You Can Stop Humming Now

by Daniela Lamas

  With Ben in his chair, the session was over. That was it—forty-five minutes. Later in the day, the speech therapist would stop by. In between, there would be a sandwich to make and some television and some rest, but time was passing quickly, and it was hard to measure many day-to-day gains. With physical, occupational, and speech therapy sessions occurring only twice a week, so much of Ben’s potential for recovery seemed to ride on all the other minutes of the day when Andrea and Ben were alone. Sometimes it went smoothly, and they read together or played games and Ben did his PT exercises, but other days he wasn’t in the mood, and it was hard for Andrea to force her twenty-four-year-old son to stay motivated to regain the independence she wasn’t sure he was even aware of having lost. While it was easy to let a day go by with little to show for it, the weeks were turning into months. Andrea and Bryan sometimes feared they had made a mistake by choosing to bring Ben back home and that his potential for progress might be waning.

  They had started looking into day programs near their home where Ben could receive therapy in a more structured fashion. They were particularly excited about one such facility, where Ben could get physical therapy in a gym and work on speaking more audibly and remembering what he had done the day before. The rehab had a pool and a yoga room, and there was even a little market where Ben could practice going to the store and buying things. Once or twice a week there would be an extra activity in the afternoon, perhaps a lawn game or a swim or mini-golf. Because it was a rehab for people with brain injuries, most of the other patients would inevitably be stroke survivors who were far older than Ben, but occasionally there might be someone closer to his age.

  Ben had taken a tour, and at the time he seemed to like the place. He even remembered a few details about it the next day, although he hadn’t been able to recall them since. And so Andrea and Bryan were optimistic, “pinning a lot of hopes” on the possibility. Was it the best in the world of options? Andrea didn’t know. There was no way to know, really. The clear protocols that had guided Ben’s initial days and weeks had been replaced by the feeling that they were flying blind. But Andrea did know that Ben would be busy there, and that having a place to go during the day would be good for him. And maybe someone could tap into his competitive spirit and motivate him in a way that Andrea, on her own, could not.

  Andrea likes to plan, and in a way it seems that looking forward and thinking about what might come next saves her. She had started to fill out the paperwork that could allow Ben an aide who would come to the home for a few hours a couple of times each week. Andrea worried that Ben would view the aide as a babysitter—he wouldn’t stand for that, and that wasn’t what Andrea wanted—but it would help if there were someone else around so that she could get out of the house to run a few errands. And then, maybe in a few months, Ben would be able to undergo some structured cognitive testing, just to see where he was. There was a lot swirling about, and Andrea knew it. It could be overwhelming, but she needed the momentum. “If we stopped…I guess I just don’t want to stop,” she said. “I don’t want to reach the point where we’re not going forward anymore.”

  For the time being, Ben and his mother would continue to spend nearly every waking hour together. Before the brain injury, they’d been “like gas and a match.” Ben could be a funny, loving guy, but he had a temper, too, and mother and son set each other off unlike anyone else. Whether Ben was arguing a contrarian political view to get a rise out of someone, or announcing his plans to go out against his parents’ wishes, when Ben was there, you knew it. Now, in a way, being with Ben was simple. “There’s no drama, there’s no arguing or disagreements. That part, it’s nice,” Andrea said. Some friends and relatives seemed to feel that their job was to keep Ben talking, quizzing him on the past and asking him questions, but not so for Andrea. She knew things could be far worse. When Ben was at rehab, she had seen parents caring for adult children who would likely spend the rest of their lives institutionalized, unable to walk or talk or eat on their own again. Ben was home and it was easy to be with him, and their quiet moments together were tender and good.

  But still she missed her son, that charismatic young man who felt so deeply, whose curiosity led him to pore through Reuters news online each day, who made her furious but could also make her laugh in a way no one else could. It is a strange thing to miss someone while he is sitting next to you, maybe even to mourn him a little bit. “I’d love to be able to have the kind of interesting conversations we had in the past,” Andrea told me. “I look at him sometimes and I think, What is it going to be? Are we going to get there? Are we going to have conversations and interactions that aren’t just, Do you want a drink of water?”

  These are questions that will be answered in time, maybe in a year or two, or maybe even longer. In five years, both of Ben’s younger siblings will likely be out of the house, living their own lives, and Ben will be nearing thirty. Maybe he’ll have his own apartment, with a job to go to during the day, or maybe he will have made it out of the house to live in a supervised setting. But perhaps he will be living at home still, with his mother, in his room on the first floor.

  Ben’s heart had stopped. He would have died, but modern medicine had intervened to start his heart again. Doctors had cooled his body until it was freezing, and then they warmed his body back up. Now he was home in shorts, a T-shirt, and sneakers, sitting at his kitchen table. With all the uncertainty ahead, there was the summer day, and the present; lunchtime, and Ben was going to make a sandwich. Andrea took the ingredients out of the fridge. She offered Ben turkey or prosciutto, cheese, lettuce, mustard, and then the choice of a roll or sliced bread. She held up the two types of bread, and Ben, the sandwich man, wordlessly reached out and chose the roll. He split it, slowly laid out the turkey slices, layered on the cheese, and topped it off with a squeeze of mustard. The dogs sat at his feet, as if hoping for a bit of meat to fall from the table. The kitchen was quiet.

  One afternoon about a month after I first met Ben Clancy and his mother, I observed Ben’s outpatient therapy at the rehab hospital near his home. Ben hadn’t been going there long, and there weren’t any patients his age after all, but Andrea was feeling good about her choice. Watching Ben in the gym that day working on balance and coordination with his physical therapist, I was struck by how far his physical abilities had progressed in just those few weeks. He was able to balance and turn and walk in ways that clearly would have thrown him off the day I had first met him, back in his home. I noted that to Andrea, and she seemed happy to hear my take. She knew Ben had been doing well, but she was with him every moment, so progress was harder for her to see. Ben smiled, too, but he was still quiet, and in a way passive.

  He struggled with memory, and his therapists had equipped him with a binder so that he could record his activities and what he ate each day. On the day I observed him, Ben’s occupational therapist took him to the kitchen. He didn’t seem as interested in food as he’d been before the accident, and he kept losing weight. So that afternoon Ben was going to practice making a grilled cheese sandwich. He stood at the stove, waiting for a prompt from the therapist. As I watched him carefully following the instructions, I thought again of that boisterous Ben I had never met, who would whip himself up something delicious regardless of the hour. Ben hesitated and left one side of the sandwich on the stove for too long. The small room filled with a not-unpleasant smell of burnt toast and cheese. The therapist coached him to scrape the burnt and blackened piece of bread off the cheese so he could salvage a good half sandwich. He placed it on a plate and sat down. We all watched as he took a few bites.

  6

  Where the Bridge Ends

  I noticed the scars when we met. Not in the first moments, when all I felt was the energy of this pretty woman around my own age and her husband, a police officer with an affable demeanor and strong handshake. But then as we sat and talked I registered the healed wounds where the tubes had entered her neck, the tracheostomy tube first and then the garden hos
e of a catheter that had carried blood out of her jugular vein and through a machine next to her hospital bed.

  I didn’t see the rest of the scars until Cindy Scribner lifted her shirt, surprising me mid-conversation to show me her abdomen. That was where surgeons had opened and closed her when she was bleeding inside. The pale skin there was jagged where the edges met, as though it had been violated too many times. Her chest and belly were studded with evidence of other invasions—a collapsed lung, another bleed. A final thin scar ran under her breasts where her chest had been cut open like the shell of a clam so that surgeons could replace her lungs with a pair taken from an even younger woman who had died.

  In telling Cindy’s story, I find myself wondering where to begin. In a way, the story starts with a machine. That’s how I came to meet Cindy, after all—because of the lung bypass that had kept her from dying while she waited for a transplant. Of all the technologies in the hospital, I found this one particularly compelling. Even the name, extracorporeal membrane oxygenation, or ECMO, struck me as futuristic, like a science fiction trope that has become reality.

  On this machine you can watch your blood exit your body through large catheters, turn from dark blue to oxygenated red, and return to your body again, multiple times every minute. You are alive and awake, but that life is so precarious you can’t leave the ICU. So you wait days and weeks and even months for a transplant or for your lungs to recover, all the while fearing a complication. “In the scope of what we do to humans, this is the kitchen sink,” one surgeon told me.

  Though it’s currently at the cutting edge, I’m told that ECMO will become standard practice in intensive care units in a matter of years. And I wanted to know the details. For example, how does someone who is awake on ECMO pass the hours? When days become weeks, does it begin to feel like life, or is each day just a counting down of the time in purgatory? And what if you are waiting for a transplant but it doesn’t come? Is it possible to live indefinitely in an intensive care unit? And if it isn’t, well, what then?

  Because those questions are what brought me to Cindy, I could start with her in a hospital gown; her husband, Derek, flipping through TV channels trying to mask his fear; thick catheters and tubing; a machine that chatters and clangs. But maybe I should start when the symptoms did, nearly a decade earlier, when Cindy began to cough.

  I imagine her, a young nurse at the time, married with two children already and another on the way. Likely she was so busy with her growing family that she paid little attention to the dry cough that came on like a tickle in her throat. At first it was just an annoyance. But when the cough started to keep her up at night and she coughed so hard in the morning before work that she’d gag and retch, she managed to fit in a visit to her doctor. He prescribed her an inhaler and considered ordering a chest X-ray if that didn’t help, but it didn’t seem worth the risk to Cindy’s pregnancy. It was just a cough. One of her friends suggested the unlikely theory that her cough was somehow related to pregnancy and it would remit as mysteriously as it had appeared after she gave birth. She hoped so.

  But the baby was born and she kept coughing. At that point it had been going on for months, so her doctor decided she should get the chest X-ray after all. A day or so later, Cindy’s phone rang. She grabbed it, probably distracted as she juggled the phone, the infant on her hip, and the two young daughters clamoring for her attention. I can imagine how her body tensed and her daughters’ high-pitched excitement faded into the background as she took in her doctor’s sober tone: “Cindy. The radiologists are telling me there’s something wrong. You need to see a pulmonologist.”

  She tried to stay calm through it all, even when the specialist explained to her how he would put her to sleep and pass a small flexible tube with a camera at the end of it down her throat, through her trachea, to take a sample of her lungs. Everything looked normal, he told her afterward, and though she kept coughing, she must have repeated these words to herself as evidence that she was fine, that everything could go back to the way it was before, that it would all be okay.

  Cindy coughed through another pregnancy and the birth of her fourth girl. Sometimes when she ran after her daughters she was struck by an odd awareness of her ragged breath and pounding heart, but she managed to keep her fears tucked away in the background—until one morning, when she stood up and it was as if there wasn’t enough air in the room. She was at work at the time, so she grabbed an oxygen probe and stuck it on her finger, and in that surreal moment she watched the number sink. Hands trembling, she called her doctor, who set things in motion to send her from the local hospital to Boston for more tests that led, finally, to a diagnosis: idiopathic pulmonary fibrosis, commonly referred to as IPF, a scarring of the lungs without a known cause.

  It’s not cancer but might as well be. Sitting in the office of the Boston specialist, Derek and Cindy heard the words, but it must have been nearly impossible to wrap their minds around the meaning. There’s no cure; half of the people with this disease die within five years, and, implausibly, the only treatment that might prolong Cindy’s life would be a lung transplant. Cindy had never even heard of this thing, and yet a doctor was telling her that it might kill her. She had lost her parents when she was young, remembered bouncing from relative to relative and home to home, and knew that she would do anything to protect her daughters from such an unsettled childhood. So when her doctor mentioned transplant, as scared as she was and as far-fetched as that hope sounded, she grabbed on to it and she did not let go.

  Do I start the story there, the day everything changed?

  Or does it start in a hospital room with Cindy hooked to a machine that would save her life if it did not destroy it? Maybe it begins later still, the day her surgeons gave her newly transplanted lungs. Any starting point is ultimately arbitrary, yet it frames what the story becomes. And Cindy’s story is not just about ECMO, as I had thought it would be, or about being a mother with a fatal lung disease, or even about what it is like to live with the bittersweet gift of a lung transplant.

  So instead, I’ll tell Cindy’s story the way she chose to show it to me the day we met.

  The first real scar, the one in the middle of Cindy’s neck, just below the spot where her vocal cords sit, is from the tracheostomy tube.

  After the shock of the diagnosis, time did not speed, as Cindy might have thought it would. It moved along at a plodding pace, weeks and then months fading one into another with the sameness of doctor visits, tests, and waiting. Derek tried to keep the tone light by finding ways to joke, even when Cindy’s doctors determined that she needed to carry oxygen with her during the day, and Cindy offered a smiling approximation of her prior self in return, but she hated the way life had shifted. Though she wanted to stay positive, she dreaded the curious stares that followed her as she walked down the street with her portable oxygen tank and four children in tow. She didn’t want to scare her girls with the medical equipment, and she didn’t want to have to ask for help to do simple things like cleaning the house or doing the dishes or playing with her daughters.

  And then there was the waiting. First there was the wait to get on the transplant list, and even after she’d made it through the office visits that felt like interviews and endured test after laborious test, there was the wait for a call that wouldn’t come. The transplant wait times in the Boston area are notoriously long, and Cindy’s blood type was hard to match. As months and then years passed, and Cindy became more easily winded, tethered not just by the oxygen tubing but also by her worsening lung function, she worried that this was it. She didn’t sit by the phone. Her heart didn’t jump each time it rang. Deep down, she didn’t expect that a transplant would ever come.

  Keenly aware that her health would only decline over time, Cindy resolved to stay as active in her family’s life as she could. So one Mother’s Day, a few years after her diagnosis, Cindy dragged her tired body to a field near her home to watch one of her daughters play in a flag football game. Though her head thr
obbed, she waited until after the game to tell Derek how her mind felt foggy and all she wanted to do was fall asleep. The cough and breathlessness had grown familiar to her by now, but this was different, she explained. Something wasn’t right. Unable to shake their mounting worry, Derek and Cindy drove the familiar hour from their home, just over the Massachusetts–New Hampshire border, down to Boston. It was already late when they got to the ER, and it was going to take hours to get Cindy a bed on the general medical floor. As the time crept on, she encouraged Derek to go home. She’d be okay.

  Cindy doesn’t remember this part, but at some point after Derek left she stopped breathing. The doctors rushed to her and when they could not rouse her, they moved to intubate. They called Derek on his cell and he turned his car around—he was lucky he didn’t get into an accident—to speed back to the hospital. This, Derek remembers, was the moment “when hell began.”

  He learned that the carbon dioxide levels in Cindy’s blood had been climbing, which explained her headache and fuzzy feeling earlier in the day. When they reached dangerous levels there in the ER, her breathing slowed and then halted completely. The tempo shifted; the last bits of normalcy eroded. Up in the ICU, Cindy’s doctors spent days trying to get her to breathe on her own, but with her degree of fibrosis, her lungs were too damaged. So they brought Derek the consent form for a tracheostomy tube. He scrawled his name almost without thinking, because he was in Boston and he was scared but he trusted the doctors and wanted them to do whatever they could to save his wife’s life. If it were up to him, they wouldn’t even ask.