Brain on Fire: My Month of Madness

^{CHAPTER 15} THE CAPGRAS DELUSION

I was admitted in midafternoon on March 23, ten days after that first blackout while watching the PBS show with Gwyneth Paltrow. The NYU Langone Medical Center has one of the largest epilepsy units in the world, but the only bed available on the eighteen-patient floor was in the advanced monitoring unit (AMU), a four-person room dedicated to “grid patients,” people with severe epilepsy who need electrodes implanted in their brains so that the center can record the electrical activity required before some types of epilepsy surgery. Occasionally other patients, like me, ended up here due to lack of space. The room has its own nurses’ station, where a staff member monitors the patients twenty-four hours a day. Two cameras hang above each bed, constantly surveying every patient on the floor so that the hospital can have physical as well as electrical evidence of seizures (when a patient is discharged, most of the footage is discarded; the hospital keeps only the seizure events and abnormal circumstances). All of this surveillance would prove essential to me later, when I began to try to reconstruct what happened to me during these lost weeks.

After my seizure in the lobby’s admitting area, my mother and stepfather trailed behind the gurney as the medic team wheeled me onto the epilepsy floor. Two different nurses then brought me into the AMU. Diverted by their new roommate, the room’s three other patients quieted when I arrived. The nurse practitioner took down my health history, noting that I was cooperative with just a hint of delay, which she figured was related to the aftermath of the seizure. When I was unable to answer questions, my mother, clutching her folder full of documents, answered in my stead.

The nurses settled me onto a bed that had two precautionary side guardrails; the bed itself was lowered as close as possible to the ground. Nurses began to arrive approximately once an hour to get my vitals: blood pressure, pulse, and the results of a basic neurological exam. My weight was on the low side of normal, my blood pressure high-normal, and my pulse slightly accelerated but not alarmingly so, given the circumstances. The assessments, which covered everything from bowel movements to level of consciousness, were all normal.

An EEG technician interrupted the screening, pulling a cart behind him. He began unloading handfuls of the multicolored electrodes—reds, pinks, blues, and yellows—like the ones from my EEG at Dr. Bailey’s office. The wires fed into a small, gray EEG box, similar in shape and size to a wireless Internet router, which connected to a computer that would record my brain waves. These electrodes measure the electrical activity along the scalp, tracking the chatter of electrically charged neurons and translating their actions as waves of activity.

As the technician began to apply the adhesive, I stopped cooperating. It took him half an hour to place the twenty-one electrodes as I squirmed. “Please, stop!” I insisted, thrashing my arms as my mother caressed my hands, trying ineffectually to calm me. I was acting even more mercurial than in recent days. Things seemed to be going downhill fast.

Eventually my tantrum receded, but I continued to cry as the smell of fresh glue permeated the air. The tech finished applying the wires and, before he left, handed me a small pink backpack that looked as if it belonged to a preschooler. It held my little “Internet router,” which would allow me to walk around but remain connected to the EEG system.

It was already clear that I would not be an easy patient, given the way I screamed at visitors and lashed out at nurses during those first few hours on the floor. When Allen arrived, I pointed and yelled at him, insisting that the nurses “get this man out of my room.” Similarly, I loudly accused my dad of being a kidnapper when he arrived, and I demanded that they bar him as well. Because I was still in the midst of what seemed to be psychosis, many tests were impossible to conduct.

Later that evening, an on-call neurologist came to conduct a second basic health history. Immediately she noticed that I was “labile,” meaning prone to mood swings, and “tangential,” meaning that I skipped from topic to topic without clear transitions. Nonetheless, I did manage to describe my history of melanoma before I began to grow so illogical that the interview had to be postponed.

“So what year was it that you were diagnosed?” the neurologist asked.

“He’s playing a trick on me.”

“Who’s playing a trick on you?”

“My dad.”

“What do you mean?”

“He’s changing into people. He’s turning into different people to play tricks on me.”

The neurologist wrote “unclear if hallucinating” on her consultation form and prescribed a low-dose of the antipsychotic drug Geodon, often used to treat the symptoms of schizophrenia. She put in a request for a member of the psychiatric team to perform a closer examination.

Not only did I believe that my family members were turning into other people, which is an aspect of paranoid hallucinations, but I also insisted that my father was an imposter. That delusion has a more specific name, Capgras syndrome, which a French psychiatrist, Joseph Capgras, first described in 1923 when he encountered a woman who believed that her husband had become a “double.”¹² For years, psychiatrists believed this syndrome was an outgrowth of schizophrenia or other types of mental illnesses, but more recently, doctors have also ascribed it to neurobiological causes, including brain lesions.¹³ One study revealed that Capgras delusions might emerge from structural and circuitry complications in the brain, such as when the parts of the brain responsible for our interpretations of what we see (“hey, that man with dark hair about 5’10”, 190 pounds looks like my dad”) don’t match up with our emotional understanding (“that’s my dad, he raised me”). It’s a little like déjà vu, when we feel a strong sense of intimacy and familiarity but it’s not connected to anything we actually have experienced before. When these mismatches occur, the brain tries to make sense of the emotional incongruity by creating an elaborate, paranoid fantasy (“that looks like my dad, but I don’t feel like he’s my dad, so he must be an imposter”) that seems to come straight out of The Invasion of the Body Snatchers.

I need to pee. I snatch up my pink backpack and unplug the cord and head to the shared bathroom. As I lower my black leggings and my underwear to my knees, I can’t shake the feeling that I’m being watched. I look to my right, and a big brown eye peers in at me from a slit in the door.

“Get the fuck away from me!”

I cover my private parts, lift my pants, and sprint back to bed, pulling the covers to my eyes. I call my mom.

“They’re trying to hurt me. They’re making fun of me. They’re putting shots in my arm,” I whisper, trying to keep my voice low enough so that the other three patients and the nurse manning the in-room station can’t hear me.

“Susannah, please try to stay calm. I promise you no one is trying to hurt you,” my mom says.

“They’re spying on me. They watch me when I go to the bathroom.”

She pauses before speaking again. “Is this true?”

“How can you ask me that? Do you think I’d make it up?”

“I’m going to talk to them about this,” she says, her voice growing frenzied.

“Do you think they’ll tell you, ‘Yeah, we’re abusing your daughter’? Do you think they’ll admit that?”

“Are you sure this is happening, Susannah?”

“Yes.”

I hang up on her as I hear the shuffling of feet. A nurse walks near my bed. “Please don’t use the phone with the EEG equipment. It interferes. And it’s late. Everyone is sleeping.”

Then she whispers, softly, tauntingly, without moving her lips, “I see you on the news.”

“What did you say?”

“Why you no let your father in? He’s a good man,” the nurse says, her voice wafting around me like a vapor until she disappears behind the curtain.

Everyone is out to get me. I’m not safe here. I look up at the video cameras. They are watching me. If I don’t leave now, I will never get out alive. I grab a handful of electrodes and pull. A patch of hair comes out with it, but no pain registers. Absently, I stare at the virgin roots of my dyed blond hair and then reach for more.

That night, I dashed out of the hospital room and into the hallway, where a group of nurses caught up to me and returned me to the AMU room as I battled ferociously, kicking and screaming. It was my first, but not my last, attempt at escape.

^{CHAPTER 16} POSTICTAL FURY

Deborah Russo, an attending neurologist on the epilepsy floor, visited me on the second day to conduct yet another examination. She came during the morning shift, accompanied by doctors, nurses, and a few med students. They were “the team.” Knowing about my escape attempt the night before, Dr. Russo sized up the room and confirmed that all seizure precautions were being maintained before moving on to the basic neurological exam: “touch your nose, stick out your tongue,” etc. I interrupted her midreview.

“You need to let me out of here. I don’t belong here,” I confided, looking nervous. “They’re all saying bad things about me.”

“Who’s talking to you?”

“The people on the TV.”

Dr. Russo allowed me to ramble on for a few minutes before redirecting me. “Can you tell me a little about how you felt before you came to the hospital?”

“I felt like I disappeared.”

“Can you explain what that means?”

“It felt like I was tired. I was tired until today.”

Russo wrote down “too tangential and disorganized to give us a full history” and continued with her exam. “I’m going to ask you some basic questions, and you do your best to answer them, okay? What is your name?”

“Susannah,” I said, craning my neck toward the TV set.

“What year is it?”

“You don’t hear that? They’re talking about me. Look, look, they’re talking about me right now.”

“Susannah, would you try to answer my questions?” Dr. Russo said, motioning for a nurse to turn off the television set. “What year is it?”

“2009.”

“Who is the president?”

“Obama.”

“Where are you?”

“I need to get out of here. I need to leave. I need to go.”

“I understand. But where are you right now?”

“The hospital,” I answered, caustically. Dr. Russo moved on, shining a light into my pupils with a small flashlight, checking for constriction and eye movement. All normal.

“Susannah, please smile for me.”

“No more. I don’t want to do this anymore,” I said.

“It won’t take long.”

“I want out now!” I screamed, launching myself off the bed. The team waited out my outburst, but even once I was calm again, I continued to pace, tugging at my EEG leads and lunging toward the door. “Let me out of here!” I snarled at the team, trying to push my way out of the room. “Let me go home!”

Dr. Russo led me back to the bed several times, calling for the help of a nurse’s assistant. She green-lighted a dose of Haldol, an antipsychotic. Later, typing up her impressions at the nurses’ station, she wrote that the “patient appears to be manic and psychotic.” She had two possible diagnoses: “First presentation of bipolar, versus postictal psychosis.” “Ictal” means seizure, so postictal psychosis is psychotic behavior following a cluster of seizures. PIP, as it’s called, can persist for as little as twelve hours or as long as three months, but the mean is about ten days.¹⁴ In 1838 a French psychiatrist described the condition as “postictal fury.¹⁵” A quarter of psychotic people treated in epilepsy wards suffer from PIP.¹⁶

Later that morning, the third doctor, William Siegel, arrived alone. He introduced himself to me and then to my mother, who was already aware of his stellar reputation. A day earlier, she had mentioned his name to her general practitioner, who had said: “You got Siegel? How did you pull that off?” Siegel was charismatic and approachable. After the neurological exam, he extended his hand to my mother and said, “We will figure this out. Susannah will be fine.” My mother clung to these words like a life raft and nicknamed the doctor “Bugsy”—her own doctor gangster.

^{CHAPTER 17} MULTIPLE PERSONALITY DISORDER

The mind is like a circuit of Christmas tree lights. When the brain works well, all of the lights twinkle brilliantly, and it’s adaptable enough that, often, even if one bulb goes out, the rest will still shine on. But depending on where the damage is, sometimes that one blown bulb can make the whole strand go dark.

The day after we met Dr. “Bugsy,” Dr. Sabrina Khan from the Department of Psychiatry arrived and introduced herself to Stephen and me. She was the fourth doctor to join the team and had already heard about my two escape attempts: one in the early morning and one this afternoon with Dr. Russo. In her progress note, Dr. Khan described me as slightly disheveled and fidgety, wearing “revealing pajamas” (my tight leggings and a see-through white shirt) and playing with my dangling EEG leads. It was important for her to provide a visual picture to match the psychological one, because my rumpled, suggestive appearance could be a sign of mania: those on a high often forgo grooming and exhibit less impulse control, engaging in destructive acts like sexual promiscuity. Though I had no previous history of mental illness, I was within the age range for psychotic breaks, which tend to occur in the late teens or early twenties, but also frequently happen later in life for women.¹⁷

While she was writing, I announced, unprompted, “I have multiple personality disorder.”

Dr. Khan nodded patiently. I had picked one of the most controversial diagnoses in the field of psychiatry.¹⁸ Now called dissociative identity disorder (DID), it is a condition where a person exhibits several distinct and entirely separate identities, to the point that the patient is often unaware of the other “selves.” Some doctors believe it exists, and others do not (especially in light of news that its poster child, Sybil, was a fraud). Many patients conflate DID with other types of mental illnesses, like schizophrenia. In any case, I was clearly confused.

“Have you been diagnosed by any psychiatrist or psychologist in the past?” she asked gently.

“Yes. A psychiatrist said I had bipolar disorder.”

“And were you taking any medication for that?”

“I refused to take it. I spit it out. I need out of here. I don’t belong here. I belong in a psychiatric ward. I belong in Bellevue. It’s not safe for me here.”

“Why is it not safe for you here?”

“Everyone is talking about me. They’re all talking about me and making fun of me behind my back. I belong in Bellevue where they can take care of my disorder. I don’t know why I’m here. I can hear what the nurses are saying about me. I can hear their thoughts, and they aren’t saying nice things.”

Dr. Khan wrote down “paranoid ideation.”

“You can hear their thoughts?” she repeated.

“Yes. The whole world is making fun of me.”

“What else can you hear?”

“The people on the TV are talking about me too.”

Dr. Khan wrote “ideas of reference,” a patient’s belief that newspaper articles, songs, or TV shows refer directly to him or her. “Do you have any history of family members with mental illness?”

“I don’t know. My grandmother might have had bipolar disorder. But they’re all crazy.” I laughed. Then I turned on her. “You know that I have the right to sign myself out, right? I can walk out of here. I can’t legally be held here against my will. I don’t want to talk anymore.”

Dr. Khan wrote down her differential diagnoses, which included “Mood Disorder, not otherwise specified” and “Psychotic Disorder, not otherwise specified.” She was concerned that, in light of the seizures and my history of melanoma, they should be looking for neurological causes.

If there was no underlying disease that could explain my sudden psychosis, she suggested bipolar I as a possible explanation. Bipolar I is a mood disorder characterized by a manic or mixed (both manic and depressive) episode. On a scale from 1 (most dire cases) to 100 (no symptoms), I received a score of 45, which translated to “serious symptoms.¹⁹” Dr. Khan recommended that the staff assign me a security guard, called a one-to-one, to try to prevent future escape attempts.

I can’t hear their voices anymore. Her skin is so smooth. I stare at the doctor’s cheekbones and pretty olive skin. I stare harder, harder, harder still. Her face swirls before me. Strand by stand her hair turns gray. Wrinkles, first just around her eyes, and then around her mouth and across her cheeks, now line her entire face. Her cheeks sink in, and her teeth turn yellow. Her eyes begin to droop, and her lips lose their shape. The striking young doctor ages right before my eyes.

I turn away and look at Stephen, who stares back at me. Stephen’s stubble morphs from brown into a muted gray; his hair turns white like snow. He looks like his father. Out of the corner of my eye, I watch the doctor. Now she is growing more radiant with each passing second. All the wrinkles on her face smooth out, her eyes grow pert and oblong, her cheeks gain baby fat, and her hair turns a deep chestnut brown. She’s thirty, twenty, thirteen.

I have a gift. I can age people with my mind. This is who I am. And they cannot take this away from me. I am powerful. Stronger than I have ever been in my life.

^{CHAPTER 18} BREAKING NEWS

Later that same day, a fifth doctor joined the team. My case had piqued the interest of Dr. Ian Arslan, a psychopharmacologist who topped six feet and who looked more like an aging hippie than a doctor. Because of his fondness for beat generation writers and his cerebral way of communicating abstract medical jargon, a colleague described him as a “walking beatnik dictionary.”

He had already heard about my escape attempts and paranoid delusions, so he approached my mother first, asking her to walk him through the past few weeks of my bizarre behavior. Then he interviewed my father. After a short interview with me, which yielded a vivid portrait of my dysfunction, he gathered statements from the nursing staff and even called up Dr. Bailey, who, according to Arslan’s notes, told him that I “drank excessively up to two bottles of wine per night.” Dr. Bailey’s estimate of my vices seemed to have substantially increased. Having summarized all of this, Dr. Arslan jotted down the two diagnoses he wanted to rule out: postictal psychosis and schizoaffective disorder. Knowing it would upset them, he did not share the second diagnosis with my parents.

The term schizoaffective disorder was introduced in 1933 in a much-quoted paper, “The Schizoaffective Psychoses”: “Like a bolt from the blue, full-blown delusions suddenly shatter the poise of a fully rational mind… and flare up without premonitory signs… .²⁰”

A more updated description defines it as a diagnosis when mood symptoms, which are characteristic of bipolar disorder, overlap with psychosis, which is symptomatic of thought disorders like schizophrenia. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, version IV-TR, the edition that was used during my hospital stay, defines the disorder as an “uninterrupted period of illness during which, at some time, there is either a Major Depressive Episode, a Manic Episode, or a Mixed Episode.²¹” To earn such a diagnosis, a patient has to experience two or more of the following: positive symptoms, like delusions, hallucinations, and disorganized speech, and negative symptoms, such as mutism or general apathy.

“We’ll be investigating what’s happening with news reporter Susannah Cahalan, currently at New York University,” a coiffed female anchor announces. I am top-of-the-hour news.

“I’m on the news!” I call out. Nobody answers.

“Her father was recently arrested for the murder of his wife,” the anchor says as the camera pans to my father walking handcuffed through a sea of paparazzi, bulbs flashing, and reporters with their notebooks open and ready to lunge.

I’ve been so stupid. I shouldn’t have answered calls from coworkers. They are secretly writing down what I’m saying. They know I cried in the newsroom. They’ll put that into my story. “New York Post Reporter Unravels after Father Kills Wife.”

“I’m on the news!” I grab the emergency nurse’s call button. They have to know about the plot. They have to know not to let anyone in. “They’re all going to try to interview me,” I scream into my cell phone. Beads of sweat form on my brow. I wipe them away.

I hear the cackling of the patient to my left, a South American woman who spent all day chatting with her visitors in Spanish—or was it Portuguese? Now she’s laughing at me. Maybe she was laughing at me the whole time. I hear her fake fingernails tap her cell phone keys. She’s still speaking in Spanish, or whatever language it is, but now I can understand it.

“There’s a girl from the New York Post in the bed next to me. I’m going to record her with my cell phone and I’ll give you all the information and you can give it to the Post. Tell them it’s an exclusive from someone in the hospital.” She laughs again.

“This girl is loco, trust me. Trust me, this is good stuff, I promise. We can make a lot of money with this scoop. Ca-ha-ha. Call all the local stations. I’ll tell them everything. Just make sure we get some money out of it. Ca-ha-ha.”

PSSSSTTTTT

What the hell was that?

PSSSSSTTTT

I hear it again.

PSSSTTTT over here.

I turn my head to the left. The South American woman has stopped her maniacal texting and has moved the curtain with her hand so that I can see her face.

“The nurses here are bad news,” she says softly.

“What?” I ask, not sure if I heard her correctly or if she spoke at all.

“Shhhh, they can hear you,” she hisses, pointing to the cameras. “The nurses here aren’t right. I don’t trust any of them.”

Yes, yes, Strange Spanish Lady, that is true. But why is this undercover agent telling me this? She moves the curtains back in place, leaving me alone.

I need to leave. Now. Once again I grab the wires on my head, handful by handful, pulling them out with chunks of hair, and throw them on the floor. Instantly, I’m at the door. I’m through it. My heart pounds. I can feel it leaping up into my lungs. The security guard doesn’t notice me. I sprint to the red EXIT sign. A nurse runs up beside me. Think, think, think, Susannah. I dodge into a hallway and run, racing, racing, racing—directly into another nurse’s arms.

“Let me go home! Let me leave!”

She takes me by the shoulder. I kick her, screaming. I bite at the air. I must leave. I must go. LET ME GO. The cold floor. A purple lady grabs hold of my feet as the other nurse holds my arms down. “Please, please,” I try to say through clenched teeth. “Please let me go.”

Darkness.

^{CHAPTER 19} BIG MAN

Two escape attempts earned me a one-to-one guard; now, after the third attempt in as many days, one nurse casually suggested to my father that if I kept dislocating the wires and trying to escape, I wouldn’t be allowed to stay. “If she doesn’t stop with that behavior, she’ll be moved to a place that won’t have this level of care. And she won’t like the place as much, I can promise you that,” she told him. My dad heard the threat loud and clear: if I continued along this path, I would be sent to a psychiatric ward. He decided that whatever happened, he would be by my side. He and I hadn’t spent much time together since the divorce, and he was making up for it now. Having just left his banking job, he had the freedom and flexibility to spend his days with me. And he wanted the staff to know someone was looking out for me. He knew people often saw him as intimidating—despite his average height and build, my babysitter Sybil had always called him “big man”—and he was determined to capitalize on this if it would help me. Since I wouldn’t let him in the room, still convinced he’d murdered Giselle, he decided to hold his vigil out in the hall and read a book.

In the interim, Dr. Russo had changed the chief complaint in her daily progress note from “seizures” to “psychosis and possible seizures” and then finally to just “psychosis.” Postictal psychosis had become less of a primary diagnosis because I had not had a seizure since admission. In those with PIP, the psychosis is unlikely to continue unabated or increase in intensity without any seizure activity. Tests for hyperthyroidism, which can cause psychosis, came back negative, but they had to hold off on other tests. I was still far too psychotic for any more invasive examinations.

However, Dr. Russo also added a line in her progress note that had not been there before: “Transfer to psych [ward], if psych team feels this is warranted.” Like Dr. Arslan, she chose not to tell my parents about this new suggestion.

Although many of these findings were kept from my family and me, it was clear that my place on the epilepsy floor was becoming more and more precarious, just as the nurse had warned my father, both because my seizures seemed to have stopped and because I was such a difficult patient. Sensing that attitudes toward me improved and the level of care rose when company arrived, my dad stuck to his promise and started to arrive first thing every morning. Alone, I could not fight this battle.

My mother came every day, during her lunch hours, any breaks she could get from work, and then again after 5:00 p.m. She maintained several running lists of questions, lobbing one after another at the doctors and nurses, relentless even as so many of her questions remained unanswerable. She collected detailed notes, writing down doctors’ names, home numbers, and unfamiliar medical terms she planned to look up. Though they were barely on speaking terms, she and my father also established a journal system so that they could communicate developments with each other when the other was absent. Though it had been eight years since their divorce, it was still hard for them to be in the same room with each other, and this shared journal allowed them to maintain common ground in the shared fight for my life.

Stephen too played a primary emotional role. I’m told that I would visibly relax when he arrived in the room carrying a leather briefcase that was often filled with Lost DVDs and nature documentaries for us to watch together. The second night I was there, though, I clutched his hand and said, “I know this is too much for you. I understand if you don’t come back. I understand if I never see you again.” It was then, he later told me, that he made a pact with himself not unlike my parents’: if I were in the hospital, he would be there too. No one had any idea if I’d ever be myself again, or if I’d even survive this. The future didn’t matter—he cared only about being there for me as long as I needed him. He would not miss even one day. And he didn’t.

The fourth day, doctors number six, seven, eight, and nine joined the team: an infectious disease specialist who reminded my dad of his uncle Jimmy, who had earned the Purple Heart after storming the beaches of Normandy in World War II; an older, gray-haired rheumatologist; a soft-spoken autoimmune specialist; and an internist, Jeffrey Friedman, a spritely man in his early fifties who, despite the severity of the situation, exuded a natural optimism.

Dr. Friedman, who had been summoned to address my high blood pressure, was immediately sympathetic. He had daughters my age. When he walked into the room, he found me unkempt and confused, fidgeting in bed as Stephen, who sat by my side, tried in vain to calm me. I seemed both sluggish and frantic.

Dr. Friedman attempted a basic health history, but I was too paranoid and preoccupied with those “watching me” to talk coherently, so he went ahead and measured my blood pressure. He was alarmed: with a blood pressure reading at 180/100, those numbers alone could cause brain bleeding, stroke, or death. If she were a computer, he thought, we would have to restart her hard drive. He recommended placing me immediately on two different blood pressure medications.

As Dr. Friedman left the room, he identified my dad outside, sitting in the waiting area reading a book. As the two men chatted about what I was like before I’d gotten sick, my father described me as an active kid, a straight A student who made friends easily, who played hard and worked hard. That picture contrasted sharply with the disarrayed young woman Dr. Friedman had just examined. Even so, he looked my dad directly in his eyes and said, “Please stay positive. It will take time, but she will improve.” When Dr. Friedman embraced him, my dad broke down, a brief surrender.

^{CHAPTER 20} THE SLOPE OF THE LINE

In the few weeks since my strange symptoms had begun, my dad had been spending much more time with me than usual. He was determined to support me as much as possible, but it was taking a toll on him; he had withdrawn from the rest of his life, even from Giselle. Since my breakdown in his apartment, he had also started keeping a daily journal, independent of the one he shared with my mom, not only to try to help him piece together the medical developments but also simply to help himself cope. After my second escape attempt, he wrote a heartbreaking entry about praying that God would take him instead of me.

He remembers in particular one cold, damp, early spring morning, driving to the hospital with Giselle in silence. He knew she would have given anything to help share some of his suffering, but even so, he remained disengaged, bottling up his anguish the way he always had.

At the hospital, he kissed Giselle good-bye and squeezed onto the crowded elevator. It was excruciating taking this trip alongside the fresh-faced new fathers being ferried to the maternity floor, some of whom bounded vigorously off the elevator. Life was just beginning for these people. The next stop was the cardiac floor, full of concerned looks, and then finally it was the twelfth floor: epilepsy. His turn to get off.

As he walked past a wing under renovation, he caught the eye of a middle-aged construction worker, who quickly looked to the floor in embarrassment. Good things were not happening on twelve; everyone knew that. For the past three days, while spending his hours in the temporary, makeshift waiting room, he had been taking stock of the neighboring activity. One particularly sad story was occurring just across the hall, where a young man was recovering after falling down a shaft and sustaining a massive head injury. His elderly parents came every day to see him, but no one seemed hopeful about his recovery. My dad said a quick prayer, pleading with God that my fate would be different from that young man’s, and he breathed deeply as he prepared himself to see what state I was in this morning. I had just been moved to a new, private room, which seemed like a step in the right direction. On his way to my room, he noticed another patient beckoning him over.

“Is that your daughter?” the woman asked, motioning toward my room.

“Yes.”

“I don’t like the things they’re doing to her,” she whispered. “I can’t speak because we’re being monitored.”

There was something odd about this woman, and my father felt himself grow red in the face, embarrassed by the interaction. Still, he couldn’t help but hear the woman out, especially since my own paranoid ravings seemed confirmed by her exhortations. Naturally, he worried about what occurred on the floor in his absence, although he knew deep down that the center was one of the best in the world and that these fears were likely imaginary.

“Here,” she said, handing my dad a crumpled paper with illegible numbers scrawled across it. “Call me and I’ll explain.”

My dad politely put the number in his pocket, but he knew better than to call her. He pushed open the door to my new room, accidentally hitting the security guard whose chair had been propped up against it.

The new room was surprisingly peaceful, with a bank of windows looking out onto the East River and FDR Drive. Barges slipped silently by on their trips downriver. My father was pleased by the change, since he’d grown convinced that the AMU room with its monitors, nursing station, and the constant activity of the three other patients had heightened my anxiety.

When I finally awoke, I saw him and smiled. It was the first time that I had greeted him with warmth since that unspeakable night at his house, the evening before I was admitted. Heartened by my new attitude, he proposed a walk around the floor to keep me active.

Though I readily agreed to the walk, it wasn’t easy to do. I maneuvered my body like an elderly person, stiffly easing myself toward the edge of the bed before dangling my feet over the side. My dad slid a fresh pair of nonskid, moss-colored socks over my feet and helped me off the bed. He noticed I had no electrodes on my head, but as it turned out this was just because I had removed them again during another overnight escape attempt, and the staff hadn’t yet been able to replace them.

Even walking itself was no longer a simple task for me. My dad had always been a fast walker (when James and I were little, he often barreled ahead of us down crowded city streets), but now he was careful to stay by my side, guiding me as each leg jutted out and landed awkwardly, as if I was learning how to walk all over again. He couldn’t help but drop the cheerful facade when he saw my slow movements. When we got back to my room, he suggested a motto to keep my mind on the silver lining.

“What is the slope of the line?” he asked.

I looked at him in silence.

“It’s positive,” he said with forced optimism, angling his arm upward to show a slope. “And what does positive mean?”

Another blank look.

“It means we make progress every day.”

I was deteriorating physically, but at least my psychosis had receded, clearing the way for the doctors to finally schedule more tests. Whatever I suffered from seemed to ebb and flow, minute to minute, hour to hour. Still, the hospital staff jumped on this seeming progress and proceeded with a lumbar puncture, more commonly known as a spinal tap, which would give them access to the clear, saltwater-like cerebrospinal fluid that bathes the brain and spinal cord. The test had been too dangerous to conduct before because a lumbar puncture requires full cooperation from the patient to remain steadfastly still. Sudden movement can mean horrendous risks, including paralysis and even death.

Although my dad understood that the lumbar puncture was a necessary next step, the thought of the procedure still terrified him and my mom. When James was an infant, he had suffered from a dangerously high fever that had required a spinal tap to rule out meningitis, and my parents had never forgotten the baby’s shrill, anguished screams.

The next day, March 27, was my fifth in the hospital but only the second time I had allowed my dad into my room. Most of the time I stared off into space, without any visible display of emotion, my psychosis now completely replaced by passivity. Still, these remote spells were sometimes punctuated by a few passionate pleas for help. In my few seemingly lucid moments (which are, like the rest of this time, still foggy or entirely blank in my own recollection), my dad felt as if some primal part of me was reaching out to him as I repeated over and over, “I’m dying in here. This place is killing me. Please let me leave.” These invocations deeply pained my father. He desperately wanted me out of this soul-sucking situation, but he knew there was no other option than to stay.

Meanwhile, my mom, who had visited me that morning but had had to return to work downtown in the afternoon, worried from afar, checking in with my father periodically to get updates about the procedure. She hid her desperation from her coworkers, focusing instead on her heavy workload, but her thoughts kept circling around me. She tried unsuccessfully to concentrate on getting through the workday, telling herself over and over that she shouldn’t feel guilty and that my father was looking after me.

Eventually, a young male orderly arrived to collect me for my spinal tap, calmly helping me from the bed into the wheelchair and motioning for my dad to follow. After they elbowed their way onto a cramped elevator, the orderly tried to make small talk.

“How are you two related?” he asked.

“I’m her father.”

“Is she epileptic?”

My dad bristled. “No.”

“Oh. I was just asking because I’m epileptic…,” the orderly said, trailing off apologetically.

He wheeled me from one elevator bank to another across the stadium-sized entranceway and finally into a holding pen that also housed five other gurneys, each with its own orderly and patient. My dad angled his body in front of my line of vision so that I would not be tempted to compare my own fate with those around me. She is not one of these people, he repeated endlessly to himself, until the nurse called me in alone. He knew I was just getting a spinal tap, but he couldn’t help his mind wandering to more sinister scenarios. It was that kind of place.

^{CHAPTER 21} DEATH WITH INTERRUPTIONS

Nearly a week had gone by since I was admitted, but inside the hospital it was as if time didn’t exist. Stephen likened the atmosphere to Atlantic City, with beeping blood pressure monitors instead of slot machines and sad, sick patients instead of sad, sick gamblers. Like a casino, there were no clocks or calendars. It was a stabilized, static environment; the only thing that punctuated the time was the endless activity of the nurses and doctors. From what my family could tell, I had developed an affection for two of the nurses: Edward and Adeline. Nurse Edward, a burly guy with a warm smile, was the only man on a floor of all female nurses, and because of this, he was often mistaken for a doctor. He took it in stride, maintaining an extraordinarily cheery disposition, and joked with me about the Yankees and the New York Post, his favorite newspaper. By contrast, Nurse Adeline, a middle-aged Filipino woman, was tigerishly efficient, a straight shooter who offered a healthy dose of discipline. Apparently she had a calming effect on me.

By now, my family had developed a routine. Now that I was again comfortable in his presence, my father would arrive in the morning, feed me a breakfast of yogurt and cappuccino, and play a few games of cards that I was often too disoriented to follow. Then he’d read aloud a book or magazine or just sit beside me quietly reading James Joyce’s Portrait of the Artist as a Young Man. Every day he brought homemade gourmet foods like my favorite dessert, strawberry rhubarb pie, although I would often hand over my father’s dishes to Stephen because I still was not eating regularly. My father had grown up watching his mother, an Irish nurse, whip up elaborate dishes in between ER shifts, and, like her, he unwound when he cooked. Not only did it help me through those hospital days, but it also helped him concentrate on something besides the bleakness.

My mother arrived during her lunch hour and after work to check on me, always keeping that trusty list of questions by her side. Often she stared out at the view of the East River, watching the boats pass the Long Island City PEPSI COLA sign, wringing her hands, a nervous habit, and losing herself in the view. Most days, we’d watch the Yankees play, and she would give me a rundown of what was happening with our favorite players. But mostly she sat beside me, making sure I was comfortable and, above all else, that the best doctors were visiting regularly.

Stephen would arrive around 7:00 p.m. and stay until I fell asleep around midnight. The nursing staff okayed this, even though visiting hours had ended long before, because his calming influence meant that I would not try to escape. Every night Stephen and I watched a twenty-four-minute DVD of Ryan Adams at Austin City Limits, which was on a constant loop. He left it running when he went home, the alt-country songs “A Kiss Before I Go,” “A Hard Way to Fall,” and others playing like twangy lullabies over and over again until a night nurse, seeing that I’d fallen asleep, would turn the television off. Stephen thought the music might somehow help bring me back.

Instead, every time I watched this DVD, it was as if for the first time. My short-term memory had been obliterated, a problem usually rooted in the hippocampus, which is like a way station for new memories. The hippocampus briefly “stores” the patterns of neurons that make up a memory before passing them along to the parts of the brain responsible for preserving them long term. Memories are maintained by the areas of the brain responsible for the initial perception: a visual memory is saved by the visual cortex in the occipital lobe, an auditory memory by the auditory cortex of the temporal lobe, and so forth.

To understand how important the hippocampus is to the circuitry of the brain, all you have to do is consider what happens when it is removed, as in the famous case of the patient who became known to the medical world as H.M. In 1933, a bicycle struck seven-year-old Henry Gustav Molaison near his home in Hartford, Connecticut, knocking him out cold.²² After that fateful accident, H.M. experienced clusters of seizures that increased in intensity until, by his twenty-seventh birthday in 1953, his doctor had decided to remove the bit of brain tissue that seemed to be the focus of his seizures: the hippocampus. When H.M. recovered from the surgery, the seizures were gone, but too went his ability to make memories. The doctors noticed that his old memories were intact up to two years before the surgery, but he could no longer retain new ones. Any new information stayed with him for a mere twenty seconds before it vanished. H.M. lived into his eighties, but always thought of himself as a young man in his mid-twenties, the age he was before his surgery.

His uniquely terrifying situation made him one of the most famous medical studies in history, helping researchers to confirm the existence of anterograde amnesia, or the inability to create new memories. (The movie Memento is modeled after H.M.) His case also established the existence of two different types of memory: declarative (places, names, object, facts, and events) and procedural (those learned as a habit, like tying shoes or riding a bike). Although H.M. could not make any new declarative memories, he retained his procedural memory, which he could unconsciously strengthen with practice.

More recently, an orchestra conductor named Clive Wearing contracted a devastating form of herpes simplex encephalitis that ravaged his brain, destroying his hippocampus. Like H.M., Wearing could not retain any new declarative memories, meaning that his world was constantly new to him. He couldn’t recognize his children, and whenever he saw his wife, to whom he had been married for years, he felt as if he was falling in love for the first time. His wife, Deborah, wrote a book about his case, aptly titled Forever Today. In it she wrote: “Clive was under the constant impression that he had just emerged from unconsciousness because he had no evidence in his own mind of ever being awake before.”²³ A prolific writer himself, Wearing kept lengthy diaries. But instead of filling them with insight or humor, he was constantly writing the following:

}8:31 AM: Now I am really, completely awake.{

}9:06 AM: Now I am perfectly, overwhelmingly awake.{

9:34 AM: Now I am superlatively, actually awake.

Deborah quotes her husband: “I haven’t heard anything, seen anything, touched anything, smelled anything.²⁴ It’s like being dead.”

Although my case luckily was not yet as severe as these, I too had lost key parts of my brain function. Still, certain little things brought me joy: I looked forward to the slow, rickety walks that allowed me to skip the daily shots required to prevent blood clots in bedridden patients. Beyond that, I had two other obsessions, apples and cleanliness. Whenever anybody asked me what I wanted, my answer was always the same: “Apples.” I expressed a constant desire for them, so everyone who visited brought apples: green ones, red ones, tart ones, sweet ones. I devoured them all. I don’t know what prompted this fixation; perhaps some metaphorical urge to “have an apple a day, and keep the doctor away.” Or maybe the urge was more basic: apples contain flavonoids, which are known to have anti-inflammatory and antioxidant effects on the body. Was my body communicating something that my mind—and my doctors—didn’t yet understand?

I also insisted on having my clothes changed and cleaned every day. My mother believed this was a subconscious yearning to rid my body of the sickness, whatever it was. I begged the staff to shower me, even though my hair had to remain matted to my skull because of the constant presence of the EEG wires. Two Jamaican nursing assistants would clean me with warm wet towels, dress me, and coo over me, calling me “my baby.” I relaxed in their care. Watching my contentment during these washing sessions, my father wondered if their accents were transporting me back to my infancy, when Sybil had cared for me like a second mother.

That first Saturday, my parents finally allowed a new visitor, my cousin Hannah. Though she was shocked by what she saw when she arrived, Hannah walked in the room and sat down next to me as if she had done this every day. There in the room with my mom and Stephen, she seemed immediately at home, quiet, unassuming, and supportive.

“Susannah, these are from your birthday. We didn’t get to see you,” she said brightly, handing me a wrapped present. I stared blankly back at her with a frozen smile. Hannah and I had made plans in February to celebrate my belated birthday, but I had canceled because of the “mono” that I believed I had contracted.

“Thank you,” I said. Hannah watched hesitantly as I clawed weakly at the present with half-closed fists. I no longer had the dexterity to even open the wrapping paper. My physical slowness and awkward speech pattern reminded Hannah of a Parkinson’s patient. Gently she took the package from me and opened it.

“It’s Death with Interruptions,” she said. “You liked All the Names, so my mom and I thought you’d like this one, too.” In college I had read José Saramago’s All the Names and spent many nights talking to Hannah’s mother about it. But now I just glanced helplessly at the author’s name and said, “Never read that.” Hannah agreed sweetly and changed the subject.

“She’s really tired,” my mother apologized. “It’s hard for her to concentrate.”

^{CHAPTER 22} A BEAUTIFUL MESS

Troubling new symptoms cropped up in the beginning of the second week. My mother had arrived midmorning to find that my slurring of words had worsened so considerably that it was as if my tongue was five sizes too big for my mouth. This scared her more than the hallucinations, the paranoia, and the escape attempts: this was measurable, consistent change, but in decidedly the wrong direction. My tongue twisted when I spoke; I drooled and, when I was tired, let my tongue hang out of the side of my mouth like an overheated dog; I spoke in garbled sentences; I coughed when I drank liquids, which required that I drink water out of a cup that dispensed only a tablespoon of liquid at a time; I also stopped speaking in full sentences, moving from unintelligible ramblings to monosyllables and sometimes just grunts. “Can you repeat after me?” Dr. Russo, the neurologist, asked. “Ca, ca, ca.”

But the hard sounds of the c’s coming from my mouth were so softened that the consonant became unrecognizable, more like “dtha, dtha, dtha.”

“Would you please puff out your cheeks, like this?” Dr. Russo asked, blowing into her closed mouth, extending her cheeks. I pursed my lips and mimed the doctor, but the air would not fill my cheeks. I just exhaled.

“Will you point your tongue out all the way at me?”

My tongue would extend only about half the length of a normal person’s, and even so, it quivered as if strained by the action.

Later that day, Dr. Arslan confirmed Dr. Russo’s new findings, noting my slurred speech in his progress report. I was also making constant chewing motions, not unlike the lip licking in Summit the week before. And now I was making weird grimaces too. My arms kept stiffening out in front of me, as if I was reaching for something that wasn’t there. The team suspected that these behaviors, combined with the high blood pressure and increased heart rate, pointed to a problem in my brain stem or limbic system.

At the top of the spinal cord and at the underside of the brain is the brain stem, one of the more primitive parts of the brain, which helps oversee basic life-or-death functions.²⁵ A thumb-sized cluster of cells in the brain stem called the medulla manages blood pressure, heart rate, and breathing. A bulging area nearby, the pons, plays an important role in the control of facial expressions, so it made sense that my symptoms might be coming from this area.

Still, it’s hard to lay blame. Many areas of the brain are also involved with these kinds of intrinsic functions. Other possible culprits are the insular cortex, located between the frontal and temporal lobes, which is involved with emotion and maintenance of the body’s internal environment; or they could be caused by parts of the limbic system, such as the amygdala and the cingulate gyrus, which are involved with respiratory control.

To return to the analogy of the Christmas lights, even if just one area goes out, many different connections may be altered. It’s often difficult to locate one area and make a causal connection to basic functions or behavior. Just like everything else in the brain, it’s complicated. Or, as author William F. Allman put it in Apprentices of Wonder: Inside the Neural Network Revolution, “The brain is a monstrous, beautiful mess.”²⁶

Dr. Siegel (my mom’s beloved “Bugsy”) arrived with news shortly after Dr. Arslan had left. “All right, we have something,” he said, speaking rapidly.

“Something?” my mother asked.

“Her spinal tap showed a slightly elevated level of white blood cells. This is typically a sign that there is some kind of infection or inflammation,” he said. There were twenty white blood cells in my spinal fluid in about a microliter of fluid; in a healthy person’s spinal fluid, there should be only zero to five. It was enough for the doctors to wonder, but there were various theories as to why they were there. One of the possible explanations was that they’d been caused by the trauma of the spinal tap itself. Still, it was an indication that something was awry.

“We don’t know what it means yet,” Dr. Siegel said. “We’ve got dozens of tests going. We’ll figure it out. I promise you we will figure it out.”

My mother smiled for the first time in weeks. It was a strange relief for her to finally have confirmation that something physical, as opposed to emotional, was happening to me. She desperately wanted something—anything that she could wrap her mind around. And although this white blood cell clue was vague, it was nonetheless a clue. She went home and spent the rest of the evening on Google, researching what this news could mean. The possibilities were frightening: meningitis, tumor, stroke, multiple sclerosis. Eventually a phone call interrupted her research trance. My voice on the other end sounded like a developmentally delayed child.

“I peed.”

“What happened?”

“I peed. They’re yelling.”

“Who’s yelling at you?” She could hear voices in the background.

“Nurses. I peed. I didn’t mean to.”

“Susannah. They’re not mad at you. I promise. It’s their job to clean it up. They know you didn’t do it on purpose.”

“They’re yelling at me.”

“I promise you it’s not a big deal. It happens. They shouldn’t yell. It was a mistake.” She couldn’t tell what was real and what had been engineered by my tortured mind. Allen agreed that it was likely the latter; either way, they never heard anything more about the incident.

Because I was still paranoid about work and seemed ashamed about my condition, my parents kept my hospital stay a secret from almost everyone, even my brother. But on Tuesday, March 31, as the first week folded into a second, my parents allowed my first nonfamily friend, Katie, to come visit me. Katie and I had met in college and bonded over a shared love for Loretta Lynn, soul music, vintage clothes, and stiff St. Louis cocktails. Katie was vibrant, a bit goofy, and a great partner in crime. Not knowing what to bring, she purchased a stuffed rat (Katie in a nutshell: a rat instead of a teddy bear), a DVD of gangster rap videos, and a subtitled French film, not realizing that I could no longer read.

Katie now worked as a teacher in Queens and had coached many children with serious social issues and learning difficulties, but she was unprepared for what she found on the other side of the hospital door. This new me was physically different: skinny and pale, cheeks sunken in, and thighs whittled down to toothpicks. My eyes were glazed over. Trying to break the ice, Katie gossiped about people we had gone to college with, knowing that her role was to distract me from the serious matters around me. But it was hard to maintain a conversation because I operated on a delay, responding to basic questions several seconds after they were posed. And then there was the problem of my speech. I had been a professional conversationalist, normally the kind of person who could make small talk with a brick wall, but this new me struggled with even the simplest statements. Most of the time Katie couldn’t even make out what I was saying.

“Let’s go for a walk,” Katie suggested, joking, “Don’t forget your Dora the Explorer backpack.” It took me several moments to realize that Katie was referring to the little pink bag that carried my EEG wires, but eventually I laughed. We shuffled slowly to the waiting area and sat on two chairs facing away from the windows. Katie noticed how baggy my black leggings were.

“You’re so skinny, Susannah!”

I looked down at my legs for a moment, like I was discovering a new part of my body. I laughed and said: “Theeeeessssseearrrrre my legggggggggggings! My legggggggggings! My legggggggggggings!” and got out of my seat to perform an awkward Irish jig. Weird, yes, but I was dancing, so Katie took that as a good sign.

After Katie’s visit, the next friends to come were Angela and Julie from work. Angela hadn’t seen me since the emotional evening at the Marriott Hotel when I couldn’t stop crying. Since then I had called her a few times in the middle of the night, breathing heavily into the phone but saying nothing. Julie had spoken to me once since the day that she suggested that I was bipolar, when she phoned me in the hospital. The only thing I could offer was, “I had pie for breakfast.”

Today, when I knew they were coming, I’d asked for one thing: a cheeseburger. As they carried the burgers and fries up in the elevator, neither one was sure what to expect.

They walked into the hospital room and found my cousin Hannah seated beside me, keeping me company. I was clearly happy to see them. I gave them a fixed but wide, toothy smile as they tried to ignore the shock of seeing me with my white hat and those multicolored wires. Angela handed me a cheeseburger, but I put it on the bedside table, untouched, and later gave it to Stephen when he arrived that night. Julie, never one to be shy, immediately jumped into bed next to me. She dug her cell phone out of her bag and scrolled through her pictures until she found the right one.

“Do you want to see a picture?” she asked, and all four girls hovered around the phone. “It’s my poop!”

Everyone but me gasped.

“They wouldn’t let me leave the hospital after Teddy was born until I took one. I was so proud that I took a picture.” Julie had given birth to her son about a month earlier. Angela and Hannah started laughing hysterically as I grabbed the cell phone, peered in close, and, several seconds later, broke out into hysterical, near sobbing laughs. The three others looked at each other and lost it again. I seemed happy and more with it during these visits. As Stephen had noticed, I seemed to be able to somehow pull myself together when I had visitors, but it would often leave me depleted and unable to communicate for hours afterward, as if I had devoted all my energy to acting normal.

Angela, ever the reporter, immediately began asking questions. “Susannah, what’s going on here?”

“I… don’t… remember,” I stuttered. A little while later I interrupted a separate conversation, my voice suddenly clearer but still just as slow: “What are people saying about me?”

“Don’t worry about it. No one is saying anything about it. They’re all just concerned,” Angela replied.

“No, tell me. I want to know.”

“Nothing bad, Susannah. Nothing bad. I promise.”

“I know that Gawker has been saying bad things about me,” I insisted, referring to the gossip blog.

Julie and Angela threw each other a strange look. “What do you mean?”

“Gawker. It’s saying bad things about me. They put my name in the headline of a piece,” I said and sat up in bed, deadly serious. “Should I call them?”

Angela shook her head. “Um, no. That’s probably not a good idea. Why don’t you write an e-mail when you’re feeling better?”

After about an hour, Angela and Julie said their good-byes and walked down the hallway to the elevators. They pushed the button, still in silence, and waited. When they got in, Julie said quietly, “Do you think she’s ever going to be the same?”

It was a fair question. The person whom Angela and Julie had just visited was not the one they had been friends with for so many years.

But still, there was something of me that remained. Though I could no longer concentrate enough to read, I still had some ability to write, so my father gave me a lined notebook to record how I felt, to help me communicate with visitors and help them better understand what was going on.

In addition to tracking my difficulties in the notebook, I became temporarily obsessed with thanking the various people who had sent me flowers. All sorts of arrangements had been arriving in my room: white daffodils, yellow tulips, pink roses, orange sunflowers, and pink and white lilies (my favorite). I begged my father to help make a list of the people to send thank-you notes once I felt better. When I got too tired to continue writing, my father wrote out some of the names and short thank-you notes for me. But I never got the opportunity to send them out. Because things would get worse before they would get better.

^{CHAPTER 23} DR. NAJJAR

The blood test had come back from the Centers for Disease Control and the New York State labs: everything was negative. The doctors now had a long list of the things I did not have. The infectious disease panel included:

• Lyme disease, often caused by tick bites

• Toxoplasmosis, a parasitic disease usually carried by cats

• Cryptococcus, a type of fungus that can cause meningitis

• Tuberculosis, which affects the lungs

• Lymphoreticulosis, or “cat scratch fever”

The autoimmune panel of tests, which tests for some but not all of the 100 plus autoimmune diseases, also came back negative, including:

• Sjögren’s syndrome, which affects the glands that produce tears and saliva

• Multiple sclerosis, which harms the fatty layer of myelin that sheaths neurons

• Lupus, a connective tissue disease

• Scleroderma, a disease of the skin

Nada. Nothing had come back abnormal. Even the various MRIs and CT scans were clean. If the labs were to be believed, I was 100 percent healthy. My parents could sense that the doctors were starting to despair that they would never figure it out. And if there wasn’t a physical problem to cure, everyone understood—though no one would admit—that I would be on my way out to a far worse place. At this point, my family needed someone who would believe in me no matter what. This was the only time in my mother’s long experience with doctors that she had hoped for positive test results. At least then we would have an answer.

My mom had started to look forward every day to seeing the grandfatherly Dr. “Bugsy”; his perpetual good cheer and kind words had become one of the only bright spots in these darkening days. When he didn’t arrive on the afternoon that the test results came back, she worried, and wandered the hallway looking for him. She spied his white lab coat as he left one of the other rooms down the hall.

“Oh, Dr. Siegel,” she said, her voice rising on the end of his name. He turned around swiftly without smiling, evidently in a hurry. “What’s going on with Susannah? Anything new?”

He stared back without his familiar warmth and optimism. “I’m not on the case anymore,” he said flatly and turned to leave.

“What, what?” she stammered, her lower lip quivering. “What do we do?”

“I don’t know what to say. It’s no longer my case,” he replied. He turned and walked briskly away. She suddenly felt very alone. There had been many low points throughout my illness, but this rebuff was the lowest. This doctor, one of the best in the country, had now, it seemed, given up on me.

She took another deep breath, straightened out her blazer, and headed back into my room. She felt foolish for believing that I had been anything but a patient—one in a series of numbers—to him. She could hardly stand to look at Dr. Russo when she came in later that afternoon. Now she was our only hope—that is, until Dr. Russo, as she was finishing up the examination, turned to my mother and said, “Dr. Najjar and I feel that a second spinal tap is now necessary.”

My deteriorating condition made the idea of another spinal tap, once so frightening, now seem insignificant. But my mother clung to the mention of a new doctor. “Who is Dr. Najjar?”

“He’s working on your daughter’s case. He’s a brilliant doctor,” Dr. Russo said.

Dr. Souhel Najjar had joined my team after a call from Dr. Siegel. His skill in solving a few mystery cases had earned him a reputation as the man to go to when nothing made sense. And now Dr. Bugsy was offering up his most perplexing case to him.

“I’m at a loss,” Dr. Siegel confided to Dr. Najjar. “I need your help on this case.” He listed all the issues and conflicting diagnoses. The psychiatrists suspected that my behavior stemmed from a mental illness; the elevated white blood cell count pointed to infection; all the other tests were coming back negative. Dr. Najjar’s first guess was that I had to be suffering from some sort of viral encephalitis, an inflammation most likely caused by the herpes virus. He didn’t buy the schizoaffective theory and instead suggested that they administer an infusion of IV acyclovir, an antiviral drug.

But then the virus panel came back negative. I did not have HIV or herpes simplex virus 1 or 2 and did not test positive for herpes encephalitis, so he stopped the antiviral infusions. The other possibility was that it was some sort of autoimmune response, which he could treat with an experimental immunotherapy that he had tried successfully on another patient with brain inflammation; the treatment included steroids, intravenous immunoglobulin (IVIG), and plasma exchange.

“I think we should do IVIG treatment immediately,” Dr. Najjar said after looking over my negative virus panel.

^{CHAPTER 24} IVIG

On April 2, the nurses started my first round of five intravenous immunoglobulin (IVIG) infusions. The clear IV bags hung on a metal pole above my head, their liquid trickling down into my vein. Each of those ordinary-looking bags contained the healthy antibodies of over a thousand blood donors and cost upwards of $20,000 per infusion. One thousand tourniquets, one thousand nurses, one thousand veins, one thousand blood-sugar regulating cookies, all just to help one patient.

IVIG is made up of serum antibodies called immunoglobulin G, or IgG, which are the most common type of antibody found in the human body.²⁷ IVIG is approved by the U.S. Food and Drug Administration to treat problems relating to transplants, leukemia, and pediatric HIV, among other conditions; its off-label uses have often been considered “experimental” and denied by insurance companies.

Antibodies are created by the body’s immune system to counteract an unwanted, external element, such as when a pathogen of some sort—a virus, bacterium, fungus, or other foreign substance—enters the body.²⁸ This sets off a series of reactions beginning with the body’s basic alarm system, the innate response, which is a one-size-fits-all process designed to get rid of unwanted visitors quickly. If the innate system can’t eradicate the pathogen, the next defense stage is the “adaptive response,” which tailors itself to the specific intruder, using an arsenal of white blood cells and antibodies. This takes much longer to mobilize than the innate response, ten days versus the innate system’s minutes or hours.²⁹ Usually the collateral damage of these internal battles results in familiar flulike symptoms such as headache, fever, muscle ache, nausea, and enlarged lymph nodes.³⁰

One type of white blood cell, the B-cell, also can morph into plasma cells that create antibodies.³¹ Under normal conditions, each antibody fits exactly to only one pathogen, like Cinderella’s glass slipper, with the purpose of blocking the spread of infection by either disabling that specific kind of pathogen or flagging it for destruction. But autoantibodies, which everyone has in healthy doses, can sometimes transform into the most malicious type of biological shadowboxer, if they begin to attach to and destroy the healthy host tissue, like the brain. An IVIG infusion introduces fresh, healthy antibodies to fuse with those “bad” rogue autoantibodies created by a sick person’s immune system, helping to neutralize them and rendering the autoantibodies harmless.

Beep, beep, beep. It’s dark. There’s the beeping of a massive machine to my right. There’s a wire hooking me up to heaving bags of white liquid. I put Stephen’s headphones on and close my eyes. I am far, far away from here. I am myself again.

“This next song is to my friend Leah who couldn’t be here tonight…”

The hum of the guitar. The soft tap on the drums. The swell of the music. It’s Halloween night at Harlem’s Apollo Theater. I’m at a Ryan Adams concert. I can see him onstage, strumming on his guitar, but I can’t keep my eyes open to watch the scene. I feel a touch on my skin. It makes me shudder. I hear a voice.

“SuSHana, time to take vitals.”

The concert disappears, dissolving into the dark hospital room, the nurse next to me. I’m back, back in the place where there is no night and there is no day. It’s this woman’s fault I’m back here. I’m suddenly filled with blinding, focused rage. I wind my right arm back and punch her in the chest. She gasps.

The next morning, my mother took her usual place beside me in a chair by the window when her phone rang. It was James. My parents had been keeping him uninformed about the severity of my illness, not wanting to worry him and disrupt his studies. He and I had always been close, despite the five-year age difference, and our parents knew he would drop everything and come home if he discovered how bad off I was. But today, for the first time, she decided to hand off the phone to me.

“James… James… James,” I said, hearing my brother’s voice on the other line. “James… James… James.”

In his dorm room in Pittsburgh, James choked back tears. I sounded so different, so unlike his big sister. He insisted, “I’m going to come home soon. And you’re going to get better.”

The following day, while I was on my second course of IVIG treatment, Dr. Arslan, the psychopharmacologist, came by on rounds and noticed that my speech problems had worsened. He wrote the following in his progress note:

It was the first time that anyone had mentioned the term catatonia, a stage defined by absence, by inability, by nonbehaviors. The mnemonic that doctors use to diagnose catatonia is WIRED ’N MIRED:³²

• Waxy flexibility/catalepsy (muscular rigidity and fixedness of posture)

• Immobility/stupor

• Refusal to eat or drink

• Excitement

• Deadpan staring

• Negativism/negative symptoms

• Mutism

• Impulsivity

• Rigidity

• Echolalia (automatic repetition of words or statements said by another person)

• Direct observation

Catatonia comes from the misfiring of neurons. That “muscular rigidity,” also called posturing, occurs when the chemical link is severed between the patient’s awareness of her body and the feeling of comfort and appropriateness of movement. In other words, a catatonic patient cannot sense his or her body in space, and therefore cannot appropriately adjust. The result is that a person sits very still in awkward, atypical, unnatural poses. Catatonia is more akin to the results of a botched lobotomy than a persistent vegetative state because the person is technically still active. There are behaviors of a sort, as bizarre, nonresponsive, and inappropriate as they may be.

Meanwhile, a comment that the nurse had made the night before was haunting Stephen. She was a young Asian immigrant who had just begun working at New York University. While examining me, she said offhandedly, “Has she always been so slow?”

Stephen shook his head violently, struggling to control his temper. How dare she say something like that. Susannah is not, and never was, slow.

The next morning, Stephen ran into my father in the hallway. At first, they spoke about superficial things—the cold weather, how Stephen’s work was, and so forth. But the conversation quickly turned to me.

“She’s still in there,” Stephen said. “I can see her. She’s still there. I know it.”

“I agree. And that’s who we’re fighting for. None of the doctors and nurses see it, but we do,” my dad said. “And we have to remain strong for her.”

“Agreed.” The two men shook hands. My dad wrote about his new impression of Stephen in his journal: “The one friend who did come everyday was Stephen. He was terrific. I wasn’t that sold on him when I first met him, but he grew in my respect and regard with every day that passed.”

^{CHAPTER 25} BLUE DEVIL FIT

They did the second lumbar puncture on April 9. I had been in the hospital for eighteen days, and not only wasn’t I any closer to a cure, but my condition seemed to be heading steadily downhill. For one, Stephen had noticed that my constant chewing motions, my bride-of-Frankenstein arm movements, and my staring episodes had become more frequent.

During moments like these, Stephen couldn’t will the night of the initial seizure on March 13 out of his mind. “What do you think that was?” Stephen asked Nurse Adeline later that night.

“Maybe she was just trying to get your attention?” Southerners called attention-seeking attacks “blue devil fits,” a vivid description of temper tantrums or anxiety attacks exhibited by young women. “Maybe it was some sort of an anxiety attack?”

Stephen didn’t buy this explanation. The next night, the same thing happened.

“I… don’t… feel… gooooood,” I said, angling my legs off the bed. Stephen followed my lead and lowered the guardrail and guided me out of bed and onto the floor. I began heaving for air again and crying. Stephen pushed the call button.

“My… heart… hurtssssssss…,” I said, holding my chest and squirming on the cold hospital floor. “I… can’t… breeeeathe.”

A nurse came rushing in. She took my vital signs and noted slightly increased blood pressure of 155/97. She hooked me up to a two-liter oxygen machine that can help with cardiac issues and convulsions. Soon after, I fell asleep. Variations on the same scene would happen over and over almost every night when Stephen was visiting. They rarely happened with anyone else. No one ever provided an explanation.

My whole family was growing increasingly wayworn as time went on and no one seemed to have an answer. All the tests continued to come back negative, the immunoglobulin treatments didn’t seem to be the magic elixir that everyone had hoped they would be, and no one had been able to figure out what the high white blood cell count might be suggesting. Worse, Dr. Bugsy was now off the case, and this Dr. Najjar, whom everyone spoke so highly of, still hadn’t made an appearance. What would stop the others from giving up too and condemning me to a mental institution or a nursing home? Quietly, secretly, despite all their steadfast optimism, my family began to worry that if things continued to go downhill, they really might lose me forever.

The next day, the results from the spinal tap came back. Dr. Russo delivered the news, which was alarming but at least meant they were nearing an answer: my cerebrospinal fluid had eighty white blood cells in about a microliter of cerebrospinal fluid, up from twenty the week before. This meant that my brain was almost certainly inflamed; now they just had to figure out what was causing it. When I arrived on the floor, the chief complaint was seizures; then it was changed to psychosis; now Russo wrote down “encephalitis of an unknown origin.” Encephalitis, one neurologist would eventually explain, colloquially meant “bad brain,” or the inflammation of the brain due to a host of causes.

Since my mom hadn’t been there for Dr. Russo’s visit, my dad jotted the news down in their shared logbook:

He tried to communicate the good news to me, but I couldn’t follow. “Why don’t you copy what I’ve written, and write a few extra things as I tell you,” he said.

We imagined that when people came to visit, I could hand over this paper, hoping it would tell the whole story. The plan didn’t last long: By the time Hannah arrived that same day, I could not find the notebook. It had been lost among the flowers and magazines that packed the hospital room. “I have, I have…” I struggled to explain. Hannah slid into bed beside me and laced her arms around my neck.

“I have, I have, I have…” I said.

“It’s okay, Susannah, just drop it. You’re tired,” my mother interrupted.

“No. I want to,” I stammered. My whole body tensed. “I… want… to… speak!”

“You’re tired, sweetie. You should rest,” my mom said.

I exhaled angrily. My mom understood that I was deeply frustrated by my inabilities and by being babied. Hannah sensed my irritation and distracted me with a month’s worth of US Weekly magazines and the copy of Catcher in the Rye that I had begged her for. Because I could no longer read on my own, Hannah read to me until I closed my eyes to sleep. Suddenly, though, I looked up at her.

“Tlantyoiforslen,” I said. “Tlantyoiforslen! Tlantyoiforslen!” I began repeating over and over, my face reddening.

“You’re welcome,” Hannah said, uncertainly.

I shook my head violently. “No, no, no!”

“Tlantyoiforslen!!!” I yelled. Hannah bent down closer to my face, but proximity only made me more unintelligible. I began pointing emphatically toward the door.

“Slefeen, sleefen!”

Finally, Hannah understood. She called Stephen in, and when I saw him, I instantly calmed.

The next day, taking a cue from my high white blood cell count, the doctors began looking for the source of my infection. A new set of blood tests was pending, so Nurse Edward came to draw blood. Stephen sat beside me, impressed by my demeanor today. Though I was far from my old self, bits of my old humor seemed to have resurfaced. I smiled more, and appeared more engaged with the Yankees game, even commenting that I loved pitcher Andy Pettitte.

“How’s the game?” Nurse Edward asked. “Are the Mets winning?” He made a joke. I held out my arm. I had done this so many times that it was all rote now. Edward put on his gloves; placed a tourniquet around my right forearm; prepped the vein, tapping it with his fingers; and bent down to insert the needle. But as the needle punctured my skin, I jumped up violently and in one quick motion slapped the needle out of his hand, sending blood spurting out of my vein. I smiled, looking down in mock sheepishness, as if to say, sarcastically, “Oops, what have I done?” It was obvious to Stephen that I meant, “Fuck off.” Sometimes when I seemed to be doing better, the original psychosis would return. This frightened everyone.

“Susannah, please don’t do that. You can really get hurt and maybe hurt me. But it’s going to hurt you a lot more,” Edward said, keeping his voice under control. He prepared the needle again and raised it over my outstretched arm.

“Okay,” I said mildly. He inserted the needle, withdrew a few tubes of blood, and walked out of the room.

^{CHAPTER 26} THE CLOCK

“Waher,” I moaned, pointing to a pink pitcher on my bedside table. It was the day we were finally expecting Dr. Najjar to make an appearance. I was drooling and smacking my lips, a habit that now went on constantly, even while I slept. My dad put down his playing cards, picked up the pitcher, and walked out to the hallway to refill it. He returned to find me staring straight ahead. It seemed as if I were sleeping with my eyes open, my tongue hanging out of my mouth. By this point, he was so used to these scenes he took it all in stride. Instead of waking me, he silently read A Portrait of the Artist as a Young Man until my mother arrived.

“Hello,” my mother said cheerily, entering the room. She propped her leather bag on the chair by the bed and kissed me. “I’m so excited to finally meet the mysterious Dr. Najjar today. What do you think he’ll be like?” she continued brightly, enthusiasm radiating from her almond-shaped eyes. “He should be here any moment.”

Enthusiasm was hard for my dad this morning. “I don’t know, Rhona,” he said. “We don’t know anything yet.”

She shrugged him off and grabbed a tissue to wipe the drool pooling on the side of my face.

“Hello, hello!” A few minutes later, Dr. Najjar strode into my private room, 1276, his voice booming. He had a measured gait and a slight slope to his back that made his head fall a few inches in front of his body, most likely due to the hours he spent hunched over a microscope. His thick mustache was worn at the tips from his habit of twisting and pulling at it when he was deep in thought.

He extended his hand to my mother, who, in her eagerness, held it firmly a bit longer than normal. Then he introduced himself to my father, who rose to greet him from the chair by my bed.

“Let’s go through her medical history with you before I begin,” he said. His Syrian accent hopped rhythmically, sticking on and accentuating the hard consonants, often turning t’s into d’s. When he got excited, he dropped prepositions and combined words, as if his speech could not keep up with his thoughts. Dr. Najjar always stressed the importance of getting a full health history from his patients. (“You have to look backward to see the future,” he often said to his residents.) As my parents spoke, he took note of symptoms—headaches, bedbug scare, flulike symptoms, numbness, and the increased heart rate—that the other doctors had not explored, at least not in one full picture. He jotted these all down as key findings. And then he did something none of the other doctors had done: Dr. Najjar redirected his attention and spoke directly to me, as if I was his friend instead of his patient.

One of the remarkable things about Dr. Najjar was his very personal, heartfelt bedside manner. He had an intense sympathy for the weak and powerless, which, as he told me later, came from his own experiences as a little boy growing up in Damascus, Syria. He had done poorly in school, and his parents and teachers had considered him lazy. When he was ten, after he failed test after test in his private Catholic school, his principal had told his parents that he was beyond help: “Education is not for everyone. Maybe it would be best for him to learn a trade.” Angry as he was, his father didn’t want to stop his schooling—education was far too important—so although he didn’t have high hopes, he put his son in public school instead.

During his first year at public school, one teacher took a special interest in the boy and often made a point to praise him for his work, slowly raising his confidence. By the end of that year, he came home with a glowing, straight A report card. His father was apoplectic.

“You cheated,” Salim said, raising his hand to punish his son. The next morning, his parents confronted the teacher. “My son doesn’t get these types of grades. He must be cheating.”

“No, he’s not cheating. I can assure you of that.”

“Then what kind of school are you running here, where a boy like Souhel can get these kinds of grades?”

The teacher paused before speaking again. “Did you ever think that you might actually have a smart son? I think you need to believe in him.”

Dr. Najjar would eventually graduate at the top of his class in medical school and immigrate to the United States, where he not only became an esteemed neurologist but also an epileptologist and neuropathologist. His own story carried with it a moral that applied to all of his patients: he was determined never to give up on any of them.

Now, in my hospital room, he crouched down beside me and said, “I will do my best to help you. I will not hurt you.” I didn’t say anything, looking emotionless. “Okay, let’s begin. What is your name?”

A considerable pause. “Su… sa… nnn… aaah.”

“What is the year?”

Pause. “2009.” He wrote down “monosyllabic.”

“What is the month?”

Pause. “Appril. Appril.” I struggled here. He wrote “indifferent,” meaning apathetic.

“What is the date?”

I looked forward, showing no emotion, saying nothing, not blinking. He wrote down “paucity of eye blinking.” I didn’t have an answer for him on this one.

“Who is the president?”

Pause. I raised my hand rigidly in front of me. He wrote “stiff-bodied” on his chart. “Wha?” No emotions. Nothing.

“Who is the president?” He noted “lack of attention span.”

“O, Obama.” He wrote, “low tone, monotonous with a substantial lisp.” I was not able to control the movements of my tongue. He removed a few tools from his white lab coat. Using a reflex hammer, he tapped on my kneecaps, which did not jerk forward the way they should. He shined a light into my eyes, noting that my pupils were not properly constricting.

“Okay, now, touch your nose with this hand,” he said, touching my right arm. Stiffly and robotically, I raised my arm and in several slow-moving motions, reached my hand to my face, narrowly missing my nose. Hellishly catatonic, he thought.

“Okay,” he said, testing my ability to do a two-step command. “Touch your left ear with your left hand.” He grazed my left arm to indicate right from left, doubting I could figure it out myself. I didn’t move or react; instead, I just sighed. He told me to forget about this step and moved on to another. “I’d like you to get out of bed and walk for me.” I dangled my feet over the edge and slid haltingly onto the floor. He took my arm and helped me stand. “Will you walk a straight line, one foot after the other?” he asked.

Taking a minute to think it through, I began walking in short spurts but with delays between steps. I angled toward my left side—Najjar noticed I was showing signs of ataxia, a lack of coordinated movement. I walked and talked like many of his late-stage Alzheimer’s patients, who have lost their capacities to speak and appropriately interact with their environments, save for short bursts of uncontrolled, abnormal movements. They do not smile, hardly blink, and remain unnaturally rigid, with one foot firmly planted in another world. And then he had an idea: the clock test. Although developed in the mid-1950s, the clock test had been entered into the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders only in 1987 and is used to diagnose problem areas of the brain in Alzheimer’s, stroke, and dementia patients.³³

Dr. Najjar handed me a blank sheet of paper that he had ripped out of his notebook and said, “Would you draw a clock for me and fill in all the numbers, 1 through 12?” I looked up at him with confusion. “As you remember it, Susannah. It does not have to be perfect.”

I looked at the doctor and then back down at the paper. I held the pen loosely in my right hand, as if it were a foreign object. I first drew a circle, but it was lopsided and the lines were too squiggly. I asked for another sheet. He tore another out for me, and I tried again. This time a circle took shape. Because circle drawing is a type of procedural memory (one that was also still present in the famous amnesiac patient H.M.), that is, an overlearned practice, like tying shoes, patients have done it so many times before that they rarely get it wrong, so it didn’t surprise him that I drew it with relative ease the second time. I outlined the circle once, twice, and then three times, an act called perseverative dysgraphia, a disorder in which a patient draws and redraws lines or letters. Dr. Najjar waited expectantly for the numbers.

“Now draw numbers on the clock.”

I hesitated. He could see me straining to remember what a clock face looked like. I hunched over the paper and began to write. Methodically I wrote the numbers. Often I would get stuck on a number and draw it several times: more perseverative dysgraphia.

After a moment, Dr. Najjar looked down at the page and nearly applauded. I had squished all the numbers, 1 through 12, onto the right-hand side of the circle; it was a perfect specimen, with the twelve o’clock landing almost exactly where the six o’clock should have been.

Dr. Najjar, beaming, grabbed the paper, showed it to my parents, and explained what this meant. They gasped with a combination of terror and hope. This was finally the clue that everyone was searching for. It didn’t involve fancy machinery or invasive tests; it required only paper and pen. It had given Dr. Najjar concrete evidence that the right hemisphere of my brain was inflamed.

The healthy brain enables vision through a complex process involving both hemispheres.³⁴ First, certain receptors are activated in the retina, and information passes through the eye and visual pathways until it reaches the primary visual cortex, located at the back of the brain, where it becomes one single perception, which the parietal and temporal lobes then process. The parietal lobes provide the person with the “where and when” of the image, situating us in time and space. The temporal lobe supplies the “who, what, and why,” governing our ability to recognize names, feelings, and memories. But in a broken brain, where one hemisphere isn’t working properly and the flow of information is obstructed, the visual world becomes lopsided.

Because the brain works contralaterally, meaning that the right hemisphere is responsible for the left field of vision and the left hemisphere is responsible for the right field of vision, my clock drawing, which had numbers drawn on only the right side, showed that the right hemisphere—responsible for seeing the left side of that clock—was compromised, to say the least. Visual neglect, however, is not blindness. The retinas are still active and still sending information to the visual cortex; it’s just that the information is not being processed accurately in a way that enables us to “see” an image. A more accurate term for this, some doctors say, is visual indifference:³⁵ the brain simply does not care about what’s going on in the left side of its universe.

The clock test also helped explain another aspect of my illness that had largely been ignored: the numbness on the left side of my body that had since become a long-lost nonissue. The parietal lobe is also involved in sensation, and malfunction there could result in a feeling of numbness.

This single clock-drawing test answered so much: in addition to the numbness on the left side, it explained the paranoia, the seizures, and the hallucinations. It might even account for my imaginary bedbugs, since my “bites” occurred on my left arm. Ruling out schizoaffective disorder, postictal psychosis, and viral encephalitis and taking into account the high white blood cells in the lumbar puncture, Dr. Najjar had an epiphany: the inflammation was almost certainly the result of an autoimmune reaction, caused by my own body. But what type of autoimmune disease? There had been an autoimmune panel, which tests for only a small fraction of the hundred or so known autoimmune diseases, that had come back negative, so it couldn’t be one of those. Dr. Najjar then recalled a series of cases in the recent medical literature about a rare autoimmune disease that affects mostly young women that had come out of the University of Pennsylvania. Could that be it?

There were other questions: How much inflammation? Was my brain salvageable? The only way to answer these questions was to do a brain biopsy, and he wasn’t sure my parents would agree to one. No one liked the sound of a brain biopsy, which involved cutting out a small piece of my brain to study, but without quick intervention, my condition might not improve. The longer the problem continued without proper intervention, the worse my chances for returning to my former self became. As he mulled this over, he pulled at his mustache absentmindedly and paced around the room.

Finally, he sat down on the bed near me. He turned to my parents and said, “Her brain is on fire.” He took my small hands into his large ones and leaned down to my eye level. “I’m going to do everything I can for you. I promise I will always be there for you.”

For a moment, I seemed to come alive, he would later recall to me. I’ll always regret that I remember nothing of this pivotal scene, one of the most important moments of my life.

Dr. Najjar saw tears gather at the corners of my eyes. I sat up and threw my arms around him. For him, it was another crucial moment in my case: he could sense that I was still in there, somewhere. But it was just a blip. After that outpouring, I lay back down and dozed off, exhausted by the brief display of emotion. But he knew I was there, and he would not give up on me. He motioned for my parents to follow him outside the room.

“Her brain is on fire,” he repeated. They nodded, eyes wide. “Her brain is under attack by her own body.”

^{CHAPTER 27} BRAIN BIOPSY

Dr. Najjar’s news didn’t end there. “The next course of treatment, I feel, should be steroids, but we need to confirm the inflammation before moving on,” he said.

“How?” my mother asked.

“There is a doctor at the University of Pennsylvania who specializes in autoimmune disease, and I believe he will have the answers we are looking for. Meanwhile,” he paused, knowing my parents would not be pleased by what he was about to say, “there are several ways we can go with this. There are the steroids. There is plasmapheresis. There is IVIG.”

My parents nodded again, in unison, entirely taken by this force of a man.

“But I think the best thing to do,” he said, lowering his voice, “is to do a brain biopsy.”

“What does that mean?” my mother asked quietly.

“We would need to look at her brain and take a small”—he put two fingers up and separated them by a centimeter—“piece of her brain.”

My father bristled. “I don’t know about that.”

“I promise you that if it she were my child, I would do a brain biopsy. The risks of not doing it far outweigh the risks of doing it. The worst thing that can happen is that we end up in the same place we are now.”

They didn’t say a word.

“I want to do this Monday, Tuesday at the latest,” he said. “But it is up to you. In the meantime, I will talk it over with the team and the surgeon. Let me think about it. And I will let you know.”

As Dr. Najjar walked away, my mother whispered, “He’s a real-life Dr. House.”

Later that afternoon, Dr. Russo arrived to confirm to my parents that the team’s decision was to move forward with a brain biopsy. My mom tried to remain calm, but she felt helpless. She motioned for Dr. Russo to join her outside the room in the hallway. She had so many questions for her, but all she could grasp on to were those two simple, bone-chilling words: brain biopsy. After weeks of maintaining a facade of composure, she had finally hit her breaking point and started to sob. Dr. Russo stood with her hands crossed over her chest and then reached out and ever so slightly touched my mother’s arm.

“It’s going to be fine,” Dr. Russo said.

My mom wiped her tears and took a deep breath. “I better go back in.”

When she returned, my dad threw her an accusatory glance. “We heard you,” he said.

Despite his gruffness, as he would later write in his journal, he felt the same concerns as my mother: “The very sound of a brain biopsy scared me. I could hear my mother’s voice telling me not to do it. I could hear her tell me to never let anyone mess with the brain. She had seen a lot of bad things happen as an RN and she didn’t trust brain surgeons. I had to remind myself how long ago that was.”

Depleted by the morning’s events, the clock drawing, and the brain biopsy news, my dad walked across town from NYU to Thirty-Third Street, to catch the subway on Park Avenue South. Between First and Second Avenues, he spotted the Chapel of the Sacred Hearts of Jesus and Mary. Impulsively, he walked into the chapel, admiring the stained glass windows and the vibrant painting of an angel wrapping her arms around a broken man. He got on his knees and prayed.

That same afternoon, downtown in the Manhattan district attorney’s office, my mom was doing something similar. She held hands with her secretary, Elsie, and her coworker Regina, who was also a Baptist minister. All three closed their eyes and held hands in a circle as Regina’s voice rose high above them: “God, cure this young lady. God, hear us, hear our prayers. We pray for you to cure this girl and make her better. Hear our prayers. Please hear our prayers.” My mom, a no-nonsense agnostic Jewish girl from the Bronx, now swears she felt the presence of God.

I was blissfully unaware of my parents’ anguish. I texted my college friend Lindsey, who lived in St. Louis: “I’m getting a briannopsy!”

“What? What do you mean?” Lindsey wrote back, confused by the misspelling.

“They’re taking a peece of my brain!”

My friend Zach, who was splitting cat-sitting duties with another coworker and friend, Ginger, called that day as well. I shared the news in the same manner that I would have told him what I had for lunch.

“I’m having a brain opsy,” I said.

“Hold on, Susannah. They’re doing surgery on your brain?” he asked, clearly concerned. It was the first time that someone had expressed to me directly how distressing the surgery sounded. I began to cry tears of fear and confusion and finally hung up, too upset to continue with the conversation.

It was Easter weekend. On Saturday, the surgeon’s head nurse arrived to describe the preparation for the brain surgery. She seemed upbeat and managed to make the biopsy sound routine. This did not quell my father’s fears. As she described where they were going to shave my head—the front part above my right forehead about four inches in toward the crown—I listened impassively, and my dad was impressed by my dignity. It was only later that night that I began to break down. Seeing me upset made my dad cry too. Then he heard me laughing.

“You look funny when you cry,” I giggled. Suddenly we were both laughing and crying. Through his tears, he reminded me of our motto.

“What’s the slope of the line?”

“Um.” I couldn’t remember the answer.

“Positive. And what does that mean?”

“Um.” I moved my arm upward, indicating progress.

“Right. Getting better every day.”

The next day was Easter morning, and my dad brought me an Easter basket, the same basket he had given to me since I was a child, filled with chocolates and jellybeans. He was delighted to see me looking like a kid again, eyes wide, ready to pounce on the candy.

My parents arrived extra early on Monday morning, filled with both dread and excitement. For my part, I seemed unnaturally calm. Eventually an orderly, whom they thought looked like a Hells Angel, put me on a stretcher and wheeled me down into surgery. My parents hung back for a few seconds. Setting aside years of betrayal, emotional estrangement, and petty fights, they briefly exchanged a hug and a few quiet tears.

The OR was the embodiment of medicine on an industrial scale, a sterile place with doors snaking into dozens of operating theaters. Gone were the landscape paintings and soothing music; this was where the serious surgeries happened. We waited in the area immediately in front of the elevators, held back by large, clear vertical blinds. Everyone on the other side of the blinds wore surgical scrubs.

The neurosurgery resident came by to shave my head. The doctor shaved a good five-inch diameter section from my head, but, although I appeared fully conscious, I did not scream, call out, or cry. My dad again admired this strength, though it’s possible I simply had no idea what was going on. I sat on the bed unfazed with my head wrapped in a towel, as if I had just received a spa treatment.

Fighting back tears, my dad knelt beside me.

“Remember what I told you. What is the strategy?”

“One step at a time.”

“What is the slope of the line?”

“Positive.”

Neurosurgeon Dr. Werner Doyle donned his surgical gown and prepped for surgery. He entered the operating room flanked by a scrub nurse, a circulating nurse, and an anesthesiologist. Despite the relative safety of this procedure, any number of things could still go wrong: they could have chosen the wrong location to dissect, and there is always a risk of infection or mistake with any type of surgery, especially the kinds involving the brain. But still, brain biopsies were simple compared to the more complex epilepsy surgeries that he had grown accustomed to performing over the years.

A new MRI had been loaded into his office computer and workstation, and it guided the surgeon through a process called frameless stereotactic neurosurgery, which involves the visual mapping of the brain in both three and two dimensions so that the surgeon can swiftly and accurately target one specific area of the brain—in this case, the right frontal cortex. He had already chosen an area, one without any large draining veins, farthest away from the parts of the brain responsible for motor functions. My gurney was rolled over to the operating table, my scalp shaved and cleaned. Then they put me under general anesthesia.

“Count down from 100,” the anesthesiologist instructed.

“100… 99…”

As my eyes closed, they secured the head holder onto my temples to keep me still. With a scalpel, Dr. Doyle made an S-shape incision, 4 centimeters from the midline of the scalp over the right frontal region. The arm of the S extended just behind my hairline. He parted the skin with a sharp blade and gripped each side with retractors. Grasping a high-speed drill in his hands like a skillful carpenter, he pressed it down on the skull, making a “burr hole,” or a 1-centimeter-diameter aperture through the bone of the skull. He then went over the burr hole with a craniotome, a bigger drill, grinding the bone into dust. He removed a 3-centimeter piece of the bone plate, exposing the dura, or the outermost, leathery, protective layer of the brain, and saved a section to send for testing along with the brain tissue.

With a fine #11 blade and a dissector, he cut several cubes of tissue, equaling about 1 cubic centimeter in volume, which included white matter (strands of nerve fibers) and gray matter (the cell bodies of neurons). He set aside specimens for future studies and an extra sample to be frozen in case other tests were needed. He swabbed the brain matter and stopped the blood flow using cottonoids, highly absorbent synthetic fibers.

He then very carefully stitched a dura graft onto the outer layer of the brain, suturing it together, and then reattached the bone plate. He pushed the plate to one side, butting it up against the existing bone so that it would fuse, and then secured the plate using screws and a small metal plate. He ended the procedure by returning the outer layer of skin to its original position, and closing the scalp with metal staples. The whole procedure took four hours.

“Count down from 100,” a disembodied voice says.

“100… 99… 98…”

Darkness.

Blink. Blink. Blink. “I’m still awake.”

Darkness.

A crowded recovery room. I’m alone. There’s a family to the right of me, surrounding another patient. Where are my parents?

Then I see them. Mom and Dad. I can’t move.

Then Stephen and Allen. I try to raise my arm slightly to wave; it feels as heavy as a fifty-pound weight.

Darkness.

“Thirsty.” My voice is hoarse. “Thirsty.”

“Here,” a brusque nurse says, shoving a water-soaked sponge into my mouth. The texture is unpleasant but the water is a godsend. I suck and suck. “Thirsty.” She shoves another one in my mouth. I hear the parents beside me feeding their kid ice chips. I raise my arm. I want some. A male nurse approaches. “Ice.” He brings me a few ice chips and places them on my tongue. I can hear the female nurse telling him not to give me water. “She can’t have any water. Just ignore her.”

“Water, water,” I moan.

She approaches. “I’m sorry but you can’t have any more.”

“I’m going to tell everyone how you treated me. I’m going to tell everyone when I get out of here.”

“What did you say?” Her tone scares me.

“Nothing.”

Darkness.

I’m in a claustrophobic one-person room. I have to pee. I have to pee. I push. My catheter comes undone and the urine sprays all over the bed. I call out. A nurse comes in.

“I peed.”

Another nurse joins her. They turn me on my left side, remove the bedding, wash me with warm towels, and spritz me with something. Then they turn me over to the right side and repeat. It feels nice. But I can’t move. I push hard with my brain, trying to wiggle my toes. I push so hard that I get a headache. My toes don’t move.

“I can’t move my legs,” I call out.

Many hours after the surgery, around 11:00 p.m., a nurse informed my dad, who had chosen to wait for news while everyone else went home at the staff’s insistence, that I had been moved from the recovery room into the ICU. They didn’t invite him in to see me, but he wandered into the unit anyway, unaccompanied. The floor consisted of a handful of bays, one patient in each. There were nurses everywhere, but no one even looked twice at him. He peeked into each bay until he spotted me.

There I was, semiconscious, propped up on pillows with my head wrapped in white gauze like some kind of sick Persian princess. I was attached to monitors and machines that beeped and groaned and had been wrapped up in nude compression stockings to keep my blood pressure normal. When he caught my eye, I instantly recognized him, which didn’t always happen. We hugged.

“The worst is behind you, Susannah.”

“Where’s Mom?” I asked.

“She will see you tomorrow,” he said. He could tell I was upset that my mother hadn’t come, even though it had been the right decision for her to go home that night. Then: “I can’t feel my legs, Dad.” I sounded convinced.

“Are you sure, Susannah?” my dad asked, turning white with fear. This had been the worry all along, that they would do permanent damage by messing with my brain.

“Yes. I can’t move them.”

My dad immediately called in a young resident, who came in and examined me, then rushed me out for an emergency MRI. My dad silently hurried beside the gurney, holding my hand until the MRI technician whisked me into the room, telling my dad to wait. In those thirty minutes, he would later sigh, he lost five years off his life. But the young resident eventually emerged to tell him that everything looked fine.

My dad stayed with me until I fell asleep. Then he went home and slid into bed, prayed, and fell into a restless slumber.

^{CHAPTER 28} SHADOWBOXER

After the surgery, I was reassigned to a shared room on the epilepsy unit. My roommate, a woman in her early thirties, suffered from seizures induced during alcohol consumption (though seizures occur commonly with alcohol withdrawal, sometimes drinking can induce seizures). She was constantly begging the staff to allow her to drink some wine so that they could record the seizure. They refused.

The results of the brain biopsy confirmed what the team had expected: my brain was inflamed. Dr. Najjar’s slides showed armies of angry inflammatory cells from my immune system attacking nerve cells in the brain, a signature of encephalitis.

There was a time, not so long ago, when neurologists believed that the brain was immunoprivileged, meaning it was completely separate from the immune system’s lymphocytes; now doctors use the careful phrasing “immuno-different.” The blood-brain barrier (BBB) is a dense patchwork quilt of vessels that serve as gates, regulating the passage of substances, like bacteria, chemicals, and drugs, from the blood to the brain.³⁶ Researchers have discovered that the BBB does allow for certain B-cells and T-cells to squeeze through, in a process called diapedesis, to do regular “checkups.” But this was no routine checkup. The immune cells it had let through, which were supposed to protect the body, were in mid-blitz. This was the evidence Dr. Najjar had needed: I was in the grip of some kind of autoimmune disease.

Now that they had a hazy diagnosis, the doctors could move ahead with the first phase of treatment, intravenous steroids, a form of immunotherapy that suppresses inflammation created by the body’s immune system. A clear plastic bag of Solu-Medrol, an IV steroid, hung beside my bed for three days of intensive therapy. It was administered every six hours on an IV pump. These steroids, called corticosteroids, subdue the inflammation and quiet the immune system, which in turn quells future inflammation.³⁷ As the steroids seeped into my system, they switched off inflammatory chemicals called cytokines. Dr. Najjar approved the highest dosage possible for three days. Then he would convert me to 60 milligrams of the oral steroid prednisone, which would continue, more gently, to quell the inflammation over time.

Because corticosteroids interact with blood-sugar levels, among other things, I developed a temporary form of type II diabetes. Though the doctors changed my menu, providing only sugar-free Jell-O as a sweet snack, my parents remained oblivious to the dangers of my Easter jellybeans, as I continued to munch away. Since I was placed on bed rest following surgery, the nurses applied thigh-high compression boots, which blow up and deflate, pumping blood through my legs and mimicking the act of contracting and expanding during physical activity. But they made my legs itchy and sweaty, as I explained to anyone who would listen, and I kicked them off every night.

Despite the new intensive steroid treatment, my condition did not seem to improve right away. In fact, it worsened; the abnormal nightly movements and undefined panic attacks increased. My father wrote about my continued difficulties in the logbook that he and my mom shared: “She had a strange smirking expression on her face. She tensed up,” he wrote. “Arms stretched out straight, grimace, tenseness, shakes.”

But I could still pull myself together for visitors. Hannah arrived soon after the surgery and stifled a laugh when she saw my strange white turban of bandages.

I was a good sport about it. “I’m going to be bald!” I said, smiling, and popped an Easter jellybean into my mouth.

“What do you mean? Did they shave your scalp?”

“Bald!”

“Maybe you need Propecia.” We both cracked up.

By our third night in the shared room, the woman next to me had a seizure. Somehow she had convinced the medical staff to allow her to drink wine. Since they had what they needed, a physical recording of a seizure, she was released shortly thereafter.

^{CHAPTER 29} DALMAU’S DISEASE

Dr. Russo arrived later that day to explain which diseases they could now tick off the list of possibilities, including hyperthyroidism, lymphoma, and Devic’s disease, a rare disease similar symptomatically to multiple sclerosis. They still suspected that I had been exposed to hepatitis, which can cause encephalitis, but they didn’t have proof.

After the conversation, my mother followed Dr. Russo into the hallway. “So what do you think it is?” my mom prodded.

“Actually, Dr. Najjar and I have a bet going.”

“What kind of a bet?”

“Well, Dr. Najjar thinks the inflammation is caused by autoimmune encephalitis; I think it’s paraneoplastic syndrome.”³⁸ When my mother pressed for more details, Dr. Russo explained that paraneoplastic syndrome is a consequence of an underlying cancer, most often associated with lung, breast, or ovarian cancer. The symptoms—psychosis, catatonia, and so forth—are not associated with the cancer but with the immune system’s response to it. As the body gears up to attack the tumor, it sometimes begins to target healthy parts of the body, such as the spine or the brain. “I think because of her history of melanoma, it makes sense,” Dr. Russo concluded.

This was not what my mother wanted to hear. Cancer had always been the greatest fear, the word she dared not utter. Now this doctor was tossing it off casually as part of a bet.

Meanwhile, two plastic tubes, placed securely in Styrofoam boxes, had arrived at the University of Pennsylvania, transported in a refrigerator in the back of a FedEx truck; one contained transparent cerebrospinal fluid, as clear as unfiltered water, and another held blood, which started to look like dehydrated urine as, over time, the red blood cells dropped to the bottom. The test tubes were coded 0933, labeled with my initials, SC, and placed in a negative-80 degree freezer waiting for the lab to conduct its tests. They were addressed to the lab run by neuro-oncologist Dr. Josep Dalmau, whom Dr. Najjar had mentioned during his first visit and whom Dr. Russo had since e-mailed to ask if he would take a look at my case.

Four years earlier, in 2005, Dr. Dalmau had been the senior author on a paper in the neuroscience journal Annals of Neurology that focused on four young women who had developed prominent psychiatric symptoms and encephalitis. All had white blood cells in their cerebrospinal fluid, confusion, memory problems, hallucinations, delusions, and difficulty breathing, and they all had tumors called teratomas in their ovaries. But the most remarkable finding was that all four patients had similar antibodies that appeared to be reacting against specific areas of the brain, mainly the hippocampus. Something about the combination of the tumor and the antibodies was making these women very sick.

Dr. Dalmau had noticed a pattern in these four women; now he had to learn more about the antibody itself. He and his research team began to work night and day on an elaborate immunohistrochemistry experiment involving frozen sections of rat brains, which had been sliced into paper-thin pieces and then exposed to the cerebrospinal fluid of those four sick women. The hope was that the antibodies from the cerebrospinal fluid would bind directly to some receptors in the rat brain and reveal a characteristic design. It took eight months of tinkering before a pattern finally emerged.

Dr. Dalmau had prepared the rat brain slides all the same, placing a small amount of cerebrospinal fluid from each of the four patients on each. Twenty-four hours later:

Four beautiful images, like cave drawings or abstract seashell patterns, revealed the antibodies’ binding to the naked eye. “It was a moment of great excitement,” Dr. Dalmau later recalled. “Everything had been negative. Now we became totally positive that all four not only had the same illness, but the same antibody.”

He had clarified that the pattern of reactivity was more intense in the hippocampus of the rat brain, but this was only the beginning. A far more difficult question now arose: Which receptors were these antibodies targeting? Through a combination of trial and error, plus a few educated guesses about which receptors are most common in the hippocampus, Dr. Dalmau and his colleagues eventually identified the target. Using a kidney cell line bought from a commercial lab that came with no receptors on their surfaces at all, a kind of “blank slate,” his lab introduced DNA sequences that direct the cells to make certain types of receptors, allowing the lab to control which receptors were available for binding. Dalmau chose to have them express only NMDA receptors, after figuring out that those were the most likely to have been present in high volume in the hippocampus. Sure enough, the antibodies in the cerebrospinal fluid of the four patients bound to the cells. There was his answer: the culprits were NMDA-receptor-seeking antibodies.

NMDA (N-methyl-D-aspartate acid) receptors are vital to learning, memory, and behavior, and they are a main staple of our brain chemistry.³⁹ If these are incapacitated, mind and body fail. NMDA receptors are located all over the brain, but the majority are concentrated on neurons in the hippocampus, the brain’s primary learning and memory center, and in the frontal lobes, the seat of higher functions and personality. These receptors receive instructions from chemicals called neurotransmitters. All neurotransmitters carry only one of two messages: they can either “excite” a cell, encouraging it to fire an electrical impulse, or “inhibit” a cell, which hinders it from firing. These simple conversations between neurons are at the root of everything we do, from sipping a glass of wine to writing a newspaper lead.

In those unfortunate patients with Dr. Dalmau’s anti-NMDA-receptor encephalitis, the antibodies, normally a force for good in the body, had become treasonous persona non grata in the brain. These receptor-seeking antibodies planted their death kiss on the surface of a neuron, handicapping the neuron’s receptors, making them unable to send and receive those important chemical signals. Though researchers are far from fully understanding how NMDA receptors (and their corresponding neurons) affect and alter behavior, it’s clear that when they are compromised the outcome can be disastrous, even deadly.

Still, a few experiments have offered up some clues as to their importance. Decrease NMDA receptors by, say, 40 percent, and you might get psychosis; decrease them by 70 percent, and you have catatonia. In “knockout mice” without NMDA receptors at all, even the most basic life functions are impossible: most die within ten hours of birth due to respiratory failure.⁴⁰ Mice with a very small number of NMDA receptors don’t learn to suckle, and they simply starve to death within a day or so. Those mice with at least 5 percent of their NMDA receptors intact survive, but exhibit abnormal behavior and strange social and sexual interactions. Mice with half their receptors in working order also live, but they show memory deficits and abnormal social relationships.

As a result of this additional research, in 2007, Dr. Dalmau and his colleagues presented another paper, now introducing his new class of NMDA-receptor-seeking diseases to the world. This second article identified twelve women with the same profile of neurological symptoms, which could now be called a syndrome.⁴¹ They all had teratomas, and almost all of them were young women. Within a year after publication, one hundred more patients had been diagnosed; not all of them had ovarian teratomas and not all of them were young women (some were men and many were children), enabling Dr. Dalmau to do an even more thorough study on the newly discovered, but nameless, disease.

“Why not name it the Dalmau disease?” people often asked him. But he didn’t think “Dalmau disease” sounded right, and it was no longer customary to name a disease after its discoverer. “I didn’t think that would be wise. It’s not very humble.” He shrugged.

By the time I was a patient at NYU, Dr. Dalmau had fine-tuned his approach, designing two tests that could swiftly and accurately diagnose the disease. As soon as he received my samples, he could test the spinal fluid. If he found that I had anti-NMDA-receptor autoimmune encephalitis, it would make me the 217th person worldwide to be diagnosed since 2007. It just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?

^{CHAPTER 30} RHUBARB

By my twenty-fifth day in the hospital, two days after the biopsy, with a preliminary diagnosis in sight, my doctors thought it was a good time to officially assess my cognitive skills to record a baseline. This test would be a fulcrum, a turning point, that would measure what kind of progress they could expect in the future through the various stages of treatment. Beginning on the afternoon of April 15, a speech pathologist and a neuropsychologist visited me for two days in a row, each for separate assessments.

The speech pathologist, Karen Gendal, did the first assessment, starting with basic questions: “What’s your name?” “How old are you?” “Are you a woman?” “Do you live in California?” “Do you live in New York?” “Do you peel a banana before eating it?” and so forth. I was able to answer all of these questions, though I did so slowly. But when she asked the more open-ended question “Why are you in the hospital?” I could not explain. (To be fair, the doctors didn’t know either, but I could not provide even the basics.)

After some spotty and tangential answers, I finally said, “I can’t get my ideas from my head out.” She nodded: this was a typical response for people suffering from aphasia, a language impairment related to brain injury. I also had something called dysarthria, a motor speech impairment caused by a weakness in the muscles of the face, throat, or vocal cords.

Gendal asked me to stick out my tongue, which trembled from the effort. It had a reduced range of motion on both sides, which was contributing to my inability to articulate.

“Would you smile for me?”

I tried, but my facial muscles were so weak that no smile came. She wrote down “hypo-aroused,” a medical term for lethargic, and also noted that I was not fully alert. When I did talk, the words came out without any emotional register.

She moved on to cognitive abilities. Holding up her pen, she asked, “What is this?”

“Ken,” I answered. This, again, wasn’t too unusual for someone at my level of impairment. They call it phonemic paraphasia, where you substitute one word for another that sounds similar.

When she asked me to write my name, I painstakingly drew out an “S,” tracing the letter multiple times before moving on to the “U,” where I did the same. It took several minutes for me to write my name. “Okay, would you write this sentence out for me: ‘Today is a nice day.’”

I drew out the letters, retracing each of them several times and misspelling some words. My handwriting was so poor that Gendal could hardly make out the sentence.

She wrote her impression in the chart: “It is difficult to determine at just two days post-operation to what extent communication deficits are language-based versus medication or cognitive. Clearly communication function is dramatically reduced from pre-morbid level when this patient was working as a successful journalist for a local paper.” In other words, there seemed to be a dramatic change between the person I had been and the person I was now, but it was difficult at the time to distinguish my problems understanding from my inability to communicate—and whether these would persist in the long or short term.

Later the next morning, neuropsychologist Chris Morrison arrived with her auburn hair piled high on her head and green-flecked hazel eyes flashing. She was there to test me on something called the Wechsler Abbreviated Scale of Intelligence, as well as other tests, that are used to diagnose a number of things, from attention deficit disorder to traumatic brain injuries. But when she entered the room, I was so unresponsive she wasn’t even sure that I could see her.

“What is your name?” Dr. Morrison began brightly, walking me through the basic orienting questions that by now I had been conditioned to answer correctly. Her next stage of questions assessed attention, processing speed, and working memory, which she compared to a computer’s random access memory (RAM), as in, “How many programs you can have open all at once—how many things you can keep in your head at once and spit back out.”

Dr. Morrison provided me with a random assortment of single-digit numbers, 1 through 9, and asked me to repeat them to her. Once we got up to five digits, I had to stop, though seven is the normal limit for people of my age and intelligence.

Next, she tested the word-retrieval process, to see how well I was able to access my “memory bank.” “I’d like you to name as many fruits and vegetables as possible,” she said, starting a sixty-second timer.

“Apples,” I began. Apples are a common fruit to start with, and of course they had been on my mind a lot lately.

“Carrots.”

“Pears.”

“Bananas.”

Pause.

“Rhubarb.”

Dr. Morrison chuckled inwardly at this one. The minute was over. I had come up with five fruits and vegetables; a healthy individual could name over twenty. Dr. Morrison believed that I knew plenty more examples; the problem seemed to be retrieving them.

She then showed me a series of cards with everyday objects on them. I could name only five of the ten, missing examples like kite and pliers, though I struggled as if the words were on the tip of my tongue.

Dr. Morrison then tested my ability to view and process the external world. There are many different things that must come together for a person to accurately perceive an object. To see a desk, for example, first we see lines that come together at angles, then color, then contrast, then depth; all of that information goes into the memory bank, which labels it with a word and, depending on the object, an emotion (to a journalist, a desk might elicit guilty feelings about missed deadlines, for example). To track this set of skills, she had me compare the size and shape of various angles. I scored on the low end of average on these, well enough for Dr. Morrison to move on to more difficult tasks. She introduced a set of red and white blocks and placed them on the foldout tray in front of me. She then showed me a picture of how the blocks should be arranged and asked me to re-create the picture with a timer running.

I stared at the pictures and then back at the blocks, moved them into a pattern that had nothing to do with the picture, and looked back at the picture for reference. I fiddled with the blocks some more, getting nowhere, but refused to give up. Morrison wrote down “tenacious in her attempts.” I seemed to realize I wasn’t getting it right, which frustrated me deeply. It was clear that, for all my other impairments, I knew that I was not functioning at the level I was used to.

The next step was for me to copy down complex geometric designs on graph paper, but my abilities here were so weak that Dr. Morrison decided to stop altogether. I was flustered, and she worried that moving forward would only make me feel worse. Dr. Morrison was convinced that I was very much aware, despite the cognitive issues, of what I could no longer do. In her review later that day, she marked cognitive therapy as “highly recommended.”

^{CHAPTER 31} THE BIG REVEAL

Later that afternoon, my dad had been trying to interest me in a game of gin rummy when Dr. Russo and the team arrived.

“Mr. Cahalan,” she said. “We have some positive test results.”

He dropped the playing cards on the floor and grabbed his notebook. Dr. Russo explained that they’d heard back from Dr. Dalmau with a confirmation of the diagnosis. Her words flew at him like shrapnel—bang, bang, bang: NMDA, antibody, tumor, chemotherapy. He fought to pay close attention, but there was one key part of the explanation that he could hold on to: my immune system had gone haywire and had begun attacking my brain.

“I’m sorry,” he interrupted the barrage. “What is the name again?”

He wrote the letters “NMDA” in his block lettering:

Anti-NMDA-receptor encephalitis, Dr. Russo explained, is a multistage disease that varies wildly in its presentation as it progresses. For 70 percent of patients, the disorder begins innocuously, with normal flulike symptoms: headaches, fever, nausea, and vomiting, though it’s unclear if patients initially contract a virus related to the disease or if these symptoms are a result of the disease itself.⁴² Typically, about two weeks after the initial flulike symptoms, psychiatric issues, which include anxiety, insomnia, fear, grandiose delusions, hyperreligiosity, mania, and paranoia, take hold. Because the symptoms are psychiatric, most patients seek out mental health professionals first. Seizures crop up in 75 percent of patients, which is fortunate if only because they get the patient out of the psychologist’s chair and into a neurologist’s office. From there, language and memory deficits arise, but they are often overshadowed by the more dramatic psychiatric symptoms.

My father sighed with relief. He felt comforted by a name, any name, to explain what had happened to me, even if he didn’t quite understand what it all meant. Everything she said was matching up perfectly to my case, including abnormal facial tics, lip smacking, and tongue jabbing, along with synchronized and rigid body movements. Patients also often develop autonomic symptoms, she continued: blood pressure and heart rate that vacillate between too high and too low—again, just like my case. She hardly needed to point out that I had now entered the catatonic stage, which marks the height of the disease but also precedes breathing failure, coma, and sometimes death. The doctors seemed to have caught it just in time.

When Dr. Russo began to explain that there are treatments that have been proven to reverse the course of the disease, my father nearly sank to his knees and thanked God right there in the hospital room. Still, Dr. Russo cautioned, even once you have a diagnosis, there are still substantial question marks. Though 75 percent of patients recover fully or maintain only mild side effects, over 20 percent remain permanently disabled and 4 percent die anyway, even despite a swift diagnosis.⁴³ And those aforementioned “mild” side effects might mean the difference between the old me and a new Susannah, one who might not have the humor, vitality, or drive that I did before. Mild is a vague and undefined term.

“About 50 percent of the time, the disease is instigated by an ovarian tumor, called a teratoma, but in the other 50 percent of cases, the cause is never discovered,” Dr. Russo continued.

My dad looked at her quizzically. What the hell is a teratoma?

It was probably best that he didn’t know. When this type of tumor was identified in the late 1800s, a German doctor christened it “teratoma” from the Greek teraton, which means monster.⁴⁴ These twisted cysts were a source of fascination even when there was no name for them: the first description dates back to a Babylonian text from 600 B.C. These masses of tissue range in size from microscopic to fist sized (or even bigger) and contain hair, teeth, bone, and sometimes even eyes, limbs, and brain tissue. They are often located in the reproductive organs, brain, skull, tongue, and neck and resemble pus-soaked hairballs. They are like those hairy, toothy creatures in the 1980s horror film franchise Critters. The only good news is that they are usually—but not always—benign.

“We will need to do a transvaginal exam to see if there are any signs of tumors,” said Dr. Russo. “We’ll also check her over to see if there’s any link with her history of melanoma. If so, we’ll have to move on with chemotherapy.”

“Chemotherapy.” My father repeated the word in the hope that she had gotten it wrong. But she hadn’t.

My dad looked over at me. I had been staring off to the side, disassociated from the exchange, not seeming to gauge the magnitude of the moment. Suddenly, though, at the word chemotherapy, my chest began heaving, and I let out a deep sigh. Tears streamed down my face. My dad ran from his chair and threw his arms around me. I continued to sob without saying a word, as Dr. Russo waited quietly while he rocked me. He couldn’t tell if I understood what was going on or if I was just attuned to the amplified electricity in the room.

“This is killing me,” I said, my voice high yet unemotional, despite the sobs. “I’m dying in here.”

“I know, I know,” he said. With my head in his arms, he could smell the glue on my hair. “We’re going to get you out of here.”

After a few moments, my sobs stopped, and I lay back on the bed, my head against the pillow, staring straight ahead. Quietly, Dr. Russo continued. “Overall, this is good news, Mr. Cahalan. Dr. Najjar believes that there is a possibility that Susannah could get back as much as 90 percent of her former self.”

“We could get her back?”

“There seems to be a strong possibility.”

“I want to go home,” I said.

“We’re working on doing just that,” Dr. Russo replied with a smile.

Over the weeks, I had gone from being a notoriously difficult patient to a favorite, the ward’s “interesting consult” for a host of attending doctors, interns, and residents hoping to catch a glimpse of the girl with the unknown disease. Now that we had a diagnosis that had never before been seen at NYU, young MDs, hardly a day older than me, stared at me as if I were a caged animal in a zoo and made muffled assessments, pointing at me and craning their heads as more experienced doctors gave a rundown of the syndrome. The next morning, as my father fed me oatmeal and chopped-up bananas, a group of residents and medical students arrived. The young man leading the group of nascent MDs introduced my case as if I weren’t in the room.

“This is a very interesting one,” he said, leading a gang of about six others into the room. “She has what is called anti-NMDA-receptor autoimmune encephalitis.”

The group ogled me and a few even let out a few quiet “ooohs” and “ahhhs.” My father gritted his teeth and tried to ignore them.

“In about 50 percent of the cases, there is a teratoma in the ovaries. If this is the case, this patient may have her ovaries removed as a precaution.”

As the spectators nodded their heads, I caught this somehow, and began to cry.

My father bolted from his seat. This was the first time he had heard anything about my ovaries being removed, and he certainly didn’t want either of us hearing it from this kid. A born fighter and a strong man for his age (or for any other age), my dad bum-rushed the scrawny young physician and pointed a finger in his face.

“You get the fuck out of here right now!” His voice bounced around the hospital room. “Never come back. Get the fuck out of the room.”

The young doctor’s confidence deflated. Instead of apologizing, he waved his hand, urging the other interns to follow him toward the door, and made his escape.

“Forget you heard that, Susannah,” my dad said. “They have no idea what the hell they’re talking about.”

^{CHAPTER 32} 90 PERCENT

That same day, a dermatologist arrived and conducted a full-body skin exam to check for melanoma, which took about thirty minutes because my body is covered in moles. But after a thorough search, the dermatologist concluded that, happily, there was no sign of melanoma. That evening, they wheeled me down, yet again, to the second-floor radiology department, where they would conduct an ultrasound of my pelvis in search of a teratoma.

I am awakened, even though I hadn’t been asleep. I had imagined this moment: the time when I would find out the gender of my child. Momentarily, I think, “I hope it’s a boy.” But the feeling passes. I would be happy with either a girl or a boy. I can feel the cool metal of the transducer against my belly. My chest wall leaps up into my throat in reaction to the cold. It was almost exactly how I imagined it to be. But then again not at all.

Distraught by the first ultrasound, I refused a transvaginal one, the more invasive pelvic examination. Still, even from the imperfect first test, there was good news: no sign of a teratoma. The bad news was that, ironically, teratomas were good news, because those with them tend to improve faster than people without them, for reasons researchers still don’t understand.

Dr. Najjar arrived the next morning alone and greeted my parents as if they were old friends. Now that they had identified the disease, and knew that there was no teratoma, it was time to figure out what treatment could save me. If he miscalculated, I might never recover. He had spent the night deliberating about what to do, waking up in sweats and rambling to his wife. He had finally decided to act with abandon. He didn’t want to wait for things to worsen; I was already too close to the edge. He delivered the plan of action while tugging at the corners of his mustache, deep in thought.

“We’re going to put her on an aggressive treatment of steroids, IVIG treatment, and plasmapheresis,” he said. Although he had a terrific bedside manner, sometimes he expected his patients to follow him as if they were trained neurologists.

“What will these all do?” my mother asked.

“It’s a three-pronged attack, no stoned turned,” Dr. Najjar said, missing the English idiom. “We’re going to reduce the body’s inflammation with steroids. Then flush the body of the antibodies with plasmapheresis, and further reduce and neutralize the antibodies with IVIG. It leaves no room for error.”

“When will she be able to go home?” my dad asked.

“As far as I’m concerned, she could leave tomorrow,” Dr. Najjar replied. “The steroids could be taken orally. She could return to the hospital for plasma exchange, and the IVIG treatment, if the insurance company approved it, could be done with a nurse at home. With all these treatments I believe that it’s likely Susannah will get back to 90 percent.”

Though I don’t remember the diagnosis, my parents tell me that when I heard this my demeanor changed, and I seemed bolstered by the news that I would be returning home soon. Dr. Russo noted in my chart that I appeared “brighter,” my speech “improved.”

Home. I was going home.

The next morning, Saturday, April 18, I was finally discharged. I had been in the hospital for twenty-eight days. Many of the nurses—some of whom had washed me, others who had injected me with sedatives, and a few of whom had fed me when I could not feed myself—came to say their good-byes. Nurses seldom find out how a patient fares after she leaves the hospital, and I was still in a particularly bad place. A small, hunched-over man entered the room holding papers. He had secured an at-home nurse to tend to me and had recommended a clinic where I could receive full-time rehab. My mother took the papers, but only absentmindedly flipped through them; she would address these later. For now, we were going home, and that was all that mattered.

My mom, my dad, Allen, Stephen, and my college friend Lindsey, who had flown in from St. Louis the day before, all grabbed my possessions—stuffed animals, DVDs, clothes, books, and toiletries—and crammed them in clear plastic NYU “Patient’s Belongings” bags; they left behind the flowers and magazines. A transport staff worker helped me into a wheelchair as my mom placed slip-on flats on my feet. It was the first time I had worn shoes in a month.

The night before, my dad had made a sign thanking the nurses for their support. He posted it near the elevators:

My prognosis was still unclear—the projection was only “fair”—and no one could say with any certainty if I would ever get to that optimistic “90 percent,” or if I would ever regain any semblance of my former self. But they had a plan. First, I would continue to see Dr. Najjar every other Wednesday. Second, I would get a full-body positron emission tomography scan (PET scan) that creates a three-dimensional image of the body, which is different from MRIs and CT scans because it shows the body in the process of functioning. Third, I would be enrolled in cognitive and speech rehabilitation, and they would arrange for a twenty-four-hour nurse to care for me. Fourth, I would take oral steroids, receive plasma-exchange treatment, and get several more infusions of IVIG. But the doctors were aware that even months after the disease has run its course and immunosuppressants have been worked into the system, antibodies can still persist, making recovery a painful march of two steps forward, one step back.

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.