Faced with the fear of a massive surgery, Nancy turned to art. She shot photos of herself on the way down the hall to the OR and then again in the mirror after the surgery and throughout her convalescence. Recovery was rough, but she was young and healthy, and slowly regained the strength to return to the eclectic fun of her everyday life. She finished college, using the surgical photos as her senior project. Sure, she had a genetic condition that wasn’t going away, and there was the looming threat of another surgery, and when she went in to see her doctors they paraded her in front of the medical students like some kind of sideshow attraction, but in her day-to-day, Nancy was okay. She was an artist in her twenties, playing the violin and singing in an avant-garde performance group. She found a day job working as a video producer on a hospital television channel, where she created programs like hospital bingo for sick children. As the years went by, she developed a serious interest in experimental film, which led her from Baltimore to Chicago to pursue an advanced degree, and then on to a job as an art professor in coastal Maine. Two decades passed. All the while, she returned annually to Hopkins to monitor the rest of her aorta, which was slowly but certainly growing in size. She wore a medical alert bracelet reading “At risk for aortic dissection.” The vessel would have to be repaired—a complex surgery that would put Nancy at risk for paralysis, kidney failure, even death—and it wasn’t a question of if but when.
Nancy asked her doctors what it would feel like if the wall in her aorta tore before it came time to repair. Depending on where the aorta dissects, this is a surgical emergency that, untreated, can quickly lead to death. Nancy learned that her impending death would feel like intense lower back pain. She filed this information away in the back of her mind, where it stayed until one autumn morning in 2005.
Nancy was waiting at her local clinic for a regular blood draw, a necessity since she was on blood thinners to prevent clots in her artificial aortic valve, when her back started to bother her. At first, she thought it might be the plastic chair she’d been sitting in. She moved around, stood up, and sat back down again, but the pain didn’t subside. There was something different about this pain, a gripping quality that crept into the margins of her consciousness and didn’t let up. It intensified. “I think I’m having an aortic dissection,” she remembers telling the clerk at the front desk of the clinic waiting room. “Could you call an ambulance?”
From there on, her memories are vague. Nancy remembers collapsing. She remembers an ambulance racing from the little town clinic to the nearest regional hospital in Bangor, Maine, and the helicopter that brought her to Brigham and Women’s Hospital in Boston. She remembers that the medical crew in the helicopter put a headset on her and told her that she could use it to communicate, like Madonna in concert. In the operating room, surgeons made a vertical incision from below her navel up to her chest, under her breast, and around her back so they could begin work on her aorta. By the time she emerged, most of the ruptured vessel had been replaced with polyester. She had lived.
With sedatives running through her veins, Nancy’s body was quiet. But her mind raced, creating explanations for the inexplicable. She was at the bottom of a boat or trapped in a deep well. Seven-eighths of her brain had been removed. Hospital staff wanted to kill her. When her team of doctors came in each morning to ask her the basic orientation questions—her name, the date, where she was—she believed the questions were a test and she would be liberated from her imprisonment if she passed. On other days, she had uncovered a porn ring that took pictures of hospitalized patients and put them on the Internet. The sound of a drawer shutting was a person being shot in the hallway. The images were vivid, themes of traveling through the desert, of struggling to survive in Arctic landscapes. Her family members sat at her bedside, unaware of the depth of her paranoid confusion. But as Nancy slowly became strong enough to talk and write, pieces of the complicated nightmare inside her mind began to surface.
When friends visited, she asked them to wipe the insects off their faces. She scrawled desperate messages to tell someone, anyone, that a part of her brain had been cut away. Her partner asked the doctors and nurses over and over again, “What’s wrong with her? Is this normal?” It was disconcerting. She knew that Nancy had survived a physically grueling surgery and could see that her chest was healing, but what was going on with her mind? The doctors didn’t seem to think much of it. “Oh yeah, that happens,” they responded, as though it had no real import. Her medical team seemed confident that by the time she made it home, her mind would have returned to normal.
But even when the delirium seemed to have passed and Nancy was strong enough to leave the hospital (first for a rehabilitation facility and then for her home on the Maine coast), she wasn’t the same. At rehab in Bangor, she heard a helicopter and found herself mysteriously brought to tears. Back at home, one night friends came over for dinner with their baby. The parents made airplane noises as they brought spoonfuls of food to the child’s mouth, and something about the seemingly innocuous activity led Nancy to panic. “My every instinct was to hit the deck,” she remembered, only later connecting the dots between her reaction and her medical helicopter trip from Maine to Boston. “I wanted to cower.” At a documentary film seminar program, she found herself entirely confused by the language of film critique that used to come easily to her. Her mind felt muddy. She couldn’t shake the belief that something else was wrong—something beyond the expected challenges of her physical recovery. A smell would suddenly conjure up images of torture, of people tied to beds, of blood and insects and suffering. It was as though she were haunted. “It was shocking, and I didn’t know what was happening,” she told me. The doctors who had operated on her aorta had been thrilled just to know that she was alive. But she was now forty-four years old. As grateful as she was to them, she couldn’t stand to think that she would live out her remaining decades this way, scared and confused, broken.
At an appointment with her long-term primary care doctor a few months after her discharge from the hospital, Nancy decided to open up about her suffering. She was vague, uncertain how to explain what was going on. She told him a few things, like the way a smell could suddenly cause her to panic. As he listened to his patient, the former military man recognized a pattern. This sounded like post-traumatic stress disorder, but instead of having flashbacks to real traumatic events, Nancy was having flashbacks to hallucinatory experiences she had believed were real while she was delirious in the hospital. Of course, Nancy knew about PTSD. She knew that veterans of war could relive their traumas. But it had never occurred to her that this was something that could afflict an art professor who’d recently undergone a long and complicated hospital course. When she searched online to learn more, she mainly found information about PTSD among those who’d been in the military. Yet the more she considered it, the more sense the diagnosis made. It brought together some of the disparate pieces of her experience and gave them a name. It even gave her hope for a treatment plan. Soon after, eager to find a way to reenter her life, Nancy started seeing a therapist to begin an intensive program that would last for years.
One winter evening nearly a decade later, I was running late. It had been a long day in the intensive care unit, where I was on as the critical care fellow. We’d started the morning on time, but then a sick new admission had arrived in the middle of rounds with barely any medical records. We had to figure out who she was and why she had been airlifted to us from a hospital on Cape Cod, and then we still had to see the rest of the patients to set up their plans for the day. By the time we finished rounds, it was nearly 2 p.m. and we were ravenous. I left the residents to the now-cold pizza that had been waiting for them in their workroom while I went off to answer a page. It was the nurse manager, calling to alert us that there were two patients in the ER who had already been intubated and would definitely need ICU beds. She talked quickly. We would have to scramble to make room in the unit by sending our least sick patients out to the general medical floor
. I interrupted the residents with the news, which sent the interns scurrying about for the next few hours, hastily composing transfer summaries for delirious patients who had been in the unit for days but had suddenly been deemed healthy enough to leave because of the bed crunch. I didn’t even know what time it was until I saw the night shift nurses marching in, wearing scrubs and rain jackets (it was raining outside? Without any windows in the ICU, I had no idea), and toting the bags of food that would get them through till morning. I glanced at my watch. It was nearly 7 p.m., and I was going to be late for dinner.
Maybe I should cancel. I imagined going home, taking a shower, watching Netflix, and dining on my favorite weekday combination of cereal and wine. That was all I, achingly tired from a stretch of twelve-hour days in the unit, wanted to do. I definitely didn’t want to walk through the dark, damp cold of a Boston winter to have dinner with a stranger. Besides, I wasn’t even sure why I was meeting Nancy Andrews in the first place. It had happened on a whim. I was skimming through recent critical care papers one night, searching for something new to talk about in our daily morning lecture, when I stumbled upon an article describing the problems people face after critical illness. Though I didn’t know it at the time, momentum had been building behind research showing that ICU survivors, even the ones who had made it home and appeared unimpaired, frequently struggled with psychological and cognitive issues they hadn’t suffered before their intensive care hospitalization. Some developed PTSD, with flashbacks to horrifying delirium-induced delusions of severed limbs, sexual trauma, drowning, and torture. Others were anxious, depressed. Young people were left with memory problems that were similar to mild dementia. This constellation of problems—PTSD, depression, and cognitive dysfunction among them—even had a name: post–intensive care syndrome. Although doctors didn’t know precisely who was at greatest risk, they did know that those who were delirious while critically ill, which had long struck me as an entirely benign condition, seemed more likely to develop these problems than those whose minds remained clear.
This was all news to me. When I was an intern, mortality was the only ICU outcome generally taught to doctors in training. The term “post–intensive care syndrome,” or PICS, hadn’t even been coined until 2010, two years after my internship ended. So while I’d learned the intricacies of ventilator settings in my intensive care rotations, we had never talked about the dysfunction that might come afterward. Reading about PICS that night years later, I still wasn’t quite sure what, if anything, to do with this new knowledge. I had already come face-to-face with chronic critical illness, the ventilator-dependent survivors who had first forced me to question the “success” paradigm of our intensive care interventions. Now it seemed that even our best outcomes might lead to unanticipated and perhaps unavoidable harm. Knowing that I would return to the unit the next morning, I didn’t want to pause too long to consider those facts. So I might have simply moved on to the next set of articles, hoping for something more sterile and less human, like antibiotics or ventilators, had I not come across a collection of haunting black-and-white sketches. In one, disembodied heads circled a banner that read “I Like Morphine.” In another, a creature that appeared to be half human, half bird, with a scar along its chest, floated above a sketch of a hospital bed. They were fascinating, simple but captivating windows into the chaos of a delirious mind. What grabbed me even more was that the artist, a woman who’d survived an aortic dissection, had been treated at my own hospital.
When Nancy Andrews had first returned home, she had been too weak to hold her camera. She wasn’t certain she would ever be able, or even want, to return to making films. But she could hold a pencil. Slowly, starting with squiggles, which were all that she could manage to create from her bed, Nancy had started to draw. And as her strength improved—and she began to feel motivated to share her experience—she kept drawing. She built a website, too, with links to her sketches and to articles about post-traumatic stress after critical illness and the lasting effects of delirium, and left an invitation for visitors to share their own stories or to contact her. Entranced by her artwork, I sent her a message. We made plans to meet for dinner at a restaurant near the hospital the next time Nancy came down to Boston.
By the time I made it to the Thai spot we’d picked, Nancy was already seated and waiting for me. I didn’t know quite what I thought I might find, but it wasn’t this thoughtful, articulate woman in thick-rimmed glasses, a patterned blazer, jeans, and funky sneakers. Perhaps I was surprised that she didn’t look more wounded. Though I had taken care of countless patients who would become ICU survivors, and by that point had done my fair share of reading about post–intensive care syndrome, Nancy was the first to talk with me about that experience. As she told her story, I felt that tingle you get when you learn something new that might change you; I took notes furiously so I wouldn’t miss a thing. I had no idea how many people I’d triumphantly helped carry back from the brink of death only to return them to their lives riddled with the invisible wounds that were now called PICS. We would declare them better, we would say they were healed enough to leave the unit, and then their outpatient doctors would applaud their progress in follow-up clinics. “You look great!” they’d say. In fact, I’d spoken those overly bright words to the patients we were hastily moving out of the unit earlier that same evening. But what we didn’t acknowledge was that some of these ICU survivors wouldn’t ever be able to get back to work, and some of their families would break under the struggle of sickness and caregiving and the stress of expanding piles of medical bills. I wondered how many of them would stay silent, afraid of being seen as weak or ungrateful or even crazy.
Nancy described herself to me as the “luckiest unlucky person.” She was lucky to have had her eyes examined that day at Hopkins. She was lucky that her aorta tore in a clinic waiting room and that she knew the signs. She was lucky that she had a doctor who suspected she might have PTSD though it wasn’t generally recognized as a complication of critical illness at the time. Yet when she shared her story with her other doctors in the years directly after her surgery, Nancy came up against a gap between common medical knowledge and her reality. At an early follow-up with her surgeon, she mentioned that she had been diagnosed with PTSD. “PTS-what?” he exclaimed, genuinely confused. With her scars hidden under her shirt, it was hard for Nancy to explain that she wasn’t the same. “People couldn’t see, really, what was wrong,” she told me. “They could see when I was still using a cane. But people can’t see the psychological scars.” And perhaps, in a way, they didn’t want to. “Really, the narrative people want to hear is that I’m all better, happy to be alive, and thankful,” she explained. “No one wants to hear the dark side of it. But those things coexist.”
As Nancy talked, I couldn’t help but flash back to my current patients, intubated and sedated, anxious families at the bedside. I wondered if I should stop by each room the next morning after rounds and relay all I had learned, so that they would not be surprised when their recoveries didn’t meet their hopeful expectations. And yet it seemed uncomfortable, and in a way thoughtless, to warn a husband that his wife might be forgetful or anxious or depressed just as she emerged from days on a ventilator. What was he to do with that information? Critical care had created a new syndrome, but it didn’t come with any simple solution. So at home that night, back in the unit the next day, and in the months to come, I was quiet, uncertain how I might integrate this perspective into the daily realities of my life in the ICU.
It was night in the intensive care unit, and I was a few hours into an overnight shift. One woman on my patient list had been admitted with septic shock from pneumonia. She’d been intubated and was dangerously sick at first, but a week had passed, and now her blood pressure was holding steady and she was close to breathing on her own. I’d been called to her room for something minor, and when I entered, I saw the woman’s daughter sitting at her bedside. She looked exhausted, and I wondered when she’d last allowed herse
lf a full night’s sleep.
I introduced myself as the doctor working overnight and told her that I was just going to take a look at the settings on her mother’s ventilator. I said all this to the patient, too, although I did not know how much she would remember and carry with her, especially as her eyes were closed and sedating and pain-relieving medication flowed into her veins. I explained to her why I was there. I told her she was doing better, and I hoped that in the next day or two she would be able to breathe without the tube. When I finished, I looked toward her daughter, who had of course been listening. “I was so scared. I thought I was going to lose her. But she’s going to be okay?” she said, her voice inflecting up at the end into a question.
There it was. I had heard that question so many times, ending with that same word, “okay.” I had said the same thing myself. In a way, it was an easy kind of shorthand. And yet I had rarely paused to ask a key question of my own in response: What does it actually mean to be okay? The more I looked, the more complicated that answer had become. Since meeting Nancy Andrews, I’d started a new clinic at my hospital specifically for post-ICU patients. Though the idea was attractive, the reality had been slow going. Simply scheduling people for a clinic was harder than I had assumed. Even those who ultimately made it home often did so after multiple transitions, weeks to months winding through rehabs and nursing facilities. And these were people with terrifying memories of what had happened to them in the hospital, people who might not be willing to return for yet another subspecialist appointment or who were too weak to travel even if they had wanted to. Others might be cognitively impaired, with memory deficits that left them unable to remember the timing of the appointment or why they would even come to our clinic in the first place.
You Can Stop Humming Now Page 8
