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Brain on Fire: My Month of Madness Hardcover – November 13, 2012
| Susannah Cahalan (Author) Find all the books, read about the author, and more. See search results for this author |
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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.
- Print length288 pages
- LanguageEnglish
- PublisherFree Press
- Publication dateNovember 13, 2012
- Dimensions6 x 1 x 9 inches
- ISBN-10145162137X
- ISBN-13978-1451621372
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Editorial Reviews
From Booklist
Review
“A dramatic and suspenseful book that draws you into her story and holds you there until the last page. . . I recommend it highly.” (The Lancet)
“The bizarre and confounding illness that beset the 24-year-old New York Post reporter in early 2009 so ravaged her mentally and physically that she became unrecognizable to coworkers, family, friends, and—most devastatingly—herself… She dedicates this miracle of a book to ‘those without a diagnosis’… [An] unforgettable memoir.” (Elle)
“Swift and haunting.” (Scientific American)
“This fascinating memoir by a young New York Post reporter…describes how she crossed the line between sanity and insanity…Cahalan expertly weaves together her own story and relevant scientific information…compelling.”
(Booklist (starred review))
“Compelling…a New York Post reporter recounts her medical nightmare.” (Mental Floss)
“For the neurologist, I highly recommend this book on several grounds…First, it is a well-told story, worth reading for the suspense and the dramatic cadence of events…Second, it is a superb case study of a rare neurologic diagnosis; even experienced neurologists will find much to learn in it…Third, and most important, it gives the neurologist insight into how a patient and her family experienced a complex illness, including the terrifying symptoms, the difficult pace of medical diagnosis, and the slow recovery. This story clearly contains lessons for all of us.”
(Cognitive and Behavioral Neurology)
“Focusing her journalistic toolbox on her story, Cahalan untangles the medical mystery surrounding her condition…A fast-paced and well-researched trek through a medical mystery to a hard-won recovery.”
(Publishers Weekly)
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 — there's really no other way to put it — 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 — 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 — through hospital security videotapes and interviews with her friends, family and the doctors who finally managed to save her life — 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 — 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 — 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 — whip-smart but always unpretentious — 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. (NPR.org)
About the Author
Excerpt. © Reprinted by permission. All rights reserved.
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 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 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. 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 didn’t feel any better. As I knelt by the black garbage bags, I was hit with a terrible ache in the pit of my stomach—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 wouldn’t 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.
The doctors don’t actually know how it began for me. What’s clear is that if that man had sneezed on you, you’d most likely just get a cold. For me, it flipped my universe upside down and very nearly sent me to an asylum for life.
Product details
- Publisher : Free Press; 1st edition (November 13, 2012)
- Language : English
- Hardcover : 288 pages
- ISBN-10 : 145162137X
- ISBN-13 : 978-1451621372
- Item Weight : 15.7 ounces
- Dimensions : 6 x 1 x 9 inches
- Best Sellers Rank: #1,443,972 in Books (See Top 100 in Books)
- #2,652 in Medical Professional Biographies
- #4,976 in Medical Diseases (Books)
- #41,977 in Memoirs (Books)
- Customer Reviews:
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Susannah Cahalan is the New York Times bestselling author of "Brain on Fire: My Month of Madness," a memoir about her struggle with a rare autoimmune disease of the brain. She writes for the New York Post. Her work has also been featured in the New York Times, Scientific American Magazine, Glamour, Psychology Today, and others.
Bio and photo from Goodreads.
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Before being admitted to the hospital:
Cahalan starts the book by describing what many people with the disease experience as symptoms. Her flu-like symptoms and paranoia are not enough to get her admitted to the hospital and she gets diagnosed with psychological disorders. It is clear in the beginning that she is making a break from reality and her personality is changing. It is hard for the reader to tell what is Cahalan's true self and what is the disease. Cahalan admits in the book that she could not longer tell the difference between what is going on in her mind and what is reality.
During her hospital stay:
It is impressive how much information Cahalan has on this time of her life, seeing as she remembers almost none of it. The book takes a dramatic turn as Cahalan can only report on her conditions through other people's eyes. There are parts of these chapters where she describes what was captured on video tape, this allows the reader to feel as if they are actually in the hospital room with Cahalan.
Recovery:
Cahalan's recovery might be the most tragic part of this book. She can fully remember who she used to be, but cannot seem to regain that old self. It is amazing to see the transformation she goes though not only physically, but mentally. As the book progresses, she regains her fine motor skills and cognitive function. It is during this part of the book that the reader begins to wonder if she will ever make a full recovery. Cahalan describes this part of the book in such detail, that the reader feels as if they are to recovering form anti-NMDA receptor encephalitis.
"In essence, I was gone. I wish I could understand my behaviors and motivations during this time, but there was no rational consciousness operating, nothing I could access anymore, then or now."
This quote from Cahalan truly explains her break from reality. She does not recognize the person she had become while the doctors where struggling to diagnose her and she has no personal memories to help her. She truly brings into the light the fear that this disease has cause hundreds of people and families. It has only recently been discovered and while there is a cure and over 75% people make a full recovery, there are still many doctors that do not know to look for it.
"...I no longer struggled for the right words, didn't have to push myself to make small talk, and had reclaimed my old sense of humor."
It is astounding that Cahalan lost so much of her self in the time, which her disease was running rampant. She lost physical abilities, cognitive function and her personality; the very essence of who she is. As she recounts her recovery and struggle to become who she once was, she allows the reader inside very private parts of her life. This makes her story very relatable, even for people who do not know someone suffering with this or a similar disease.
I would recommend this book for anyone looking for a more dramatic read. It is impossible to put down once you start reading. The chapters are very short; normally just a few pages long and is perfect for a read who tends to frequently put books down. I got half way through the book without even realizing it. The book is perfect for anyone looking to feel as if they are in another world. This disease is almost something straight out of science fiction, but Cahalan is able to bring it down to a relatable level. Her story is a compelling one and is one that should be shared with people all over the world so that people with is disease can be diagnosed and treated.
A bit of background about myself, I was raised in a religious family and stayed religious most of my childhood. However as I grew up, got educated, and turned into an adult I become more of an agnostic. I had more faith in science than the bible and discounted it just as a book of moral guidance among all other religions. I stopped believing in spirit and even questioning whether God truly exists. Not heeding the bible and curious by nature, I started dabbling into "New Age" stuff - crystals, auras, reading about out of body experience, astral projection, energy attunement, etc. Until one day I had an episode almost like the seizure mentioned in the book - luckily enough my parents, who are steadfast Christian, was with me at the time. They called upon Jesus name and I didn't quite lose my consciousness though the experience was extremely baffling and terrifying to me. They asked me to renounce all those esoteric stuff yet I was stubborn at the time and thought that they were unrelated. Yet I could feel the influences on my brain from time to time and they would get worse. I would get major mood swings and off-balanced with increasing dissolving sense of self. Went to a full medical and neurological checkup, everything was fine. Finally I called upon Jesus in desperation and threw away all those esoteric stuff. Interestingly enough, the day after that I got significantly better.
Then I asked myself, was it just a pure coincidence? Was there any scientific explanation to this? I wanted to believe in Jesus 100% but I had lingering doubts. Then I stumbled upon this book. In my mind I thought "Here's a book that could provide a plausible explanation for my episodes using medical science without needing to explain away using spirituality. I've always had an autoimmune disease in the form of dermatographism so that could be the cause behind it." After reading the book, I realized without a shred of doubt that it wasn't a coincidence at all and that it was truly God's power that liberated me.
For those who haven't read the book yet, there might SPOILERS in this paragraph so you have been warned. I came to this conclusion because I was probably about at the same place as the author in terms of world view before the whole thing happened. More or less agnostic, wanted to believe in spirituality but didn't really totally buy into it. When I started reading I was hoping there would be no mention of spirituality involved in it at all and that the cause of the disease would be due to something else. How wrong I was. The author dabbled in the esoteric Wiccan art through her friend which opens the gateway to demonic hosts. The other dead giveaway was in the scrawling of "People are desperate, they'll do anything". That was an automatic writing channeling from unclean spirits. It wasn't her nor was it her subconscious nor inflamed brain. Finally she got better after somebody prayed for her "God, cure this young lady". The timing and the chance encounter with Dr.Najjar was nothing short of a miracle. Instead of reinforcing my scientific worldview it completely turned on its head and instead reinforced my spiritual worldview.
I felt extremely compelled to share this testimony to others so that more people can come to know the truth in God and get saved through Jesus Christ and not falling for the deception of the devil. As it is written "For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms."
May God bless you.
Top reviews from other countries
There were occasions when the journalistic style grated, as the author sensationalised her experiences of this bizarre and frightening illness - hence the four stars. Overall a gripping and emotionally intense roller coaster ride of a book.














