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Video: Brain on fire: Rare disease mistaken for mental illness

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updated 11/13/2012 3:12:31 PM ET 2012-11-13T20:12:31

Susannah Cahalan's life was nicely falling into place. She'd landed a great job at a revered newspaper and was pursuing her dream as a journalist. Almost overnight, however, it all came crashing down as she felt her mind slipping away from her. In “Brain on Fire,” Cahalan documents her panic to define what was ripping her life apart, and her struggle to overcome it. Here's an excerpt.

CHAPTER 1

BEDBUG BLUES

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

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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.

Video: She went mad for a month (on this page)

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

“Where’s the f___ing 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 news-hounds 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?”

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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 f__k 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 clusterf__k 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.

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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.

Excerpt from BRAIN ON FIRE by Susannah Cahalan. Copyright © 2012 by Susannah Cahalan. Reprinted by permission of Simon & Schuster, Inc, NY.

© 2012 MSNBC Interactive

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