“James… James… James,” I said, hearing my brother’s voice on the other line. “James… James… James.”
In his dorm room in Pittsburgh, James choked back tears. I sounded so different, so unlike his big sister. He insisted, “I’m going to come home soon. And you’re going to get better.”
The following day, while I was on my second course of IVIG treatment, Dr. Arslan, the psychopharmacologist, came by on rounds and noticed that my speech problems had worsened. He wrote the following in his progress note:
It was the first time that anyone had mentioned the term catatonia, a stage defined by absence, by inability, by nonbehaviors. The mnemonic that doctors use to diagnose catatonia is WIRED ’N MIRED:32
• 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. 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 journaclass="underline" “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 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.