But the paperwork! Dying was even more complicated than taxes. The bureaucracy wanted to know every thing: How much high school? How much college? How many marriages? At what age? Children? Grandchildren? Stepchildren? Career? Years in career? Yearly income at death? Years in current address? Years in previous address? Service in the army? How long? How discharged? Year moved to state? And so on. As the days went by, Sophia had watched more than one family puzzle over the paperwork, shamed in the middle of their grief by how little they actually knew about their loved one.
More disturbing were the differences she began to notice in how the staff treated patients. The very old, suicides, drug overdoses, patients who had no visitors, no insurance, no flowers delivered to their room, no pictures of grinning grandchildren taped to the wall next to them—all of them seemed to die more quickly than patients like Helen. When Peggy, her favorite nurse, came to check on Helen, she worked up the courage to ask her about it.
“It’s not like we put a pillow over their faces,” Peggy answered defensively.
“I know, it’s only something I’ve noticed.”
“Well,” Peggy answered dropping her voice, “at a certain point, when there’s no family saying, ‘Do every thing,’ you do stop going the extra mile.”
Sophia said nothing, wondering what the extra mile looked like.
“Mostly,” Peggy said, “pneumonia gets them. You see their lungs filling up, you ask yourself, should I call the doctor? Half the time, they don’t even visit those patients on their rounds. They know who’s who. I mean, if the patients don’t have health insurance, who’s going to pay those bills? You know what a day on the unit costs? Medicare stops paying after twenty days. Oh, don’t look at me like that. Believe me, it’s not the worst way to go. We always make it as painless as possible.”
“What about Helen? Would you go the extra mile for her?”
Peggy looked her straight in the eye. “Don’t you think we see you sitting out there every day?”
Sophia turned her head, trying to breathe her way through the cloud of grief she had wandered into. Peggy made a clicking noise in the back of her mouth that was supposed to express sympathy, but Sophia knew the women who worked on the ICU had long ago learned to unhook their emotions from the work they did. She didn’t blame them. If they let themselves feel for every wasted body wheeled through those double doors, they’d never get anything done. Pain was debilitating. If you let it in, it could take over.
Peggy checked her watch. “Time’s up,” she said. For no reason Sophia could discern, hospital policy limited visits in the ICU to thirty-minute blocks, one person at a time. In an hour, Darius could come sit with her. Back in the waiting room, she found him with his arms around a small, dark-haired woman wearing a pink tank top and denim cut-off shorts with the words “Cutie Pie” written across the back in pink script. She was holding a balloon figure on a stick.
“This is Linda,” he said, over the woman’s messed-up hair. “Her boy was in an accident at Disneyland.”
Sophia nodded. With each fresh sob, the balloon man did a gentle jig. Until he turned fifteen and discovered sex, Darius had entertained the idea of becoming a priest. Comforting strangers in pain seemed to take him back to that earlier, purer version of himself.
A man with a square head and pale lips burst into the room like a gunslinger in a western. The woman detached herself from Darius and threw herself into his arms.
“Let’s get some coffee,” Darius said to Sophia.
“Where’s Miranda?”
“Wandering,” he answered.
It had been like that since the day of the accident. Both Darius and Sophia could sit silently for hours, every thing in them trained on the door through which Dr. Marjani or one of his minions would make their regular rounds. It was different for Miranda. Every few minutes, she would jump out of her seat and pace the floor. Occasionally, she’d windmill her arms or roll her neck like an athlete getting ready for a big race. After a few minutes of that, she’d announce that she was going for a walk. Once, after she was gone for three hours, Sophia went to look for her. She found her daughter curled up in a fetal position on the back pew of the nondenominational chapel provided for family members. A rosy pink light from the stained-glass window covered half her face. Her eyes were open. She looked beautiful. In normal times, Sophia would have asked, “Are you okay?” but these were not normal times and she already knew the answer. Instead, they sat together in silence for a good twenty minutes until suddenly Miranda sat up. “Daddy will be worried,” she’d said.
In the cafeteria, Darius told Sophia how the mother had yelled at the boy for not buckling his seat belt. To spite her, he had stood up just as the ride entered a tunnel and hit his head on a fake boulder. The mother, who was sitting behind him, had been forced to watch the unconscious boy’s body jerked the length of the ride. Sophia was so disturbed by the story that she didn’t see Miranda rushing in.
“She opened her eyes!” Miranda, normally so fastidious about the attention of strangers, ignored the stares from other diners. “I was standing right there. I wasn’t supposed to be there but I felt like seeing her, and all of a sudden she looked right at me and then she closed them.”
“Did she say anything?” Darius stood up.
Miranda shook her head.
“Did she seem to recognize you?”
Miranda hesitated. She could see how much her father wanted her to say yes. “I don’t know. Maybe.”
Darius hugged her and sprinted out of the room, his wife and daughter following close behind. Ignoring the rules, the family crowded around Helen’s bed.
Darius brought his face close to Helen’s pale face. “Honey?” he said quietly. “Can you hear me?”
Nothing.
“Helen?” He tried again. “It’s Daddy.”
“Did you say something in particular?” Darius glanced at Miranda.
“No, I was just, I mean, I was…actually, I was praying.”
Sophia and Darius exchanged a look of surprise. Religion was not a factor in their lives. When the girls had been little and the Methodist church around the corner had offered free child care during services, Sophia had occasionally taken them to church so that she could have an hour by herself in a setting that required nothing more than standing and singing an occasional hymn. She had only half listened to the sermons, which she found uniformly banal.
“I’m not turning into a God freak,” Miranda said when she saw the look pass between her parents, “it’s just something I do.”
Dr. Marjani appeared in the doorway.
“She opened her eyes,” Miranda said.
Dr. Marjani looked as if the news tired him. He nodded. “Did she seem to recognize you?” He took a slim flashlight out of his pocket, lifted an eyelid, and shined the light into Helen’s eyes.
Miranda glanced at her mother. She was tempted to lie and say yes. They had all noticed that Dr. Marjani had stopped paying as close attention to Helen as he had the first few days. Miranda could feel his hopes for Helen waning. If he thought she was showing progress, maybe he would be more interested? But she’d already told her mother the truth.
“No,” Miranda shook her head. “Not really.”
Dr. Marjani frowned. “Patients in your sister’s condition can seem to mimic the normal sleep/wakefulness cycle, but studies of MRIs on these patients have revealed no such consciousness.”
Miranda wished she could dismiss his opinion. “You said, ‘When she wakes up, it will be a breakthrough.’”
“I’m quite certain I said ‘if ’ she wakes up. Unfortunately, opening and closing the eyes are not the same as waking up.”
“So why did her eyes open?” Miranda pressed.
“A muscular reflex. Almost certainly not connected to volition.”
“Almost certainly?”
Dr. Marjani sighed. Generally, he disliked bringing up the level of uncertainty inherent in his specialty. Every year, someone who had been wri
tten off as hopeless flummoxed the medical profession by suddenly waking up, befuddled but healthy. The media loved those stories. Marjani hated them. They gave people too much hope and undermined his authority. At the same time, he was a man of principle. He knew perfectly well that medicine was built on a constantly shifting sandbar. He was only forty-three years old, but already he had seen the experts completely reverse themselves on several procedures that had, until recently, been considered the gold standard of care. The McMartins were educated people. How could he stand before them and claim to know something without a doubt?
“As best we know,” he amended his statement. “Now is probably a good time for a family conference to discuss Helen’s future.”
“We’re not pulling the plug,” Darius said.
Dr. Marjani flinched. After the accident, a colleague in the medical school had lent Darius a first-year medical textbook on injuries to the brain. Ever since then, he had worked hard to understand the nature of Helen’s injury. At night, he’d make Sophia quiz him on the orbital lobe versus the parietal, the cerebellum versus the cerebral cortex. She used her Latin to puzzle out the root meanings of the words: corpus callosum, a “firm body”; cerebellum, a “little brain,” but, unlike Darius, she could not seem to retain any of it in her mind. When the doctors gave them updates on Helen’s condition, she focused only on the big picture—was she better or worse?—while Darius used his new knowledge to grill the doctors over specifics. How were her “o sats”? What was the diastolic pressure? But if he thought the doctors would appreciate his amateur’s enthusiasm, he was wrong. Every time he asked a question using his new knowledge, Dr. Marjani seemed to bristle defensively.
“We never ‘pull the plug,’ as you put it,” Dr. Marjani responded to Darius’s comment, “without the full consent of the family.” Sophia thought about Peggy’s “extra mile” but said nothing. “Nevertheless,” he continued, “the ICU is not the place for a long-term stay.” He consulted his watch. “Could you meet me in three hours?” Of course they could—what else did they have to do?
Twice, they got lost trying to find the room where the meeting was scheduled. When they arrived, the only person there was the social worker whom Sophia disliked. Darius ostentatiously checked his watch.
“I got a page from Dr. M,” she said. “He’s on his way. How are you guys doing?”
No one answered. It was the kind of rudeness they would not have allowed themselves a few weeks earlier, but the accident had burned away all their false cheeriness. The woman’s face reddened.
“We’re okay,” Sophia relented.
“I’m sorry,” Dr. Marjani announced, bustling into the room a minute later. Sophia was surprised to see a spatter of what looked like fresh blood across the bottom of his white coat. Usually, he was meticulously clean. Without waiting for a response, he slid a DVD into a computer and turned down the lights. A series of images appeared on a large screen attached to the wall. Sophia knew they were CAT scans, but she could never reconcile the lime, red, and blue blobs on what looked like a horseshoe crab with what was, in fact, a picture of her daughter’s brain. Darius had once tried to explain what the squiggles and lines meant, but it was like the stars in the night sky—others might see the hanging belt of a warrior, but Sophia never could. Instead, she looked to Darius’s face while he studied the images, trying to decode his expression. He looked as confused as she felt.
“These are the latest scans?” he asked, pointing to two black-and-white images.
“I don’t know how well you can read them,” Dr. Marjani said, nodding. “But the main thing is to look here, along the falcine.” He pointed to a hazy white cloud. “The brightness indicates fresh bleeding.”
“How can that be?” Sophia asked, confused. “The accident was four weeks ago.”
“Yes,” the doctor agreed, “but as I have indicated previously, the initial trauma is sometimes only the beginning in a severe case. In the days and weeks that follow, a chain of biochemical events is set in motion that continues to inflict even more damage to the central nervous system. I’m afraid that that is what is happening in your daughter’s case.”
Sophia looked to Darius for confirmation, but he was staring at the doctor vacantly, as if his mind had wandered off someplace more pleasant. She noticed white patches appearing around his eyes. The blood draining away in a checkerboard pattern.
“I don’t understand,” Miranda spoke up, pushing her body forward so her torso was leaning against the table.
“Unfortunately, we don’t, either. As far as we know, the body responds to injury by releasing an influx of neurotransmitters—chemical messengers that create activity between the neurons. In a minor injury, this begins the healing process, but when the trauma is severe, sometimes the activity doesn’t stop. It’s like the body’s signaling switch is broken. As time goes on, that flood of neurotransmitters actually creates more damage.”
“Excitotoxicity,” Darius said slowly.
“Exactly,” Dr. Marjani said, repeating the word with a slight correction in pronunciation.
Sophia felt like a child in the middle of a game of keep-away. Her husband knew things, and so did the doctor, but they were tossing them over her head, out of her reach.
“In a healthy person, cells die and they are replaced,” Dr. Marjani continued. “When a person is gravely injured, the body continues to lose its ability to regulate itself. Blood pressure becomes unstable, the heartbeat becomes irregular. I don’t know if you have noticed it, but Helen’s EEGs are becoming increasingly labile.” Sophia did know something was up. Only yesterday she had been sitting with her daughter when the green line on the heart monitor had suddenly spiked, as if something had spooked her.
“What was that?” Sophia had asked Peggy, who happened to be on duty.
“Nothing to worry about,” Peggy had said, and smiled, “probably just a nightmare.” Sophia had to stop herself from pointing out how often she had been told that people in her daughter’s state don’t dream.
“Is there any treatment?” Miranda asked.
The doctor looked down at the table. His head moved slightly back and forth. “I think we may have exhausted all of our options.”
“There are experimental treatments,” Darius said slowly, as if repeating words someone was whispering into his ear. “Cell regeneration using olfactory glia cells, neurotransmitter antagonists.”
A vertical line of annoyance appeared between Dr. Marjani’s eyes. “Those experiments have been performed only on animal models,” he said. “Even if they were close to the human trial stage, which they are not, your daughter would not be a candidate. She can’t fully breathe on her own. Surgery is not an option.”
“If she’s going to die anyway, why not take the chance?” Darius asked.
“As her doctor, I could not endorse it, and I don’t think you’ll find a legitimate doctor who would.” Marjani looked to Sophia, then Miranda. “In my experience, the family that realistically prepares for the future is better prepared for the event when it happens. It is up to you, of course, but I have seen families ruin themselves emotionally and financially forestalling the inevitable. If she were my daughter, I would seriously consider making the rest of her life as comfortable as possible.”
As if on cue, the social worker leaned forward and pushed a booklet toward Sophia. “I can help with that,” she said in a whispery voice. Sophia glanced down at its cover—an oak tree with no leaves under the title “Crossing Over.” Sophia had a sudden, frightening desire to plunge a knife into the woman’s heart. She closed her eyes and willed the image to pass.
“You want to pull the plug,” Darius said.
“No.” Dr. Marjani shook his head. “I want your daughter to get up and walk out of this hospital, but I know the likelihood is remote.”
“That means there is a possibility.”
“Infinitesimal. But we will support the family’s wishes. We do, however, need to move her out of the ICU, as recovery i
s no longer an expected outcome and those beds are needed by other patients.”
Sophia noticed that Miranda’s body seemed to be sliding lower and lower in her chair. “Move her where?” she asked.
“There are support facilities.”
“Can we bring her home?” Darius asked.
Marjani hesitated and glanced at the social worker. “Some families do decide to bring the patient home and try to care for them in that setting. I think, however, it is not a good idea. The strain of having a critical patient in your home is not something that can be underestimated.” Sophia felt a distinct pressure somewhere in the region of her solar plexus. It was the feeling she sometimes got when she ate too much chocolate. Speedy, odd, sick. “We’ll need to talk it over,” she said. “As a family.”
In the parking garage, Sophia tried to catch her husband’s eye, to gauge where his feelings lay, but he seemed to be deliberately avoiding her eyes. Buckling her seat belt, Sophia recalled once reading that the best way to talk to teenage boys was in cars, where the distractions of the road kept them from getting too self-conscious.
“Darius?” she said as he put the key into the ignition.
“Yes?”
“Shouldn’t we talk?” A van pulled up next to them. A young man leaped out of the driver’s seat and hurried around to the other side, where a frail, elderly woman with fly-away white hair was struggling to get out of the car. The young man tried to reason with the woman, but she kept pushing him away. “I can do it,” she snapped.
“What is there to say?” Darius asked.
“The doctors just gave us a very grim prognosis. I think there is a lot to say.”
“Sophia, every time a doctor gives you an opinion, you accept it as if it were written on a stone tablet.”
“Obviously,” Sophia answered as calmly as she could, “you understand Helen’s condition better than I do, but I would be pretty surprised if you knew more than Dr. Marjani.” Right after the accident they had looked into finding a new doctor, but every one they interviewed said the same thing—in the field, Dr. Rajiv Marjani was one of the best. Sophia wanted to say more, to tell him how tired she was of hearing him begin every sentence, “According to my research…” but she knew the things said in the next few minutes could have repercussions for the rest of their lives. She wanted to make sure she got them right.
And Sometimes Why Page 13
