You Can Stop Humming Now

by Daniela Lamas

  I heard about her transplant through the hospital grapevine, and though I thought of her occasionally, I didn’t see her after the surgery. Months later, on an overnight shift in the ICU, I noticed her name on my list of patients. She’d received the new lungs, had made it out of the hospital and to rehab, but now was intubated and battling a new infection. That night I stood at her bedside. She was sedated to the point of unconsciousness, paralyzed to allow the ventilator to do its work. Her body was swollen and still. I thought of those months of waiting and remembered her mother, the way she sat in the corner of her daughter’s hospital room, offering a sad smile and a tired greeting to the doctors and nurses who passed in and out. I tinkered with my patient’s ventilator settings throughout the night and titrated the medications to support her blood pressure. When I left the hospital in the morning, I never expected to see her again.

  But there she was, sitting in the waiting room of the clinic with her mother at her side, as before. She was wearing a mask to protect her compromised immune system from the threat of infection, but I thought I could make out the shadow of a smile behind it and I grinned back at her. “How are you?” I asked.

  “All my hair fell out,” she told me, gesturing self-consciously at her close-cropped hair. I had thought the cut was intentional, fashionable. “It must have been one of the medicines. It’s growing back now.”

  She had been admitted again a handful of times since she’d left the ICU and was still too weak to walk, she told me. She struggled with persistent nausea and panicked each time she entered the hospital, even for scheduled appointments. But she was home. And maybe she would continue to get better and her hospital admissions would grow fewer, the time at home longer. On the other hand, maybe what I saw before me that day was as good as it would get for her. Perhaps I would next encounter her overnight, back in the intensive care unit. Her body could reject her transplanted lungs or finally succumb to a disseminated infection it couldn’t fight. She might never exit what I perceived as limbo to emerge, fully healed, on the other side.

  There was so much I wanted to know from her—first, what it had been like to live in the hospital while hoping for lungs that might never come, and now, what it was like to be alive and to reenter the world after a survival that had come at such a high cost. But at that moment, she was living at home with the immediate threat of critical illness lifted, however briefly. And she wanted to say hello and to share the strange thing that had happened to her hair.

  “Well, I like the hair,” I said, honestly. I was tempted to stay and talk more, but I had a full clinic schedule. “You know, I’m so happy I ran into you,” I told her. I picked up the pile of medical records and CT scan reports for the people I’d see in clinic that afternoon. There was a lot to read. Then I looked over my shoulder, pausing for just a moment to watch as my patient’s mother wheeled her out of the clinic office, beyond my line of sight, and into the sun of a summer afternoon.

  Afterword

  This is not a book about death, though death is present in these pages, an unavoidable reality in the background of each diagnosis and decision. Even with the VAD, there is death. Even with ventilators, ECMO, infection control in cystic fibrosis, even with transplantation and electric shocks, the outcome is ultimately the same.

  But this is a book about life. It’s a book about how people live today, both in the shadow of and enabled by previously inconceivable advances. In a way, it’s a hopeful book, although that’s not what I expected at the start. When I began, I knew I wanted to find people who were alive, maybe for days or maybe for years, as a result of today’s medical interventions, and I wanted to learn more about what their lives were like. I started out with an assumption that I might encounter people who were miserable in modern-day purgatory, men and women whose lives had been extended against their wills, who would perhaps prefer for their suffering to have ended. But that’s not all I found. Through Facebook messages, an illicit summer fishing trip, or a carefully assembled sandwich, the people in this book move forward even as their days diminish, finding meaning in lives that are nothing like what they had planned.

  As we look toward our futures, we may each be faced with new machines and life-prolonging possibilities, all with different costs and consequences. When it comes time to weigh these choices, there will be no clear right or wrong. I can only hope that the stories captured in these pages, and in the brief updates here, might help us to enter and navigate our ways through these new worlds with our eyes open.

  In Cambridge, Massachusetts, it is Charlie Atkinson’s coda. He celebrated his eightieth with a fantastic party held at the Harvard men’s club he had belonged to as an undergraduate. It was a swanky event, perfectly executed by Jeannette, the kind I never would have been invited to if I hadn’t walked into Charlie’s room that day at the long-term acute care hospital. The wine flowed and the guests snacked on cheese and crackers before heading upstairs to a birthday dinner and toasts. I saw a few familiar faces from the rehab hospital, including the physical therapist who had taken Charlie into her boot camp and pushed him to get moving again, but most of the assembled crowd had nothing to do with sickness. Charlie was clearly the man of the evening, wearing a tux, a white tie, and a top hat. His voice, once muted by the trach tube, boomed as he made his way through the crowd, leaning over his walker to meet and greet. Despite the chronic urinary catheter and nerve pain and weakness he carries with him, Charlie is alive, and he is still getting better. At eighty years old, he is making plans for the future. He has started a new company that aims to create what Charlie calls the “Atkinson artificial mind.” He’s fundraising, hiring, building a website, and contemplating writing a book, all while helping to plan his upcoming Harvard College Class of 1958 sixtieth reunion. His are big, ambitious plans, the kind that are generally reserved for younger men, and all of that feels good.

  Van Chauvin continued to enjoy his freedom after coming off the transplant list. He was able to switch most of his care back to doctors near his home—a change that meant fewer days spent navigating traffic and waiting in offices, and more time, energy, and battery power for the activities he enjoyed. In our conversations throughout the spring and early summer after we met, we did not talk about hospitals and transplants; instead, Van told me about his plans with his family, his excitement over a new grandchild on the way, things he dreamed he might build.

  But this past August, in the waning days of a Massachusetts summer, Van Chauvin died. When I learned of his death by email a few days after it happened, I found myself replaying our many phone calls. The last time we talked, about a month before his death, Van had invited me to spend an afternoon with him on his boat. I had smiled, thinking—despite all I knew about average life expectancies and the realities of the VAD—that there might be time.

  Though I know now that I’ll never have the chance to see Van out there in his element, this is how I will choose to remember him. I won’t think of him in the clinic office, but instead, I’ll imagine him on the lake with his fishing pole, battery packs slung over his shoulders as he waits for a nibble and then reels in a fish, throwing caution to the wind to enjoy a simple moment of pleasure.

  It has been eleven years since Nancy Andrews’s surgery and its aftermath, and while her delirium-inspired sketches continue to make their way through the world, she has moved on to other themes. She recently created a set of sculptures that she describes as “accidents”—unrecognizable bodies, strange and twisted. In a Web series titled The Strange Eyes of Dr. Myes, she tells the story of a scientist and researcher who tries to re-create the deep sense of connection to others that she felt during a near-death experience. She has also returned to making her own music these days and is learning the ukulele and tenor guitar.

  But the consequences of critical illness haven’t left her. Perhaps it was her time in the intensive care unit, perhaps it is having a genetic disorder that can cause her vessels to tear or her retinas to detach, but Nancy often finds herself c
onsidering her own mortality. She wonders, too, about the long-term effects of post-traumatic stress disorder. Noise and chaos spark an intense anxiety within her—is this because of the delirium she experienced while in the unit?

  She will never be entirely free of the hospital and the burdens of her diagnosis. During a recent phone call, she mentioned in passing that she needed to schedule her regular two-to-three-year follow-up with her Boston doctors. She worries less about this than she did when she was younger, but still, returning to the hospital reminds her of being delirious, terrified, and out of control. And yet, she will call and make the appointment. She will submit her body to the CT scanner and to whatever comes next. Then, hopefully, she will return home cleared for another few years. “It’s like going back to the belly of the beast,” she told me. “But you just have to keep facing it.”

  I continue to follow Ben Clancy’s progress intermittently through his mother’s Facebook updates. When I last spoke with Andrea, about six months had passed since I had observed Ben’s outpatient therapy and more than a year since the overdose. I was curious to hear how far he had come. He had recently struggled with pneumonia, I learned, and he wasn’t talking as much as he had been before that setback. His doctors had scheduled a CT scan of his head just to make sure nothing else was going on, and his therapy was on hold until they could get that done. With our earlier conversations in mind, I asked Andrea again what she thought about the future and how much progress she could hope for.

  She knows Ben won’t ever be the same as the son she had before the accident, but…how far will he come? She can’t let that line of thought consume her. For now, Ben has returned to his old habit of spending an hour each day with Reuters news online, and he seems engaged by that in the moment, though afterward he doesn’t remember what he read. Andrea found someone to play guitar with Ben each week, and although it’s more classic rock than the jazz Ben used to prefer, he still remembers his chords, and appears to enjoy the music. Not one to rest, Andrea has also been working on the possibility of a service dog to help Ben with his balance. And there is another summer around the bend, and an e-mail she just received from the Montessori school Ben attended when he was younger, asking if he might want to spend some time there. Maybe she and Ben could do work in the garden. So yes, Andrea wonders about the future, she said. “But it doesn’t matter today, does it?”

  Cindy Scribner hasn’t been hospitalized again. There are doctors’ appointments and medications and lab tests, but it has been three years since her transplant, and the fear that she is rejecting her new lungs has faded. Though her life has taken a different shape, she still misses her work as a nurse. She knows now that she’ll never be able to return to that job—her immune system is too fragile—but Cindy continues to hope she can find a different kind of work that helps pay the bills and feels meaningful. Until then, she keeps busy with her family. After all that has happened, the normalcy of these regular days is like a miracle.

  In the months after Eddie Beatrice got his transplant, the media was all over him with profiles in the local paper and TV stations. Most of the press was positive, or at least lightheartedly curious, but there were those who criticized him for taking his need into his own hands, promoting himself and in doing so “cutting the line.” This hurt him, because all he wanted was to be able to get back to the person he had been before the shoulder surgery, and Kelly gave him that chance by offering him a kidney on Facebook.

  Now the coverage has died down. And in many ways, Eddie is back on the path that was interrupted so many years ago by his surgery and kidney failure. His children have both graduated from college. His wife is “still beautiful inside and out.” Eddie isn’t sure how he would have survived it all without her. Work is going well—so well, in fact, that Eddie’s great performance recently won him and his wife a trip for two to Turks and Caicos. But in the background of it all, Eddie is “constantly and forever” heading to the hospital to get his labs checked and meet with doctors. His transplanted kidney took a back seat to a new health scare recently when testing revealed that he had prostate cancer. After a period of watching and waiting, and blood tests and biopsies, his doctors decided to remove the organ. Eddie was at home recovering after his prostate surgery when we last talked, and I was relieved to hear the good news that the cancer hadn’t spread.

  He and Kelly still keep in touch, and made sure to spend some time catching up during a recent trip Eddie and his wife took to California. As for the kidney, it’s doing well, allowing Eddie to continue with the work of living his life.

  Meghan and Myles had a great time in Mexico. But a few months after they returned home, Meghan got sick again. Sometimes she can feel it coming, and she knows she’ll end up in the hospital, tied to that intravenous line for antibiotics. But this time it surprised her. One day she was feeling strong enough to take a spin class, and the next she was in the ER with a drop in her lung function and plans for an admission. It was the start of the school year, and all she could think was that she’d left her students in the lurch. Her colleagues pitched in and everything worked out, but maybe this would be the catalyst for Meghan to start easing her family and friends into the idea that she’ll slow down and ultimately stop working one day. With the increasing amount of time she must spend on the task of staying as healthy as possible, she finds herself quite simply running out of hours, and she wants those in her life to be prepared so they don’t assume she’s on her deathbed when she does decide to leave her job.

  Saying the words aloud helps her, too. It doesn’t sound so bad. Maybe she’ll retire before she turns forty, and that will be okay. And she is realizing that it will be okay, too, if she and Myles don’t get pregnant, if they don’t adopt. When she’s healthy, it is so easy to imagine working for decades more and having a baby, but then she’s in the hospital again, and it feels improbable, even irresponsible, to consider having a child. Her medical needs require so much time. And what happens when, inevitably, she gets sick?

  So Meghan reminds herself that her life is good as it is. She gets to come home to Myles every night. They have a beautiful house, close family and friends, and Myles makes her laugh. They can plan great trips for as long as Meghan is able to take them. And they are busy. Meghan recently organized a spin class fundraiser for the CF Foundation, she is planning a vegetable garden, and she and Myles are hoping to get a new dog. “We have so many positive things,” Meghan told me. “If the family thing isn’t the direction for Myles and me, then, well, that’s going to have to be fine.”

  As for me, I have my transplant evaluation clinic and my rotations at Spaulding, but most of my time in the ICU takes place overnight. That’s just the way it is for me now, and I struggle with the lack of continuity inherent in caring for critically ill people only one night at a time, when the sun goes down. It’s an odd dynamic: twelve intense hours of life and death like a strange dream while the world is asleep, and then, in the morning, it is over, the decisions belong to someone else, and I emerge, tired and hungry. In a way, there is little time in all of this to think about the before and the after. Yet I try to bring some of what I’ve learned from the people in these pages into my daily work.

  We recently started a peer support group for ICU survivors and their families. We’ve met on a few Saturday mornings: an ICU social worker, a psychiatrist, another critical care physician, and me. Over pastries and coffee, I listen to men and women admit that even though their spouses are alive and home and they know they should be happy, they wake to the phantom sounds of hospital alarms or burst into tears without warning. Patients tell me how they still remember being tied down to a bed, pulling out intravenous lines, struggling to communicate. These stories no longer surprise me. But even within the familiar themes, there is what feels like an infinite variety, and I continue to learn.

  We’re still building our clinic. It’s small, but it is growing. Some of our patients tell us that they are doing “okay” as they slowly reenter their lives, an
d when they do, I try to remember to pause and to ask them about that word. The answers vary. For some, being okay means that their thinking is intact and that they are able to sleep comfortably, despite trach tubes or home ventilators or lists upon lists of medications. For others, it is being back at work or at the gym, strong enough to care for their families.

  There are also patients who tell us that though they’re back home, they don’t have the mental fortitude to return to their prior jobs. They startle easily during the day, or they wake in the middle of the night in a sweat. The ICU was hell, and they have emerged only to find that they are still in limbo and they don’t recognize themselves any longer. We tell them they are not crazy. We give them a diagnosis—post–intensive care syndrome—and we are honest about the realities when we say that we might not be able to fix it, but that we can listen.

  I accompanied one woman back upstairs to the intensive care unit where she’d spent nearly two weeks intubated and sedated. She did not remember the place but she knew her room number, so we walked slowly into the unit and stood in front of the room that had been hers. The curtain was closed. There was a patient in the bed. I watched her face as she waited for a flash of familiarity that did not come. “Are you all right?” I asked. I worried she would feel let down. She didn’t recognize any of the doctors or nurses, and no one recognized her. There was no applause. It wasn’t the triumphant return I had imagined. But she wasn’t disappointed, she told me. Instead, she was relieved. This was just a place. I tried to see it through her eyes—smaller than she’d assumed, less threatening, too. She could enter, this time by choice. And then she could leave.