You Can Stop Humming Now

by Daniela Lamas

  But we had seen a handful of patients so far. We sorted through meds and screened for common post-ICU issues through questionnaires and conversations. A former EMT told me he didn’t want to spend time alone with his young son because he was afraid that he and the boy would be attacked—by what or whom, he couldn’t say—and he wouldn’t react quickly enough. Another patient admitted that she was afraid to cook, worried that she would turn the oven on, forget, and return hours later to find her food charred and smoking. In response, we listened, arranged subspecialist referrals, and summarized our findings in a note that would travel to each person’s outpatient doctors, so that we might begin to bridge the chasm that separated what had happened in the intensive care unit from what came afterward. But perhaps most important, we talked about post–intensive care syndrome. We gave our patients a name and a diagnosis, and with that, I think, a degree of reassurance and perhaps even hope. That felt so small, compared to the interventions we delivered in the ICU, but it was something.

  I stood in front of my patient that night, thinking of the question her daughter had asked, but also of the patients I had seen at the clinic. I thought of confusion and lost memories, sadness and overwhelming anxiety, nightmares and flashbacks to blood and carnage and suffering. In some ways, the people I had seen in our clinic were completely, unequivocally okay. These were the saves, the ones who had left the ICU and made it home. They could walk and talk, live with their families, go shopping, and eat the foods they wanted. But in other ways, compared to the lives they’d lived before critical illness, they weren’t okay at all.

  What new reality would this patient face? Maybe she would be okay, really okay. She would go to rehab—and that would be harder than I could imagine—but she would return to her world much as she’d left it. We are making changes in the ICU, like decreasing sedation and monitoring for delirium, and perhaps those interventions would make things better for her than they would have been otherwise. But even so, she might return home only to find her mind cloudy, her life in shadow. She might not be able to focus on the Sunday paper, or be able to spend time alone with her grandchildren, or even remember to go to the store to get milk. As the moonlighter, I didn’t know enough about her to understand what her life had been like before. But I did know that it would be different moving forward.

  I wondered if I should say any of this to her daughter. I gathered my thoughts and took a breath, preparing to speak, but then I stopped. Even if I told her daughter how things might be, even if I gave her the language of post–intensive care syndrome and told her what that might mean for her mother, I doubted that she would really be able to do anything with those words. She was so tired and so deeply relieved by the simple knowledge that her mother would not die in that room. That was all she wanted to hear. Maybe it was all she could hear, in that moment.

  So I smiled and I nodded reassuringly. It was true. Her mother’s breathing tube would come out, and she would leave the intensive care unit. And what then? I paused and jotted her name down so that I could find out how she was doing. Maybe I could make her an appointment in our clinic. I would try to remember to do so. For now, that would have to be enough.

  5

  Emergence

  Andrea DeMayo-Clancy bustled about her comfortable kitchen. It was a scorching summer day outside, but inside it was pleasantly cool. The espresso machine hummed with the morning coffee. The family’s dogs—two rescued from a puppy mill, the third adopted from a shelter—barked and begged underfoot. Andrea’s middle child, twenty-year-old Greg, clumped down the stairs, muttered good morning, and grabbed a bagel from the fridge to take with him to his job at the local coffee roaster.

  “Bring some more coffee home, would you?” Andrea called after him.

  Greg mumbled an okay before heading out the door.

  Amid all the movement of this ordinary morning, Ben Clancy was still.

  Ben sat quietly at the kitchen table while a visiting nurse wrapped a blood pressure cuff around his upper arm and recorded the results in a small notepad. His heart rate and blood pressure were normal and stable. It was one of the last times a nurse would need to come see him at home. At first glance, he looked like a healthy twenty-four-year-old guy, brown hair cropped close to his head, dressed in a Boston T-shirt, plaid shorts, and running shoes. But there was something about the stillness—even before Ben got up to practice walking and faltered for an instant, his physical therapist grabbing his belt to support him—that hinted at the events that had thrust him and his family into the murky world of recovery from brain injury.

  It had been just over five months since the overdose that had caused Ben’s heart to stop. When his eyes had first opened afterward, his gaze appeared empty and uncomprehending. Now there were pockets of blankness and confusion where memories had once resided, but he was home. He passed the time pleasantly with his mother, watching television and laughing at the shows when they were funny. And it had only been five months. He would keep getting better. That much seemed clear. But “better” is such a vague word. Does it mean that Ben will be able to live on his own and drive a car to work and go out on a date on a Friday night? Or does it mean something more modest, like walking without someone there to catch his fall, remembering to make lunch, turning the stove on and off again, and maybe putting away the dishes?

  Brain injury is a relatively young field of study, with new diagnostic categories and methods of tracking progress. Neurology researchers now know that significant improvement can occur over years, which is heartening, yet potentially torturous for families awaiting change that might or might not come. This is the mystery of brain injury, and what led me to the Clancy kitchen that morning. How much of the essential essence of Ben—that big, booming laugh that could fill a room, the flirtation and charisma, quick wit and intellect—lay dormant but would one day return, and how much of it was gone forever?

  When we met, I asked Ben’s mother what she was hoping for, and Andrea told me, without hesitation, “Everything.” She knew that things would be different from the life that she had once imagined for her son. But when she closed her eyes and let herself look into the future, she still saw Ben going to work each day at a job he enjoyed. He’d always told her he would drive a Ferrari, and maybe that wouldn’t happen, but she imagined her boy as a man behind the wheel of his own car. The visiting nurse had been talking about a different set of goals, such as a group home and a simple job. That was probably more realistic, Andrea acknowledged, but she wasn’t ready to see that as her son’s future. It had been only a few months, and she was still hoping for something bigger.

  Ben Clancy was a charmer. He could command a room. He was the guy who took the less popular stance in a debate just for the fun of it, just to be provocative, even if that meant defending a viewpoint he didn’t necessarily believe. He’d been a high school athlete who played on the football team but also loved jazz guitar, and in his small independent school he was encouraged to pursue both. Ben’s parents, Andrea and Bryan, had built their house on a thirty-acre lot in a small town about half an hour from Boston, and it became the spot where Ben’s large group of friends felt comfortable congregating. The Clancy house had enough extra rooms, warmth, and generosity that one of Ben’s friends even moved in for a couple of months while he was working through some personal issues. It was just that kind of place—a “home to the lost boys,” Andrea remembers.

  It’s not clear when Ben’s partying crossed the line. He’d been excited to start college at a small liberal arts school on a lake in upstate New York. He joined a frat there and decided to major in public policy. By junior year his grades had plummeted, and his parents confronted him when he came home for winter break. They knew he’d been drinking to excess. He also admitted that he had been experimenting with prescription narcotics on campus. Of course college boys in a frat would drink, Ben’s parents acknowledged that, but the drugs worried them.

  “We were brutal about that,” his mother remembers. “We told
him, ‘There’s no more college. We’re not writing a check for you to do that.’” Ben was furious, but his parents offered him no other choice. He could go back to school the following fall, but first he’d move home to spend the spring semester working on a construction site. Those were the terms. At the end of each day, Ben returned home exhausted, too tired from demolition and digging holes to have any interest in going out drinking or doing anything much at all, other than falling asleep. Andrea and Bryan felt hopeful. Their gamble seemed successful. After months of arduous physical labor, Ben appeared to have straightened out.

  When he returned to college that fall, he hung up his hard hat in his dorm room, proud of his time away. He had been changed by it. He brought home stellar grades and completed his course work, out of sync with his peers, the winter after many of his friends had already earned their diplomas. When he finished his courses, Ben moved back into his parents’ house while he started to look for a job. It must have been anticlimactic—he was done with college yet there he was, unemployed, living in his old bedroom, and he had to wait to officially graduate in the spring. Though it wasn’t ideal, Ben and his parents assumed that his time at home would be a short stint. But as the months crept on, his relative lack of independence began to infuriate him. Ben felt as though he had to ask permission for everything, and he hated asking for money, even for something as simple as a ride on the train. Andrea knew how much living at home without an income bothered her independent son, but at the same time she worried about the drinking and the dabbling with prescription pills, and she didn’t want to send him off with hundreds of dollars. So she gave him enough but not extra, and if he needed more, he’d have to ask for it. She didn’t think she and her husband were too hard on him. They did not intend to be.

  By the fall, some ten months after Ben had finished school, things had started to unravel. He still didn’t have a job. Most of his friends had found work, and they were busy. Ben made new friends, people who were willing and able to party with him midweek, and when he wasn’t with them, he drank alone in his room. It wasn’t a question any longer—he had a problem. His parents sent him to see a counselor, but Ben didn’t like what she had to say, so he stopped going. When Andrea and Bryan pushed him to go back, he assured them that his behavior would change once he started working. With the mandates of a regular schedule, he promised, things would get better. He was convincing. They all wanted this to be true.

  Sure enough, after months of looking and waiting, and dozens of phone calls and voicemails leading to one disappointment after another, Ben got three offers. He had his pick, and he chose to work on the business development team of a new company dedicated to improving energy efficiency. It seemed like a promising first job, working toward a mission he believed in alongside a good group of colleagues. Ben set his start date for the last Monday in February. The weekend before, he went out to party with some friends in Boston.

  It was early afternoon on Sunday. Andrea and Bryan hadn’t heard from Ben since the day before, but he was out with his friends, so that was hardly unusual. Bryan was at home when his cell phone rang. It was about Ben. Something had happened. It was serious, and Ben was in the hospital in Boston. Andrea was at her daughter’s school, in the middle of a dress rehearsal for their musical. She had been in charge of making the costumes. When her phone buzzed, she had no inkling of the magnitude of the situation, so she waited for a few minutes to sneak out during intermission.

  She received the same message as her husband, left the theater, and headed straight to Massachusetts General Hospital. Bryan had arrived first and called Andrea with the details of where she should park and where they would meet. She didn’t yet feel scared—she wasn’t sure what to expect. When she arrived in the ER, a social worker met her in the waiting room and took her to her husband. Together, they went to see their son. He lay on a stretcher, hooked to a ventilator, unmoving, with cooling pads wrapped around his body.

  Ben had been drinking and taking heroin and cocaine and sedatives, substances that, in a near fatal combination, had caused him to lose consciousness. His friends were likely too impaired themselves to notice what was going on at first. Someone had thought to call a relative, who might have been a nurse, early that morning, but it took some more time before they dialed 911, and by that point Ben had stopped breathing. Deprived of oxygen, his heart then stopped, too.

  When they arrived, the paramedics performed CPR, attempting to restart Ben’s heart with drugs and defibrillation. Though his heart was young and resilient and forgave the incident, his brain had been severely injured by the time without oxygen, and as a result, Ben didn’t wake up. Andrea and Bryan learned that Ben’s doctors were using the cooling pads to lower their son’s body temperature in the hope of decreasing inflammation and cell death, thereby mitigating the damage that had been done to his brain. Ben was sedated and paralyzed, too, so that his body would tolerate the cold without shivering—which could cause discomfort and raise his temperature. Bryan and Andrea stood at his bedside. It was as though they, too, were frozen, watching.

  Wow. He really did it this time. That was all Andrea could think. They had seen their share of Ben-related close calls. He’d been stopped once for driving after he had been drinking to excess. On another occasion, sober but exhausted, he’d fallen asleep at the wheel and sent his car hurtling a quarter mile off the highway down a fifty-foot embankment. The guy who found the car saw Ben walking, unharmed, and couldn’t believe that he had been the one driving.

  Both times, Ben had been lucky. But this was different. Andrea couldn’t let her mind go any further, not wanting to imagine how she would feel if her son never woke up. Sitting at the bedside, numbly watching the doctors and nurses tend to Ben’s body and the machines that were keeping it alive, Bryan contacted Ben’s would-be employers. He left a message saying that Ben would not be starting work the next day as planned. He wouldn’t be there the day after, either. Bryan later heard back from someone in the company who said that he, too, had been hospitalized with a brain injury a decade earlier. Other than still having some lasting problems with memory, he’d recovered. He told Ben’s father that he’d be waiting to hear how Ben did.

  Ben’s doctors laid out their short-term goals—Ben would not die, they would rewarm him, they would turn off the meds that kept him paralyzed and sedated, and he would wake up. No one would say what might happen after that awakening or how much of Ben would remain. A day passed. As planned, the rewarming started, and Ben’s body temperature ticked up toward normal, degree by degree. His doctors stopped the sedation, but Ben remained comatose. It was as though time moved in slow motion. Ben had undergone a CT scan of his head soon after the overdose to look for a bleed or a stroke; he’d experienced neither. Now, his doctors sent him for an MRI to gain a more nuanced accounting of the damage. Ben lay still, as if in a sarcophagus, while the machine banged and whirred and clanged its way to a picture of what had happened to his brain.

  When your heart stops and blood does not move through your body to your brain, the areas that take it the hardest are the ones with the greatest need for oxygen and sugar—the parts of the brain that store our memories and control movement and learning. This was true in Ben’s case; the MRI results revealed that his brain had not emerged unscathed. But he had been spared complete devastation, which meant that Andrea and Bryan could hope for some degree of recovery. The question was just how much.

  Three days after Ben’s body temperature rose to normal, he opened his eyes for the first time. It was a little step, but to his parents it was tremendous. Andrea had unlocked Ben’s phone—easily, because her son had used the same two passwords since he was in the tenth grade—and when he opened his eyes that day, she sent out her first update to Ben’s friends and family through his Facebook page: “Ben opened his eyes this afternoon…Hopefully more tomorrow.” Andrea stayed glued to his bedside, hoping for the next step forward. Maybe there would be a purposeful movement, maybe even a word.

&
nbsp; The minutes became hours and then days, one sliding into the next, vast stretches of nothingness punctuated by small but real victories. Ben opened his eyes a little bit more the next day, and when Andrea slid her hand into his, she felt the beginning of a squeeze. She updated his page with these details, too. But most of the time, there was little progress.

  The window in Ben’s hospital room faced the airconditioning units of the neighboring building. Andrea remembers this view. She remembers the beeping of the machines. Ben’s friends crowded the ICU waiting room and wrote goofy in-jokes on the “Get to know me” poster on the wall of Ben’s hospital room. In between Andrea’s upbeat updates, they posted to his Facebook feed with photos of a younger Ben—a chubby little brown-haired boy with a wide smile, a beaming teenager all dressed up with a date on his way to a school dance. Some days Ben would open his eyes and wince when one of the more forceful doctors pinched the bed of his toenail to test his level of consciousness and ability to respond to pain. Other days, he lay still.

  Once he started to wake and intermittently respond to commands, Ben was no longer in what would be described as a vegetative state. He had passed into a new territory, this one termed a minimally conscious state. In early March, Andrea reported a sequence of “good days” on Facebook—first, Ben was able to keep his eyes open all day, and on another day, he laughed. The laugh was quieter than it had been. It was not that booming explosive laugh you could have heard from anywhere in the house, but it still felt like a clue to her that Ben was in there somewhere. But then, two days later, he was spiking high fevers from pneumonia, and doctors had to drain a liter of fluid that had collected around one of his lungs. They left a tube in his chest to collect the remaining fluid. “He does not feel very good,” Andrea wrote simply. “Plan on short, quiet visits for now.”