Brain on Fire: My Month of Madness

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.