Brain On Fire: My Month Of Madness Part 7

"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 a.s.sistant. 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 cl.u.s.ter 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. 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 pract.i.tioner, 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 s.e.xual 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 ident.i.ty disorder (DID), it is a condition where a person exhibits several distinct and entirely separate ident.i.ties, 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. Now called dissociative ident.i.ty disorder (DID), it is a condition where a person exhibits several distinct and entirely separate ident.i.ties, 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 a.s.sign 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 pa.s.sing 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 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. 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 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.... 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 a.s.sociation's Diagnostic and Statistical Manual of Mental Disorders, 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. 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.

EEG video, March 24, 11:06 p.m., 11 minutes"Patient push b.u.t.ton in room 1279. Patient push b.u.t.ton in room 1279," the prerecorded voice says. My hospital gown peeks through from the covers that are pulled up to my neck, and I hold a cell phone to my ear, talking animatedly into its mouthpiece. It is unclear if anyone is on the other end. I pick up the hospital-provided TV remote and speak into it. There is certainly no one at the other end of that conversation. I point to the camera accusingly, gesticulating wildly, and put my hands to my head in frustration."Oh my G.o.d," I cry and hit the nurses' call b.u.t.ton."Can I help you?" a nurse says over the intercom."No, no, it's okay.""Ma'am? Lady? Miss? I'm coming," another nurse chimes in.I'm mumbling to myself now. "I don't know what's happening. I'm going to turn my phone off." I toss my cell phone to the foot of the bed. A nurse arrives with some pills, and I swallow them without hesitation, like I'm taking a shot of tequila. "I can't have it on me. I'm on the news."The nurse answers, but too softly for the video to pick it up.I begin to shout and kick my legs, and I grab for the nurse's call b.u.t.ton. "Please, please, please. I'm freaking out, I'm freaking out.""Patient push b.u.t.ton in room 1279. Patient push b.u.t.ton in room 1279.""Please put the TV back on. PLEASE PUT THE TV BACK ON!"Ignoring my outburst, the nurse positions the guardrails to make sure they're firmly in place."Don't you see? I'm on TV, I'm on the news," I howl. I pick up the TV remote and speak into it again. And then place my head in my hands and rock back and forth. "Please, please, please. Oh my G.o.d, oh my G.o.d. Please get me a doctor. Please get me a doctor. Please, please, please."The nurse leaves. There is a flushing of toilets. I stare straight up at the ceiling as if I am praying.End of video.

"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. n.o.body 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 "New York Post Reporter Unravels after Father Kills Wife. Reporter Unravels after Father Kills Wife."

"I'm on the news!" I grab the emergency nurse's call b.u.t.ton. 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 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 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 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 h.e.l.l 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." 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. 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 att.i.tudes 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 Lost DVDs and nature doc.u.mentaries 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. DVDs and nature doc.u.mentaries 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, If she were a computer, he thought, he thought, we would have to restart her hard drive. we would have to restart her hard drive. He recommended placing me immediately on two different blood pressure medications. He recommended placing me immediately on two different blood pressure medications.