Brain on Fire (4 page)

Several emphatic signs hung at the receptionist’s desk: PLEASE DO NOT USE LOBBY FOR PHONE CALLS OR WAITING FOR PATIENTS!!!!!! ALL COPAYS MUST BE PAID BEFORE SEEING DOCTOR!!!!!!!

“I’m here to see Dr. Bailey,” I said. Without a smile and without looking at me, the receptionist shoved a clipboard in my direction. “Fill it out. Wait.”

I breezed through the form. Never again would a health history be so simple. Any medications? No. Allergies? No. History of surgery or previous illness? I paused here. About five years ago, I had been diagnosed with melanoma on my lower back. It had been caught early and required only minor surgery to remove. No chemo, nothing else. I jotted this down. Despite this premature cancer scare, I had remained nonchalant, some would say immature, about my health; I was about as far from a hypochondriac as you can get. Usually it took several pleading phone calls from
my mom for me to even follow through on my regular doctor’s appointments, so it was a big deal that I was here alone and without any prodding. The shock of the gynecologist’s uncharacteristic worry had been unnerving. I needed answers.

To keep calm, I fixated on the strangest and most colorful of the paintings—a distorted, abstract human face outlined in black with bright patches of primary colors, red pupils, yellow eyes, blue chin, and a black nose like an arrow. It had a lipless smile and a deranged look in its eyes. This painting would stick in my mind, materializing again several more times in the coming months. Its unsettling, inhuman distortion sometimes soothed me, sometimes antagonized me, sometimes goaded me during my darkest hours. It turned out to be a 1978 Miró titled
Carota,
or carrot in Italian.

“CALLAAHAANN,” the nurse brayed, mispronouncing my name. It was a common, excusable mistake. I stepped forward, and she showed me to an empty examination room, then handed me a green cotton gown. After a few moments, a man’s baritone voice echoed behind the door: “Knock, knock.” Dr. Saul Bailey was a grandfatherly-looking man. He introduced himself, extending his left hand, which was soft but strong. In my own, smaller one it felt meaty, significant. He spoke quickly. “So you’re Eli’s patient,” he began. “Tell me what’s going on.”

“I don’t really know. I have this weird numbness.” I waved my left hand at him to illustrate. “And in my foot.”

“Hmmm,” he said, reading over my chart. “Any history of Lyme disease?”

“Nope.” There was something about his demeanor that made me want to reassure him, to say, “Forget it, I’m fine.” He somehow made me want not to be a burden.

He nodded. “Okay, then. Let’s have a look.”

He conducted a typical neurological exam. It would be the first of many hundreds to come. He tested my reflexes with a hammer, constricted my eyes with a light, assessed my muscle strength by pushing his hands against my outstretched arms, and checked my coordination by having me close my eyes and maneuver my fingers to my nose. Eventually he jotted down “normal exam.”

“I’d like to draw some blood, do a routine workup, and I’d like you to get an MRI. I’m not seeing anything out of the norm, but just to be safe, I’d like you to get one,” he added.

Normally I would have put the MRI off, but today I decided to follow through. A young, lanky lab technician in his early thirties greeted me in the lab’s waiting room and walked me toward a changing area. He led me to a private dressing room, offered a cotton gown, and instructed me to take off all my clothes and jewelry, lest they interfere with the machinery. After he left, I disrobed, folded my clothes, removed my lucky gold ring, and dropped it into a lockbox. The ring had been a graduation gift from my stepfather—it was 14K gold with a black hematite cat’s eye, which some cultures believe can ward off evil spirits. The tech waited for me outside the changing area, smiling as he guided me to the MRI room, where he helped prop me up on the platform, placed a helmet on my head, tucked a blanket over my bare legs, and then walked out to oversee the procedure from a separate room.

After half an hour of enduring repeated close-range booming inside the machine, I heard the tech’s faraway voice: “Good job. We’re all set.”

The platform moved out of the machine as I pulled off the helmet, removed the blanket, and got to my feet, feeling uncomfortably exposed in just the hospital gown.

The technician grinned at me and leaned his body against the wall. “So what do you do?”

“I’m a reporter for a newspaper,” I said.

“Oh yeah, which one?”

“The
New York Post
.”

“No way! I’ve never met a real-life reporter before,” he said as we walked back to the changing room. I didn’t reply. I put on my clothes as quickly as I could and rushed toward the elevators to avoid another conversation with the tech, who I felt was being awkwardly flirtatious. Unpleasant as they can be, MRIs are largely unremarkable. But something about this visit, especially that innocent exchange with the tech, stayed with me long after the appointment, much like the
Carota
picture. Over time, the
tech’s mild flirtations teemed with a strange malevolence created entirely by my churning brain.

It wasn’t until hours later, when I idly tried to twirl my ring on my still-numb left hand, that I realized the real casualty of that disturbing day. I had left my lucky ring in that lockbox.

“Is it bad that my hand still feels tingly all the time?” I asked Angela again the next day at work. “I just feel numb and not like myself.”

“Do you think you have the flu?”

“I feel terrible. I think I have a fever,” I said, glancing at my ringless left finger. My nausea matched my anxiety about the ring. I was obsessed by its absence, but I couldn’t get up the nerve to call the office and hear that it was gone. Irrationally, I was instead clinging to that empty hope:
Better not to know,
I convinced myself. I also knew I was going to be too sick to make the trek later that night to see Stephen’s band, the Morgues, perform at a bar in Greenpoint, Brooklyn, which made me feel worse. Watching me, Angela said, “You don’t look too hot. Why don’t I walk you home?”

Normally I would have refused her offer, especially because it was Friday evening on deadline, which typically kept us at the office until 10:00 p.m. or later, but I felt so nauseous and sick and mad at myself that I let her escort me. The trip, which should have taken five minutes, today took a half-hour because after practically every other step I had to stop and dry heave. Once we got to my apartment, Angela insisted I phone my doctor to get some answers. “This just isn’t normal. You’ve been sick for too long,” she said.

I dialed the after-hours hotline and soon received a phone call back from the gynecologist, Dr. Rothstein.

“I do want to let you know that we’ve gotten some good news. Yesterday’s MRI came back normal. And we’ve eliminated the
possibility that you had a stroke or a blood clot, two things that, frankly, I was worried about because of the birth control.”

“That’s great.”

“Yes, but I want you to stay off the birth control, just to be safe,” he said. “The only thing that the MRI showed was a small amount of enlargement of a few lymph nodes in your neck, which leads me to believe that it’s some kind of virus. Possibly mononucleosis, though we don’t have the blood tests back to prove it yet.”

I almost laughed out loud. Mono in my twenties. As I hung up, Angela was looking at me expectantly. “Mono, Angela. Mono.”

The tension left her face and she laughed. “Are you kidding me? You have the kissing disease. What are you, like, thirteen?”

M
ono. It was a relief to have a word for what plagued me. Though I spent Saturday in bed feeling sorry for myself, I gathered enough strength the next night to join Stephen, his oldest sister, Sheila, and her husband, Roy, at a Ryan Adams show in nearby Montclair. Before the show, we met at a local Irish pub, sitting in the dining area underneath a low-hanging antique chandelier that let off little tufts of light. I ordered fish and chips, though I couldn’t even stomach the image of the dish. Stephen, Sheila, and Roy made small talk as I sat there, mute. I had met Sheila and Roy only a few times and hated to imagine what kind of impression I was making, but I couldn’t rouse myself to join the conversation.
They must think I have no personality
. When my fish and chips came, I immediately regretted my order. The cod, caked in thick fried batter, seemed to glow. The fat on it glinted in the light from the chandelier. The fries too looked sickeningly greasy. I pushed the food around on my plate, hoping no one would notice I wasn’t actually eating anything.

We arrived early for the show, but the music hall was already crowded. Stephen wanted to be as close to the stage as possible, so he pushed forward through the crowd. I tried following him, but as I moved deeper into the horde of thirtysomething men, I grew dizzy and queasy.

I called out to him, “I can’t do this!”

Stephen gave up his mission and joined me at the back of the floor by a pillar, which I needed to support my weight. My purse felt as if it weighed forty pounds, and I struggled to balance it on my shoulder because there wasn’t enough space around me to lay it on the floor.

The background music swelled. I love Ryan Adams and tried to cheer but could only clap my hands weakly. Two five-foot-tall neon blue roses hung in the background behind the band, burning into my vision. I felt the pulse of the crowd. A man to my left lit up a joint, and the sweet smell of smoke made me gag. The breath of the man and woman behind me flared hotly on my neck. I couldn’t focus on the music. The show was torture.

Afterward we piled into Sheila’s car so she could drive us back to Stephen’s apartment in Jersey City. The three of them talked about how incredible the band had been, but I stayed silent. My shyness struck Stephen as strange; I was never one to keep my opinions to myself.

“Did you like the show?” Stephen nudged, reaching out for my hand.

“I can’t really remember it.”

After that weekend, I took three more consecutive days off work. That was a lot for anyone, but especially for a newbie reporter. Even when the
Post
kept me out past 4:00 a.m. working on Meatpacking District club stories, I always made it to the office right on time a few hours later. I never took sick days.

I decided to finally share my diagnosis with my mother, who was distressed when I told her about the numbness, particularly because it was only on one side of the body. I assured her it was only because of the mono. My father seemed less concerned on the phone, but on my third day off he insisted on coming into Manhattan to see me. We met at an empty AMC Theater in Times Square for an early showing of
The Wrestler
.

“I used to try to forget about you,” Randy “the Ram,” a washed-up pro wrestler played by a haggard Mickey Rourke, says to his daughter.
³
“I used to try to pretend that you didn’t exist, but I can’t. You’re my little girl. And now I’m an old broken-down piece of meat and I’m alone. And I deserve to be all alone. I just don’t want you to hate me.” Hot, wet tears ran down my cheeks.
Embarrassed, I tried to control the heaving in my chest, but the exertion made me feel worse. Without saying a word to my father, I ran from my seat to the theater’s bathroom, where I hid in a locked stall and allowed myself to weep until the feeling passed. After a moment, I collected myself and headed out to wash my hands and face, ignoring the concerned rubbernecking of the middle-aged blond at a nearby sink. When she left, I stared at my image in the mirror. Was Mickey Rourke really getting to me? Or was it the whole father-daughter thing? My dad was far from affectionate, habitually avoiding using words like “I love you,” even with his children. It was a learned deficiency. The one time he had kissed his own father was when my grandfather was on his deathbed. And now he was taking time out of his busy schedule to sit beside me in an empty theater. So, yeah, it was unsettling.