You Can Stop Humming Now

by Daniela Lamas

  The pneumonia improved. It felt like a move forward when he underwent the surgical procedures to place a tracheostomy tube and feeding tube. He couldn’t yet speak, but with the breathing tube out of his mouth and instead hooked to the tracheostomy in his neck, he smiled and scowled in true Ben style. Weeks later, once he could breathe without the ventilator, Ben was finally able to move out of the ICU and into a regular room on the general medical floor. “Ben graduated to a new room!” Andrea announced on Facebook in mid-March. It was a single room, and Andrea promptly decorated it with pictures. There in that room, out of the intensive care unit, the pace of progress accelerated. Ben started to eat crackers and applesauce. His doctors switched out his tracheostomy tube for a smaller one, and then they were finally able to remove it altogether. Ben would later find the scar in his neck where the tube had been, and he would run his fingers curiously over the small patch of pink, raised skin. By late March, aspects of Ben’s personality had started to return. He was alert enough to wink at his physical therapist and seemed to be flirting with his nurse.

  Andrea tried to maintain her optimistic outlook. At first, the surge of adrenaline had numbed her worry. In those early hours and days, she had not been certain that her son would live, so she had simply been relieved at first when death did not come. It was all she could do to wake up, leave the house early enough to beat traffic on her way to the hospital, then spend the day sitting in her son’s room, watching him and listening to the doctors and looking out the window until the sun set and the night nurses came. She liked to stay until after shift change, so she could see who would be at her son’s bedside all night and they could see her. But as the days wore on, a different fear crept in.

  He was alive, but what was going to happen to him? After those initial days and weeks had passed, no one would tell her what to expect in the longer term or even offer her a range of possible outcomes with a best- and worst-case scenario. She watched Ben as she sat at his bedside. He could open his eyes and sometimes he could eat, but he still couldn’t talk, and she wondered whether this would be it, if this was as far as they would ever get.

  She understood that Ben’s doctors were in a tough spot with these questions—they didn’t want to limit hope, nor did they want to be unrealistic—but that didn’t make the unknown any easier. “If I let myself think too much about what the future would be like…” Andrea paused. Her expression clouded, but only for a second. “I just couldn’t go there.” And so she did the only thing she could do. She continued to update Ben’s page on Facebook. She encouraged those who were reading her updates to download and fill out a health-care proxy form, even if they were young, because you never know what might happen, and she wouldn’t want anyone to have to struggle through the paperwork and waiting she had in order to become the guardian for her son (who’d never designated a proxy when he was healthy). And she focused on the next goal, which was leaving the hospital for the world that came after, that hopeful place called rehab.

  Compared to the drab concrete of the hospital, the acute care rehab building actually sparkles. Though it is just minutes from the hospital where Ben had been taken after the overdose, and some of the same doctors work in both places, the rehab hospital looks like it is part of a different world. It is tall and new, and the walls are made of glass. You can see the Charles River from the patient rooms. It seems like the kind of place where something good can happen, and Andrea was excited to get there. Families generally are. Leaving the hospital means that the acute life-or-death catastrophe has passed, and it is time to begin picking up the pieces and start the task of getting better.

  But there is anxiety in the move, too. Ben would not stay at rehab forever. With the transfer, the clock on acute inpatient rehabilitation benefits starts ticking (insurance companies might cover only six to ten weeks of inpatient rehab). That time frame forces families to confront the limits of what is possible and the fact that their loved one might not improve as much as they hope—not in the short term, and maybe not ever.

  It had been a month since that Sunday morning when Ben’s heart had stopped, and it was finally time to leave the hospital. The ambulance drove for about ten minutes before arriving at the modern building where Ben would spend the next few months. At the time, still among the ranks of the minimally conscious, Ben couldn’t reliably follow instructions. But he could do things like reach for an object. He could eat. He could articulate words even though they didn’t necessarily make sense, and this evidence of preserved language function landed him in a category of brain injury that is said to portend a better outcome. The day after he arrived at rehab, his mother wrote: “The transition to the new place is slow. Ben sat in a wheelchair and we walked around the floor and checked out the views…Do not be alarmed if you come for a visit, Ben has a bed tent [a mesh cagelike enclosure around the bed] to keep him from trying to get out.”

  Andrea missed only one day at rehab, for her daughter’s musical. Her daughter was in her final year of high school, preparing to leave home for college. She and Andrea had both been looking forward to the time together, without her two brothers in the house. Things had changed—first Andrea’s other son, Greg, moved home, and then Ben overdosed. Now Andrea could hardly keep track of which classes her daughter was taking that spring. Though she was no longer consumed by the daily fear that Ben would die, she didn’t want to leave him alone. As if he were an infant again, she felt that she needed to be with him each day, to witness and to encourage and to be his voice when he could not speak for himself. She was there when, six weeks after his injury, Ben stood up from his wheelchair to take a step. On the same day, he brushed his own teeth. His mother watched him do that, too. “Look out, here he comes!” Andrea wrote.

  “In full disclosure, I have been posting the best part of Ben’s days,” Andrea wrote on Facebook a few weeks later. Ben had made his way out of minimal consciousness to “emerge” into conscious awareness, and he found this new world to be confusing and frustrating. Life was full of instructions he didn’t know how to follow and objects and activities that felt familiar—despite his memory problems, Ben opened his phone without hesitation—but were somehow different. The doctors assured Andrea that Ben’s agitation was normal, so she tried to interact calmly and to wait for the glimmers of recognition, for that Ben smile when he saw a friend, for his laugh or a hug.

  One Monday afternoon a few weeks into Ben’s rehab stay, a dozen clinicians gathered in a conference room on the seventh floor of the rehabilitation hospital to spend an hour talking about Ben’s brain. This meeting takes place once a week, and the process is generally the same: one hour, one patient. The hour begins when neuropsychologist Joseph Giacino assumes his post at a round table in the middle of the room. His audience, ranging from physical therapists in scrubs and sneakers to neurologists in bow ties, sits in a semicircle against the wall, watching with interest while eating lunch. After relaying a brief history of the case, Dr. Giacino pulls up the patient’s MRI on a large overhead monitor, scrolling through the pictures of the brain to display the extent of the damage. Stage set, he turns to the patient’s doctors, nurses, and therapists to see if they have any questions for him. These will guide his exam.

  Then the patient enters, often sitting in a wheelchair rolled in by a nurse. Dr. Giacino leans in as though he and the patient are the only two people in the room, and he begins to ask questions: What’s your name? Do you know what happened to you? On other occasions, he will ask the patient to perform tasks, say, identifying all tokens of a specific color, remembering a list of objects, or reciting numbers backward. He will deconstruct the nuance of the response later. Each victory and each mistake means something, and the assembled audience watches in rapt attention.

  By the time it was Ben’s turn to be examined in this clinic, he had fully emerged into the world of consciousness, and he could walk with a walker and he could speak, but his therapists had noticed a problem with what Dr. Giacino described to me as a suppressed dri
ve. If you asked Ben a question, he’d answer and do what you told him, but he didn’t initiate conversation or action. Left alone, he was rather still and silent. When he did speak, his voice was so soft that it was almost inaudible, termed “hypophonic.” Sometimes, when he walked with his physical therapist down the rehab building’s long halls, his regular strides would break into tiny little steps up on his tiptoes. This is what’s called a “festinating” gait (from the Latin “to hurry”). When Ben wrote, he started out with normal-sized letters, but these quickly degenerated into tiny, cramped chicken scratch, or “micrographia.”

  This constellation—hypophonia, festinating gait, micrographia—is actually characteristic of Parkinson’s disease, and this is what the team wanted to talk about at the weekly meeting. It wasn’t that Ben had developed Parkinson’s after his brain injury. Ben could actually snap out of the behaviors if someone specifically told him to speak up or to take larger steps. And so it seemed that these problems were all related to the damage to Ben’s drive and motor control that had been caused by his brain injury. Maybe stimulants would help, but on the other hand, too much nonspecific stimulation might make these problems worse. There was no easy answer, no drug or device that could resolve Ben’s tiny steps or make him speak louder or return him to himself again. There’s rarely a simple answer here in the Monday clinic. Brain injuries are messy. The relationship between damage, behavior, and the possibility of recovery is not always so clear. As a result, Ben’s hour concluded with the best plan possible, given these limitations: hopefully, if enough people corrected Ben, in a standardized manner, he would be able to recognize and in time learn to change these behaviors on his own.

  With that goal in mind, the physical therapists continued to work with Ben, taking pains to point out to him when he slipped into these patterns. By the end of May he could walk with minimal assistance, although he still needed prompting, and he could talk and eat nearly anything he wanted on his own. His physical therapists took him out on the Charles River in a boat, perhaps to show his family that even if he was not the same, he could still do things he’d once enjoyed. In general, the next step at this point would have been to transfer Ben to another rehabilitation facility, located up in the mountains of New Hampshire.

  But when it came time for another transfer, Andrea and her husband were conflicted. They wanted Ben to make the most progress he could during that first year after his injury, when it’s said the bulk of recovery takes place, and already three months had gone by. Yes, he could walk and talk and eat, but he was still so far from the person he had been before the overdose. Maybe he would never get there. But Andrea and Bryan weren’t certain that another rehab, far from home, would be the best place for him. Neither driving up to New Hampshire every day nor moving there seemed to make all that much sense. It had been too long, and they just wanted their son with them. So they began to make plans to bring Ben back home.

  Andrea holds a master’s in religious education, and she thought she would go back to work once her daughter left home for college in the fall, but that would wait. Motherhood took center stage once again. She wouldn’t take care of everything—Ben was a twenty-four-year-old man, after all, so an aide would come to help him get into the shower and a nurse would check his vital signs. She coordinated a small army of nurses and therapists—physical, occupational, and speech—who would come to the house to monitor Ben’s health and help him regain as much independence as he could. An exercise room on the first floor became Ben’s room, his bed equipped with an alarm that would go off if he got up in the middle of the night. And just a little more than three months after his overdose, on the day before his sister’s high school graduation, Ben came home.

  Ben had been home about a month. As Andrea told me her son’s story, from the drugs to the cardiac arrest to the brain injury, Ben sat with us at the kitchen table, dogs lazing idly at our feet. I felt uncomfortable at first, talking about Ben with Ben beside me, although he didn’t seem to be listening and surely didn’t seem to mind, even when his mother described how close he had come to dying. He was there, a solid physical presence, but it wasn’t really clear how much of the whole thing he could understand. He didn’t remember the injury or much of the year that preceded it, so it seemed to Andrea that his mind had tried to fill in the blanks with the data he had. After seeing so many patients with shaved heads and scars on their skulls while he was at inpatient rehab, he’d decided that he must have been in a car accident, or maybe he had been shot. Every time someone told him what had actually happened, it seemed like the first time he’d heard the news.

  But memories from high school and college lingered.

  “What did you play?” Andrea asked Ben of his years in high school sports.

  He spoke quietly but clearly. “Football…”

  “Do you remember anything else you played?” Andrea probed.

  He scrunched up his face as though he were digging through a storage facility for that album he knew must be there somewhere.

  Andrea gave him a clue. “You went to the mountain?”

  He thought a bit longer.

  “Snowboarding team,” he replied. I felt relieved, and stifled my inclination to exclaim, “Good job!”

  Perhaps Ben did not know what had happened to him, but I wondered if he knew that his life was different, that he could no longer call his friends to plan a trip or grab the keys and leave the house in a huff. Ben and his brother, Greg, had always made each other laugh, and sometimes they still could. They’d cracked up over something silly in the back of the car the other day, and it felt as though a bit more of Ben had emerged again, and that was great. But most of Ben’s friends, even the ones who had been the most attentive when he was in the hospital, had stopped coming by as they returned to their new jobs and apartments. Some still visited occasionally, but it was hard, because even if Ben enjoyed spending time in their company, it wasn’t obvious. He wasn’t the one to initiate conversations or make plans.

  I wondered if on some level he was saddened by all this loss, even if it was beyond his ability to articulate the feeling. Andrea thought about this, too. When Ben said he didn’t want to go out to a place where she knew his friends might be or shook his head when she asked him to bring his wheelchair into a store, she wondered whether he felt self-conscious. It was hard to tell. It seemed equally possible that the Ben who sat in front of me that day felt himself to be the only Ben Clancy that had ever existed.

  “Do you feel like you’re the same as you were before?” Andrea asked.

  “Yeah…,” Ben responded.

  “Do you feel like anything is different?”

  A shrug. “Not really.”

  Andrea kept her eyes on her son. “I think that you’re a lot quieter.” She turned to me. “Ben had this loud voice and laugh, and it was always going. It’s still there, I think, but the volume is turned down.”

  As we talked, the three dogs raced to the back door, barking as Ben’s occupational therapist stood outside. Since his return home she had been working with Ben on some skills, such as assembling ingredients and preparing a sandwich, and getting into the bathroom to sit down on the shower chair. Ben was “the sandwich man” before the brain injury, Andrea told me. It didn’t matter if it was ten in the morning or late at night: Ben was notorious for concocting some kind of delicious masterpiece and eating it with gusto. It was no surprise to Andrea that he would still be able to make a sandwich after his injury.

  On that day the physical therapist was on break, so the occupational therapist had decided to do some PT exercises with Ben. She passed him purple three-pound weights and placed her hand on the small of his back as he lifted his arms up and down ten times. Before the overdose, Ben would have balked if someone had handed him weights that were so small and purple and unequivocally feminine, but it was the most that he could lift with his balance and coordination the way they were. Moving on to the legs, they stood against the kitchen counter and Ben lifted his leg f
rom side to side, over and over again. His mother channeled one of his high school coaches to encourage him: “C’mon, Clancy!” Ben’s lips rose in a slight smile, but he remained silent.

  It was time to practice walking. Ben had scared his mother a week or so before, when she had left him alone in the kitchen for a few minutes and returned to find him gone. He had gotten out of his wheelchair, stood up, and walked up the stairs to the second floor. He was fine, but she knew that was just luck. He could have been hurt. She wondered what might happen if he wandered outside and someone saw his unsteady gait, assumed that he was drunk, called the police, and Ben didn’t know how to respond. “You imagine horrible things,” she told me.

  To help mitigate her concerns, she bought Ben a red ID bracelet bearing his name, address, and information about his brain injury. He’d grown deeply confused the first time he started wearing it, insisting he needed to put on his bracelet even though it was already there on his wrist, exactly where it was supposed to be. Andrea tried to explain, pointing to his wrist to show him he already had the ID bracelet on and that everything was okay, but he couldn’t seem to put those facts together. She watched him grow more frustrated until he simply stopped trying to understand, bewildered and deflated. “For him to give up, that’s just not like him.” Andrea sighed. “He was a great arguer.”

  Ben walked slowly down the hall. The occupational therapist grabbed the back of his belt when it seemed he might pitch over. His gait briefly degenerated into the tiny tiptoe steps Dr. Giacino had described, but the therapist reminded him to take “big steps, Ben,” and the walk normalized. When he came back down the hall, Ben struggled to get his feet in the right position to ease himself into his wheelchair. The tasks of turning around a corner and walking backward seemed particularly challenging, and we watched for a few long seconds before Ben allowed his body to sink comfortably back into the chair.