Brain on Fire (17 page)

“Nurses. I peed. I didn’t mean to.”

“Susannah. They’re not mad at you. I promise. It’s their job to clean it up. They know you didn’t do it on purpose.”

“They’re yelling at me.”

“I promise you it’s not a big deal. It happens. They shouldn’t yell. It was a mistake.” She couldn’t tell what was real and what had been engineered by my tortured mind. Allen agreed that it was likely the latter; either way, they never heard anything more about the incident.

.  .  .

Because I was still paranoid about work and seemed ashamed about my condition, my parents kept my hospital stay a secret from almost everyone, even my brother. But on Tuesday, March 31, as the first week folded into a second, my parents allowed my first nonfamily friend, Katie, to come visit me. Katie and I had met in college and bonded over a shared love for Loretta Lynn, soul music, vintage clothes, and stiff St. Louis cocktails. Katie was vibrant, a bit goofy, and a great partner in crime. Not knowing what to bring, she purchased a stuffed rat (Katie in a nutshell: a rat instead of a teddy bear), a DVD of gangster rap videos, and a subtitled French film, not realizing that I could no longer read.

Katie now worked as a teacher in Queens and had coached many children with serious social issues and learning difficulties, but she was unprepared for what she found on the other side of the hospital door. This new me was physically different: skinny and pale, cheeks sunken in, and thighs whittled down to toothpicks. My eyes were glazed over. Trying to break the ice, Katie gossiped about people we had gone to college with, knowing that her role was to distract me from the serious matters around me. But it was hard to maintain a conversation because I operated on a delay, responding to basic questions several seconds after they were posed. And then there was the problem of my speech. I had been a professional conversationalist, normally the kind of person who could make small talk with a brick wall, but this new me struggled with even the simplest statements. Most of the time Katie couldn’t even make out what I was saying.

“Let’s go for a walk,” Katie suggested, joking, “Don’t forget your Dora the Explorer backpack.” It took me several moments to realize that Katie was referring to the little pink bag that carried my EEG wires, but eventually I laughed. We shuffled slowly to the waiting area and sat on two chairs facing away from the windows. Katie noticed how baggy my black leggings were.

“You’re so skinny, Susannah!”

I looked down at my legs for a moment, like I was discovering a new part of my body. I laughed and said: “Theeeeessssseearrrrre my
legggggggggggings! My legggggggggings! My legggggggggggings!” and got out of my seat to perform an awkward Irish jig. Weird, yes, but I was dancing, so Katie took that as a good sign.

After Katie’s visit, the next friends to come were Angela and Julie from work. Angela hadn’t seen me since the emotional evening at the Marriott Hotel when I couldn’t stop crying. Since then I had called her a few times in the middle of the night, breathing heavily into the phone but saying nothing. Julie had spoken to me once since the day that she suggested that I was bipolar, when she phoned me in the hospital. The only thing I could offer was, “I had pie for breakfast.”

Today, when I knew they were coming, I’d asked for one thing: a cheeseburger. As they carried the burgers and fries up in the elevator, neither one was sure what to expect.

They walked into the hospital room and found my cousin Hannah seated beside me, keeping me company. I was clearly happy to see them. I gave them a fixed but wide, toothy smile as they tried to ignore the shock of seeing me with my white hat and those multicolored wires. Angela handed me a cheeseburger, but I put it on the bedside table, untouched, and later gave it to Stephen when he arrived that night. Julie, never one to be shy, immediately jumped into bed next to me. She dug her cell phone out of her bag and scrolled through her pictures until she found the right one.

“Do you want to see a picture?” she asked, and all four girls hovered around the phone. “It’s my poop!”

Everyone but me gasped.

“They wouldn’t let me leave the hospital after Teddy was born until I took one. I was so proud that I took a picture.” Julie had given birth to her son about a month earlier. Angela and Hannah started laughing hysterically as I grabbed the cell phone, peered in close, and, several seconds later, broke out into hysterical, near sobbing laughs. The three others looked at each other and lost
it again. I seemed happy and more with it during these visits. As Stephen had noticed, I seemed to be able to somehow pull myself together when I had visitors, but it would often leave me depleted and unable to communicate for hours afterward, as if I had devoted all my energy to acting normal.

Angela, ever the reporter, immediately began asking questions. “Susannah, what’s going on here?”

“I . . . don’t . . . remember,” I stuttered. A little while later I interrupted a separate conversation, my voice suddenly clearer but still just as slow: “What are people saying about me?”

“Don’t worry about it. No one is saying anything about it. They’re all just concerned,” Angela replied.

“No, tell me. I want to know.”

“Nothing bad, Susannah. Nothing bad. I promise.”

“I know that Gawker has been saying bad things about me,” I insisted, referring to the gossip blog.

Julie and Angela threw each other a strange look. “What do you mean?”

“Gawker. It’s saying bad things about me. They put my name in the headline of a piece,” I said and sat up in bed, deadly serious. “Should I call them?”

Angela shook her head. “Um, no. That’s probably not a good idea. Why don’t you write an e-mail when you’re feeling better?”

After about an hour, Angela and Julie said their good-byes and walked down the hallway to the elevators. They pushed the button, still in silence, and waited. When they got in, Julie said quietly, “Do you think she’s ever going to be the same?”

It was a fair question. The person whom Angela and Julie had just visited was not the one they had been friends with for so many years.

But still, there was something of me that remained. Though I could no longer concentrate enough to read, I still had some ability to write, so my father gave me a lined notebook to record how I felt, to help me communicate with visitors and help them better understand what was going on.

In addition to tracking my difficulties in the notebook, I became temporarily obsessed with thanking the various people who had sent me flowers. All sorts of arrangements had been arriving in my room: white daffodils, yellow tulips, pink roses, orange sunflowers, and pink and white lilies (my favorite). I begged my father to help make a list of the people to send thank-you notes once I felt better. When I got too tired to continue writing, my father wrote out some of the names and short thank-you notes for me. But I never got the opportunity to send them out. Because things would get worse before they would get better.

T
he blood test had come back from the Centers for Disease Control and the New York State labs: everything was negative. The doctors now had a long list of the things I did not have. The infectious disease panel included:

• Lyme disease, often caused by tick bites

• Toxoplasmosis, a parasitic disease usually carried by cats

• Cryptococcus, a type of fungus that can cause meningitis

• Tuberculosis, which affects the lungs

• Lymphoreticulosis, or “cat scratch fever”

The autoimmune panel of tests, which tests for some but not all of the 100 plus autoimmune diseases, also came back negative, including:

• Sjögren’s syndrome, which affects the glands that produce tears and saliva

• Multiple sclerosis, which harms the fatty layer of myelin that sheaths neurons

• Lupus, a connective tissue disease

• Scleroderma, a disease of the skin

Nada. Nothing had come back abnormal. Even the various MRIs and CT scans were clean. If the labs were to be believed, I was 100 percent healthy. My parents could sense that the doctors were starting to despair that they would never figure it out. And if there wasn’t a physical problem to cure, everyone understood—though no one would admit—that I would be on my way out to a far worse place. At this point, my family needed someone who would believe in me no matter what. This was the only time in my mother’s long experience with doctors that she had hoped for positive test results. At least then we would have an answer.

My mom had started to look forward every day to seeing the grandfatherly Dr. “Bugsy”; his perpetual good cheer and kind words had become one of the only bright spots in these darkening days. When he didn’t arrive on the afternoon that the test results came back, she worried, and wandered the hallway looking for him. She spied his white lab coat as he left one of the other rooms down the hall.

“Oh, Dr. Siegel,” she said, her voice rising on the end of his name. He turned around swiftly without smiling, evidently in a hurry. “What’s going on with Susannah? Anything new?”

He stared back without his familiar warmth and optimism. “I’m not on the case anymore,” he said flatly and turned to leave.

“What, what?” she stammered, her lower lip quivering. “What do we do?”

“I don’t know what to say. It’s no longer my case,” he replied. He turned and walked briskly away. She suddenly felt very alone. There had been many low points throughout my illness, but this rebuff was the lowest. This doctor, one of the best in the country, had now, it seemed, given up on me.

She took another deep breath, straightened out her blazer, and headed back into my room. She felt foolish for believing that I had been anything but a patient—one in a series of numbers—to him. She could hardly stand to look at Dr. Russo when she came in later that afternoon. Now she was our only hope—that is, until Dr. Russo, as she was finishing up the examination, turned to my
mother and said, “Dr. Najjar and I feel that a second spinal tap is now necessary.”

My deteriorating condition made the idea of another spinal tap, once so frightening, now seem insignificant. But my mother clung to the mention of a new doctor. “Who is Dr. Najjar?”

“He’s working on your daughter’s case. He’s a brilliant doctor,” Dr. Russo said.