Brain on Fire (37 page)

“O
ur 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 mechanism 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.

N
early 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.

O
f 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 Cahalan, 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.

Thank you to Free Press, a publishing house that has become a home to me over the past two years. To the immensely gifted Hilary Redmon, who selected and edited my manuscript: thank you for seeing that special something in my story, loving the science as much as I do, and kneading the story into a narrative. Then there’s the exceptional Millicent Bennett, who through her deft editorial flourishes and probing questions took the book to the next level, making it sing in ways I could never have dreamed. Thank you also to publicists Jill Siegel and Carisa Hays for their belief in the importance of my story and to Chloe Perkins, who put in a lot of late nights making this a better book. Thank you to the whole Free Press team: Suzanne Donahue, Nicole Judge, Paul O’Halloran, Edith Lewis, Beverly Miller, Claire Kelley, Alanna Ramirez, Sydney Tanigawa, Laura Tatham, Kevin McCahill, Brittany Dulac, Kelly Roberts, and Erin Reback. And, finally, to Dominick Anfuso and Martha Levin for putting such faith in me and creating such an amazingly supportive place for writers.

To my dazzling illustrator Morgan Schweitzer: you got it instantly, and your illustrations breathe such life into my work. My appreciation to the virtuosic Meehan Crist, who not only helped me get a grasp on the complexities, but also guided me toward finding my voice.

Thank you to the patient and helpful experts: Dr. Rita Balice-Gordon at the University of Pennsylvania, who has a special knack for explaining abstractions; Dr. Chris Morrison at the New York University Medical Center, who was so crucial to my understanding of the brain’s “glitches”; Dr. Vincent Racaniello at Columbia University, who shared his knowledge of the awesomeness of viruses; Dr. Philip Harvey at the University of Miami, who showed me how my disease fits within the study of schizophrenia;
Dr. Robert Lahita at Newark Beth Israel, who spent hours on the phone bantering about phagocytes; Dr. David Linden at Johns Hopkins University, who patiently explained to me the role of NMDA receptors in the brain; Dr. Joel Pachter at the University of Connecticut, who revealed how the blood-brain barrier works; and, finally, Dr. Henry Roediger III at Washington University in St. Louis and Dr. Elizabeth Loftus at the University of Washington, for explaining false-memory research.

I am grateful to the librarians of the library at the New York Academy of Medicine and at the New York Public Library, and to my fellow science writers at Columbia’s NeuWrite group who helped me accurately navigate through the more intricate scientific passages.

To the incredibly brave survivors and families who have so generously made me a part of their lives: Nesrin Shaheen and her daughter Sonia Gramcko; Emily, Bill, and Grace Gavigan; Sandra Reali; Cheryl, Tony, and Jayden Liuzza; Kiera Givens Echols; Angie McGowan; Donna Harris Zulauf; Annalisa Meier and her parents; and so many others.

To Paul McPolin, my straight-shooting
Post
editor, you are, as I said, a brilliant editor, and your work and generosity show in these pages. To my
Post
neighbor Maureen Callahan, who spent many nights listening to me babble over martinis: your insights show on these pages as well. And to Angela Montefinise, who told me the book was “great” when it was far from it, who brought me a cheeseburger in the hospital, who rescued my blue-haired stray, Dusty: I am forever in your debt. And thank you to the extraordinary Julie Stapen not only for bringing some needed levity (with her now infamous “poop” picture) but also for spending two hours patiently shooting me in search of the perfect author photo.