Brain on Fire
“Come on in,” said Dr. Levin, appearing at the door. I smiled: she looked like Carol Kane too. She motioned for me to sit in the leather chair.
“I hope you don’t mind, but I always take pictures of my patients to keep track of everyone,” she said, nodding at the Polaroid camera in her hands. I posed, not sure if I should smile or remain serious. I remembered what my friend Zach from work had once told me years before when I first went on live television during the Michael Devlin affair: “Smile with your eyes.” So that’s what I tried to do.
“So tell me a bit about why you’re here,” she asked, cleaning her glasses.
“I’m bipolar.”
“I’m sorry,” she said. “Say that again?”
“I’m bipolar.”
She nodded as if agreeing with me. “Are you on any medication for that?”
“No. I haven’t been officially diagnosed. But I know. I mean, I know myself better than anyone, right? So I should know if I have it. And I know that I do,” I rambled on, the illness imposing itself on my speech patterns.
She nodded again.
“Tell me why you think you’re bipolar.”
As I made my case through my strange, jumpy logic, she jotted down her impressions on two pages of wide-ruled paper: “Said she had bipolar disorder. Hard to conclude,” she wrote. “Everything is very vivid. Started in last few days. Can’t concentrate. Easily distracted. Total insomnia but not tired, not eating. Has grand ideas. No hallucinations. No paranoid delusions. Always impulsive.”
Dr. Levin asked if I had any history of feeling this way and wrote, “She’s had hypomanic attacks her whole life. Always has high energy. But has negative thoughts. She was never suicidal.”
Dr. Levin’s opinion was that I was experiencing a “mixed episode,” meaning both manic and depressive elements typical of bipolar disorder. She moved several large books on her desk around until she found her scrip pad and scrawled out a prescription for Zyprexa, an antipsychotic prescribed to treat mood and thought disorders.
While I was in the office with Dr. Levin, my mother called my younger brother, a freshman at the University of Pittsburgh. Even though James was only nineteen, he already had a wise, old-soul quality that I’ve always found comforting.
“Susannah had a seizure,” she told James, trying to control the wavering of her voice. James was stunned. “The neurologist is saying she drank too much. Do you think Susannah is an alcoholic?” my mom asked him.
James was adamant. “No way is Susannah an alcoholic.”
“Well, Susannah’s insisting that she’s manic-depressive. Do you think that’s a possibility?”
James thought on this for a moment. “No. Not in the least. That’s just not Susannah. Sure, she can be excitable and temperamental, but she’s not depressive. She’s tough, Mom. We all know that. She deals with a lot of stress, but she handles it better than anyone I know. Bipolar doesn’t make any sense to me.”
“Me neither,” my mom said. “Me neither.”
CHAPTER 11
KEPPRA
Later that next night, I had an epiphany. Forget bipolar disorder: it was the antiseizure medication Keppra. The Keppra must be causing my insomnia, forgetfulness, anxiety, hostility, moodiness, numbness, loss of appetite. It didn’t matter that I had been on the drug for only twenty-four hours. It was all the Keppra. An Internet search proved it. These were all side effects of that toxic drug.
My mother pleaded with me to take it anyway. “Do it for me,” she begged. “Just please take the pill.” So I did. Even during this time when I hardly recognize myself, there are still shadows of the real Susannah, a person who cares what her family and friends think, who doesn’t want to cause them pain. Looking back, I think that’s why, despite the battles, I often caved at my family’s insistences.
That night, as the alarm clock by my bed struck midnight, I lifted my head with a start. The damn pills. They’re taking over my body. I’m going crazy. THE KEPPRA. I need it out of my system. “Throw it up, get it out!” a voice chanted. I kicked off my sheets and jumped out of bed. KEPPRA, KEPPRA. I went to the hallway bathroom, ran the water, got on my knees, and knelt over the toilet bowl. I jammed my fingers down my throat, wiggling them around until I dry-heaved. I wiggled more. Thin white liquid. Nothing solid came up because I hadn’t eaten in longer than I could remember. DAMN KEPPRA. I flushed the toilet, turned off the water, and paced.
The next thing I knew, I was upstairs on the third floor, where my mom and Allen slept. They’d moved up there when James and I were teenagers because it had worried them too much to hear us coming and going at night. Now I stood over my mom’s bed and watched her sleep. The half-moon shone down on her. She looked so helpless, like a newborn baby. Swelling with tenderness, I leaned over and stroked her hair, startling her awake.
“Oh, my. Susannah? Are you okay?”
“I can’t sleep.”
She rearranged her mussed-up, cropped hair and yawned.
“Let’s go downstairs,” she whispered, taking my hand and leading me back into my bedroom. She lay down beside me, brushing out my tangled hair with her beautiful hands for over an hour until she fell back asleep. I listened to her breathing, soft and low, in and out, and tried to replicate it. But I didn’t sleep.
The next day, on March 18, 2009, at 2:50 p.m., I wrote the first in a series of random Word documents that would become a kind of temporary diary over this period. The documents reveal my scattered and increasingly erratic thought processes:
Basically, I’m bipolar and that’s what makes me ME. I just have to get control of my life. I LOVE working. I LOVE it. I have to break up with Stephen. I can read people really well but I’m too jumbly. I let work take way too much out of my life.
During a conversation earlier that day when we discussed my future, I’d told my father that I wanted to go back to school, specifically to the London School of Economics, even though I had no history of studying business. Wisely, gently, my father suggested that I write down all my racing thoughts. So that’s what I did for the next few days: “My father suggested writing in a journal, which is definitely helping me. He told me to get a puzzle and that was smart because he too thinks in puzzles (the way things fit together).”
Some of the statements are incoherent messes, but others are strangely illuminating, providing deep access to areas of my life that I’d never before examined. I wrote about my passion for journalism: “Angela sees something in me because she knows how hard it is to be good at this job, but that’s journalism, it’s a hard job. and maybe it’s not for me I have a very powerful gut.” And I went on about my need for structure in a life that was quickly falling to pieces: “Routine is important to me, as is discipline without it I tend to go a little bit haywire.”
As I wrote these lines and others, I felt that I was piecing together, word by word, what was wrong with me. But my thoughts were tangled in my mind like necklaces knotted together in a jewelry box. Just when I thought I had untwisted one, I would realize it was connected to a rat’s nest of others. Now, years later, these Word documents haunt me more than any unreliable memory. Maybe it’s true what Thomas Moore said: “It is only through mystery and madness that the soul is revealed.”
That night I walked into the family room and announced to my mom and Allen, “I’ve figured it out. It’s Stephen. It’s too much pressure. It’s too much. I’m too young.” My mom and Allen nodded empathetically. I left the room, but then, a few feet outside the doorway, another solution emerged. I retraced my steps. “Actually, it’s the Post. I’m unhappy there, and it’s making me crazy. I need to go back to school.”
They nodded again. I left and then turned straight around again.
“No. It’s my lifestyle. It’s New York City. It’s too much for me. I should move back to St. Louis or Vermont or someplace quiet. New York isn’t for me.”
By now they were staring at me, concern creasing their faces, but still they continued to nod accommodatingly.
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I left once more, cantering from the family room to the kitchen and then back. This time I had it. This time I had figured it out. This time it all made sense.
The Oriental rug scraped my cheek.
Oval droplets of blood marring the pattern.
My mom’s shrill screams.
I had collapsed on the floor, bitten my tongue, and was convulsing like a fish out of water, my body dancing in jerking motions. Allen ran over and put his finger in my mouth, but in a spasm I bit down hard on it, adding his blood to my own.
I came to minutes later to the sound of my mother on the phone with Dr. Bailey, frantic for some kind of answer. He insisted that I keep taking the medication and come in for an electroencephalogram (EEG) on Saturday, to test the electrical activity of my brain.
Two days later, that Friday, Stephen came to Summit to visit and suggested that we get out of the house and grab some dinner. He had been debriefed by my family about my deteriorating behavior and was on high alert, but he knew that it was important for me to leave the house (because of the threat of seizures, I could not drive a car) and maintain some semblance of an adult life. We headed to an Irish pub in Maplewood, New Jersey, where I had never been before. The bar was crowded with families and teenagers. People hovered around the hostess’s desk, jockeying for reservations. I knew immediately that there were too many people. They all stared at me. They whispered to each other, “Susannah, Susannah.” I could hear it. My breath got shallower, and I began to sweat.
“Susannah, Susannah,” Stephen repeated. “She said it’s a forty-minute wait. Do you want to wait or go?” He gestured to the hostess, who did in fact look at me curiously.
“Umm. Umm.” The old man who seemed to be wearing a toupee jeered at me. The hostess raised her eyebrows. “Ummm.”
Stephen grabbed my hand and walked me out of the restaurant into the freedom of the frigid air. Now I could breathe again. Stephen drove me to nearby Madison, to a dingy bar called Poor Herbie’s where there was no wait. The waitress, a woman in her midsixties with frizzy bleached blond hair and gray roots, stood at the table with her left hand on her hip, waiting for our orders. I just stared at the menu.
“She’ll take the chicken sandwich,” Stephen said, after it was clear I was incapable of making such a momentous decision. “And I’ll have the reuben.”
When the food came, I could focus only on the greasy french dressing congealing on Stephen’s corned beef sandwich. I looked down at my own sandwich despairingly; nothing could convince me to put it to my lips.
“It’s too . . . grizzly,” I told Stephen.
“But you didn’t try it. If you don’t eat this, there’s nothing but gefilte fish and chicken livers at home,” he joked, trying to lighten the mood by pointing out Allen’s strange eating habits. Stephen finished his reuben, but I left the chicken sandwich untouched.
As we walked to the car, two conflicting urges struck me: I needed either to break up with Stephen here and now or profess my love to him for the first time. It could go either way; both impulses were equally intense.
“Stephen, I really need to talk to you.” He looked at me oddly. I stammered, growing red before conjuring up the courage to speak, although I still didn’t know what was going to come out of my mouth. He too was half-expecting me to break up with him at that moment. “I just. I just. I really love you. I don’t know. I love you.”
Tenderly he grasped my hands in his own. “I love you, too. You just have to relax.” It was not how either of us had hoped this exchange would happen; it was not the kind of memory you recalled to your grandchildren, but there it was. We were in love.
Later that night, Stephen noticed that I had begun to steadily smack my lips together as if I was sucking on a candy. I licked my lips so often that my mom started to apply globs of Vaseline to keep them from cracking open and bleeding. Sometimes I would trail off midsentence, staring off into space for several minutes before continuing my conversation. During these moments, the paranoid aggression receded into a childlike state. These times were the most unnerving for everyone, since I’d been pigheadedly self-sufficient, even as a toddler. We didn’t know it then, but these too were complex partials, the more subtle types of seizures that create those repetitive mouth movements and that foggy consciousness. I was getting worse by the day, by the hour even, but no one knew what to do.
At 3:38 a.m., on March 21, as Stephen snored away upstairs, I wrote again in my computer diary:
Okay there’s no place to start but you have to, ok? And don’t be all “wow I didn’t spell check this.”
I had the urge to baby stephen instead of allow him to baby me. I’ve been letting my parents baby me for too long.
you have a mothering instinct (you held him in your arms). you felt you have untangled your mind when you are around him. you found your phone and remembered.
talking to my father makes me feel more with it. my mom babies me way too much because she blames herself for the way I am. But she shouldn’t. She’s been a great mother. And she should know that.
who gives a shit what anyone things about me. I’m going to
Stephen: he keeps you sane. He’s also very smart. Don’t let how humble he is fool you, okay? You got this crossroads because of him and you should be forever grateful for that. So be kind to him.
Reading these entries now is like peering into a stranger’s stream of consciousness. I don’t recognize the person on the other end of the screen as me. Though she urgently attempts to communicate some deep, dark part of herself in her writing, she remains incomprehensible even to myself.
CHAPTER 12
THE RUSE
On Saturday morning, my mom tried to get me to return to Dr. Bailey’s for the EEG. I had had two identifiable seizures and had developed an increasing number of worrying symptoms in the past week alone, and my family needed answers.
“Absolutely not,” I grumbled, stamping my feet like a two-year-old. “I’m fine. I don’t need this.”
Allen walked outside to start the car as Stephen and my mother pleaded with me.
“Nope. Not going. Nope,” I replied.
“We have to go. Please, just come,” my mom said.
“Let me talk to her for a second,” Stephen said to my mom, leading me outside. “Your mom is only trying to help you, and you’re making her very upset. Will you please just come?”
I thought this over for a moment. I loved my mom. Fine. Yes. I would go. Then a moment later—No! I couldn’t possibly leave. After a half hour more of persuading, I finally got into the backseat of the car beside Stephen. As we drove out of our driveway and onto the street, Allen began to speak. I could hear him distinctly, though he wasn’t moving his lips.
You’re a slut. I think Stephen should know.
My whole body shook with anger, and I leaned threateningly toward the driver’s seat. “What did you say?”
“Nothing,” Allen said, sounding both surprised and exhausted.
That was the last straw. Swiftly, I unbuckled my seat beat, yanked open the car door, and prepared to jump out of the car headfirst. Stephen grabbed the back of my shirt in mid-leap, saving me from launching myself out of the vehicle. Allen slammed on the brakes.
“Susannah, what the hell are you doing?” my mom screamed.
“Susannah,” Stephen said in a level tone, a timbre I had never before heard from him. “That is not okay.”
Obedient again, I closed the door and crossed my arms. But hearing the click of the child’s lock sent me into panic mode again. I flung myself against the locked door and screamed, “Let me out! Let me out!” over and over, until I was too exhausted to yell anymore, then rested my head against Stephen’s shoulder and momentarily nodded off.
When I opened my eyes again, we had exited the Holland Tunnel and were entering Chinatown, with its sidewalk fish, swarms of tourists, and fake designer bag salesmen. The whole sordid scene disgusted me.
“I want coffee. Get me coffee. Now. I’m
hungry. Feed me,” I demanded, insufferably.
“Can’t you wait until we get uptown?” my mom asked.
“No. Now.” It suddenly seemed like the most important thing in the world.
Allen took a sharp turn, almost hitting a parked car, and took West Broadway to the Square Diner, one of the last authentic train car diners in New York City. Allen couldn’t figure out how to unlock the child’s lock, so I climbed over Stephen to get out of his door, hoping to disappear before any of them could catch up. Stephen suspected as much and followed me. Since I couldn’t get away, I sauntered into the diner in search of coffee and an egg sandwich. It was Sunday morning, so the line to eat was long, but I wouldn’t wait. I barbarously nudged an elderly lady out of my way and, spotting an open booth, sat down. I shouted obnoxiously to no one in particular, “I want coffee!”
Stephen took the seat opposite mine. “We can’t stay. Can’t you just get it to go?”
Ignoring him, I snapped my fingers, and the waitress arrived. “A coffee and egg sandwich.”