Brain On Fire: My Month Of Madness Part 8

As Dr. Friedman left the room, he identified my dad outside, sitting in the waiting area reading a book. As the two men chatted about what I was like before I'd gotten sick, my father described me as an active kid, a straight A student who made friends easily, who played hard and worked hard. That picture contrasted sharply with the disarrayed young woman Dr. Friedman had just examined. Even so, he looked my dad directly in his eyes and said, "Please stay positive. It will take time, but she will improve." When Dr. Friedman embraced him, my dad broke down, a brief surrender.

CHAPTER 20

THE SLOPE OF THE LINE

In the few weeks since my strange symptoms had begun, my dad had been spending much more time with me than usual. He was determined to support me as much as possible, but it was taking a toll on him; he had withdrawn from the rest of his life, even from Giselle. Since my breakdown in his apartment, he had also started keeping a daily journal, independent of the one he shared with my mom, not only to try to help him piece together the medical developments but also simply to help himself cope. After my second escape attempt, he wrote a heartbreaking entry about praying that G.o.d would take him instead of me.

He remembers in particular one cold, damp, early spring morning, driving to the hospital with Giselle in silence. He knew she would have given anything to help share some of his suffering, but even so, he remained disengaged, bottling up his anguish the way he always had.

At the hospital, he kissed Giselle good-bye and squeezed onto the crowded elevator. It was excruciating taking this trip alongside the fresh-faced new fathers being ferried to the maternity floor, some of whom bounded vigorously off the elevator. Life was just beginning for these people. The next stop was the cardiac floor, full of concerned looks, and then finally it was the twelfth floor: epilepsy. His turn to get off.

As he walked past a wing under renovation, he caught the eye of a middle-aged construction worker, who quickly looked to the floor in embarra.s.sment. Good things were not happening on twelve; everyone knew that. For the past three days, while spending his hours in the temporary, makes.h.i.+ft waiting room, he had been taking stock of the neighboring activity. One particularly sad story was occurring just across the hall, where a young man was recovering after falling down a shaft and sustaining a ma.s.sive head injury. His elderly parents came every day to see him, but no one seemed hopeful about his recovery. My dad said a quick prayer, pleading with G.o.d that my fate would be different from that young man's, and he breathed deeply as he prepared himself to see what state I was in this morning. I had just been moved to a new, private room, which seemed like a step in the right direction. On his way to my room, he noticed another patient beckoning him over.

"Is that your daughter?" the woman asked, motioning toward my room.

"Yes."

"I don't like the things they're doing to her," she whispered. "I can't speak because we're being monitored."

There was something odd about this woman, and my father felt himself grow red in the face, embarra.s.sed by the interaction. Still, he couldn't help but hear the woman out, especially since my own paranoid ravings seemed confirmed by her exhortations. Naturally, he worried about what occurred on the floor in his absence, although he knew deep down that the center was one of the best in the world and that these fears were likely imaginary.

"Here," she said, handing my dad a crumpled paper with illegible numbers scrawled across it. "Call me and I'll explain."

My dad politely put the number in his pocket, but he knew better than to call her. He pushed open the door to my new room, accidentally hitting the security guard whose chair had been propped up against it.

The new room was surprisingly peaceful, with a bank of windows looking out onto the East River and FDR Drive. Barges slipped silently by on their trips downriver. My father was pleased by the change, since he'd grown convinced that the AMU room with its monitors, nursing station, and the constant activity of the three other patients had heightened my anxiety.

When I finally awoke, I saw him and smiled. It was the first time that I had greeted him with warmth since that unspeakable night at his house, the evening before I was admitted. Heartened by my new att.i.tude, he proposed a walk around the floor to keep me active.

Though I readily agreed to the walk, it wasn't easy to do. I maneuvered my body like an elderly person, stiffly easing myself toward the edge of the bed before dangling my feet over the side. My dad slid a fresh pair of nonskid, moss-colored socks over my feet and helped me off the bed. He noticed I had no electrodes on my head, but as it turned out this was just because I had removed them again during another overnight escape attempt, and the staff hadn't yet been able to replace them.

Even walking itself was no longer a simple task for me. My dad had always been a fast walker (when James and I were little, he often barreled ahead of us down crowded city streets), but now he was careful to stay by my side, guiding me as each leg jutted out and landed awkwardly, as if I was learning how to walk all over again. He couldn't help but drop the cheerful facade when he saw my slow movements. When we got back to my room, he suggested a motto to keep my mind on the silver lining.

"What is the slope of the line?" he asked.

I looked at him in silence.

"It's positive," he said with forced optimism, angling his arm upward to show a slope. "And what does positive mean?"

Another blank look.

"It means we make progress every day."

I was deteriorating physically, but at least my psychosis had receded, clearing the way for the doctors to finally schedule more tests. Whatever I suffered from seemed to ebb and flow, minute to minute, hour to hour. Still, the hospital staff jumped on this seeming progress and proceeded with a lumbar puncture, more commonly known as a spinal tap, which would give them access to the clear, salt.w.a.ter-like cerebrospinal fluid that bathes the brain and spinal cord. The test had been too dangerous to conduct before because a lumbar puncture requires full cooperation from the patient to remain steadfastly still. Sudden movement can mean horrendous risks, including paralysis and even death.

Although my dad understood that the lumbar puncture was a necessary next step, the thought of the procedure still terrified him and my mom. When James was an infant, he had suffered from a dangerously high fever that had required a spinal tap to rule out meningitis, and my parents had never forgotten the baby's shrill, anguished screams.

The next day, March 27, was my fifth in the hospital but only the second time I had allowed my dad into my room. Most of the time I stared off into s.p.a.ce, without any visible display of emotion, my psychosis now completely replaced by pa.s.sivity. Still, these remote spells were sometimes punctuated by a few pa.s.sionate pleas for help. In my few seemingly lucid moments (which are, like the rest of this time, still foggy or entirely blank in my own recollection), my dad felt as if some primal part of me was reaching out to him as I repeated over and over, "I'm dying in here. This place is killing me. Please let me leave." These invocations deeply pained my father. He desperately wanted me out of this soul-sucking situation, but he knew there was no other option than to stay.

Meanwhile, my mom, who had visited me that morning but had had to return to work downtown in the afternoon, worried from afar, checking in with my father periodically to get updates about the procedure. She hid her desperation from her coworkers, focusing instead on her heavy workload, but her thoughts kept circling around me. She tried unsuccessfully to concentrate on getting through the workday, telling herself over and over that she shouldn't feel guilty and that my father was looking after me.

Eventually, a young male orderly arrived to collect me for my spinal tap, calmly helping me from the bed into the wheelchair and motioning for my dad to follow. After they elbowed their way onto a cramped elevator, the orderly tried to make small talk.

"How are you two related?" he asked.

"I'm her father."

"Is she epileptic?"

My dad bristled. "No."

"Oh. I was just asking because I'm epileptic...," the orderly said, trailing off apologetically.

He wheeled me from one elevator bank to another across the stadium-sized entranceway and finally into a holding pen that also housed five other gurneys, each with its own orderly and patient. My dad angled his body in front of my line of vision so that I would not be tempted to compare my own fate with those around me. She is not one of these people, She is not one of these people, he repeated endlessly to himself, until the nurse called me in alone. He knew I was just getting a spinal tap, but he couldn't help his mind wandering to more sinister scenarios. It was that kind of place. he repeated endlessly to himself, until the nurse called me in alone. He knew I was just getting a spinal tap, but he couldn't help his mind wandering to more sinister scenarios. It was that kind of place.

CHAPTER 21

DEATH WITH INTERRUPTIONS

Nearly a week had gone by since I was admitted, but inside the hospital it was as if time didn't exist. Stephen likened the atmosphere to Atlantic City, with beeping blood pressure monitors instead of slot machines and sad, sick patients instead of sad, sick gamblers. Like a casino, there were no clocks or calendars. It was a stabilized, static environment; the only thing that punctuated the time was the endless activity of the nurses and doctors. From what my family could tell, I had developed an affection for two of the nurses: Edward and Adeline. Nurse Edward, a burly guy with a warm smile, was the only man on a floor of all female nurses, and because of this, he was often mistaken for a doctor. He took it in stride, maintaining an extraordinarily cheery disposition, and joked with me about the Yankees and the New York Post, New York Post, his favorite newspaper. By contrast, Nurse Adeline, a middle-aged Filipino woman, was tigerishly efficient, a straight shooter who offered a healthy dose of discipline. Apparently she had a calming effect on me. his favorite newspaper. By contrast, Nurse Adeline, a middle-aged Filipino woman, was tigerishly efficient, a straight shooter who offered a healthy dose of discipline. Apparently she had a calming effect on me.

By now, my family had developed a routine. Now that I was again comfortable in his presence, my father would arrive in the morning, feed me a breakfast of yogurt and cappuccino, and play a few games of cards that I was often too disoriented to follow. Then he'd read aloud a book or magazine or just sit beside me quietly reading James Joyce's Portrait of the Artist as a Young Man Portrait of the Artist as a Young Man. Every day he brought homemade gourmet foods like my favorite dessert, strawberry rhubarb pie, although I would often hand over my father's dishes to Stephen because I still was not eating regularly. My father had grown up watching his mother, an Irish nurse, whip up elaborate dishes in between ER s.h.i.+fts, and, like her, he unwound when he cooked. Not only did it help me through those hospital days, but it also helped him concentrate on something besides the bleakness.

My mother arrived during her lunch hour and after work to check on me, always keeping that trusty list of questions by her side. Often she stared out at the view of the East River, watching the boats pa.s.s the Long Island City PEPSI COLA sign, wringing her hands, a nervous habit, and losing herself in the view. Most days, we'd watch the Yankees play, and she would give me a rundown of what was happening with our favorite players. But mostly she sat beside me, making sure I was comfortable and, above all else, that the best doctors were visiting regularly.

Stephen would arrive around 7:00 p.m. and stay until I fell asleep around midnight. The nursing staff okayed this, even though visiting hours had ended long before, because his calming influence meant that I would not try to escape. Every night Stephen and I watched a twenty-four-minute DVD of Ryan Adams at Austin City Limits, which was on a constant loop. He left it running when he went home, the alt-country songs "A Kiss Before I Go," "A Hard Way to Fall," and others playing like tw.a.n.gy lullabies over and over again until a night nurse, seeing that I'd fallen asleep, would turn the television off. Stephen thought the music might somehow help bring me back.

Instead, every time I watched this DVD, it was as if for the first time. My short-term memory had been obliterated, a problem usually rooted in the hippocampus, which is like a way station for new memories. The hippocampus briefly "stores" the patterns of neurons that make up a memory before pa.s.sing them along to the parts of the brain responsible for preserving them long term. Memories are maintained by the areas of the brain responsible for the initial perception: a visual memory is saved by the visual cortex in the occipital lobe, an auditory memory by the auditory cortex of the temporal lobe, and so forth.

To understand how important the hippocampus is to the circuitry of the brain, all you have to do is consider what happens when it is removed, as in the famous case of the patient who became known to the medical world as H.M. In 1933, a bicycle struck seven-year-old Henry Gustav Molaison near his home in Hartford, Connecticut, knocking him out cold.22 After that fateful accident, H.M. experienced cl.u.s.ters of seizures that increased in intensity until, by his twenty-seventh birthday in 1953, his doctor had decided to remove the bit of brain tissue that seemed to be the focus of his seizures: the hippocampus. When H.M. recovered from the surgery, the seizures were gone, but too went his ability to make memories. The doctors noticed that his old memories were intact up to two years before the surgery, but he could no longer retain new ones. Any new information stayed with him for a mere twenty seconds before it vanished. H.M. lived into his eighties, but always thought of himself as a young man in his mid-twenties, the age he was before his surgery. After that fateful accident, H.M. experienced cl.u.s.ters of seizures that increased in intensity until, by his twenty-seventh birthday in 1953, his doctor had decided to remove the bit of brain tissue that seemed to be the focus of his seizures: the hippocampus. When H.M. recovered from the surgery, the seizures were gone, but too went his ability to make memories. The doctors noticed that his old memories were intact up to two years before the surgery, but he could no longer retain new ones. Any new information stayed with him for a mere twenty seconds before it vanished. H.M. lived into his eighties, but always thought of himself as a young man in his mid-twenties, the age he was before his surgery.

His uniquely terrifying situation made him one of the most famous medical studies in history, helping researchers to confirm the existence of anterograde amnesia, or the inability to create new memories. (The movie Memento Memento is modeled after H.M.) His case also established the existence of two different types of memory: declarative (places, names, object, facts, and events) and procedural (those learned as a habit, like tying shoes or riding a bike). Although H.M. could not make any new declarative memories, he retained his procedural memory, which he could unconsciously strengthen with practice. is modeled after H.M.) His case also established the existence of two different types of memory: declarative (places, names, object, facts, and events) and procedural (those learned as a habit, like tying shoes or riding a bike). Although H.M. could not make any new declarative memories, he retained his procedural memory, which he could unconsciously strengthen with practice.

More recently, an orchestra conductor named Clive Wearing contracted a devastating form of herpes simplex encephalitis that ravaged his brain, destroying his hippocampus. Like H.M., Wearing could not retain any new declarative memories, meaning that his world was constantly new to him. He couldn't recognize his children, and whenever he saw his wife, to whom he had been married for years, he felt as if he was falling in love for the first time. His wife, Deborah, wrote a book about his case, aptly t.i.tled Forever Today Forever Today. In it she wrote: "Clive was under the constant impression that he had just emerged from unconsciousness because he had no evidence in his own mind of ever being awake before."23 A prolific writer himself, Wearing kept lengthy diaries. But instead of filling them with insight or humor, he was constantly writing the following: A prolific writer himself, Wearing kept lengthy diaries. But instead of filling them with insight or humor, he was constantly writing the following: 8:31 AM: Now I am really, completely awake.

9:06 AM: Now I am perfectly, overwhelmingly awake.

9:34 AM: Now I am superlatively, actually awake.

Deborah quotes her husband: "I haven't heard anything, seen anything, touched anything, smelled anything.24 It's like being dead." It's like being dead."

Although my case luckily was not yet as severe as these, I too had lost key parts of my brain function. Still, certain little things brought me joy: I looked forward to the slow, rickety walks that allowed me to skip the daily shots required to prevent blood clots in bedridden patients. Beyond that, I had two other obsessions, apples and cleanliness. Whenever anybody asked me what I wanted, my answer was always the same: "Apples." I expressed a constant desire for them, so everyone who visited brought apples: green ones, red ones, tart ones, sweet ones. I devoured them all. I don't know what prompted this fixation; perhaps some metaphorical urge to "have an apple a day, and keep the doctor away." Or maybe the urge was more basic: apples contain flavonoids, which are known to have anti-inflammatory and antioxidant effects on the body. Was my body communicating something that my mind-and my doctors-didn't yet understand?

I also insisted on having my clothes changed and cleaned every day. My mother believed this was a subconscious yearning to rid my body of the sickness, whatever it was. I begged the staff to shower me, even though my hair had to remain matted to my skull because of the constant presence of the EEG wires. Two Jamaican nursing a.s.sistants would clean me with warm wet towels, dress me, and coo over me, calling me "my baby." I relaxed in their care. Watching my contentment during these was.h.i.+ng sessions, my father wondered if their accents were transporting me back to my infancy, when Sybil had cared for me like a second mother.

That first Sat.u.r.day, my parents finally allowed a new visitor, my cousin Hannah. Though she was shocked by what she saw when she arrived, Hannah walked in the room and sat down next to me as if she had done this every day. There in the room with my mom and Stephen, she seemed immediately at home, quiet, una.s.suming, and supportive.

"Susannah, these are from your birthday. We didn't get to see you," she said brightly, handing me a wrapped present. I stared blankly back at her with a frozen smile. Hannah and I had made plans in February to celebrate my belated birthday, but I had canceled because of the "mono" that I believed I had contracted.

"Thank you," I said. Hannah watched hesitantly as I clawed weakly at the present with half-closed fists. I no longer had the dexterity to even open the wrapping paper. My physical slowness and awkward speech pattern reminded Hannah of a Parkinson's patient. Gently she took the package from me and opened it.

"It's Death with Interruptions, Death with Interruptions," she said. "You liked All the Names, All the Names, so my mom and I thought you'd like this one, too." In college I had read Jose Saramago's so my mom and I thought you'd like this one, too." In college I had read Jose Saramago's All the Names All the Names and spent many nights talking to Hannah's mother about it. But now I just glanced helplessly at the author's name and said, "Never read that." Hannah agreed sweetly and changed the subject. and spent many nights talking to Hannah's mother about it. But now I just glanced helplessly at the author's name and said, "Never read that." Hannah agreed sweetly and changed the subject.

"She's really tired," my mother apologized. "It's hard for her to concentrate."

EEG video, March 30, 6:50 a.m., 6 minutesThe scene opens onto an empty bed. My mother, dressed in a Max Mara suit for work, sits nearby, looking pensively out the window. There are flowers and magazines by the bed. The TV is on, and the show Everybody Loves Raymond Everybody Loves Raymond plays softly. plays softly.I enter from offscreen and crawl onto the bed. I do not have my cap on, and my hair is matted down, revealing a strip of wires that fall down my back like a mane. I pull the sheets up to my neck. My mother rubs my thigh and tucks me into the blanket. I remove the blanket and get up, repeatedly touching the wires on my head.End of video.

CHAPTER 22

A BEAUTIFUL MESS

Troubling new symptoms cropped up in the beginning of the second week. My mother had arrived midmorning to find that my slurring of words had worsened so considerably that it was as if my tongue was five sizes too big for my mouth. This scared her more than the hallucinations, the paranoia, and the escape attempts: this was measurable, consistent change, but in decidedly the wrong direction. My tongue twisted when I spoke; I drooled and, when I was tired, let my tongue hang out of the side of my mouth like an overheated dog; I spoke in garbled sentences; I coughed when I drank liquids, which required that I drink water out of a cup that dispensed only a tablespoon of liquid at a time; I also stopped speaking in full sentences, moving from unintelligible ramblings to monosyllables and sometimes just grunts. "Can you repeat after me?" Dr. Russo, the neurologist, asked. "Ca, ca, ca."

But the hard sounds of the c's coming from my mouth were so softened that the consonant became unrecognizable, more like "dtha, dtha, dtha."

"Would you please puff out your cheeks, like this?" Dr. Russo asked, blowing into her closed mouth, extending her cheeks. I pursed my lips and mimed the doctor, but the air would not fill my cheeks. I just exhaled.

"Will you point your tongue out all the way at me?"

My tongue would extend only about half the length of a normal person's, and even so, it quivered as if strained by the action.

Later that day, Dr. Arslan confirmed Dr. Russo's new findings, noting my slurred speech in his progress report. I was also making constant chewing motions, not unlike the lip licking in Summit the week before. And now I was making weird grimaces too. My arms kept stiffening out in front of me, as if I was reaching for something that wasn't there. The team suspected that these behaviors, combined with the high blood pressure and increased heart rate, pointed to a problem in my brain stem or limbic system.

At the top of the spinal cord and at the underside of the brain is the brain stem, one of the more primitive parts of the brain, which helps oversee basic life-or-death functions.25 A thumb-sized cl.u.s.ter of cells in the brain stem called the medulla manages blood pressure, heart rate, and breathing. A bulging area nearby, the pons, plays an important role in the control of facial expressions, so it made sense that my symptoms might be coming from this area. A thumb-sized cl.u.s.ter of cells in the brain stem called the medulla manages blood pressure, heart rate, and breathing. A bulging area nearby, the pons, plays an important role in the control of facial expressions, so it made sense that my symptoms might be coming from this area.

Still, it's hard to lay blame. Many areas of the brain are also involved with these kinds of intrinsic functions. Other possible culprits are the insular cortex, located between the frontal and temporal lobes, which is involved with emotion and maintenance of the body's internal environment; or they could be caused by parts of the limbic system, such as the amygdala and the cingulate gyrus, which are involved with respiratory control.

To return to the a.n.a.logy of the Christmas lights, even if just one area goes out, many different connections may be altered. It's often difficult to locate one area and make a causal connection to basic functions or behavior. Just like everything else in the brain, it's complicated. Or, as author William F. Allman put it in Apprentices of Wonder: Inside the Neural Network Revolution, Apprentices of Wonder: Inside the Neural Network Revolution, "The brain is a monstrous, beautiful mess." "The brain is a monstrous, beautiful mess."26

Dr. Siegel (my mom's beloved "Bugsy") arrived with news shortly after Dr. Arslan had left. "All right, we have something," he said, speaking rapidly.

"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 c.o.c.ktails. 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 nutsh.e.l.l: a rat instead of a teddy bear), a DVD of gangster rap videos, and a subt.i.tled 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.