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Brain on Fire (10th Anniversary Edition): My Month of Madness Paperback – August 6, 2013
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When twenty-four-year-old Susannah Cahalan woke up alone in a hospital room, strapped to her bed and unable to move or speak, she had no memory of how she’d gotten there. Days earlier, she had been on the threshold of a new, adult life: at the beginning of her first serious relationship and a promising career at a major New York newspaper. Now she was labeled violent, psychotic, a flight risk. What happened?
In a swift and breathtaking narrative, Susannah tells the astonishing true story of her descent into madness, her family’s inspiring faith in her, and the lifesaving diagnosis that nearly didn’t happen. “A fascinating look at the disease that...could have cost this vibrant, vital young woman her life” (People), Brain on Fire is an unforgettable exploration of memory and identity, faith and love, and a profoundly compelling tale of survival and perseverance that is destined to become a classic.
- Print length288 pages
- LanguageEnglish
- Publication dateAugust 6, 2013
- Dimensions5.5 x 0.7 x 8.38 inches
- ISBN-101451621388
- ISBN-13978-1451621389
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Editorial Reviews
Review
“A fascinating look at the disease that – if not for a nick-of-time diagnosis – could have cost this vibrant, vital young woman her life.” ― People magazine
“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)
"An intense, mesmerizing account of survival. . . Cahalan's deft descriptions of her spooky hallucinations could be right out of a Poe terror tale." ― BookForum
“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
"The best reporters never stop asking questions, and Cahalan is no exception...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.....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....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
“What is most impressive about “Brain on Fire” is that Cahalan has little recollection of her month of insanity…. Thanks partially to her talent as a journalist and to the fact that her parents kept journals, Cahalan was able to recapture her month, leaving no holes in the narrative.” ― The Daily Texan
“Compelling…a New York Post reporter recounts her medical nightmare.” ― Mental Floss
About the Author
Excerpt. © Reprinted by permission. All rights reserved.
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.
Brain on Fire 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 : Simon & Schuster; Reprint edition (August 6, 2013)
- Language : English
- Paperback : 288 pages
- ISBN-10 : 1451621388
- ISBN-13 : 978-1451621389
- Item Weight : 8.8 ounces
- Dimensions : 5.5 x 0.7 x 8.38 inches
- Best Sellers Rank: #10,337 in Books (See Top 100 in Books)
- #26 in Medical Professional Biographies
- #416 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.
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Susannah Cahalan contracted an illness that caused her brain to become inflamed. It affected her behavior in strange, horrible ways. Yet she describes the experience so completely, not just the weird feelings and strange hallucinations, but also the moments she's ashamed of. She describes moments where she says hurtful things to her parents, where she's distrustful of her boyfriend, where she makes a scene in a taxi claiming her father is a cruel kidnapper, where she walks into a diner and demands instant service, strolling to a seat and snapping her fingers at the waitress. And even though this behavior was due to her disease, she still apologizes and reveals how ashamed she is.
She describes frothing from the mouth as she has seizures, her hair becoming matted and dirty from the EKG patches on her scalp, the way her tongue lolled out of her mouth, the way she peed in her bed. These are impossibly intimate, embarrassing details that she shares with the reader in a selfless desire to make her story as complete and accurate as possible.
But perhaps most intimate of all are the feelings she shares with us. She shares how belittling it was to have to give up her own apartment and her ability to drive herself places, how her mother laid out her pills for her every day and Susannah, like an impotent child, would sometimes "forget" to take her pills in moments of desperate rebelliousness. She described the awkwardness she felt in social situations, her embarrassment at having coworkers, family members, friends, and her ex see her in her weakened state.
The book read like a horror novel. There was this chilling feeling that what Cahalan was describing could happen to me, but most likely wouldn't. There was a feeling of morbid curiosity, the same curiosity that causes people to crane their necks at a traffic accident on the highway. But there was also this reassuring feeling that everything would turn out all right. I KNEW there would be a happy ending because, after all, she was able to write this. Still, the experiences she described were so horrible that a part of me wanted to turn away, and another part of me absolutely could not turn away and felt compelled to keep reading.
This book is about the closest I've ever come to reading something where the author completely stripped herself naked (emotionally) and showed the reader everything, regardless of the implications it might have. And while her reason for writing was partly cathartic, to understand her own experience and learn what happened to her in the month she couldn't remember, it was largely for the benefit of others. She shared every detail of her miserable experience in hopes that it would help others to receive a proper diagnosis and treatment.
I have nothing but immense respect for the author for doing such a thing, and I wholeheartedly recommend this book.
Brain on Fire is a fascinating medical mystery. Susannah’s first symptoms were flu-like (true of 70% of patients with her illness), which then spiraled into numbness, seizures, hallucinations, paranoia, memory loss, loss of motor skills, and catatonia. After weeks of doctors haphazardly diagnosing her with all kinds of things (alcohol withdrawal was my favorite), she ended up at the renowned NYU Comprehensive Epilepsy Center for a month while the experts there struggled to figure out what was wrong with her.
This book, while absolutely having the potential to turn me into a hypochondriac, was a wake-up call for me that, as miracle-working as many doctors are, they don’t have all the answers all the time. I think we get lulled into a sense of security that, when we get sick, we go to the doctor, he/she diagnoses us, and we get treatment. Brain on Fire is a harrowing reminder that it’s not that simple…that there are so many things that the experts don’t yet understand. And, that you might need to cross paths with the one doctor in the world who is familiar with your rare illness to get your life-saving treatment.
The other major issue that made an impression on me was how many people there must be out there that have some sort of brain disorder and are incorrectly diagnosed as mentally ill. Susannah was certainly headed in that direction had her doctors not persevered and contacted the correct experts in the field. I don’t want to say what exactly was wrong with her, as that question accounts for a lot of the suspense in the story, but I will say that her diagnosis was fascinating for me, especially as she was only the 217th person in the world to be diagnosed with the illness since its discovery in 2007.
As I was reading, I became more and more astounded that someone who had been where she had could then, within a few years, have the mental sharpness and emotional strength to put together such a well-written and impeccably researched book. She was able to clearly explain complicated medical issues and make them entertaining (although she did go into too much detail at times):
“The mind is like a circuit of Christmas tree lights. When the brain works well, all of the lights twinkle brilliantly, and it’s adaptable enough that, often, even if one bulb goes out, the rest will still shine on. But depending on where the damage is, sometimes that one blown bulb can make the whole strand go dark.”
The one thing that annoyed me (and it’s minor) were the sections of italics throughout the book, which I think represent her memories and/or hallucinations from the time of her illness. My question is, since she claims to barely remember the month or so that she was ill, how does she know what she was thinking at periods during that time? These were not, in most instances, things that she could have reconstructed from medical records or interviews with people close to her. Or, is my assumption totally incorrect?
Brain on Fire is a captivating and quick to read memoir and would make a great book club selection.
For more reviews, check out my blog, Sarah's Book Shelves.
Top reviews from other countries
The ink could be a little darker. The page could be thicker. The book arrived in good condition. Timely delivery.
Reviewed in India on July 3, 2023
The ink could be a little darker. The page could be thicker. The book arrived in good condition. Timely delivery.