Brain on Fire: My Month of Madness

by Susannah Cahalan

  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.2

  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.

  CHAPTER 2

  THE GIRL IN THE BLACK LACE BRA

  A few days later, the migraine, the pitch meeting, and the bedbugs all seemed like a distant memory as I awoke, relaxed and content, in my boyfriend’s bed. The night before, I had taken Stephen to meet my father and stepmother, Giselle, for the first time, in their magnificent Brooklyn Heights brownstone. It was a big step in our four-month-old relationship. Stephen had met my mom already—my parents had divorced when I was sixteen, and I had always been closer to her, so we saw her more often—but my dad can be intimidating, I know, and he and I had never had a very open relationship. (Though they’d been married for more than a year, Dad and Giselle had only recently told my brother and me about their marriage.) But it had been a warm and pleasant dinner with wine and good food. Stephen and I had left believing that the evening was a success.

  Although my dad would later confess that during that first meeting, he had thought of Stephen as more of a placeholder than a long-term boyfriend, I didn’t agree at all. We’d only recently begun dating, but Stephen and I had first met six years earlier, when I was eighteen and we worked together at the same record store in Summit, New Jersey. Back then, we passed the workdays with polite banter, but the relationship never went any deeper, mainly because he is seven years my senior (an unthinkable gap for a teenager). Then one night the previous fall, we had run into each other at a mutual friend’s party at a bar in the East Village. Clinking our bottles of Sierra Nevada, we bonded over our shared dislike for shorts and our passion for Dylan’s Nashville Skyline. Stephen was alluring in that languid, stay-out-all-night kind of way: a musician with long, unkempt hair, a skinny smoker’s frame, and an encyclopedic knowledge of music. But his eyes, trusting and honest, have always been his most attractive trait. Those eyes, with nothing to hide, made me feel as if I had dated him forever.

  That morning, stretched out in his bed in his enormous (by comparison) studio apartment in Jersey City, I realized I had the place to myself. Stephen had already left for band practice and would be gone for the rest of the day, leaving me free to either spend the day there or let myself out. We had exchanged keys about a month earlier. It was the first time I had taken such a step with a boyfriend, but I had no doubt it was right. We felt deeply comfortable together, generally happy, safe, and trusting. As I lay there, however, I was suddenly, unexpectedly, hit with one overpowering thought: Read his e-mails.

  This irrational jealousy was wholly unlike me; I had never even been tempted to intellectually trespass like this. But without really considering what I was doing, I opened up his MacBook and began to scroll down his inbox. I sorted through months of mundane e-mails until I triumphantly unearthed a recent one from his ex-girlfriend. The subject line was “Do You Like It?” I clicked, my heart pounding furiously in my chest. She had sent him a picture of herself, posing seductively with her lips pursed, showing off a new auburn hairstyle. It didn’t look as if Stephen had ever responded. Still, I fought the urge to punch the computer or throw it across the room. Instead of stopping there, though, I indulged my fury and continued digging until I’d dredged up the correspondence that chronicled their yearlong relationship. Most of these e-mails ended with three words: “I love you.” Stephen and I hadn’t yet said that to each other. I slammed down the laptop screen, enraged, though I couldn’t say exactly why. I knew he hadn’t talked to her since we started dating, and he had done nothing inappropriate. But now I felt compelled to go look elsewhere for signs of betrayal.

  I tiptoed over to his yellow IKEA dresser—and froze. What if he has cameras going? Nah. Who secretly videotapes their home while they’re away besides overzealous parents spying on new nannies? But the thought persisted: What if he’s watching me? What if this is a test? Although I was frightened by this foreign paranoia, it didn’t stop me from pulling open the drawers and rifling through his clothes, flinging them on the floor, until I found the jackpot: a cardboard box decorated with band stickers and filled with hundreds of letters and pictures, most of them from exes. There was one long framed photo-booth series with his most recent ex-girlfriend: they pouted, looked longingly at each other, laughed, and then kissed. I could see it happening right in front of me, unfolding like a child’s flipbook: I was witnessing them falling in love. Next there was a picture of the same girl in a see-through lace bra with her hands on her bony hips. Her hair was bleached blond, but it looked attractive, not whorish. Below that were the letters, a fistful of handwritten notes that went as far back as Stephen’s teens. At the top, the same girlfriend gushed about how much she missed him while she was staying in France. She misused the word their and spelled definitely as defiantely, which thrilled me so much that I laughed out loud, a kind of cackle.

  Then, as I reached for the next letter, I caught sight of myself in the mirror of the armoire, wearing only a bra and underwear, clutching Stephen’s private love letters between my thighs. A stranger stared back from my reflection; my hair was wild and my face distorted and unfamiliar. I never act like this, I thought, disgusted. What is wrong with me? I have never in my life snooped through a boyfriend’s things.

  I ran to the bed and opened my cell phone: I had lost two hours. It felt like five minutes. Moments later, the migraine returned, as did the nausea. It was then that I first noticed my left hand felt funny, like an extreme case of pins and needles. I clenched and unclenched my hand, trying to stop the tingling, but it got worse. I raced to the dresser to put away his things so that he wouldn’t notice my pilfering, trying to ignore the uncomfortable tingling sensation. Soon though, my left hand went completely numb.

  CHAPTER 3

  CAROTA

  The pins and needles, which persisted unabated over many days, didn’t concern me nearly as much as the guilt and bewilderment I felt over my behavior in Stephen’s room that Sunday morning. At work the next day, I commissioned the help of the features editor, Mackenzie, a friend who is as prim and put together as a character out of Mad Men.

  “I did a really bad thing,” I confessed to her outside the News Corp. building, huddling under an overhang in an ill-fitting winter coat. “I snooped at Stephen’s house. I found all these pictures of his ex-girlfriend. I went through all of his stuff. It was like I was possessed.”

  She shot me a knowing half-smile, flipping her hair off her shoulders. “That’s all? That’s really not so bad.”

  “Mackenzie, it’s psycho. Do you think my birth control is causing hormonal changes?” I had recently started using the patch.

  “Oh, come on,” she countered. “All women, especially New Yorkers, do that, Susannah. We’re competitive. Seriously, don’t be so hard on yourself. Just try not to do it again.” Mackenzie would later admit she
was concerned not by the act of snooping itself but by my overreaction to having done it.

  I spotted Paul smoking nearby and posed the same question. I could depend on him to tell it to me straight. “No, you’re not crazy,” he assured me. “And you shouldn’t be worried. Every guy keeps pictures or something from their exes. It’s the spoils of war,” he explained helpfully. Paul could always be counted on for a man’s perspective, because he is so singularly male: eats hard (a double cheeseburger with bacon and a side of gravy), gambles hard (he once lost $12,000 on a single hand at the blackjack table at the Borgata in Atlantic City), and parties hard (Johnnie Walker Blue when he’s winning, Macallan 12 when he isn’t).

  When I got to my desk, I noticed that the numbness in my left hand had returned—or maybe it had never left?—and had moved down the left side of my body to my toes. This was perplexing; I couldn’t decide if I should be worried, so I called Stephen.

  “I can’t explain; it just feels numb,” I said on the phone, holding my head parallel to my desk because my landline cord was so tangled.

  “Is it like pins and needles?” he asked. I heard him strum a few chords on his guitar in the background.

  “Maybe? I don’t know. It’s weird. It’s like nothing I’ve felt before,” I said.

  “Are you cold?”

  “Not particularly.”

  “Well, if it doesn’t go away, you should probably go to a doctor.” I rolled my eyes. This coming from the guy who hadn’t been to a doctor in years. I needed another opinion. When Stephen and I hung up, I swiveled my chair around to face Angela.

  “Did you sneeze or bend over funny?” she asked. Her aunt had recently sneezed and dislocated a disc in her spine, which had caused numbness in her hands.

  “I think you should get it checked out,” another reporter piped up from her desk nearby. “Maybe I’ve been watching too many episodes of Mystery Diagnosis, but there’s a lot of scary shit out there.”

  I laughed this off at the time, but flickers of doubt danced in my head. Even though my colleagues were professional slingers of hyperbole, hearing the worry in their voices made me start to rethink my laissez-faire attitude. That day during a lunch break, I finally decided to call my gynecologist, Eli Rothstein, who had over time become more of a friend than a medical practitioner; he had even treated my mom when she was pregnant with me.

  Most of the time Rothstein was laid back; I was young and generally healthy, so I was accustomed to his telling me everything was normal. But when I described my symptoms, the usual warmth dropped from his voice: “I’d like you to see a neurologist as soon as possible. And I’d like you to stop taking your birth control immediately.” He arranged for me to visit a prominent neurologist that afternoon.

  Concerned by his reaction, I hailed a cab and headed uptown, the taxi zipping in and out of the early afternoon traffic before dropping me in front of an impressive Upper East Side building where doormen staffed a grand marble lobby. One doorman pointed me to an unmarked wooden door on the right. The contrast between the crystal-chandeliered entrance and the drab office was discomfiting, as if I had jumped back in time to the 1970s. Three unmatched tweed chairs and a light brown flannel couch provided seating. I chose the couch and tried to avoid sinking in at its center. A few paintings hung around the walls of the waiting room: an ink sketch of a godlike man with a long white beard holding an instrument that looked suspiciously like a surgical needle; a pastoral scene; and a court jester. The haphazard decor made me wonder if everything, including the furniture, had been dug up at a garage sale or pilfered from sidewalk castoffs.

  Several emphatic signs hung at the receptionist’s desk: PLEASE DO NOT USE LOBBY FOR PHONE CALLS OR WAITING FOR PATIENTS!!!!!! ALL COPAYS MUST BE PAID BEFORE SEEING DOCTOR!!!!!!!

  “I’m here to see Dr. Bailey,” I said. Without a smile and without looking at me, the receptionist shoved a clipboard in my direction. “Fill it out. Wait.”

  I breezed through the form. Never again would a health history be so simple. Any medications? No. Allergies? No. History of surgery or previous illness? I paused here. About five years ago, I had been diagnosed with melanoma on my lower back. It had been caught early and required only minor surgery to remove. No chemo, nothing else. I jotted this down. Despite this premature cancer scare, I had remained nonchalant, some would say immature, about my health; I was about as far from a hypochondriac as you can get. Usually it took several pleading phone calls from my mom for me to even follow through on my regular doctor’s appointments, so it was a big deal that I was here alone and without any prodding. The shock of the gynecologist’s uncharacteristic worry had been unnerving. I needed answers.

  To keep calm, I fixated on the strangest and most colorful of the paintings—a distorted, abstract human face outlined in black with bright patches of primary colors, red pupils, yellow eyes, blue chin, and a black nose like an arrow. It had a lipless smile and a deranged look in its eyes. This painting would stick in my mind, materializing again several more times in the coming months. Its unsettling, inhuman distortion sometimes soothed me, sometimes antagonized me, sometimes goaded me during my darkest hours. It turned out to be a 1978 Miró titled Carota, or carrot in Italian.

  “CALLAAHAANN,” the nurse brayed, mispronouncing my name. It was a common, excusable mistake. I stepped forward, and she showed me to an empty examination room, then handed me a green cotton gown. After a few moments, a man’s baritone voice echoed behind the door: “Knock, knock.” Dr. Saul Bailey was a grandfatherly-looking man. He introduced himself, extending his left hand, which was soft but strong. In my own, smaller one it felt meaty, significant. He spoke quickly. “So you’re Eli’s patient,” he began. “Tell me what’s going on.”

  “I don’t really know. I have this weird numbness.” I waved my left hand at him to illustrate. “And in my foot.”

  “Hmmm,” he said, reading over my chart. “Any history of Lyme disease?”

  “Nope.” There was something about his demeanor that made me want to reassure him, to say, “Forget it, I’m fine.” He somehow made me want not to be a burden.

  He nodded. “Okay, then. Let’s have a look.”

  He conducted a typical neurological exam. It would be the first of many hundreds to come. He tested my reflexes with a hammer, constricted my eyes with a light, assessed my muscle strength by pushing his hands against my outstretched arms, and checked my coordination by having me close my eyes and maneuver my fingers to my nose. Eventually he jotted down “normal exam.”

  “I’d like to draw some blood, do a routine workup, and I’d like you to get an MRI. I’m not seeing anything out of the norm, but just to be safe, I’d like you to get one,” he added.

  Normally I would have put the MRI off, but today I decided to follow through. A young, lanky lab technician in his early thirties greeted me in the lab’s waiting room and walked me toward a changing area. He led me to a private dressing room, offered a cotton gown, and instructed me to take off all my clothes and jewelry, lest they interfere with the machinery. After he left, I disrobed, folded my clothes, removed my lucky gold ring, and dropped it into a lockbox. The ring had been a graduation gift from my stepfather—it was 14K gold with a black hematite cat’s eye, which some cultures believe can ward off evil spirits. The tech waited for me outside the changing area, smiling as he guided me to the MRI room, where he helped prop me up on the platform, placed a helmet on my head, tucked a blanket over my bare legs, and then walked out to oversee the procedure from a separate room.

  After half an hour of enduring repeated close-range booming inside the machine, I heard the tech’s faraway voice: “Good job. We’re all set.”

  The platform moved out of the machine as I pulled off the helmet, removed the blanket, and got to my feet, feeling uncomfortably exposed in just the hospital gown.

  The technician grinned at me and leaned his body against the wall. “So what do you do?”

  “I’m a reporter for a newspaper,” I said.r />
  “Oh yeah, which one?”

  “The New York Post.”

  “No way! I’ve never met a real-life reporter before,” he said as we walked back to the changing room. I didn’t reply. I put on my clothes as quickly as I could and rushed toward the elevators to avoid another conversation with the tech, who I felt was being awkwardly flirtatious. Unpleasant as they can be, MRIs are largely unremarkable. But something about this visit, especially that innocent exchange with the tech, stayed with me long after the appointment, much like the Carota picture. Over time, the tech’s mild flirtations teemed with a strange malevolence created entirely by my churning brain.

  It wasn’t until hours later, when I idly tried to twirl my ring on my still-numb left hand, that I realized the real casualty of that disturbing day. I had left my lucky ring in that lockbox.

  “Is it bad that my hand still feels tingly all the time?” I asked Angela again the next day at work. “I just feel numb and not like myself.”