Brain On Fire: My Month Of Madness Part 3

"What? You don't like it?" he asked, hurt.

"No, it's not that. I'm just not hungry. Great leftovers," I said cheerfully, while having to physically restrain myself from pacing around the apartment. I couldn't stay with one thought; my mind was flooded with different desires, but especially the urge to escape. Eventually I relaxed enough to lie down on my couch bed with Stephen. He poured me a gla.s.s of wine, but I left it on the windowsill. Maybe I knew on some primal level that it would have been bad for my state of mind. Instead, I chain-smoked cigarettes, one after another, down to their nubs.

"You're a smoking fiend tonight," he said, putting his own cigarette out. "Maybe that's why you're not hungry."

"Yeah, I should stop," I said. "I feel like my heart is beating out of my chest."

I handed Stephen the remote, and he flipped the channel to PBS. As his heavy breathing turned into all-out snores, Spain... on the Road Again Spain... on the Road Again came on, the reality show that followed actress Gwyneth Paltrow, chef Mario Batali, and came on, the reality show that followed actress Gwyneth Paltrow, chef Mario Batali, and New York Times New York Times food critic Mark Bittman through Spain. food critic Mark Bittman through Spain. G.o.d, not Gwyneth Paltrow, G.o.d, not Gwyneth Paltrow, I thought, but was too lazy to change the channel. As Batali ate luscious eggs and meat, she toyed with a thin goat's-milk yogurt, and when he offered her a bite of his dish, she demurred. I thought, but was too lazy to change the channel. As Batali ate luscious eggs and meat, she toyed with a thin goat's-milk yogurt, and when he offered her a bite of his dish, she demurred.

"That's nice to have at seven in the morning," she said sarcastically.4 You could just tell how disgusted she was by his belly. You could just tell how disgusted she was by his belly.

As I watched her nibble on her yogurt, my stomach turned. I thought about how little I had eaten in the past week.

"Hold on," he retorted. "I can't see you on that high horse of yours."

I laughed right before everything went hazy.

Gwyneth Paltrow.

Eggs and meat.

Darkness.

CHAPTER 8

OUT-OF-BODY EXPERIENCE

As Stephen later described that nightmarish scene, I had woken him up with a strange series of low moans, resonating among the sounds from the TV. At first he thought I was grinding my teeth, but when the grinding noises became a high-pitched squeak, like sandpaper rubbed against metal, and then turned into deep, Sling Blade Sling Bladelike grunts, he knew something was wrong. He thought maybe I was having trouble sleeping, but when he turned over to face me, I was sitting upright, my eyes wide open, dilated but unseeing.

"Hey, what's wrong?"

No response.

When he suggested I try to relax, I turned to face him, staring past him like I was possessed. My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened. I was gasping for air. My body continued to stiffen as I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth. Terrified, Stephen stifled a panicked cry and for a second he stared, frozen, at my shaking body.

Finally, he jumped into action-though he'd never seen a seizure before, he knew what to do. He laid me down, moving my head to the side so that I wouldn't choke, and raced for his phone to dial 911.

I would never regain any memories of this seizure, or the ones to come. This moment, my first serious blackout, marked the line between sanity and insanity. Though I would have moments of lucidity over the coming weeks, I would never again be the same person. This was the start of the dark period of my illness, as I began an existence in purgatory between the real world and a cloudy, fict.i.tious realm made up of hallucinations and paranoia. From this point on, I would increasingly be forced to rely on outside sources to piece together this "lost time."

As I later learned, this seizure was merely the most dramatic and recognizable of a series of seizures I'd been experiencing for days already. Everything that had been happening to me in recent weeks was part of a larger, fiercer battle taking place at the most basic level inside my brain.

The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonizing into a whole that enables thoughts, movements, memories, or even just a sneeze. But it takes only one dissonant instrument to mar the cohesion of a symphony. When neurons begin to play nonstop, out of tune, and all at once because of disease, trauma, tumor, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.

For some people, the result is a "tonic-clonic" seizure like the one Stephen witnessed, characterized by loss of consciousness or muscle rigidity and a strange, often synchronized dance of involuntary movements-my terrifying zombie moves. Others may have more subtle seizures, which are characterized by staring episodes, foggy consciousness, and repet.i.tive mouth or body movements. The long-term ramifications of untreated seizures can include cognitive defects and even death.

The type and severity of a seizure depend on where the neural dysfunction is focused in the brain: if it is in the visual cortex, the person experiences optical distortions, such as visual hallucinations; if it is in the motor areas of the frontal cortex, the person exhibits strange, zombie-like movements; and so forth.

Along with the violent tonic-clonic seizure, it turned out I had also been experiencing complex partial seizures because of overstimulation in my temporal lobes, generally considered to be the most "ticklish" part of the brain.5 The temporal lobe houses the ancient structures of the hippocampus and the amygdala, the parts of the brain responsible for emotion and memory. The symptoms from this type of seizure can range from a "Christmas morning" feeling of euphoria to s.e.xual arousal to religious experiences. The temporal lobe houses the ancient structures of the hippocampus and the amygdala, the parts of the brain responsible for emotion and memory. The symptoms from this type of seizure can range from a "Christmas morning" feeling of euphoria to s.e.xual arousal to religious experiences.67 Often people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as my feeling of alienation in the office bathroom; seeing halos of light or viewing the world as if it is bizarrely out of proportion (known as the Alice in Wonderland effect), which is what was happening while I was on my way to interview John Walsh; and experiencing photophobia, an extreme sensitivity to light, like my visions in Times Square. These are all common symptoms or precedents of temporal lobe seizures. Often people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as my feeling of alienation in the office bathroom; seeing halos of light or viewing the world as if it is bizarrely out of proportion (known as the Alice in Wonderland effect), which is what was happening while I was on my way to interview John Walsh; and experiencing photophobia, an extreme sensitivity to light, like my visions in Times Square. These are all common symptoms or precedents of temporal lobe seizures.

A small subset of those with temporal lobe epilepsy-about 5 to 6 percent-report an out-of-body experience, a feeling described as being removed from your body and able to look at yourself, usually from above.8 There I am on a gurney.

There I am being loaded into the ambulance as Stephen holds my hands.

There I am entering a hospital.

Here I am. Floating above the scene, looking down. I am calm. There is no fear.

CHAPTER 9

A TOUCH OF MADNESS

When I gained consciousness the first thing I saw was a homeless man vomiting just a few feet away in a brightly lit hospital room. In one corner, another man, bloodied, beaten, and handcuffed to the bed, was flanked by two police officers.

Am I dead? Anger at my surroundings welled up inside me. Anger at my surroundings welled up inside me. How dare they put me here. How dare they put me here. I was too incensed to be terrified, and so I lashed out. I hadn't felt like myself for weeks, but the real damage to my personality was only now bubbling to the surface. Looking back at this time, I see that I'd begun to surrender to the disease, allowing all the aspects of my personality that I value-patience, kindness, and courteousness-to evaporate. I was a slave to the machinations of my aberrant brain. We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it. I was too incensed to be terrified, and so I lashed out. I hadn't felt like myself for weeks, but the real damage to my personality was only now bubbling to the surface. Looking back at this time, I see that I'd begun to surrender to the disease, allowing all the aspects of my personality that I value-patience, kindness, and courteousness-to evaporate. I was a slave to the machinations of my aberrant brain. We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.

I am not dead yet. I am dying because of him, because of that lab technician. I convinced myself that the tech who may have flirted with me when I had my MRI was clearly behind all this. I convinced myself that the tech who may have flirted with me when I had my MRI was clearly behind all this.

"Get me out of this room NOW," I commanded. Stephen held my hand, looking frightened by the imperiousness in my voice. "I will NOT stay in this room."

I will not die here. I will not die with these freaks.

A doctor approached my bedside. "Yes, we will move you right away." I was triumphant, delighted by my newfound power. People listen when I speak. People listen when I speak. Instead of worrying that my life was out of control, I began to focus on anything that made me feel strong. A nurse and a male a.s.sistant wheeled my bed out of the room and into a nearby private one. As the bed moved, I clutched Stephen's hand. I felt so sorry for him. He didn't know that I was dying. Instead of worrying that my life was out of control, I began to focus on anything that made me feel strong. A nurse and a male a.s.sistant wheeled my bed out of the room and into a nearby private one. As the bed moved, I clutched Stephen's hand. I felt so sorry for him. He didn't know that I was dying.

"I don't want you to get upset," I said softly. "But I'm dying of melanoma."

Stephen looked spent. "Stop it, Susannah. Don't say that. You don't know what's wrong." I noticed tears welling up in his eyes. He can't handle it. He can't handle it. Suddenly the outrage returned. Suddenly the outrage returned.

"I do know what's wrong!" I yelled. "I'm going to sue him! I'm going to take him for all he's worth. He thinks he can hit on me and just let me die? He can't just do that. No, I'm going to destroy him in court!"

Stephen withdrew his hand swiftly, as if he'd been burned. "Susannah, please stay calm. I don't know what you're talking about."

"The MRI guy! He hit on me! He didn't catch the melanoma. I'm suing!"

The young resident interrupted me mid-rant. "This is something you might want to look into when you get home. If you need a good dermatologist, I would be happy to recommend one. Unfortunately, there's nothing more we can do here." The hospital had already conducted a CT scan, a basic neurological exam, and a blood test. "We have to discharge you and advise that you see a neurologist first thing tomorrow."

"Discharged?" Stephen interjected. "You're letting her go? But you don't know what's wrong, and it could happen again. How can you just let her go?"

"I'm sorry, but seizures are fairly common. Sometimes they just happen and never happen again. But this is an emergency room, and we can't just keep her to see. I'm sorry. My advice is to see a neurologist first thing tomorrow morning."

"I'm still suing that guy!"

The doctor nodded patiently and departed to address the gunshot wounds and drug overdoses that awaited him.

"I have to call your mom," Stephen said.

"You don't have to do that," I insisted, my voice mellowing as I returned, almost instantly, to my old self. Manic episodes can fade away as quickly as they arise. "I don't want her to worry." Mom was a worrier by nature, and I had tried to spare her the full story of what was happening to me so far.

"I have to," he insisted and coaxed her home number out of me. He stepped into the hallway and waited two interminably long rings before Allen, my stepfather, picked up the phone.

"h.e.l.lo," he said groggily in his thick Bronx accent.

"Allen, it's Stephen. I'm at the hospital. Susannah had a seizure, but she's doing fine."

In the background, my mom shouted, "Allen, what is it?"

"She's going to be okay. They're discharging her," Stephen continued.

Despite my mom's rising panic, Allen maintained his composure, telling Stephen to go back home and sleep. They would come in the morning. When he hung up the phone, my mom and Allen looked at each other. It was Friday the Thirteenth.

My mom felt the foreboding, and she began to cry uncontrollably, certain that something was seriously wrong. It was the first and last time she would allow herself to completely succ.u.mb to her emotions in the frightening months that followed.

First thing the next morning, while Allen scouted the street for parking, my mom arrived at my apartment door looking sharp, as always. Her frenetic energy, however, was palpable. She was terrified of even hearing about cancer on the radio, and now she had to cope with her own daughter's mysterious seizure. I watched from the bed as she wrung her beautifully shaped hands, the feature I most adored about her, lobbing question after question at Stephen about the night in the hospital.

"Did they give any explanation? What kind of doctor saw her? Did they do an MRI?"

Allen came around behind her and ma.s.saged her earlobe, a habit of his to calm people he loves. She unwound the instant he touched her. Allen is her third husband, after my dad: her first husband was an architect, and the marriage didn't work for a number of reasons, in part because my mom, very much a feminist of the 1970s, didn't want children. She wanted to focus instead on her career at Manhattan's district attorney's office, where she still worked. When she met my father, she left her first husband and together they had my brother, James, and me. Despite having had kids together, their relationship was ill fated from the start. Both were as hot-tempered as they were stubborn, yet they managed to make their marriage last nearly two decades before they divorced.

My mom and Allen had met thirty years ago at the district attorney's office, long before she married my dad. Allen had won her over as a friend with his loyalty and devotion. He eventually became her key confidant in and out of the DA's office and through her divorce with my father. Allen's brother was schizophrenic, and as a result Allen had turned inward, maintaining only a few important friendships and living primarily in his own world. He was animated with his closest loved ones, gesticulating wildly with his hands and laughing a contagious guffaw; with outsiders, he could be quiet and aloof, to the point of seeming rude. But his warmth and calm, not to mention his experience with mental illness, would prove invaluable over the coming weeks.

Before my seizure, he and my mom had developed a theory culled from the few things that they knew about my month of strange behavior. They suspected I was having a nervous breakdown, prompted by stress at work and the responsibilities of living on my own. The seizure didn't fit into that scenario, though, and now they were even more concerned. After some debate, they decided it would be safest for me to come home with them to Summit, New Jersey, where they could look after me.

Stephen, my mom, and Allen used various tactics to try to get me out of bed, but I refused to budge. To me, the most important thing was to stay in my own apartment, no matter what: going back to my parents' house would make me feel like a child. As badly as I needed it, help was the last thing I wanted. Somehow, though, their combined forces managed to get me out of my house and into the Subaru.

Summit, named one of the best places to live in America by Money Money magazine, is an affluent suburb twenty miles from Manhattan, a haven for WASPs and Wall Street bankers who congregate at the many country clubs within its six square miles. magazine, is an affluent suburb twenty miles from Manhattan, a haven for WASPs and Wall Street bankers who congregate at the many country clubs within its six square miles.9 We'd moved there in 1996 from Brooklyn, but even though it had been an ideal place to grow up, our family had never exactly fit in. In a neighborhood of white houses, my mom had chosen to paint our house a lavender-gray-purple, which prompted one of my sixth-grade cla.s.smates to comment: "My mom says that you're going to get polka dots too!" Eventually my mom changed the color to a less outrageous blue-gray. We'd moved there in 1996 from Brooklyn, but even though it had been an ideal place to grow up, our family had never exactly fit in. In a neighborhood of white houses, my mom had chosen to paint our house a lavender-gray-purple, which prompted one of my sixth-grade cla.s.smates to comment: "My mom says that you're going to get polka dots too!" Eventually my mom changed the color to a less outrageous blue-gray.

Instead of relaxing into the nostalgia of being back in my childhood home, though, as I settled into the Summit house over the next few days I began to cling even more vehemently to the Manhattan life I'd left behind. On Sunday afternoon I became obsessed with filing an overdue article on a fairly simple story about a troupe of dancers that was opening off-Broadway who called themselves "Gimp," made up of disabled performers.

"They're not your typical dancers," I began. Unhappy with the line, I erased it. For the next half hour, I wrote, erased, and rewrote that same sentence until I gave up and began to pace, trying to wrestle myself out of writer's block. I wandered into the family room, where Mom and Allen were watching TV, desperate to tell them about my new trouble with words. But when I got there, I could no longer remember why I'd come.

The TV blasted the theme song to their favorite show, the medical drama House. House. Seconds later, the normally muted green of the couch grew noxiously garish. Seconds later, the normally muted green of the couch grew noxiously garish.

Then the room seemed to pulsate and breathe, like the office hallway.

I heard my mom's voice, shrill and far away: "Susannah, Susannah. Can you hear me?"

Next thing I knew, my mom was sitting beside me on the couch, rubbing my feet, which had stiffened up in a painful charley horse. I looked up at her helplessly. She said, "I don't know what happened. It was like you were in a trance."

My mom and Allen exchanged worried glances and phoned Dr. Bailey to see if they could schedule an emergency appointment. The earliest he could do it, he said, was Monday.

I spent the weekend in Summit, ignoring calls from concerned coworkers and friends. I was too embarra.s.sed by my own unexplainable behavior to talk to them and so consumed by the strange stirring in my mind that I turned away from those closest to me, which normally I would never have done. For some reason, I did pick up the phone once, when I saw it was my friend Julie, a Post Post photographer and the most carefree, lighthearted person I know. As soon as we started talking, I began to tell her everything: the seizures, the strange thoughts, the visions. Maybe it was because I knew her mother was a shrink. When I finished, it turned out that she had already spoken to her mother about me. photographer and the most carefree, lighthearted person I know. As soon as we started talking, I began to tell her everything: the seizures, the strange thoughts, the visions. Maybe it was because I knew her mother was a shrink. When I finished, it turned out that she had already spoken to her mother about me.

"She thinks it's possible that you're having a manic episode and that maybe you have bipolar disorder. Whatever it is, you should see a psychiatrist," she suggested.

Bipolar disorder. Even though it would have sounded grim at any other moment, now the idea was a relief. This made sense. A quick Google search revealed that the National Inst.i.tute of Mental Health had a whole booklet dedicated to it: "a brain disorder that causes unusual shifts in moods" (yes); "often develops in a person's late teens or early adult years" (yes); "an overly joyful state is called a manic episode, an extremely sad or hopeless state is called a depressive episode" (yes and yes, which equals a mixed state). Even though it would have sounded grim at any other moment, now the idea was a relief. This made sense. A quick Google search revealed that the National Inst.i.tute of Mental Health had a whole booklet dedicated to it: "a brain disorder that causes unusual shifts in moods" (yes); "often develops in a person's late teens or early adult years" (yes); "an overly joyful state is called a manic episode, an extremely sad or hopeless state is called a depressive episode" (yes and yes, which equals a mixed state).10 Another site listed at length the famous people who were suspected to suffer from bipolar disorder: Jim Carrey, Winston Churchill, Mark Twain, Vivien Leigh, Ludwig van Beethoven, Tim Burton. Another site listed at length the famous people who were suspected to suffer from bipolar disorder: Jim Carrey, Winston Churchill, Mark Twain, Vivien Leigh, Ludwig van Beethoven, Tim Burton.11 The list kept going and going. I was in good company. "No great mind has ever existed without a touch of madness," Aristotle said. The list kept going and going. I was in good company. "No great mind has ever existed without a touch of madness," Aristotle said.

I spent the night in a state of ecstasy: I had a name for what plagued me, and those two words, which fell off the tongue so sweetly, meant everything. I didn't even want to be "cured." I now belonged to an exclusive club of creatives.

Unconvinced by my self-diagnosis, my mom and Allen drove me back to Dr. Bailey's office that Monday, March 16. The Miro painting no longer seemed as menacing. It matched my mood disorder. Dr. Bailey called us in almost immediately. His demeanor this time seemed far less jolly and grandfatherly, though overall he was pleasant. Again, he went through the basic neurological exam and wrote down "normal." Right then, I did feel normal. He jotted down notes on his pad as he asked me questions. Only later would I learn that he was missing details, writing down that I was "on a plane" when the first seizure occurred.

His tone was light when discussing the seizure, but then he slid his gla.s.ses down his nose, and suddenly sounded very serious. "Is your job very stressful?"

"Yes, I guess."

"Do you feel overwhelmed at times?"

"Sure."

"Tell me honestly," he said, as if preparing himself for me to let him in on a big secret. "There are no judgments here. How much alcohol are you drinking a day?"

I had to think about it. I hadn't had a drop of booze in the past week, but normally it helped me unwind, so I tended to have a sip of something most nights. "To be honest, about two gla.s.ses of wine a night. I usually split a bottle with my boyfriend, though he tends to drink more than I do." He made a note of this in his chart. I didn't understand that doctors usually doubled-even tripled-such numbers because patients often lie about their vices. Instead of two drinks a night, he probably believed the number was closer to six.

"Any drug use?"

"No. Not in years," I said, and quickly added, "I did some research on bipolar disorder, and I really think that's what I have."

He smiled. "I don't have any experience in this field, but it's a possibility. The receptionist will refer you to a very capable psychiatrist who will have more experience with these types of issues."

"Great."

"Okay, then. Well, otherwise, everything looks normal to me. I'm going to draw you up a prescription for Keppra, an antiseizure medication. Take that, and everything should be fine. I'll see you in two weeks," he said and walked me to the waiting area. "I'm going to also have a little talk with your mother if you don't mind." He waved her into his office. After he had closed the door behind him, he turned to her.

"I think this is very simple. Plain and simple. She's partying too hard, not sleeping enough, and working too hard. Make sure she doesn't drink and takes the Keppra I prescribed, and everything should be fine."