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 deja 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?”