• Waxy flexibility/catalepsy (muscular rigidity and fixedness of posture)
• Immobility/stupor
• Refusal to eat or drink
• Excitement
• Deadpan staring
• Negativism/negative symptoms
• Mutism
• Impulsivity
• Rigidity
• Echolalia (automatic repetition of words or statements said by another person)
• Direct observation
Catatonia comes from the misfiring of neurons. That “muscular rigidity,” also called posturing, occurs when the chemical link is severed between the patient’s awareness of her body and the feeling of comfort and appropriateness of movement. In other words, a catatonic patient cannot sense his or her body in space, and therefore cannot appropriately adjust. The result is that a person sits very still in awkward, atypical, unnatural poses. Catatonia is more akin to the results of a botched lobotomy than a persistent vegetative state because the person is technically still active. There are behaviors of a sort, as bizarre, nonresponsive, and inappropriate as they may be.
Meanwhile, a comment that the nurse had made the night before was haunting Stephen. She was a young Asian immigrant who had just begun working at New York University. While examining me, she said offhandedly, “Has she always been so slow?”
Stephen shook his head violently, struggling to control his temper.
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.”
CHAPTER 25
BLUE DEVIL FIT
They 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
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,
