In Shock Read online

  “Show me again where it’s broken?” he asked.

  “See that line on the X-ray? Seeing that very fine shadow is how the doctor knew there was a fracture. It was hard to tell from the outside.” I acknowledged my own blind spot. “We had to look deep inside to see the broken spot. Once we knew it was broken, healing could begin. If we hadn’t done that, it wouldn’t have healed properly.”

  His pediatrician looked at me sideways, clearly understanding I was no longer talking about his fracture.

  I wanted him to understand the truth as I believed it. While I had failed to know that he had broken his arm, there was no shame in it being broken. It is possible to be both broken and incredibly strong. We can be wounded and in that space find more cohesion and wholeness than we knew possible. But only if we are willing to acknowledge and confront the cracks.

  “Cool,” he said excitedly. “Will it be as strong as Darth Vader’s robot arm?”

  The pediatrician saved me from answering by going through discharge instructions as he demonstrated how to connect the sling.

  I looked at my son, admiring his tough-looking cast, and wondered what lesson he would take away from all of this. So much insight had come to me through my illness. It’s impossible to think of who I would have been without that education. In fact, it’s with a kind of tortured agony that I look back on our graduation from medical school, the fact that we thought it represented some culmination of knowledge, some imagined completion of training. For a time, we indulged the notion of ourselves as protectors perched atop a cliff. We were so arrogantly confident, so sure we were going to change the world. We had no understanding of the nuances of medicine, the meaning of suffering or the comfort we’d have to seek in the shadows of spaces between truths. We had no idea how much we still needed to sit in contemplation of the abyss. How intimately we had to know the darkness our patients faced before we could ever hope to partner with them. How much we needed each other.

  We were not well prepared to be physicians to our patients.

  Perhaps it speaks poorly of me that I needed to become a patient to see cracks in our façade. Did I not have enough empathy or perspective to understand the magnitude of the suffering that was all around me until it affected me directly? It’s possible. But that doesn’t resonate with who I understand myself to be. Closer to the truth is that I’m not entirely to blame. I came to medicine with an open heart, and somewhere during my training I was taught to wall it off. We all were. We were implicitly and explicitly instructed on the absolute necessity of partitions, measured distance and aequanimitas.

  We were taught not only that it would save us, but that if we didn’t somehow find a way to do it, we would kill those we were put there to protect. Our feelings were a direct threat to our patients. It was impossible to evaluate, diagnose and treat patients if we felt something as they decompensated in front of us, struggled with cancer diagnoses in our office, and lost their dignity to disease.

  It was a lie.

  It is entirely possible to feel someone’s pain, acknowledge their suffering, hold it in our hands and support them with our presence without depleting ourselves, without clouding our judgment. But only if we are honest about our own feelings. Physicians are prone to all the same human emotions of pride and guilt and denial and shame that distort our reason. We are just trained to believe we can surmount them. Emotions tended to can be claimed. Those we deny will always float. Allowing space for our feelings when we’ve been trained to deny them is not selfish, it’s necessary, both for ourselves and for our patients.

  When chaos and uncertainty swirl around us, and the darkness envelops us, having someone by our side who has seen the darkness before, who can map our path toward the light, who can be our eyes as we fumble in the dark, that person is a gift. When we allow our human channels to remain open, we better understand emotion because we’ve bravely confronted our own. Only then we can see where we are needed and the spaces we must move in to fill. Only then can we can help each other pass through the storm intact. Only then can we understand the value of our presence during the storm.

  When people talk about an illness or a terminal diagnosis as being a gift, it’s easy to dismiss them as naïve idealists intent on finding the bright spot in what is an obvious cavern of hopelessness. The notion itself is a paradox. And as with most paradoxes they are difficult for our minds to make them fit neatly together. We try, and fail, so we ricochet back and forth between the poles, wanting to choose between this one or that one. Is this news as horrible as it seems, or is there more? Could there be a larger, more meaningful explanation that has yet to surface? We might patiently hold each possibility in contemplation and attempt to assess if one is a better fit. We might push them toward each other, willing them both to be true despite their discordance, and becoming frustrated when they just won’t approximate neatly. We might try to chip away at one to see if the edges will sit more comfortably with the other. Perhaps we try to convince ourselves that an immeasurable amount of value will eventually come out of a finite amount of suffering. We find ourselves unconvinced. We are, it seems, just uncomfortable with contradictory truths. That inherent discomfort forces us to devalue one position or the other.

  I know I resisted silver linings. They felt like clumsy attempts to dismiss my suffering and force me to focus in the direction of some imagined grace. I lost a baby that was very much wanted, as well as any semblance of health for nearly eight years. I couldn’t know then the purpose and direction my illness would grant me. That my loss would prevent other losses, and though no one would ever know that baby or who she would become, that I would learn even from her absence. Others would learn from what happened as well. Even in the dark void that constituted her life, there was light, a purpose. My experience of her loss opened the lid on a vast network of connectedness and healing that was completely hidden from view. I had to accept that my body and her body, through their weaknesses and susceptibilities, could actually provide access to truths my rational mind would otherwise reject.

  I knew it was neither practical nor at all desirable for everyone to have the kind of experience I had been through, and yet, like some religious pilgrim, I wanted everyone to see what I had seen and to know what I knew to be true. When I rounded in the ICU, I shared my experience as a patient with my teams as a way of orienting them to my expectations for empathy and their sacred responsibility to their patients. I enlisted like-minded colleagues to run our workshops on communication skills training. I insisted, always, that we could be better. I took every opportunity to lecture on the importance of empathy. So when our hospital asked me to present the “patient perspective” of septic shock at our regional World Sepsis Day Conference, I accepted. The meeting we were hosting was meant to increase recognition of the disease as well as the toll it took on our patients. As I prepared slides for my presentation, I thought about the lessons I had learned as a patient and what I hoped to communicate to the audience.

  We were a hospital that understood sepsis. Much of the research on the optimal care of septic patients had been conducted in our hospital emergency department. Dr. Emanuel (Manny) Rivers and his colleagues had redefined the management of septic patients and had unquestionably improved outcomes by sharing their vision of early, goal-directed therapy. He sat in the audience along with physicians who had operated on me, drained fluid off my lungs and watched me die in their operating room. There was no question: it was through their efforts and teams of others that I was alive and standing before them, able to tell my story. Despite my immense gratitude for their efforts, I found I didn’t believe that their talent, dedication and clinical success was in any way the whole story. The story was in the darkness.

  I presented my hospitalizations, laden with successful clinical outcomes, in sequence. The terrible hemorrhagic shock, the loss of the baby, the suicidal spiral of my blood unable to clot from the hypothermia, the massive transfusions, the kidney and liver failure, the ventilator dependence, the s
troke, the tumors, the embolization and resections, the sepsis. I interspersed the heroic clinical narrative with slides that showed the words I heard, as a patient, at each step of the way. White words on a black background, projected into a silent auditorium.

  Can you show me where you see that?

  She’s circling the drain.

  She’s been trying to die on us.

  That was a really bad night for me.

  Your kidneys aren’t cooperating.

  It wasn’t my call.

  You should hold the baby. I don’t mean to get graphic, but after a few days in the morgue their skin starts to break down.

  At least you didn’t die.

  How much pain medication do you take at home?

  Are you sure your pain is an 8? I just gave you morphine an hour ago.

  Maybe you’re just anxious.

  There I was, onstage, representing what I was—a visible, tangible post-sepsis success story, one that was disfigured by all the ways we fail our patients on a daily basis. Two seemingly contradictory truths. And as we revisited my hospital course together, the auditorium gasped in disbelief in unison, understanding how we failed. How we do so many impossible things, so perfectly right, that it can sometimes seem effortless. How we succeed only to fail in the smallest, simplest of ways. How we damage our patients and wreck ourselves in the process. How we didn’t know how to reorient ourselves to face the same direction as our patients. How we didn’t know how to be present with emotion, be it our own emotions or those of our patients. In that moment I could see we all wanted to do better.

  I knew that together, we could do better.

  Sometimes when you bring a problem into the light, you find the answers are different than you expected, that indeed the problem itself is different than you had believed it to be. What you had thought was the problem was just an indication of a deeper, more amorphous issue. Amorphous and yet so tenacious it clings to you, grows into you until it’s no longer clear where it ends and where you begin. You find you can’t peel it off without fundamentally changing each of your respective structures. I was still taking those first tenuous steps, trying to truly see and acknowledge the giant, daunting, ingrained nature of the problem. Trying to understand the culture that entrained the behaviors, that created a system that bred more of the same, year after year. To understand how it had altered me, and how I could in turn shape it.

  Medicine is a culture that does not indulge suffering, though it is everywhere. It is there in every patient, every family member, and within ourselves and our colleagues. The omnipresence of the suffering makes it the easiest thing to ignore. It is the most important thing to attend to and we are constantly dismissing it, pushing it aside, whether it’s our own suffering, or the patient’s suffering, or our family’s suffering. We push it aside to get to the patient.

  The thoughtfully designed curriculum that gifted us cadavers to dissect and learn on also disembodied us from ourselves. The lesson was: Honor these bodies before you, they are sacred and magical. And to do this, you must utterly neglect your own body, your own emotions, and your wholeness. Esteem your mentors, hold them in such high regard that you dismiss your own truths. Be so enamored with the diseases that you present the patients burdened by them to your teams as incarnations of classic texts. That is the best way to honor the patient bearing the disease: to learn from their sacrifice. Distance yourself from your own feelings, lest they contaminate the field. The system is configured to produce a predictable product, and the dysfunctional product is then tasked with roles it is not trained to manage. This misalignment perpetuates feelings of isolation. It is an ironic paradox that medicine has become. We disembody doctors and expect them to somehow transcend that handicap and be present in their bodies, empathic and connected. Physicians who have had to learn to disengage from their own emotions to function naturally divert their gaze around the emotions in the room.

  It isn’t just that the system creates an environment that leads to a lack of empathy. Physicians look past suffering partly because we don’t believe we have power over it. Because in the face of pain and suffering, our presence alone feels puny and weak and not at all like the powerful version of ourselves we’d envisioned when we signed up to be healers of disease. Yet if we can disclose our weaknesses and even our failures, there can be forgiveness and grace. Even when we are breaking, we are already in the process of coming together, healing to become stronger. In the same place you see the fracture on the X-ray, if you look closely, you can also see the sclerotic bone that represents healing.

  If we could admit that as physicians we held only one piece of the whole … if we could pull together not only our medical knowledge but also the patient voice, the knowledge of the body and our communal knowledge, maybe we could redefine wholeness. I looked at the front row, at my colleagues who had been there from the very beginning, the small group of physicians who had commiserated in my room on the obstetrical floor and who had begun championing change. They smiled and nodded, and I understood that in that moment, our community was growing. I looked past them to the sparks of light coming back at me from iPhones and the greenish light of the hospital-issued pagers the residents still carried. A memory flooded in, something I had not thought of in years.

  It was a myth told to me by one of my elderly patients during my residency in New York. I’ll tell you the story the way I remember him telling it to me.

  He began by demanding I sit.

  “Why do you always look like you are in such a hurry?” I winced at his accurate representation of my day and the suggestion that I might not have time to spend with him. I dutifully sat.

  “Good. Now we can talk. So how are you?” he asked.

  “What’s important is how you are doing. You are the patient, after all.” I attempted to pivot the conversation back to him.

  “Yes, I am your patient, and as such, I can’t hope to be any more well than my doctor, so that’s why I ask, how are you doing today?” He winked at me.

  “I’m fine,” I offered, shifting uncomfortably at the implication that my emotional state impacted him.

  “You don’t sleep,” he reminded me. “This,” he paused, emphasizing the word, “this is a problem.” His gray skin tone, wild white hair and his accent recalled old black-and-white videos I’d seen of Albert Einstein when I was in school.

  “It’s just the way it is, it’s the training. It is how we are meant to learn. It’s important,” I said. “Everyone before us did it and it made them better doctors,” I added unconvincingly.

  “Listen, you want to talk important … let me tell you something important,” he said with an intensity.

  I leaned in, believing he was going to share a new symptom he was having, some new portent of his inescapable death.

  “This is what’s important. I am going to tell you a story. Are you ready?” he asked, and I nodded. “In the beginning, there was only God,” he began, holding me in his gaze.

  I sat back and tried not to visibly sigh. This was not the revelation I had been hoping for.

  “And in the beginning, God’s presence filled the universe. And then He decided to bring this world into being. So he drew in His breath, and from that contraction darkness was created.” As my patient explained this, he too drew in his breath, puffing out his chest and growing taller. “And then light came and filled the darkness”—he spread his arms wide across the span of his bed—“and filled ten holy vessels with primordial light.”

  I felt myself relax slightly, vaguely entertained by his investment and animated retelling of the story. His aged, arthritic hands bounced around, shaping the ten vessels. He mouthed the numbers as he silently shaped them: “One, two, three …

  “These vessels, though. Well, there was a problem. They were too fragile to contain such a divine and powerful light. They broke open, and all the light scattered like stars.” His fingers darted about the room, in the direction of the fragmented light.

  I smiled at
the idea of a primordial light fracturing into stars. The one part of religion that had always appealed to me was the allegorical nature of the stories. If I found myself thinking, These are just the stories people told themselves before they had science to explain the universe, then I couldn’t engage with them. But if I reminded myself that these stories were in essence metaphors, then rather than become infuriated by the lack of scientific rigor, or the impossible nature of the stories being spun, I found I could suspend disbelief. The idea of a guiding metaphor gave me something to look for. It was a roadmap. The tales were a representation of more tangible values; I was to divine the hidden meanings. I enjoyed imagining what I was meant to glean, what wisdom I could take forth that would be of use to me from these ancient tales.

  “Scattered like stars,” I repeated after him.

  “The wound is the gift, you see?” he implored me.

  The wound is the gift.

  “We have to make the light whole again,” he told me with great sincerity and a sense of urgency. “That is why we are here, to gather the sparks and repair the world.”

  I held his hand, understanding he thought his death was near.

  “You are enough,” he said. “Now, go. Gather the sparks,” he demanded, gesturing to the hallway.

  I wasn’t sure what he wanted me to do, but he seemed insistent I leave, so I took my exit from his room, feeling it was all a bit surreal.

  * * *

  I looked out at the audience and saw sparks. And I began to wonder: if we believed that, if we believed our purpose was to gather the sparks, what would that look like?

  What if the question I had been posing was entirely wrong? What if it was not How do we get from here to there, but rather, How do we live? How do we live in such a way that honors all aspects of knowledge? Not just medical knowledge, but the body’s knowledge and the truths that can only be delivered through the patient’s perspective, and our communal knowledge of suffering and identity? If each of those bits is a piece of the light, if each one is a spark, we could unite them to become whole.