Brain on Fire: My Month of Madness

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:

THANK YOU