CHAPTER EIGHT

THE HUMAN CONSEQUENCES

What exactly do you do after your husband has died in front of your very eyes?

The frenzy of the code had dissipated by now. Staff streamed out of Jay’s room, shedding protective gowns and masks, wheeling out carts and equipment. A housekeeper lugged a mop inside.

Tara had been shunted into the hallway and now stood just outside of Jay’s room trying to figure out what she was supposed to do now. She sank back against the wall next to his door. Was she supposed to call someone? Fill out paperwork? Stand there and wait? And who or what was she supposed to be waiting for? There wasn’t anything about this in the glossy “Welcome Guide” they’d received when Jay was first admitted. The unbearable hopelessness sapped the last vestiges of muscle function in her legs, and she worried that she might melt down onto the linoleum floor and dissolve into the industrial flecks of brown, beige, and gray.

Tara didn’t know what she was supposed to be doing in these post-death minutes, but unfortunately she knew exactly what was happening to Jay in those minutes. She knew precisely what the postmortem care would be, because she’d been there and done that. As soon as the distraught family members were led out of the room, it was the nurses’ job to prepare the body. Tara shuddered, knowing what was transpiring on the other side of the wall as she huddled in the sudden solitude. She tried to block out the images from her head, but they came at her relentlessly, obtrusively. Tara could see the nurses wiping off the bodily fluids—the blood, the vomit, the feces. She could see them pulling out the IVs and removing the EKG leads. She hoped they were being gentle, but she also knew that this was merely a job for them. The nurses might easily be talking about their upcoming vacations while peeling off excess tape and gauze from Jay’s body. Even if they were performing their tasks respectfully, they might be talking about a date last weekend or commiserating over their onerous schedules, knowing that their patient could not overhear.

Tara could see them rolling Jay first left and then right to ease the vinyl body bag under his stiffening body. While tugging away the blood-stained sheets, they might be laughing at something ridiculous they’d overhead in the cafeteria. A limb might slip over the edge of the bed while one nurse was recommending the new Lebanese place across the street that gave a 15% discount for anyone with a hospital ID. For these nurses, preparing a body was just a job.

But the most harrowing part for Tara was envisioning the final task. There was one last thing for the nurses to do before they could resume their regular work that had been disrupted by the code: they had to zip up the body bag. The zipper would start at Jay’s feet. It might catch on the first attempt. The nurses would grimace and give it a more forceful tug. After a hiccup, the zipper would shackle together the first clutch of teeth. Then it would grind unwaveringly upward, gradually entombing Jay’s body in white vinyl. The nurses would have to pull up slightly as they rounded the thorax and approached the head. And then, with a final yank, they would zip the bag over Jay’s face.

“I knew darkness would finally encase him in that white, airless body bag,” Tara said, describing that moment to me. “This was the face I used to caress and kiss and snuggle against. The thought of Jay unable to breathe in that bag started taking my own breath away. I began to suffocate. I thought I was going to die from profound fear and sadness.”

Tara couldn’t bear to stand on her side of the wall, assaulted by the image of Jay on the other side, suffocating inside the body bag. She would explode if she stayed any longer. There was nothing for her here—nobody and no place. She staggered down the hall and out of the hospital. There was really only one place where she’d feel safe. Only one place where she would be understood—the ER.

Somehow she managed to drive back to her own hospital. She hobbled into the triage bay, collapsing into the first nurse she encountered. “I think I’m going to die,” she said. Tara was quickly swooped off to a quiet exam room by her colleagues, who surrounded her with comfort. Someone took her vital signs and then immediately started IV hydration.

“Jay was killed,” she told them, sobbing. “No, murdered! Jay was murdered.” She caught the look exchanged by the doctor and the nurse tending to her, but she persisted. “I’m not crazy,” she implored. “They killed him.” She moaned and wept in the secure presence of her ER family, feeling safe for the first time in what seemed like forever. She was finally with people who wouldn’t let her die, even though that was what she ached for.

A nurse injected a syringe into the IV, and from the corner of her eye Tara caught the oily glow of the syringe’s contents, recognizing it as Ativan. “Give me only 0.5 mg,” she said faintly. “I can’t tolerate the whole milligram.” Another one of the nurses hugged her, cradling her face as the room narrowed to a black slit, and she fell into leaden, airless sleep.

It took Sasha three full days to travel home from China. A missed connection left her stranded in Shanghai, alone at age fifteen, unable to reach her mother, still processing the recent news that her father had been diagnosed with cancer, still coming to terms with the abrupt cessation of her trip. But Sasha had inherited Jay’s resourcefulness. She used the emergency credit card her father had given her, figured out how to book a room and get to a hotel, rescheduled her flight, and, seventy-two hours later, arrived stateside—jet-lagged and drained but all in one piece.

Tara was waiting at the airport with as many family members as could fit into the van. She was nearly comatose during the two-hour drive to the airport, needing her family to prop her up, even brush her hair, but she was able to make it known that she wanted to give Sasha time to recount her trip before learning of the terrible news that awaited her. She wanted Sasha to have a respite of normalcy, a moment of being a teenager relishing the accomplishment of a challenging experience that would be a defining milestone in her life—before the anvil of an even more life-defining experience would fall upon her.

On the drive home Sasha unloaded all the stories of her trip, bursting with details both memorable and mundane. She sat in the backseat, tucked between Tara and Tara’s sister—a carefully planned arrangement. Sasha chattered about her culinary and linguistic adventures (and misadventures) in China, handing her mother a delicately decorated box of tea as a gift. Sasha described the different members of her host family as well as the suicidal driving techniques favored by city drivers. By contrast, the monastery was peaceful beyond anything she’d ever experienced before. Being with the monks was as intense as it was moving.

Tara’s youngest brother was driving the van. The plan was that after an hour, at the halfway point in the trip, he’d give Tara the signal. That’s when Tara would shift the conversation. But still, when the raised eyebrows appeared in the rearview mirror, Tara froze. How could she bring herself to collapse her daughter’s world? How could she tell her daughter that she wasn’t brought home from China because her father was ill. She was brought home because her father was gone. Forever. The goodbye hug that her father had given her at the airport three weeks earlier? That would be it. The last touch of her father. Forever.

Tara agonized in her seat. How could she, as a mother, deliver such pain to her child? At that moment, Sasha reached into her bag and pulled out a parchment scroll from the monastery, with Chinese prayers printed in intricate script. “I got this for Daddy,” she said.

Tara couldn’t hold off anymore. As she recalled, “I could no longer be a mother; I had to be a nurse.” The paralysis of her grief was temporarily shunted aside as the switch to nurse mode clicked inside her. She explained to Sasha about Jay’s diagnosis of leukemia and the chemotherapy and the fevers. Tara was careful to keep her verbs in the present tense. She explained why they hadn’t told Sasha initially. “We didn’t want to tell you he was getting chemo because we wanted you to enjoy your trip,” she said. “We figured that you’d come home and Daddy would be bald and skinny and a bit weak.”

As she was telling this to her daughter, Tara suddenly became regretful of how aggressively she’d pursued the medical evaluation back when Jay’s white count was just slightly low. Her insistence on the bone marrow biopsy was what had given them the early diagnosis of leukemia and a shot at a cure. But it had also delivered Jay into the hell of the medical care that killed him. Had she not pushed the doctors to do the bone marrow, had the diagnosis been delayed by a few weeks, he might be alive now. Although a delay in the diagnosis might have given the leukemia a chance to take hold and all but guarantee Jay’s death within months, at least Sasha would have had the chance to say goodbye to her father.

As a trained nurse, however, she had to shunt her own feelings aside. Tara explained to Sasha, using lay terminology, how the fevers and infection overwhelmed her father and that he had more and more trouble breathing. She left out the part about the doctors and nurses doing nothing to help—she didn’t want her daughter burdened with that too. “He fought the infection as hard as he could,” she said, “but . . . I am so, so, so very sorry to tell you this: Daddy died.”

Tara remembers that Sasha’s reaction was instant: her face paled and her eyes grew agitated. Her breathing became so rapid that she appeared close to fainting. In the unsparing silence that followed, Tara took Sasha’s hand and told a lie. “Daddy didn’t suffer at all,” she said to her daughter. “It was peaceful and he just went to sleep.”

“It was all I could do,” Tara told me. “Was I to describe his slow, agonizing demise? Was it fair to make her understand the horrors of asking for help—over and over—and being denied every time?”

Tara told Sasha truthfully how Jay’s last words were about how much he loved her and Chris. She told Sasha that she’d read her email to Jay the night before he died and that the colorful descriptions made him smile. She told Sasha that Jay had said how proud he was of her. Sasha clasped the prayer scroll, turning it over and over in her hands during the remaining hour of the drive home, the scroll that she would never be able to give to her father.

Jay’s Navy dress uniform, with its four rows of military ribbons, lay smoothed out on the bed. Tara, who had also served in the Navy, knew full well how to assemble a uniform but on the morning of the funeral she could hardly stand, much less coordinate the proper positioning of epaulettes and insignias. Just envisioning the ceremony was overwhelming. The image of the casket cover that would close down on Jay brought back frightening memories of Jay’s struggle to breathe. And each time the memory of his agony unfurled in Tara’s head, her own breathing would constrict nearly to asphyxiation. She downed an Ativan tab before leaving the house. It was the only way she’d be able to make it through the ceremony.

“As Jay’s face became visible to me over the side of the pale-gray casket,” Tara recalled of that day, “I was overcome with a profound hollowness. There he was, motionless in his US Navy service dress blues. Still purple and mottled from his fight for life.” Rest in peace seemed like a cruel taunt. It took every bit of strength to hold herself together as she watched Sasha gently place the scroll of Chinese prayers into her father’s arms.

The funeral director moved to close the casket, and Tara suddenly felt the sanctuary begin to spin. She’d hardly eaten in a week and the throbbing emptiness unsteadied her. “I looked at Jay,” she remembered, “and began to realize I would never see him in the flesh again.” This recognition crashed in on her, and nothing in her surroundings could temper it—not the swell of loving family and friends around her, not the sympathetic religious clergy, not the stalwart presence of Jay’s naval colleagues, not even the cocoon of her ER family.

An uncontrolled wail escaped from her and reverberated off the domed ceilings. Tara’s legs foundered and she buckled into the side of Jay’s coffin. The sturdiness of the coffin, though, kept her from collapsing. “Yet again,” she recalled bitterly, “Jay was holding me up when I was weak.” A morbid vision flashed through her head, of secreting his stiff, purpled body at home just to keep him close. This seemed no more bizarre than any other aspect of the nightmare that she was living through. “Suddenly, his death was tangible,” Tara said. “It was harsh and undeniable. My best friend, my lover, my children’s father . . . was dead. He had been killed by people who had no idea that their decisions carried such finality.”

Jay’s flag-draped casket was carried to the cemetery by a military detail. After laying the casket at the graveside, the servicewomen and -men folded up the flag with crisp, respectful precision while the notes of “Taps” poured mournfully from a Navy bugler. After the smart salutes, a serviceman did a sharp about-face and knelt before Tara. “It was just like you see in the movies,” she remembered. He started with, “On behalf of a grateful nation . . .” and that was enough to wrench open the floodgates. Tara did not hear a single word of the recounting of Jay’s military honors. She clutched the flag to her chest, tears streaming down her cheeks. Tears not just for Jay’s death but for all the years of sacrifice. The never-ending deployments that may have served a grateful nation also served to tear Jay away from his family. The ongoing military commitments denied Jay the precious babyhood years of his children. The endless trainings that helped keep the Navy at the ready also helped keep Jay absent from so many family celebrations and ordinary weekends. Time lost, never to be regained.

What do you say when people ask, “What happened?” Do you sanitize it and offer an easy-to-swallow plotline about the tragedy of cancer? Or do you unload the complicated, uncomfortable, protracted truth, even on well-meaning people who are not expecting a medical tsunami? As a straight-talking nurse, Tara was never much for sugar-coating. So when people asked, she answered. Truthfully.

“The answer wasn’t short,” she said. Each time Tara told the story, though, she had to relive it. “Each time I told it, I shook uncontrollably,” she recalled. “I would be swept away with nausea and penetrating fear.” And even when she wasn’t telling the story, she was still reliving it. “The recurring visions in my head of Jay’s dying were actually more unbearable than what I had seen with my own eyes,” Tara said.

The anger was overwhelming. All she could think of was having the medical team imprisoned for murder. “I believed they’d committed a crime by knowing he was dying, based on my warnings of his decompensation,” she said. “They not only did nothing, but his oxygen was turned down just hours before his agonal breathing commandeered his failing body.”

Some friends suggested a lawsuit and even gave her names of malpractice lawyers. But such was her state in the days and weeks that followed Jay’s death that nothing registered. “I know I jotted down the information,” Tara told me, “but when I read the names and numbers later, I couldn’t even recognize my own handwriting.”

A few weeks after the funeral Tara sat at her mother’s formal dining table, swamped with papers. Who knew dying involved so much paperwork? There were hospital bills and insurance forms. Papers from the bank and credit card companies. There were things to handle from Jay’s job and his retirement account. There was stuff to sort out with the military and life insurance. Social security and the DMV. Tara had to figure out what to do with online accounts and passwords, with cell phones and email accounts. It was endless.

She couldn’t make even the simplest of decisions. “It was like my IQ had dropped fifty points,” she said. “I had become almost illiterate as a result of Jay’s death.” Basic forms were inscrutable. Numbers dissolved and reaggregated on the page like acrid remnants of a hallucinogen. She became afraid to make any decisions, worried that she’d inadvertently trigger some financial calamity by checking the wrong box. She hardly trusted herself to close the refrigerator door, much less calculate insurance payouts.

And of course the school year was just about to begin for Sasha and Chris, so there was the usual avalanche of registration forms and athletic forms and afterschool permissions and PTA requests. Plus the stacks of thank-you notes to well-meaning friends and family for all the offers of support. “Everyone was eager to help,” Tara recalled, “but it’s too fragile a concept—this dying thing. The house was filled with people and food, yet it never felt emptier.”

As she sat at the table that day, drowning in incomprehensible paperwork, her younger brother came into the room. He was a bodybuilder, with biceps and pecs that resembled midsize mountain ranges. But he was tiptoeing now, his enormous hands cupped gingerly around something small and furry. It looked like an injured baby bird. He tried to speak but couldn’t. All he could do was to stand before Tara and silently open his hands.

There, in his palms, was a lock of Jay’s hair.

It was only six weeks earlier that the extended family had formed an impromptu barber’s shop under the maple tree, offering Jay the bittersweet send-off to the world of patient-hood. Six weeks can be a lifetime for a lawn (and for a patient too). In those six weeks the lawn had been mowed three times, it had served as a parking lot for the swells of visitors and family, it had absorbed the rains of August and the early winds of September. And yet, somehow, this solitary lock of hair had managed to stay nested within the grass.

“As my brother poured Jay’s hair into my hands, I thought my heart would fall out of me,” Tara remembered. “I felt it sink into my chest, lost forever. I’d thought I was out of tears but I shook and cried, holding this delicate little bird in my hands.”

Tara tucked the hair inside the last shirt Jay ever wore and slept with the bundle under her pillow for weeks, inhaling his scent for as long as she could.

It took three months for Tara to set foot back in a hospital again. It was the day of her thirty-eighth birthday and she was marooned at home, sinking into the misery of yet another day, when a nurse called, desperate. It was her wedding anniversary that evening and she’d forgotten to block the date. Could Tara please, please cover her shift in the ER?

In some ways it was a blessing—an out-of-the-blue, last-minute coverage request from someone who didn’t know that Tara hadn’t donned scrubs in twelve weeks. Tara’s head nurse wasn’t sure if Tara was ready to assume her previous level of nursing—handling codes and trauma—so Tara was “banished” to triage, where she would take vital signs and do the initial intake of arriving patients. Thus she began her painful reentry into the medical world, a forced and discombobulating transformation from being on the patient side of medicine to being back on the provider side.

Tara slowly took on more shifts but found that even the most mundane medical tasks triggered intense flashbacks. Just reaching for a blood pressure cuff rekindled a memory of the monitor at Jay’s bedside that registered his escalating heart rate and plummeting oxygen saturation. The croup of his struggle for air echoed in her ears, and she would gasp for breath as her own throat began to constrict. Her neck and jaw were permanently clenched and she ground her teeth incessantly, to the point where two teeth eventually had to be pulled.

Tara found that she was intolerant of physicians who appeared lackadaisical, vocally taking them to task. At the same time she became obsessive over the slightest abnormality in a patient’s white count, in case leukemia might be lurking. She got into arguments with other staff over inconsequential matters. On her breaks, she wandered aimlessly through the halls of her hospital. But this triggered memories of Jay’s hospital, and then she’d be assaulted by visions of Jay suffocating in his bed, turning from pink to faintly blue to purple to dead. Shaking, she’d reach for the nearest trash can, vomit whatever there was to vomit up, and then stagger back to her post. Each ER shift left her heart racing.

One of her colleagues finally pulled her aside in the ambulance bay, concerned about her state of mind. When she told him about the visions of Jay’s death that were plaguing her, he said, “You know, you might have PTSD.” Post-traumatic stress disorder.

“This was the first time I’d associated those letters with something other than war veterans or rape victims,” Tara recalled. “I felt ashamed to be lumped in with those demographics, and I could barely meet his gaze. But I suddenly understood how Vietnam vets had turned so easily to drugs and alcohol. I would have done anything at this point to relieve my mental anguish.” She took down his recommendation for a therapist who specialized in PTSD.

She also decided that she needed to step away from clinical medicine. The day-to-day work with patients was simply too traumatic. Tara heard of an opening as a Clinician Nurse Educator and jumped at the chance. Educating nurses would be something pragmatic that could help improve the situation for patients, and possibly help channel her angst over what had happened to Jay. It seemed like a win-win scenario.

But it turned out to be nothing like that. When cases involving errors and near misses were discussed, the administrators seemed to care only about the hospital’s financial liability. “Two things happened to me,” Tara said. “First, their apathetic attitude about poor-quality patient care pissed me off and made me sick to my stomach. Second, I lost any doubt about suing the hospital where Jay died.”

In the public imagination, a malpractice lawsuit is a dramatic affair in which the injured patient or family gets their day in court, like they do on TV. A compelling snippet of forensic evidence is revealed to the jury and the entire case is resolved with a flourish; justice is done, and the miscreants are punished. In reality, of course, the experience of a malpractice case is far from that. As Tara was to learn, it’s an immense and painful slog that rarely offers the salvation that is longed for. She did, however, come to this bruising conclusion: “Nothing at the hospital would change unless Jay’s death affected their bottom line.”