PART TWO
THE CLOCK
What is today’s date?
Who is the President?
How great a danger do you pose, on a scale of one to ten?
What does “people who live in glass houses” mean?
Every symphony is a suicide postponed, true or false?
Should each individual snowflake be held accountable for the avalanche?
Name five rivers.
What do you see yourself doing in ten minutes?
How about some lovely soft Thorazine music?
If you could have half an hour with your father, what would you say to him?
What should you do if I fall asleep?
Are you still following in his mastodon footsteps?
What is the moral of “Mary Had a Little Lamb”?
What about his Everest shadow?
Would you compare your education to a disease so rare no one else has ever had it, or the deliberate extermination of indigenous populations?
Which is more puzzling, the existence of suffering or its frequent absence?
Should an odd number be sacrificed to the gods of the sky, and an even to those of the underworld, or vice versa?
Would you visit a country where nobody talks?
What would you have done differently?
Why are you here?
FRANZ WRIGHT, “Intake Interview,” Wheeling Motel
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.
EEG video, March 24, 1:00 a.m., 6 minutes
I am sleeping in bed, wearing a green and brown striped T-shirt and a white cotton hat. The ivory bedsheets are pulled up to my throat, and the cushioned guardrails are at their highest level, making the bed look, from above, like an adult-sized bassinet. I sleep in a fetal position, clutching my pillow. In a moment or two, I awake; fiddle with my cap, looking upset; and pull at the patient ID band on my right hand, folding my arms over my chest. I grab for my cell phone.
End of tape.
; 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.
Brain on Fire Page 8