Brain on Fire

by Susannah Cahalan

  Yet some things haven’t changed. My parents, who had briefly been able to put aside their deep-seated animosity during my hospital stay, weren’t able to maintain their civil relationship after I had returned to myself. Without doctor appointments keeping them in contact, they fell back into the routine of habitual avoidance that even their daughter’s near-death experience couldn’t mend.

  People never change, they say. I remember when I was entering sixth grade and the guidance counselor called us into her office to talk about the transition from elementary school to middle school. She asked me to pick an emoticon out of a list of about fifty to describe how I felt on the first day of school. I picked “ecstatic,” the one with the wide-mouthed, full laugh. The counselor was surprised by my pick; this apparently was not a common choice. I had been ecstatic then, but would I pick ecstatic now? Or have I lost that spark after all? Is there a sliver of me that did not recover from the fire?

  CHAPTER 51

  FLIGHT RISK?

  The impostor EEG nurse, the sea of paparazzi surrounding my father at the top of the news hour, the insult silently hurled at me by my stepfather. These absurd memories persist, while others that are real and documented fall through the fingers of my mind like water. If all I remember are hallucinations, how can I rely on my own mind?

  To this day, I struggle with distinguishing fact from fiction. I even asked my mother if Allen had actually called me a slut in the car that day.

  “Are you kidding?” my mom asked, hurt that I could even ask. “He would never do that.”

  She was right; logically, I understood he would never say such things. Yet why did I continue to believe my own bizarre memory over a lifetime of proof? And why did these specific memories remain intact? If I didn’t have a mental illness, how did these hallucinations come about?

  Though hallucinations, paranoia, and an illusory grasp on reality are the hallmarks of those with schizophrenia, you don’t need to suffer from a mental illness to induce these symptoms. In 2010, a Cambridge University study helped to illuminate the thought processes of people with schizophrenia by injecting healthy student volunteers with the drug ketamine—which blocks the same NMDA receptors in the brain that were affected by my illness—and conducting what is known as the “rubber hand illusion” on them.61 Fifteen students were asked to place one hand on a table beside a fake rubber hand, first after they had been injected with ketamine and then at a later sitting with a placebo. During the experiment, the real hand was hidden from view as two paintbrushes, attached to motors, stroked the index fingers of both hands. Though subjects on a placebo could also be tricked by the illusion, those on ketamine sooner and more intensely believed that the rubber hand was their own. The experiment showed that the ketamine injections, for whatever reason, helped break down the subjects’ sense of reality, making things that would ordinarily seem impossible to a rational mind, like having the ability to age someone with your mind, suddenly seem possible.

  There have been decades of research, like the rubber hand study, on the phenomenon, yet hallucinations continue to intrigue researchers, and there’s still no consensus about their basic mechanisms and why they exist.

  All we know is that they occur when the brain perceives an outward sensation—vision, sound, or touch—but there is no corresponding external source; it is a failure to distinguish between what is external and what is internal, referred to as self-monitoring theory.62

  In the same vein, it is precisely because these hallucinations are self-generated that they are so believable and vividly remembered, explained psychology professor Dr. Philip Harvey. It’s called the generation effect:63 “Because those hallucinations were self-generated,” Dr. Harvey told me, “you were better able to remember them.”

  Although people with schizophrenia exhibit cognitive and memory defects, they can remember just as well as healthy people if they are forced to structure the memory themselves. For example, those with schizophrenia best remember lists of words when they are asked to make a story out of the words rather than straightforward and unaided remembering.

  Couple this with the fact that these head trips were intensely emotional and would therefore be tagged as important by the hippocampus and amygdala, both of which were affected by my disease. The amygdala, an almond-shaped structure situated atop the hippocampus, located at the sides of the head above the ears in the temporal lobes, is a structure intimately involved in emotion and memory, helping to choose which memories should be kept and which should be discarded, based on which events have traumatized or excited us.64 The hippocampus tags the memory with context (the hospital room and the purple lady, for example), and the amygdala provides the emotion (fear, excitement, and pain).

  When the amygdala stamps the experience with high emotional value, it’s more likely to be preserved, a process called encoding, and eventually made into a memory, called consolidation. The hippocampus and amygdala help encode and consolidate the experience, or make it into a memory that can be retrieved later.65 When any part of this elaborate system is compromised, the memory may not be formed.

  Therefore I will likely never forget the time I could age the psychiatrist with my mind, which just shows how fallible memory is. This realization would continue to haunt me.

  For instance, I recall with absolute certainty the time I woke up bound by restraints in the hospital’s four-person AMU room, watched over by the “purple lady,” the scene that opens this book. I vividly remember looking down at my right hand and seeing an orange band that read FLIGHT RISK. My family and friends remembered the same thing, so I took this for granted as a truth. The FLIGHT RISK band to me is a fact.

  Yet it turns out it was imaginary. When I spoke to nurses and doctors on my floor, they told me that those bands don’t exist. One nurse suggested, “You probably had a FALL RISK band. It wasn’t orange; it was yellow.” My EEG tapes confirmed this. There is no such thing as an orange FLIGHT RISK band.

  “When people think about a past event, they can incorporate new information in their recollection, making a new memory,” explained psychologist Elizabeth Loftus. Dr. Loftus has spent a lifetime working on the assumption that memory is often inaccurate.66 In a 1978 study, now presented in most Psych 101 classes, Dr. Loftus showed participants slides of a red car hitting a pedestrian. Although the photographs established that the car had encountered a stop sign, when Dr. Loftus questioned the subject, she inserted intentionally misleading questions, like, “What color was the yield sign?” The study showed that subjects given leading information were more likely to answer incorrectly than those who weren’t. These findings have challenged the power of eyewitness testimony.

  A team of New York–based neuroscientists in 2000 demonstrated this assumption in lab rats by testing to see if memories are constantly altered each time we recall them.67 The team uncovered another step in the memory process, called reconsolidation: when a memory is recalled, it’s essentially remade, allowing new (and sometimes wrong) information to filter in. This is normally useful because we need to be able to update our past experiences to reflect present information, but it sometimes creates devious inaccuracies.

  Psychology professor Dr. Henry Roedigger calls what happened with the FLIGHT RISK band a form of social contagion: If one person remembers incorrectly and shares this with others, it can spread, like an airborne illness straight out of the movie Outbreak.

  Did I harbor this false memory? Was I the one who spread it? I am sure I remember vividly seeing the words FLIGHT RISK on my arm. Or am I?

  CHAPTER 52

  MADAME X

  “Our brains make little stories,” explained Dr. Chris Morrison, the neuropsychologist who had tested me at the hospital, when I interviewed her in December 2010. “It’s possible that when you rehearse things so many times, you start to internalize and believe that you were there. You integrate fragments, scenes of things that you could not truly remember.” Like the FLIGHT RISK band.

  Similarly, a retrieval me
chanism is triggered in the brain when we see something recognizable. Smells or images will instantly transport us back in time, unlocking forgotten memories. A year after I left the hospital, my friend Colleen took me to a nearby pub called Egan’s.

  The name jarred me. Had I been there before? I couldn’t remember.

  We walked into the upscale Irish pub and headed toward the bar. Nope. I hadn’t been there. But when I stepped into the central dining room area and caught sight of a magnificent low-hanging chandelier, I knew I had been here before, right before I got sick, with Stephen, his sister, and her husband before that Ryan Adams show. Not only did I remember being here, but I also remembered what I ordered: fish and chips.

  Glistening lard. Piles of gluttonously rich, fat-encrusted french fries. I fought the urge to throw up on the table. I tried to make conversation, but all I could concentrate on was the glistening fish and chips.

  I couldn’t believe how vividly it came rushing back to me. What else had I forgotten? What else would come back, knocking me off balance and reminding me how tenuous my grip on reality was?

  Almost every day, something reemerges. It can be something insignificant, like the moss-colored socks at the hospital, or a simple word, like the time in the drugstore when I saw a box of Colace, the stool softener I had taken at the hospital, and the memories of Nurse Adeline came rushing in with it. During these moments, I can’t help but think that the other Susannah is calling out to me as if to say, I may be gone, but I’m not forgotten. Like the girl in the video: “Please.”

  But with every memory I recapture, I know there are hundreds, thousands even, that I cannot conjure up. No matter how many doctors I speak with, no matter how many interviews I conduct or how many notebooks I scavenge, there will be many experiences, bits of my life that have vanished.

  One morning, a year after I moved in with Stephen, I finally got around to unpacking boxes from my old apartment. I opened a small box filled with an old, broken hair dryer, some curling irons, a few notebooks, and a small brown paper bag. Inside the paper bag was a postcard of a raven-haired woman. It was a famous painting, and I knew I had seen it before, but it held no context for me:

  The woman stands majestically in profile, which exaggerates her downward-sloping nose and long forehead. Her pale skin contrasts sharply against the blackness of her evening dress, which leaves her shoulders bare, only two jeweled straps holding the dress in place. She supports her unnatural pose by leaning the weight of her body on the tips of her right fingers, which are propped against a wooden table; her other hand lifts the hem of her skirt in a queenly fashion. It’s a seductive and artificial pose. To me, she looks at once both haughty and sick, as if too arrogant to admit that she is deathly ill.

  There was something oddly magnetic about this woman, so different from the entirely alien push-and-pull mixture of attraction and repulsion that I felt with Dr. Bailey’s distorted version of a human form, that Carota picture. Taking in this woman, an ancient feeling surged through me, a prickly, exhilarating sensation that I could trace to my childhood. After a moment, I found the source: I had the same feeling when I used to snoop through my mom’s closet when I was a child. I stared at the picture for several more minutes, trying to understand the link between the picture and that forgotten memory, before I could pry myself away long enough to turn the postcard over.

  It was John Singer Sargent’s Madame X, from 1884. Also in the bag was a receipt for the date of purchase. I had bought the $1.63 postcard at the Metropolitan Museum of Art on February 17, 2009, shortly before my first breakdown at work. There was not one shred, one iota, one shard of memory that connected me with that museum visit. I could not recall going to the Met that February day. I could not remember standing in front of the painting or what had originally engrossed me about this powerful yet vulnerable woman.

  Or maybe on some level, I can remember. I like to believe what Friedrich Nietzsche said: “The existence of forgetting has never been proved: we only know that some things do not come to our mind when we want them to.”

  Maybe it’s not gone but is somewhere in the recesses of my mind, waiting for the proper cues to be called back up. So far that hasn’t happened, which just makes me wonder: What else have I lost along the way? And is it actually lost or just hidden?

  Some buried feeling unites me fiercely with that painting. I have since mounted it on the wall above me in the room where I write, and often I find myself staring off at it when I’m lost in thought. Maybe, even though “I” was not there to experience it for the first time, some part of me nevertheless was present during that museum visit, and maybe for that entire lost month. That idea comforts me.

  CHAPTER 53

  THE PURPLE LADY

  Nearly two years after my release from the epilepsy floor at New York University Langone Medical Center, I return for a visit.

  I walk up First Avenue toward the purple NYU sign that hangs on the massive gray hospital building in the distance. I press against the sluggish revolving door, made to move slowly to accommodate those in wheelchairs, which opens up into the hospital’s modern lobby. Doctors in white lab coats walk briskly past patients and various drug salesmen who look like aged frat boys. Somber visitors holding plastic “Patient’s Belongings” bags disappear into the background. Automatic Purell hand sanitizer dispensers dot the entranceways. I walk past the admitting station where I had my seizure, though all I can remember from that day is the hot cappuccino I’d bought moments before I was admitted.

  I get on an elevator that takes me to the twelfth floor. My thoughts wander to my parents and Stephen, who took this very trip several times a day for a month. Incredible.

  Strangely, though, everything looks unfamiliar. None of the nurses recognize me. I walk through the corridor and past the nurses’ station. No one looks up. A man sprawled out on the hallway floor is making a gurgling sound. The nurses behind the station run past me toward him. I follow behind them. The older man thrashes, emitting primitive guttural grunts. A team of nurses holds him down as a security guard lifts him onto a gurney. The man’s gown is open below his belly button. I turn away from the sight. A nurse in green scrubs walks by me.

  “Is this the epilepsy unit?” I ask her.

  “No. You’ve got the wrong floor. This is the east wing. Epilepsy is on the west wing, same floor.” Well, at least this time it wasn’t my memory playing tricks on me.

  I return to the lobby and take another elevator up, but again find, to my disappointment, that nothing looks familiar. Then the smell hits me: a combination of alcohol-soaked cotton swabs with a sweet muskiness. This is the place; it has to be. Then I see her. The purple lady. She stares at me. But this time it’s not with horror or pity or fear. In her eyes I’m a normal, healthy person, just someone whose face she is struggling to place.

  I smile. “Do you remember me?” I ask.

  “I’m not sure,” she admits. There’s that same Jamaican accent. “What’s your name?”

  “Susannah Cahalan.”

  Her eyes widen. “Oh, yes, I remember you. I do remember you.” She smiles. “I’m sure it’s you, but you look so different. You look all better.”

  Before I know it, we’re embracing. The scent of her body is like Purell. Images flood through my mind’s eye: my father feeding me oatmeal, my mom wringing her hands and looking nervously out of the window, Stephen arriving with that leather briefcase. I should be crying, but I smile instead.

  The purple lady kisses me softly on the cheek.

  ACKNOWLEDGMENTS

  Of course, it’s been said before: I could never have done this without all of you. But I believe that, in my case, this cliché rings true. I can say, in all honesty, that without the incredible people who make up my life, I would not be here right now writing these words.

  I am forever grateful for the love and support provided to me by the fighters, my family: my mother, my father, Stephen, and James. Thank you also to my extended family: Allen Goldman, Giselle C
ahalan, Hannah Green, Len Green, and Ana Coelho, who never lost sight of me, even during my darkest hours. And to Stephen’s “Good Turkey” kin and his parents John Grywalski and Jane O’Malley for raising such a remarkable son. You all are my rocks. I continue to thrive because of you.

  How do I thank my brilliant and selfless Drs. House: Dr. Souhel Najjar and Dr. Josep Dalmau? I’ll keep it simple: thank you for saving my life. And, if that wasn’t enough, thank you both for contributing so much of your precious time to this project, for explaining the vagaries of our brains and immune systems, and for vetting the manuscript. Thank you also to the New York University Langone Medical Center, specifically Dr. Sabrina Khan, Dr. Jung Hwan Ahn, Dr. Jeffery Friedman, Dr. Werner Doyle, Karen Gendal, Tamara Ricaforte, Laura Dumbrava, Dr. Hilary Bertisch, nurse Steve Schoenberg, Dr. Orrin Devinsky, Dorie Klissas, and Craig Andrews. As my parents said in their note: “I cannot think of more meaningful work than what you do every day.”

  Then there’s the whole lonely and terrifying business of sitting down and writing a book. I am so fortunate to have the superagent duo of Larry Weissman and Sascha Alper representing me. They believed in me from moment one, and continued to guide me through the difficult process of writing. Along the way you both have come to mean more to me than mere business associate: you’re family.