Brain on Fire (19 page)

Stephen shook his head violently, struggling to control his temper.
How dare she say something like that
.
Susannah is not, and never was, slow.

The next morning, Stephen ran into my father in the hallway. At first, they spoke about superficial things—the cold weather, how Stephen’s work was, and so forth. But the conversation quickly turned to me.

“She’s still in there,” Stephen said. “I can see her. She’s still there. I know it.”

“I agree. And that’s who we’re fighting for. None of the doctors and nurses see it, but we do,” my dad said. “And we have to remain strong for her.”

“Agreed.” The two men shook hands. My dad wrote about his new impression of Stephen in his journal: “The one friend who did come everyday was Stephen. He was terrific. I wasn’t that sold on him when I first met him, but he grew in my respect and regard with every day that passed.”

T
hey did the second lumbar puncture on April 9. I had been in the hospital for eighteen days, and not only wasn’t I any closer to a cure, but my condition seemed to be heading steadily downhill. For one, Stephen had noticed that my constant chewing motions, my bride-of-Frankenstein arm movements, and my staring episodes had become more frequent.

EEG video, April 8, 10:30 p.m., 11 minutes

The TV blares a Discovery channel reality show.

Stephen sits beside me watching the show with his hand on my thigh as I sleep on my side, facing him. Stephen turns to me. Suddenly I sit up and start to inhale rapidly without exhaling. He strokes my hair. My arms rise straight out in front of me as Stephen snatches up the nurse’s alarm button. He stands over me, watching in horror as I slowly bend my hands to my face. I do this so leadenly that it looks like stop-motion animation. A nurse arrives. She speaks with Stephen, but the blaring television program masks their conversation. I don’t say a word. Stephen tries to explain what happened, miming choking to show her that I had stopped breathing. I extend my arms straight out again while he speaks, but my hands are bent downward at the wrists like those of a
T. rex.
Stephen gently places them back by my sides and rubs my shoulders, but my hands return to the extended position with that forty-five-degree angle at the wrist, as if held up by strings. I begin to move them in rapid, repetitive motions, up and down, up and down. Then I put my hands back to my face and lie down stiffly until an on-call neurologist arrives.

Stephen again tries to show the doctor what happened, clenching his arms and gritting his teeth. Stressed and terrified, he starts to cry. I toss a nearby teddy bear to the floor and bat the air awkwardly like I’m fending off a ghost—but with my arms so rigid I look like a Barbie doll going into battle. The doctor asks me a few questions that are too muffled to make out, but I do not answer, just stare off. I lie back down.

I then sit up again and try to get out of bed, but the guardrail stops me. The doctor lowers the guardrail and hands me a pail, possibly because she believes I’m nauseous. I sway back and forth. I lie back down with the pail between my legs. The doctor takes it from me and places it by my head.

End of video.

During moments like these, Stephen couldn’t will the night of the initial seizure on March 13 out of his mind. “What do you think that was?” Stephen asked Nurse Adeline later that night.

“Maybe she was just trying to get your attention?” Southerners called attention-seeking attacks “blue devil fits,” a vivid description of temper tantrums or anxiety attacks exhibited by young women. “Maybe it was some sort of an anxiety attack?”

Stephen didn’t buy this explanation. The next night, the same thing happened.

“I . . . don’t . . . feel . . . gooooood,” I said, angling my legs off the bed. Stephen followed my lead and lowered the guardrail and guided me out of bed and onto the floor. I began heaving for air again and crying. Stephen pushed the call button.

“My . . . heart . . . hurtssssssss . . .,” I said, holding my chest and squirming on the cold hospital floor. “I . . . can’t . . . breeeeathe.”

A nurse came rushing in. She took my vital signs and noted slightly increased blood pressure of 155/97. She hooked me up to a two-liter oxygen machine that can help with cardiac issues and
convulsions. Soon after, I fell asleep. Variations on the same scene would happen over and over almost every night when Stephen was visiting. They rarely happened with anyone else. No one ever provided an explanation.

My whole family was growing increasingly wayworn as time went on and no one seemed to have an answer. All the tests continued to come back negative, the immunoglobulin treatments didn’t seem to be the magic elixir that everyone had hoped they would be, and no one had been able to figure out what the high white blood cell count might be suggesting. Worse, Dr. Bugsy was now off the case, and this Dr. Najjar, whom everyone spoke so highly of, still hadn’t made an appearance. What would stop the others from giving up too and condemning me to a mental institution or a nursing home? Quietly, secretly, despite all their steadfast optimism, my family began to worry that if things continued to go downhill, they really might lose me forever.

The next day, the results from the spinal tap came back. Dr. Russo delivered the news, which was alarming but at least meant they were nearing an answer: my cerebrospinal fluid had eighty white blood cells in about a microliter of cerebrospinal fluid, up from twenty the week before. This meant that my brain was almost certainly inflamed; now they just had to figure out what was causing it. When I arrived on the floor, the chief complaint was seizures; then it was changed to psychosis; now Russo wrote down “encephalitis of an unknown origin.” Encephalitis, one neurologist would eventually explain, colloquially meant “bad brain,” or the inflammation of the brain due to a host of causes.

Since my mom hadn’t been there for Dr. Russo’s visit, my dad jotted the news down in their shared logbook:

He tried to communicate the good news to me, but I couldn’t follow. “Why don’t you copy what I’ve written, and write a few extra things as I tell you,” he said.

We imagined that when people came to visit, I could hand over this paper, hoping it would tell the whole story. The plan didn’t
last long: By the time Hannah arrived that same day, I could not find the notebook. It had been lost among the flowers and magazines that packed the hospital room. “I have, I have . . .” I struggled to explain. Hannah slid into bed beside me and laced her arms around my neck.

“I have, I have, I have . . .” I said.

“It’s okay, Susannah, just drop it. You’re tired,” my mother interrupted.

“No. I want to,” I stammered. My whole body tensed. “I . . . want . . . to . . . speak!”

“You’re tired, sweetie. You should rest,” my mom said.

I exhaled angrily. My mom understood that I was deeply frustrated by my inabilities and by being babied. Hannah sensed my irritation and distracted me with a month’s worth of
US Weekly
magazines and the copy of
Catcher in the Rye
that I had begged her for. Because I could no longer read on my own, Hannah read to me until I closed my eyes to sleep. Suddenly, though, I looked up at her.

“Tlantyoiforslen,” I said. “Tlantyoiforslen! Tlantyoiforslen!” I began repeating over and over, my face reddening.

“You’re welcome,” Hannah said, uncertainly.

I shook my head violently. “No, no, no!”

“Tlantyoiforslen!!!” I yelled. Hannah bent down closer to my face, but proximity only made me more unintelligible. I began pointing emphatically toward the door.

“Slefeen, sleefen!”

Finally, Hannah understood. She called Stephen in, and when I saw him, I instantly calmed.

The next day, taking a cue from my high white blood cell count, the doctors began looking for the source of my infection. A new set of blood tests was pending, so Nurse Edward came to draw blood. Stephen sat beside me, impressed by my demeanor today.
Though I was far from my old self, bits of my old humor seemed to have resurfaced. I smiled more, and appeared more engaged with the Yankees game, even commenting that I loved pitcher Andy Pettitte.

“How’s the game?” Nurse Edward asked. “Are the Mets winning?” He made a joke. I held out my arm. I had done this so many times that it was all rote now. Edward put on his gloves; placed a tourniquet around my right forearm; prepped the vein, tapping it with his fingers; and bent down to insert the needle. But as the needle punctured my skin, I jumped up violently and in one quick motion slapped the needle out of his hand, sending blood spurting out of my vein. I smiled, looking down in mock sheepishness, as if to say, sarcastically, “Oops, what have I done?” It was obvious to Stephen that I meant, “Fuck off.” Sometimes when I seemed to be doing better, the original psychosis would return. This frightened everyone.

“Susannah, please don’t do that. You can really get hurt and maybe hurt me. But it’s going to hurt you a lot more,” Edward said, keeping his voice under control. He prepared the needle again and raised it over my outstretched arm.

“Okay,” I said mildly. He inserted the needle, withdrew a few tubes of blood, and walked out of the room.

“W
aher,” I moaned, pointing to a pink pitcher on my bedside table. It was the day we were finally expecting Dr. Najjar to make an appearance. I was drooling and smacking my lips, a habit that now went on constantly, even while I slept. My dad put down his playing cards, picked up the pitcher, and walked out to the hallway to refill it. He returned to find me staring straight ahead. It seemed as if I were sleeping with my eyes open, my tongue hanging out of my mouth. By this point, he was so used to these scenes he took it all in stride. Instead of waking me, he silently read
A Portrait of the Artist as a Young Man
until my mother arrived.