Brain on Fire

  They gave my mother a list of the medications I would now be taking: prednisone; Ativan, an antianxiety drug used to treat and prevent signs of catatonia; Geodon for psychosis; Trileptal for seizures; Labetalol for high blood pressure; Nexium to deal with the acid reflux caused by the steroids; and Colace for the constipation caused by the combination of all the drugs. Still, in the back of everyone’s mind was that 4 percent mortality figure. Even with all of this, with all the proper intervention, people still died. Sure, they had a name for my illness and actions we could all take, but there was still a long uncertain journey ahead.

  Stephen, Lindsey, and I filed into Allen’s Subaru. When I had been admitted in early March, it was still winter; now it was springtime in New York. We drove back to Summit in silence. Allen turned on the radio, tuning it to a local lite FM station. Lindsey looked over at me to see if I recognized the song.

  “Don’t go breaking my heart,” a man’s voice started.

  “I couldn’t if I tried,” a woman’s voice returned.

  This had been my go-to karaoke song in college in St. Louis. At this point, Lindsey doubted I would remember it.

  I began bopping my head out of rhythm, my arms at rigid right angles. I swung my elbows front to back like I was awkwardly cross-country skiing. Was this one of my weird seizure-like moments, or was I dancing to an old favorite? Lindsey couldn’t tell.

  CHAPTER 33

  HOMECOMING

  My mom’s house in Summit looked particularly striking that spring day, my homecoming. The front lawn was lush with fresh green grass, white azaleas, and the blooms of pinkish-purple rhododendrons and yellow daffodils. The sun beamed down on the aged oak trees that shaded the maroon door at the entranceway to the stone-front colonial. It was gorgeous, but no one could tell if I even noticed. I certainly don’t remember it. I just stared ahead, making that constant chewing motion with my mouth as Allen swerved into the driveway of the place I had called home most of my young adult life.

  The first thing that I wanted to do was take a real shower. There were still clumps of glue in my scalp that looked like pebble-sized pieces of dandruff, and I still had the metal staples from the surgery, so I could not be too vigorous with my washing. My mother offered to help, but I refused, determined to do this small thing on my own, at last.

  After a half hour, Lindsey headed upstairs to check on me. Through the opening in my bedroom door, she could see me sitting on the bed, freshly showered, with my legs flexed rigidly off the side, fidgeting with the zipper on my black hoodie. I was struggling to connect the zipper with the pull. Lindsey watched for a moment, unsure of what to do; she didn’t want to embarrass me by knocking on the door and offering aid, because she knew I didn’t like to be babied. But when she saw me go limp, drop the zipper, and begin to sob out of frustration, she headed into the room. She sat down beside me and said, “Here, let me help,” zipping up my hoodie in one fluid motion.

  . . .

  Later that evening, Stephen cooked a pasta dinner as a quiet celebration for my return. Allen and my mom left the house so that the three of us could have some alone time. My mother was so relieved that they finally had a name for what ailed me that she had truly convinced herself the worst was behind us.

  After dinner, we sat outside on the back patio. Lindsey and Stephen made small talk while I stared ahead, as if I didn’t hear them. But when they lit cigarettes, I got up without a word and walked inside.

  “Is she okay?” Lindsey asked.

  “Yes, I think she’s just adjusting. We should give her a moment alone.”

  They are smoking together. Who knows what else they’ll do together.

  I grab the home phone. For some reason, I can’t remember my mother’s number, so I look it up in my cell phone. Ring, ring, ring, ring.

  “You’ve reached Rhona Nack. Please leave a message after the beep.” BEEP.

  “Mom,” I whisper. “He’s going to leave me for her. Please come home. Please come home and stop them.”

  I pace around and watch him from the kitchen window that looks out on the patio. He catches my eye and waves. Why does he want to be with a sick girl? What is he doing here with me? I look at him waving, certain that I have lost him forever.

  When my mom listened to the voice mail, she panicked: I was becoming psychotic again. Because Dr. Najjar was often difficult to reach, she dialed Dr. Arslan’s private number, which he had given her the day before we left the hospital. She was worried that NYU had let me go home too soon.

  “She’s acting paranoid,” she said. “She believes that her boyfriend is going to run off with her best friend.”

  This concerned Dr. Arslan. “I’m worried that she may be reentering a psychotic state. I would give her an extra dose of Ativan to calm her for the night and then check in with me tomorrow.” In my case, though, the return to psychotic behavior was actually a sign of improvement, because the stages of recovery often occur in reverse order: I had passed through psychosis before I got to catatonia, and now I had to pass through it again on my road back to normality.45 Dr. Arslan didn’t forewarn us about the progression of the disease, because no one yet knew that people often slid back to psychosis. It would be only two years later, in 2011, when Dr. Dalmau released a paper with a section on that very subject, that the stages of the disease would become widely known.

  Lindsey’s weekend with me had come to a close. She and our friend Jeff (my karaoke partner in St. Louis), who happened to be in New York for an unrelated trip, were planning to drive the sixteen hours back to St. Louis together. When she called to give him directions, he said he’d like to see me. She warned him I wouldn’t be the same.

  Jeff rang the doorbell, and my mom invited him inside. He spotted me hovering beneath the staircase, slowly approaching the doorway. He first noticed my smile, a frozen, vacant, idiotic grin that frightened him. I held my arms out, slightly bent, as if pushing my body against a door. Nervously, he smiled and asked, “How are you feeling?”

  “Goooooood,” I said, drawing out the syllables so much that the one word took several seconds. My lips hardly moved, but I maintained piercingly direct eye contact. He wondered if I was trying to communicate through my stare. It reminded him of a zombie movie.

  “Are you happy to be home?”

  “Yesssssssss,” I said, drawing out the “s” like a strained hiss.

  Jeff didn’t know what to do next, so he leaned forward and embraced me, whispering in my ear, “Susannah, I want you to know that we’re all here for you and thinking of you.” I couldn’t bend my arms to return the hug.

  Lindsey, who stood behind us watching the scene, readied herself for the good-bye. She was not prone to histrionics and hardly ever cried. She had been so stoic throughout the visit, never once letting on how agonizing the stay had been for her, but she couldn’t contain herself anymore.

  She dropped her luggage on the floor and embraced me. Suddenly I was crying, too.

  Lindsey left that morning not knowing if she would ever get her best friend back.

  CHAPTER 34

  CALIFORNIA DREAMIN’

  On April 29, less than two weeks after leaving the hospital, I returned to New York University Medical Center for another week of plasma-exchange treatment. Because my symptoms were no longer considered epileptic but related to autoimmune encephalitis, I was placed on the seventeenth floor: neurology. Unlike the epilepsy unit, this floor in the old Tisch Hospital had not been redone. There were no flat screen televisions, everything seemed dingier, and the patients here seemed older, frailer, and somehow closer to death. A senile woman in a private room at the end of the hall spent her afternoons screaming “PIZZA!” over and over. When my dad asked why, the nurses explained that she loved Fridays, which were pizza days.

  I shared a room with an obese black woman named Debra Robinson. Though she suffered from diabetes, the doctors believed that her underlying issues actually stemmed from colon cancer, but they still hadn’t confirmed the theory. Debra
was so overweight that she was unable to leave her bed and go to the bathroom. Instead, she did her business in a bedpan, periodically filling the room with all sorts of putrid smells. But she apologized every time, and it was impossible to dislike her. Even the nursing staff adored her.

  The plasma exchange was done through a catheter inserted directly into my neck. “Oh my god,” Stephen said, as he watched the nurse insert the needle. It made a “pop” where it pierced my jugular vein. Holding the catheter in place, the nurse spread heavy tape, the consistency of masking tape, around the catheter to keep it upright, jutting out perpendicularly from the right side of my neck. The tape was so harsh that it left red welts on my skin. Though the catheter was hideously uncomfortable, it had to stay in place for the whole week, over the course of my treatment.

  The plasma-exchange process originated with a Swedish dairy cream separator created in the late 1800s that sets apart curds from whey.46 Scientists were so inspired by this simple machinery that they attempted to use it to separate plasma (the yellow-colored liquid that suspends cells and contains antibodies) from blood (which contains the red and white blood cells). The blood streams into the cell separator, which, like a spin dryer, shakes up the blood, cleaving it into those two components—the plasma and the cells of the blood. Then the machine returns the blood to the body and replaces the original plasma—which is full of the harmful autoantibodies—with a new, protein-rich fluid that does not contain antibodies. Each process takes about three hours. The doctors had prescribed five sessions.

  My friends were allowed to come and go as they pleased during this second stay, and they all received specific requests from me: Hannah brought more magazines; my high school friend Jen brought a pumpernickel bagel with butter and tomatoes; and Katie brought Diet Cokes.

  On my fourth day in the hospital, Angela arrived for a visit, but she was still startled by how terrible I looked. She later e-mailed Paul that I was “pale, thin, out of it . . . Pretty scary.” I still had a long way to go.

  It is my last night in the hospital. My roommate Debra just got news: she does have colon cancer, but they caught it early. Debra is celebrating with the nursing staff. They came by to pray with her. I understand her relief, how important it is for your illness to have a name. Not knowing is so much worse. As she prays with the nurses, Debra repeats over and over again, “God is good, God is good.”

  As I reach to turn out the lights, I feel compelled to say something to her.

  “Debra?”

  “Yes, dear?”

  “God is good, Debra. God is good.”

  The next morning I was released again, and Stephen took me out on a drive in my mom and Allen’s car around Summit. We drove past an old mental institution called Fair Oaks, now a drug rehab center; the high-school lacrosse field where I once played goalie; and Area 51, a house on the outskirts of Summit where our mutual friends lived and partied years ago. When we reached a red light, Stephen turned on the CD player. The tinkling of Spanish flamenco guitars drifted through the speakers.

  “All the leaves are brown and the sky is gray. I’ve been for a walk on a winter’s day.” He recognized the song; it was one of his favorites, a song that brought him back to his childhood, when his mother used to listen to the Mamas and the Papas with him on the way to run errands. “Stopped into a church, I passed along the way. I got down on my knees and I began to pray.”

  As if on cue, Stephen and I together belted out the chorus, “California dreamin’ on such a winter’s day!” For a moment, Stephen took his eyes off the road and glanced at me in astonishment and joy. Finally, here was the confirmation he had been waiting for all these weeks: I was still in there.

  PART THREE

  IN SEARCH OF LOST TIME

  I had only the most rudimentary sense of existence, such as may lurk and flicker in the depths of an animal’s consciousness; I was more destitute of human qualities than the cave-dweller; but then the memory, not yet of the place in which I was, but of various other places where I had lived, and might now very possibly be, would come like a rope let down from heaven to draw me up out of the abyss of not-being, from which I could never have escaped by myself.

  MARCEL PROUST, Swann’s Way: In Search of Lost Time

  CHAPTER 35

  THE VIDEOTAPE

  Iinsert a silver DVD marked “Cahalan, Susannah” into my DVD player. The video begins. I see myself at the center of the screen, peering into the camera’s lens. The hospital gown slips off my left shoulder and my hair is stringy and dirty.

  “Please,” I mouth.

  On the screen, I stare straight ahead, lying on my back as rigid as a statue, my eyes the only feature betraying the manic fear inside. Then those eyes turn and concentrate on the camera, on me now.

  Fear of this sort is not something we typically capture in photographs or videos of ourselves. But there I am, staring into the camera as if I’m looking death in the face. I have never seen myself so unhinged and unguarded before, and it frightens me. The raw panic makes me uncomfortable, but the thing that truly unsettles me is the realization that emotions I once felt so profoundly, so viscerally, have now completely vanished. That petrified person is as foreign to me as a stranger, and it’s impossible for me to imagine what it must have been like to be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery.

  The video self hides her face under the covers, clutching the blanket so hard her knuckles turn white.

  “Please,” I see myself plead on video again.

  Maybe I can help her.

  CHAPTER 36

  STUFFED ANIMALS

  “What did it feel like to be a different person?” people ask.

  It’s a question that’s impossible to answer with conviction, because, of course, during that dark period, I didn’t have any real self-awareness that allowed me the luxury of contemplation, the ability to say, “This is who I am. And this is who I was.” Still, my memory does retain a few moments from those weeks right after the hospital. It’s the closest I can get to recapturing what it was like to feel so utterly divorced from myself.

  A few days after my first hospital stay, Stephen drove me to his sister Rachael’s house in Chatham, New Jersey.

  I remember the view from the car’s passenger seat window, driving past the familiar tree-lined suburban streets. I stared out the window as Stephen’s free hand held mine. I think he was as nervous as I was about my reintroduction to the real world.

  “Good turkey,” I said, out of the blue as we turned into the driveway. It was a simple reference to the night in the hospital when Stephen had brought roasted turkey leftovers for me from his family’s Easter dinner. He couldn’t help but laugh, and I smiled too, though I’m not certain that I was even in on the joke.

  Stephen parked the car next to a woodshed under a basketball hoop. I reached for the door handle, but my fine motor skills were still so weak I couldn’t open the car door, so Stephen ran to the passenger side and helped me out safely.

  Stephen’s sisters, Rachael and Bridget, and their young children, Aiden, Grace, and Audrey, were waiting in the yard. They had heard snippets of what had happened, but most of it had been too painful for Stephen to recount, so they were largely unprepared. Bridget, for one, was shocked by my state. My hair was unkempt, and the angry red bald spot from the biopsy was exposed, complete with metal staples still suturing my skin together. Yellow crust covered my eyelids. I walked unsteadily, like a sleepwalker with my arms outstretched and stiff and my eyes open but unfocused. At the time, I knew that I was not quite myself, but I had no clue how jolting my altered appearance must have been to those who had known me before. Recalling moments like these, which occurred frequently during this tentative stage in my recovery, I wish I could, like a guardian angel, swoop down and help protect this sad, lost echo of myself.

  Bridget told herself not to gawk and tried to hide her nervousness, concerned that I would sense it, but it only mad
e her feel more flustered. Rachael and I had met at her daughter’s first birthday party back in October, when I had been outgoing and talkative and, unlike many of Stephen’s previous girlfriends, not at all intimidated by the closely knit nature of their family. The transformation was extreme, as though a hummingbird had turned into a sloth.

  Because they were toddlers, Audrey and Grace didn’t notice that anything was wrong. But Aiden, an outgoing six-year-old, kept his distance from me, clearly unnerved by this strange new Susannah, so unlike the one who had played and joked with him only a few months earlier. (He later told his mom that I reminded him of the mentally handicapped man whom he often saw at their public library. Even in that half state, I could sense his apprehension, though I was bewildered by why he seemed so frightened.)

  We all stood in the driveway as Stephen handed out the presents. As soon as I’d gotten out of the hospital, I felt compelled to give away the stuffed animals that had accumulated while I was sick. Grateful as I was for them, they served as plaguing reminders of my childlike state, so I wanted to purge myself of them by handing them off as gifts to the kids. Aiden said a quick thank-you and stood behind his mother as the two girls hugged my leg, each with their own high-pitched “Thank you!”