In Shock Read online

  I worried I wouldn’t be able to stand for the duration of Mass, but everyone reassured me that there were plenty of frail, elderly members of the congregation who sat throughout. I should feel right at home among them, I was told. Which was a perfect comfort, except that I was thirty-three years old.

  It still was an incredible, time-consuming labor just to shower and dress, so we arrived late, after Mass had started. We snuck up the side aisle, slowly, attempting not to draw attention, which was an exercise in futility. Everyone had seen us, except for the priest, who still had his back to the congregation. As we took our seats in the pew, I felt stares of gratitude and overheard whispers of wonder. My name had been read on the prayer list for months, and many of those present had actively prayed for my well-being.

  I hadn’t been around that many people at once for months, and the sensory stimulation was overwhelming. There was so much to take in. I allowed myself the distraction of focusing on the beauty of the space. The church was designed to invoke memories of home for immigrants from many different countries, so there was a beautiful copper dome, a colorful fresco and glass windows etched with Roman crosses. It smelled of incense and candles. A large baptismal fountain, where we would one day baptize our son, occupied one side of the transept. I felt humbled and very small in the cavernous space, precisely how the architects had intended.

  Distracted, I missed a cue entirely, and remained standing as everyone else sat. It was only a moment, but it was long enough to catch the priest’s eye. The same priest whose voice in prayer woke me that very first day, the same priest who had presided over the baby’s burial, now met my gaze.

  “Oh, ladies and gentleman, we have a very special person here with us today.” He went entirely off script. It was a shout-out. I attempted to shrink into the pew.

  “We have someone with us today who walked on water.” And with that declaration, hundreds of heads turned my way.

  I looked to Randy, who had the benefit of a Catholic school education, and whispered, “So, this is embarrassing, and perhaps not ideal timing to tell you this, but I don’t really know the Bible very well. What does that mean when he says I walked on water?”

  “It’s a good thing,” he whispered. “Just smile.”

  “You don’t know either, do you?” I taunted him, through my smile.

  “… like Jesus,” the priest added solemnly.

  Oh God, he said I’m like Jesus. This was a bad idea. I can’t possibly live up to that, I thought silently, as every unkind action or thought I’d ever conceived raced through my head.

  “Jesus walked on water,” Randy informed me.

  “I really think you are piecing this together as you go,” I laughed.

  “And it was a miracle,” he added. “He is saying you are a miracle.”

  “Right. No pressure there.”

  Everyone stood and applauded. I smiled and tried to fix my face into an expression of humble gratitude.

  After the service, a few friends and relatives came over to congratulate us on my recovery. Our church seemed to be carrying an undue burden of very young people who were very sick that year. We commiserated with friends and the spouses of friends who were there praying for their own miracle. My cousin’s wife had been stuck in that terrible non-space of permanent critical illness after delivering her baby. An infection had spread throughout her body and ravaged her heart. She’d die in April of the following year, at thirty-six years old. But at that time there was still hope she could recover. Between catching up on her antibiotic treatment and the chemotherapy regimens of others, I began to sense that I represented something to them. It meant something to them that I had survived. My recovery had empowered their hope with a bright flame of tangible success.

  I had a complicated relationship with hope that was powered by religion. Though I had no idea what precise combination of factors had allowed for me to survive the unsurvivable, I weighted science, medical care and surgical skill heavily in my calculation. How luck, religion or God factored in, I couldn’t say. I had always had a cynic’s distrust of miracles. As a scientist I felt there was a more rational explanation, and that tended to be the one I favored. The intangible presence that I sensed around the edges of my story, that seemed to guide us such that the right thing happened at the right time—well, I was happy to call that luck. I found it difficult to integrate into my sense of self that I represented the power of prayer and hope in the face of futility.

  I wasn’t always that way. I had been beaten down by the idea, often evoked by families of patients in the ICU, that a miracle would save them. I had seen that belief of an attendant miracle used as a reason to consent to procedures and interventions that could only prolong suffering, could only prolong the inevitability of death. In the context of medical decision making, declaring a belief in a divine intervention is viewed as an expression of unfettered optimism, where doctors wish only for acceptance of the situation at hand. We worry that such hopes are a manifestation of denial or even expressions of disappointment in the limits of medical care.

  In medicine, we are ill-equipped to continue to plan when someone tells us, “We’re praying for a miracle.” We feel utterly helpless. Our rational, cognitive brains tell us there is no use in any further discussion. What use is logic, science or facts if we were going to invoke the supernatural?

  If they only understood how hopeless the situation was, we think, they could better prepare, plan, cope. They need to know that it’s hopeless. We idiotically tell them again and again that it’s hopeless, thinking if we can just “get through to them” they will acquiesce and allow their loved one to die.

  Sitting there I began to see it differently. I heard them. They were praying for a miracle not because they didn’t understand how sick their spouses were, but rather precisely because they did know how sick they were. Hope was not, as I had believed, an unrealistic, unfettered optimistic emotion. Hope was an orientation, a way of being in the face of a reality that was not of their choosing. Hope was a destination they had arrived at when the situation had been wrestled to the ground and stared at, bravely. Just like the wooden icons painted with the visages of saints they would place at the bedside of their loved ones, hope represented an acknowledgment of the limitations of the reality they found themselves in. It was an invocation. Hope gave them resiliency, a reason to go on, a belief that there could be a future.

  Why would I ever begrudge someone hope?

  What if hope was the way to face and plan for an admittedly uncertain future?

  I rejoined the conversation between my husband and one of his childhood friends whose husband was battling leukemia. I listened as she described the last round of treatment and the terrible toll it had taken on her husband. I listened as she outlined her hopes for the next cycle. I found myself saying, “I really share your hope that he will be cured.”

  “Thank you.”

  “I know this is so hard, but I wonder if you have been able to give yourself space to consider what you guys might do if it doesn’t work?”

  “We’ve started to talk about maybe enrolling in hospice after this next round. It’s just so hard to give up hope, with the kids and everything. But I see how weak he is getting, and I just don’t think he can handle much more.”

  “I think it’s really brave that you are letting him talk about possibly dying,” I said to her with a genuine gratitude. “No one ever lets anyone talk about death, you know? Even when it’s so close you can almost touch it.”

  Randy shot me a look that said, I’m not going to take you out of the house ever again if you insist on continuing down this morbid rabbit hole. He added a not-so-subtle eyebrow lift and head-tilt combination that suggested I might be making her uncomfortable. I shrugged.

  In the car on the way home I asked, “Do you think it’s a miracle I survived?”

  “Yes, I do. You are my miracle,” he said without a hint of irony.

  “Well, I think if I still do die, which I think I w
ill, you guys should get married.” I hadn’t realized until the words came out that I still believed I would die.

  “Have you lost your mind?” he looked at me sideways. “I really hope this is some weird way of you trying to control a future that feels uncertain, but I certainly do not need you picking out my next wife.”

  “If I die, you will get married again,” I informed him.

  “No, I won’t,” he countered.

  “Of course you will!” I argued.

  “I don’t even understand why we are discussing this. I feel like I just barely got you back. Why are we talking about me losing you again?” He sounded angry but looked ready to cry.

  “If I could live another year or two, I think that would be really amazing.”

  “You are going to live more than a year or two! Why are you saying that?”

  I took a breath and answered, honestly, “I don’t know, something just tells me I am still going to die.”

  “Well tell it to stop,” he demanded.

  “I don’t know if I can. It feels real. I’m sorry.”

  Somewhere inside me, the next catastrophe lurked. And I sensed it. The subtle signals, the imbalance. When I sat quietly and fully inhabited the space of my body, it told me things. I didn’t know yet that I could trust those messages enough to act upon them, but I was at least beginning to be able to listen to them and bow at their altar.

  * * *

  Then, like a sudden rain during a summer storm, my hair fell out, all at once. I was attempting to pull it into a ponytail, and with each attempt to gather it, I had more detached from my scalp and in my hands than was held in the elastic. I stared at myself in the mirror, wondering what this new loss meant. Maybe my body was just diverting energy to more essential processes than hair? I knew that regenerating liver cells as well as healing from the surgery were highly anabolic activities. Maybe I wasn’t getting enough calories to do all of that and grow hair? I tried hard not to panic. I’d learn later that this unexpected molting, months removed from the initial insult, was not uncommon. Trauma sometimes “shocks” hair follicles into a dormant state. The follicles would awaken eventually, but for the time being, I looked far sicker than I had when I was truly sick.

  Hair ranked low on the list of “Body Parts I Value” when framed against my actual organ failures. I cared far less about my hair than I did about, say, my kidneys or lungs. That didn’t mean I didn’t call my best friends and cry, asking them to find a wig shop to take me to. I did that, but it wasn’t sustainable. Ultimately, I found it difficult to care enough about my lack of hair to do anything about it. I had the fine wisps that remained cut very short and wore a wide headband to hold back the new sprouts as they eventually tried to break through. As ridiculous as I looked, the pity directed at me felt disproportionate to the loss. I became impatient with expressions meant to convey empathy: “Oh, no! You poor thing. You’re losing all of your hair.”

  “It’s just hair. I don’t understand what the fuss is all about. It doesn’t even do anything useful. I can live perfectly well without it,” I’d reply.

  The trouble with outward manifestations of illness is that they are provocative. People interpreted my lack of hair as an invitation to discuss my relative health in a way that they weren’t empowered to when there was no visible indicator of illness. Everyone seemed concerned, and genuinely horrified for me, to have to exist in the world while looking so terrible. Home remedies and supplements were offered as matters of extreme urgency. I was given holy water and biotin capsules by relative strangers. Vitamin packets were pressed into my palms, like communion wafers. Take this, it will save you.

  When my intestines began protruding through my abdominal layers in fist-sized punches like some grotesque alien baby, I learned I still had some measure of vanity. I met with my surgeon, Dr. G.

  “It’s a hernia. Actually I can feel more than one defect. Make that hernias, plural.” He sighed. “If it doesn’t bother you, we should just leave it alone. It’s got a broad enough base, I don’t think your intestines will get trapped in there,” he continued.

  “I’m completely deformed and it’s disgusting. We have to fix it,” I countered.

  He was not at all surprised that this had happened. With how severe my illness was, and how little nutritional intake I had for so long, my tissues were just weak. “You know, no one thought you’d survive the operating room that night. I was there when they were closing you and they really just thought they were closing you for an autopsy. They did a whip stitch,” he explained, referring to a type of suture that is quick but not intended for healing.

  I winced. I’d been in operating rooms like that. I’d witnessed that tipping point, that same silent declaration that the patient wouldn’t survive. I’d seen it used as a necessary time-saving mechanism. Situations when you just had to get out of the OR, get the patient to the ICU so you could better stabilize them and bring them back. Either way, meticulous, time-consuming stitches are abandoned in favor of a rapid continuous loop. Tissues aren’t approximated carefully, there is little thought of whether the tight ties will strangulate blood flow to the area. You are just closing the patient so they appear closed. For the autopsy, for the next hour of Hail Mary resuscitation efforts, for the funeral, but not for the future. You never imagine sitting across from them in a routine clinic encounter as they complain about ugly but innocuous hernias. Taking the time to close my fascia, the tough but thin covering keeping my organs in place, was not a priority.

  “Listen, all I’m saying is let’s wait for you to get better. See if things get worse before we try to fix anything. Of course I’ll fix it. I’d just rather do it once.” He smiled.

  I understood clearly he shared my intuition that my body wasn’t yet done unraveling. When it did, he’d put me back together again.

  He called me at home, a year later, to tell me, “I just reviewed your repeat CT scan. Listen, there are two masses in your liver. We couldn’t see them before because of the distortion from the hematoma. But now that it’s shrunk … well, it looks like one is what ruptured on us last time, but there is another. You need to come downtown right now.”

  But before that happened, I had returned to medicine.

  Six

  Shifting Frames

  It was autumn by the time I was declared able to work again. Although the accuracy of my own assessment that I was “able to work” is probably debatable. More truthful to say I had simply tired of being my only patient, obsessively tracking lab values and medication regimens. I convinced my doctors that I needed to go back to the hospital if I was to remain sane. I wasn’t yet able to drive and was chauffeured by friends, who also lacked the ability to visually map the location of all the potholes in the city. I couldn’t imagine the privilege of being so pain-free that I could drive over bumps with impunity. When I first went back, I had very little actual responsibility, which was appropriate. I was at work, maybe to attend a meeting or listen to a presentation, but that was really the extent of my day. It would be two more months before I had the physical endurance and mental stamina to round in the ICU again.

  I had gotten sick when I was still a fellow. I had completed the requirements of the three-year training program and had stupidly stockpiled my vacation so that I could study for my upcoming medical board examination before the baby came. The months I spent recovering between spring and the fall were spent very differently than I had planned. But still, I returned to work as an attending physician. That day marked the first time I would be fully responsible for anyone’s care. As I stood outside the automatic doors of the ICU and centered myself, I was acutely aware that this moment represented the culmination of all of a lifetime’s efforts toward this goal.

  The timing of my illness had already superimposed its own narrative on this second chance to fulfill my purpose. I had often wondered what it meant that I had spent so much time preparing to be a physician, only to have the opportunity to apply it nearly extinguished. I struggl
ed to make sense of a trajectory toward nothing. Training that demanded I lock myself away, abdicate all fun and miss family events all in the name of the pursuit of medical knowledge, only to have the path stop dead. The possibility that my formal education had not been as complete as I had believed it to be occurred to me. It was not lost on me that my true education had begun the moment I had gotten sick, and it would likely continue for years to come. Standing outside the unit, I silently hoped for the strength and clarity of thought to unite my experiences as a patient and a physician into a cohesive whole, in a way that would honor all that I had been through.

  As the automatic doors swung open to the unit I’d been assigned, I saw the team, dutifully arranged and ready for morning rounds. I took my place before the team, in front of the first patient’s room. I introduced myself to the members of the team that appeared to be new faces. I couldn’t tell if I was imagining it, but I felt they might be diverting their gazes. Or they seemed willing to meet mine only very briefly. As a group they seemed uncomfortable, staring at their papers or shoes as I tried and failed to put them at ease. I scolded myself; surely I was just being overly sensitive as a new attending. I knew I looked healthy and put together. I’d spent an inordinate amount of time considering how I wanted to dress that first day. I had chosen a navy blazer with bracelet-length sleeves paired with charcoal pants and a flat practical shoe. I didn’t quite feel able to wear the white coat yet. The longer I stood there, the more I knew I wasn’t imagining it, they were truly behaving strangely. I constructed a series of possible narratives that could potentially explain their behavior. Perhaps they had heard I had been very sick and they weren’t sure whether to acknowledge it. Maybe they were concerned I hadn’t retained enough of my medical knowledge to be a truly good clinician. Maybe they were just worried I wouldn’t be able to make it through rounds. I settled on the belief that they felt unsure about whether to acknowledge my illness. That, I decided, was probably all that I was sensing.