been hired on full time in 2008. Now, as I sat in SteveâÈçs office wholly unprepared, I couldnâÈçt help but feel like a work in progress, not worthy of PaulâÈçs 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. âÈêI saw this story on a blog . . . ,âÈë I said, desperately plucking up wisps of half-formed ideas.

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

âÈêYou okay?âÈë Angela asked as I returned to my desk.

âÈêYeah, you know, IâÈçm just bad at my job. No big deal,âÈë I joked grimly.

She laughed, revealing a few charmingly crooked incisor teeth. âÈêOh, come on, Susannah. What happened? DonâÈçt take it seriously. YouâÈçre a pro.âÈë

âÈêThanks, Ang,âÈë I said, sipping my lukewarm coffee. âÈêThings just arenâÈçt going my way.âÈë

I brooded over the dayâÈçs 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 HellâÈçs Kitchen. As if purposely living the clichÃû 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 exterminatorâÈçs 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 photographersâÈç cars waiting to photographâÈ'or âÈêpopâÈëâÈ'celebrities. I had always loved every minute of it. So why was I suddenly 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 didnâÈçt 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 âÈêjailhouser.âÈë Devlin was eventually sentenced to three consecutive lifetimes in prison.

Then there was the butt implant story, âÈêRear and Present Danger,âÈë 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 âÈêa thousand dollars per cheek,âÈë 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 pileâÈ'âÈêwhere it belongs,âÈë 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 yearsâÈç 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 didnâÈçt 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 didnâÈçt know then is that bug obsession can be a sign of psychosis. ItâÈçs a little-known problem, since those suffering from parasitosis, or Ekbom syndrome, as itâÈçs 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.

After hours of packing everything away to ensure a bedbug-free zone, I still didnâÈçt feel any better. As I knelt by the black garbage bags, I was hit with a terrible ache in the pit of my stomachâÈ'that kind of free-floating dread that accompanies heartbreak or death. When I got to my feet, a sharp pain lanced my mind, like a white-hot flash of a migraine, though I had never suffered from one before. As I stumbled to the bathroom, my legs and body just wouldnâÈçt react, and I felt as if I were slogging through quicksand. I must be getting the flu, I thought.



This might not have been the flu, though, the same way there may have been no bedbugs. But there likely was a pathogen of some sort that had invaded my body, a little germ that set everything in motion. Maybe it came from that businessman who had sneezed on me in the subway a few days before, releasing millions of virus particles onto the rest of us in that subway car? Or maybe it was in something I ate or something that slipped inside me through a tiny wound on my skin, maybe through one of those mysterious bug bites?

There my mind goes again.2

The doctors donâÈçt actually know how it began for me. WhatâÈçs clear is that if that man had sneezed on you, youâÈçd most likely just get a cold. For me, it flipped my universe upside down and very nearly sent me to an asylum for life.

Media reviews

It's a cold March night in New York, and journalist Susannah Cahalan is watching PBS with her boyfriend, trying to relax after a difficult day at work. He falls asleep, and wakes up moments later to find her having a seizure straight out of The Exorcist. "My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened," Cahalan writes. "I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth."
It's hard to imagine a scenario more nightmarish, but for Cahalan the worst was yet to come. In 2009, the New York Post reporter, then 24, was hospitalized after âÈ' there's really no other way to put it âÈ' losing her mind. In addition to the violent seizures, she was wracked by terrifying hallucinations, intense mood swings, insomnia and fierce paranoia. Cahalan spent a month in the hospital, barely recognizable to her friends and family, before doctors diagnosed her with a rare autoimmune disorder. "Her brain is on fire," one doctor tells her family. "Her brain is under attack by her own body."

Cahalan, who has since recovered, remembers almost nothing about her monthlong hospitalization âÈ' it's a merciful kind of amnesia that most people, faced with the same illness, would embrace. But the best reporters never stop asking questions, and Cahalan is no exception. In Brain on Fire, the journalist reconstructs âÈ' through hospital security videotapes and interviews with her friends, family and the doctors who finally managed to save her life âÈ' her hellish experience as a victim of anti-NMDA receptor encephalitis. The result is a kind of anti-memoir, an out-of-body personal account of a young woman's fight to survive one of the cruelest diseases imaginable. And on every level, it's remarkable.

The best journalists prize distance and objectivity, so it's not surprising that the most difficult subject for a news writer is probably herself. And although she's young, Cahalan belongs firmly to the old school of reporters âÈ' she writes with an incredible sense of toughness and a dogged refusal to stop digging into her past, even when it profoundly hurts. One of the most moving moments in Brain on Fire comes when Cahalan, preparing a New York Post article about her illness, watches videos of herself in the hospital. She's horrified, but finds that she can't look away. "I was outrageously skinny. Crazed. Angry," she writes. "I had the intense urge to grab the videos and burn them or at least hide them away, safe from view."

But she doesn't, and she barely flinches when her loved ones tell her about the paranoid delusions that held her firmly in their grasp for several weeks. There's no vanity in Brain on Fire âÈ' Cahalan recounts obsessively searching her boyfriend's email for signs that he was cheating on her (he wasn't) and loudly insisting to hospital workers that her father had killed his wife (she was alive). Cahalan is nothing if not tenacious, and she perfectly tempers her brutal honesty with compassion and something like vulnerability.

It's indisputable that Cahalan is a gifted reporter, and Brain on Fire is a stunningly brave book. But even more than that, she's a naturally talented prose stylist âÈ' whip-smart but always unpretentious âÈ' and it's nearly impossible to stop reading her, even in the book's most painful passages. Reflecting on finding a piece of jewelry she'd lost during her illness, she writes, "Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly."

Brain on Fire comes from a place of intense pain and unthinkable isolation, but finds redemption in Cahalan's unflagging, defiant toughness. It's an unexpected gift of a book from one of America's most courageous young journalists.

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