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  Dedicated to

  Randy

  Introduction

  A Chance to Die

  Medicine can be a magical lens through which to view the human body. Focus its light on an unsorted pile of symptoms and it will converge them neatly into a diagnosis. A swollen, red “strawberry” tongue in a feverish child will lead the doctor to examine the heart and affirm a diagnosis of vasculitis. A man’s burning stomach pain transforms into gastritis, which has both a cause and a cure, whereas his nonspecific pain had neither.

  Medicine does this by asking questions and listening for not just what is said, but what may be true. If empathy is the ability to take the perspective of another and feel with them, then, at its best, the practice of medicine is a focused, scientific form of empathy. Truly caring for a patient necessitates traversing borders and inhabiting the view of another with the humility of a visitor who knows he or she can choose to look away. They each possess the power to heal.

  The first time I viewed the world through medicine’s transformative lens I was five years old, listening as my mother offered a seemingly vague description to the pediatrician by phone. My brother was leaning forward in the crib, onto his hands, drooling, and seemed to be gulping the air rather than breathing. The doctor understood this to be epiglottitis, an often fatal swelling of the airway. He instructed her with a calm but firm urgency to bring him immediately to the emergency room, where he would be waiting. That ability to translate symptoms into diagnoses and treatments, the power to save lives through knowledge and listening, struck me as the most beautiful job description I could imagine.

  Attending medical school was like entering a secret society, complete with its own language, uniforms, and societal norms. We learned to translate the genetic code and sequence genes that produced proteins that made up organs. We were granted cadavers to dissect and study, each structure’s name rooted in ancient Latin or Greek. We spent a year immersed in the divine elegance of the human body, so that in our second year we could learn to recognize pathology. We were instructed by professors who spoke of the innate intelligence of disease. Parasites that exploited their host, small changes in genes that resulted in defective hearts, and endlessly replicating cancer cells. By learning the pathway to disease, we were taught, we could unlock cures. The knowledge was intoxicating. I followed the vectored curriculum, believing I would emerge transformed and able to heal.

  I couldn’t have imagined the circuitous form my training would actually take. The forward progression through residency and fellowship was nothing more than a comfortable lie my body would ultimately dismantle. My body somehow understanding that despite completing my training, despite being surrounded by every form and severity of disease, I had yet to learn what it meant to be sick. I would experience an illness—followed by a long, painful recovery—that took me apart, piece by piece, and put me back together in a conformation so different I questioned if I still existed at all.

  The wish for the cure is seductive; it captivates and charms. Devastating illness, despite its ability to utterly transform, is not revered in the same way. Illness is viewed as an aberrant state. It is a town we drive through on a journey home, but not a place to stop and linger. We pass through with gritted teeth, as if it were a storm, with no regard for the illuminating beauty of the lightning as it strikes. But those shattering moments that break our bodies also allow us access to wisdom that is normally hidden, except in times of utter darkness.

  From my new vantage point in an ICU bed, I would begin to sense a dark hole at the center of a flurry of what was otherwise highly proficient, astoundingly skillful care. I couldn’t name it at first. I would have glimpses of clarity, only to have it recede out of focus. I had to train myself to see it, like negative space on a canvas. It took years of being a patient to understand that though the healing potential of knowledge is magical, it is also a lie.

  Medicine cannot heal in a vacuum; it requires connection.

  As a patient, it’s upending to be confronted with the actual fragility of everything you once believed to be a constant. To inhabit that vulnerable space, and to have no one around you who is open to discussion of the devastation is patently surreal. We all desire to be seen, to be known, to share our experiences and feel heard. To have our life events given context and meaning, redirected back to us in a way that we can understand and integrate into our understanding of who we believe ourselves to be. This need is more acute in times of sickness. When organs and limbs function without fail, we can indulge notions of self-reliance and agency. We believe ourselves to be the narrators of our own lives. When we are sick, we are humbled by our dependency on others, the loss of control, the uncertainty of the ending. This change opens channels for communication we are hardwired not to tune into during the monotonous routines and spaces of normal life.

  Recognizing those open channels and fostering connection in full view of the knowledge is what heals. Making the choice to be present for someone else’s suffering requires a kind of anticipatory resolve. Because it does get hard, sometimes even unbearably so. The choice to be present means deciding at the outset that you will be there for the duration. That premeditated sort of intentionality may not resonate with the kind of effortless empathy we’d imagined, until we remind ourselves that all forms of love require work and a fierce commitment.

  Had our training somehow taught us to avoid these channels? Did we know what to do when we recognized them?

  I work at a large urban hospital, in the center of a busy and diverse city. We are sent patients, by helicopter and ambulance, who have run out of options elsewhere. The kind of clinical excellence, determination, and teamwork necessary to care for these uniquely complex patients far surpasses what I’ve experienced in other hospitals during medical school or residency training. I have the great privilege of working at an amazing institution. The shared purpose and the pride that comes from doing hard work well is one of the reasons I chose to stay on after my fellowship training.

  The hard times, the times when I knew we missed the mark, can almost always be understood and rationalized. Health care is exceedingly complex. Errors will inevitably occur, at even the best hospitals. What seems different to me is our transparent willingness to acknowledge that we are a learning organization. This orientation causes us to look honestly at each lapse, whether it be in communication or drug delivery. Acknowledge it, determine the point the process broke down, and address it. Perhaps it is because of our awareness that all systems attempting remarkable things will at times fail that we’ve learned to cultivate resilience. We never allow a failure, however small, to be the end of the story. It’s always the beginning of a better way of being.

  It’s how we heal.

  I was recently rounding in the same ICU that I had once inhabited as a critically ill patient. I stood at the head of the team, as their attending physician, with a group of eager medical residents presenting the critically ill patients in sequenc
e. The patient we were discussing was on the waiting list for a lung transplant and had been waiting in the same ICU room for months. I had first met her years earlier, when she was transferred into our hospital for evaluation of a leaky heart valve.

  When the resident completed his presentation, the ICU nurse added her report on the events of the night. She had cared for the patient many times, and the longitudinal relationship provided a depth of understanding the resident couldn’t hope to match. She wore seafoam green scrubs that bore her handwriting near the knee, a potassium value she’d jotted down when the lab called and she couldn’t quickly find paper. Rounds required standing in place and so she fidgeted, a substitute for the constant movement she was more adapted to. Her brown hair was pulled into a ponytail, and she spoke with purposeful brevity, not referring to her notes.

  “She had a setback overnight, and she’s on high-flow oxygen now, fifteen liters,” she began. “She’s spent the morning listening to recorded sermons by her pastor. She’s different today. If you ask me I think she is really scared.”

  The resident frowned, having just reported that she was stable clinically. He appeared tired, the whites of his eyes fissured by fine red cracks. There was a spot of hair at the crown that was sticking straight up, the only visible evidence that he had laid down at some point in the evening. It reminded me of my son’s cowlick and I had to resist my maternal urge to smooth it down. He was wearing a hooded sweatshirt under his white coat. Residents often add this layer, sometime around hour twenty of their assigned thirty-hour call. Something about being awake for so many hours straight dysregulates the hormones that control body temperature, and we were all always cold on post-call mornings.

  I had been through setbacks with this patient before; many of us had. They were usually a sign of worsening heart failure, and though she had always managed to recover, they took a severe toll on her emotionally. It was as if her body was insisting that she acknowledge the possibility of her death. Her resource in combating fear was hope and prayer, and she immersed herself in both.

  “I asked her about her breathing, but I didn’t get that,” he said, apologetically.

  “Every listener hears a different story,” I reminded him. “The fact that she shares something different with her nurse than what she tells you or me is to be expected,” I explained. I knew she had different answers for different people. We each had different relationships with her. “It doesn’t devalue what she told you, it’s just different,” I added.

  I saw a blank index card in his pocket.

  “Did she give that to you?” I asked.

  “Yes, she wants me to write a message of hope for her wall,” he said, sounding defeated. “To be honest, I’m uncomfortable writing anything because I think she is going to die before she gets a transplant. Transplant says she has a lot of antibodies and it’s going to be hard to find a matching donor.” He paused. “It seems like I’d be lying if I wrote something encouraging.”

  I saw in his expression the same discomfort I often felt in the face of uncertainty. I saw the disillusioned fatigue, a by-product of the effort expended wrestling the facts to the ground so that we could stare at them and more honestly represent them. Not just to ourselves, but to our patients. Our feeble attempts to understand how to allow for optimism, when the truth seemed intent on blocking out the sun. It was so hard to palpate the borders of authentic hope, to know where falseness began.

  “It’s hard, right? When we don’t know,” I said, lacking articulate words.

  “Listen, I get it,” I continued. “You don’t want to provide false hope. It’s hard. What if we took our lead from her? What do you think she needs from us?”

  “We have to coordinate her care so that she is ready when an organ becomes available, make sure the lab work is ordered and she has the IV access anesthesia needs for when it’s time to go to the operating room, make sure her fluid balance in her body stays stable, and titrate her medications to ensure that,” a resident answered.

  I nodded. “That’s all true, and we absolutely have to do all of that. But, is that what she is telling us she needs in this moment?” I asked.

  They quietly shrugged, in a way that suggested they were doing what they knew how to do and were at least somewhat exhausted by it.

  “Let’s see what other people have written,” I suggested.

  We entered her room, leaving the lights off. She was sleeping, her body attempting to recover from the terrible night. Even when she was awake, her lung disease was so severe that she only managed to speak in small, choppy fragments, one or two words at a time. I had visited with her earlier in the morning, and had shared her fear that her difficulty breathing was escalating. Even sitting felt like a struggle lately. She was spending more of her day in prayer. Sitting quietly with her, I knew she was days away from death. I wanted to talk to her about that imposing reality. The “what-ifs” that were seemingly more likely each day than her undergoing a successful transplant. I thought it was time. She met my eyes and smiled. She expressed her disappointment that the new residents this month hadn’t completed the cards. “I just want to know that they are hoping along with me,” she said. I looked down, breaking our gaze and feeling guilty for anticipating her death.

  She had glossy, framed, full-color pictures of her standing proudly with her family, personalizing the room. They were the first things that confronted the team, forcing everyone to acknowledge how she identified herself. This is me, not what you see in the bed, but this, they seemed to say.

  I turned to the dark blue wall, peppered with white cards filled with messages of encouragement and read them quietly. “I am in awe of your resolve, your strength and your faith. Thank you for allowing me to be a part of this journey with you.”

  “You are the bravest person I know,” said another.

  “I have hope that I will see you on the other side of this, when you can breathe freely and be well,” read another.

  We walked out of the room and tried to process what we had read. Was it appropriate and just to provide hopeful support to someone on the cusp of death? Was it rational to prioritize hope, even as we struggled to provide the highly technical medical care she needed to survive? I believed it was. The cards gave her tangible evidence that each of us were going to acknowledge the primacy of her version of her patient story, that we saw her suffering and shared her fear. By writing something hopeful we were allowing ourselves to imagine with her the range of the possible: not just the likely outcomes but the expansively possible.

  One resident began to formulate a thought, about how completing the card was essentially one side of a transactional exchange. “I see, so we give her something she needs, and in turn—”

  He stopped himself short and the post-call resident began speaking.

  “No, she needs us to see her, even as sick as she is, not just to see her as sick, but as being healed.” His simple description of how our attending to her allowed us to better represent her was beautiful. He went on. “Those cards make the hope visible.”

  “Wow.” I was stunned by his statement. “Think about that. If in the end, that’s what we do today, somehow manage to make hope visible…” I couldn’t quite complete my thought.

  “That would be success,” the nurse added, nodding.

  “Well, that and she gets a transplant,” a resident added with an edge of apathy. The others laughed quickly, like childish conspirators. I understood the discomfort they were feeling.

  I knew we valued the cure, the goal, the win. We were far less comfortable in the gray, shadowed area of suffering. We excelled at providing complex, precision medicine in a way that appeared almost effortless, yet at times struggled clumsily when it came to empathy. I recalled a time when I had responded to a tearful patient’s question, “But how could this have happened?” with explanations of the complex interplay between genetics and environment, behaviors and predispositions that had led to the terminal diagnosis. I had been trained to believe th
at all questions were a request for data. Because of this orientation, I recognized neither the fear nor the existential nature of the question. It would be years before I understood the subtext behind the questions. And even then, once I recognized them as an opportunity to connect, I still didn’t believe in the healing power of just being present to bear witness to someone’s struggle. I didn’t value the intangible, the moments of shared understanding.

  I had distanced myself from my patients the way I had been instructed to do in training, in the same way the team was doing now. I had subscribed to the paradigm of medicine set forth by my mentors, one that advised me to cultivate space, to be sparing of myself. I was taught that connection begets loss, which in turn begets disillusionment and burnout. As if I were made of some quantifiable measure of stuff that once given away would leave me depleted. I don’t know if I fully believed in that model, but until my own experience as a patient, I didn’t allow myself to envision an alternative where I was unguarded, receptive and freely giving of myself. I didn’t understand that open channels would replenish my supply of self. That there was reciprocity in empathy.

  Luckily, I had the chance to die.

  One

  Bled White

  Death is the dark backing that a mirror needs

  if we are to see anything.

  —SAUL BELLOW

  All pain becomes abstract in retrospect. It is a merciful truth that no one is capable of summoning to the surface the actual intensity of pain endured. As I sit now, reflecting on the pain that first brought me to the hospital, I can sketch an outline, delineate the general size and shape, but it’s become separate from me. A kind of sensory satiation occurs, in much the same way repeating a word endlessly causes it to lose its meaning. I remember knowing the pain was not compatible with life. I remember thinking I knew absolutely nothing of the meaning of the word pain before that moment and that anything I had labeled as pain prior to that was nothing more than a shadow of a construct called pain. The pain that tore into me was excruciating and unsustainable.