“Something?” my mother asked.
“Her spinal tap showed a slightly elevated level of white blood cells. This is typically a sign that there is some kind of infection or inflammation,” he said. There were twenty white blood cells in my spinal fluid in about a microliter of fluid; in a healthy person’s spinal fluid, there should be only zero to five. It was enough for the doctors to wonder, but there were various theories as to why they were there. One of the possible explanations was that they’d been caused by the trauma of the spinal tap itself. Still, it was an indication that something was awry.
“We don’t know what it means yet,” Dr. Siegel said. “We’ve got dozens of tests going. We’ll figure it out. I promise you we will figure it out.”
My mother smiled for the first time in weeks. It was a strange relief for her to finally have confirmation that something physical, as opposed to emotional, was happening to me. She desperately wanted something—anything that she could wrap her mind around. And although this white blood cell clue was vague, it was nonetheless a clue. She went home and spent the rest of the evening on Google, researching what this news could mean. The possibilities were frightening: meningitis, tumor, stroke, multiple sclerosis. Eventually a phone call interrupted her research trance. My voice on the other end sounded like a developmentally delayed child.
“I peed.”
“What happened?”
“I peed. They’re yelling.”
“Who’s yelling at you?” She could hear voices in the background.
“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 se
nt 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.
CHAPTER 23
DR. NAJJAR
The 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.
Dr. Souhel Najjar had joined my team after a call from Dr. Siegel. His skill in solving a few mystery cases had earned him a reputation as the man to go to when nothing made sense. And now Dr. Bugsy was offering up his most perplexing case to him.
“I’m at a loss,” Dr. Siegel confided to Dr. Najjar. “I need your help on this case.” He listed all the issues and conflicting diagnoses. The psychiatrists suspected that my behavior stemmed from a mental illness; the elevated white blood cell count pointed to infection; all the other tests were coming back negative. Dr. Najjar’s first guess was that I had to be suffering from some sort of viral encephalitis, an inflammation most likely caused by the herpes virus. He didn’t buy the schizoaffective theory and instead suggested that they administer an infusion of IV acyclovir, an antiviral drug.
But then the virus panel came back negative. I did not have HIV or herpes simplex virus 1 or 2 and did not test positive for herpes encephalitis, so he stopped the antiviral infusions. The other possibility was that it was some sort of autoimmune response, which he could treat with an experimental immunotherapy that he had tried successfully on another patient with brain inflammation; the treatment included steroids, intravenous immunoglobulin (IVIG), and plasma exchange.
“I think we should do IVIG treatment immediately,” Dr. Najjar said after looking over my negative virus panel.
CHAPTER 24
IVIG
On April 2, the nurses started my first round of five intravenous immunoglobulin (IVIG) infusions. The clear IV bags hung on a metal pole above my head, their liquid trickling down into my vein. Each of those ordinary-looking bags contained the healthy antibodies of over a thousand blood donors and cost upwards of $20,000 per infusion. One thousand tourniquets, one thousand nurses, one thousand veins, one thousand blood-sugar regulating cookies, all just to help one patient.
IVIG is made up of serum antibodies called immunoglobulin G, or IgG, which are the most common type of antibody found in the human body.27 IVIG is approved by the U.S. Food and Drug Administration to treat problems relating to transplants, leukemia, and pediatric HIV, among other conditions; its off-label uses have often been considered “experimental” and denied by insurance companies.
Antibodies are created by the body’s immune system to counteract an unwanted, external element, such as when a pathogen of some sort—a virus, bacterium, fungus, or other foreign substance—enters the body.28 This sets off a series of reactions beginning with the body’s basic alarm system, the innate response, which is a one-size-fits-all process designed to get rid of unwanted visitors quickly. If the innate system can’t eradicate the pathogen, the next defense stage is the “adaptive response,” which tailors itself to the specific intruder, using an arsenal of white blood cells and antibodies. This takes much longer to mobilize than the innate response, ten days versus the innate system’s minutes or hours.29 Usually the collateral damage of these internal battles results in familiar flulike symptoms such as headache, fever, muscle ache, nausea, and enlarged lymph nodes.30
An immune cell, called a phagocyte, “eating” a pathogen.
One type of white blood cell, the B-cell, also can morph into plasma cells that create antibodies.31 Under normal conditions, each antibody fits exactly to only one pathogen, like Cinderella’s glass slipper, with the purpose of blocking the spread of infection by either disabling that specific kind of pathogen or flagging it for destruction. But autoantibodies, which everyone has in healthy doses, can sometimes transform into the most malicious type of biological shadowboxer, if they begin to attach to and destroy the healthy host tissue, like the brain. An IVIG infusion introduces fresh, healthy antibodies to fuse with those “bad” rogue autoantibodies created by a sick person’s immune system, helping to neutralize them and rendering the autoantibodies harmless.
Beep, beep, beep. It’s dark. There’s the beeping of a massive machine to my right. There’s a wire hooking me up to heaving bags of white liquid. I put Stephen’s headphones on and close my eyes. I am far, far away from here. I am myself again.
“This next song is to my friend Leah who couldn’t be here tonight . . .”
The hum of the guitar. The s
oft tap on the drums. The swell of the music. It’s Halloween night at Harlem’s Apollo Theater. I’m at a Ryan Adams concert. I can see him onstage, strumming on his guitar, but I can’t keep my eyes open to watch the scene. I feel a touch on my skin. It makes me shudder. I hear a voice.
“SuSHana, time to take vitals.”
The concert disappears, dissolving into the dark hospital room, the nurse next to me. I’m back, back in the place where there is no night and there is no day. It’s this woman’s fault I’m back here. I’m suddenly filled with blinding, focused rage. I wind my right arm back and punch her in the chest. She gasps.
The next morning, my mother took her usual place beside me in a chair by the window when her phone rang. It was James. My parents had been keeping him uninformed about the severity of my illness, not wanting to worry him and disrupt his studies. He and I had always been close, despite the five-year age difference, and our parents knew he would drop everything and come home if he discovered how bad off I was. But today, for the first time, she decided to hand off the phone to me.
“James . . . James . . . James,” I said, hearing my brother’s voice on the other line. “James . . . James . . . James.”
In his dorm room in Pittsburgh, James choked back tears. I sounded so different, so unlike his big sister. He insisted, “I’m going to come home soon. And you’re going to get better.”
The following day, while I was on my second course of IVIG treatment, Dr. Arslan, the psychopharmacologist, came by on rounds and noticed that my speech problems had worsened. He wrote the following in his progress note:
Brain on Fire Page 11
