In Shock Page 20

  “What?” I asked. “What’s wrong?” I saw tears building in his eyes.

  There was a long stretch of silence before he began. “I used to watch you sleep in that rocker. Did you know I’d stay up all night worried you might die if I didn’t? I’d listen to your breathing and be so scared I was going to lose you.” He shook his head at the intensity of the memory.

  I thought I understood. He was looking at me feeding our child in the rocker, but seeing my ghost. “But I’m OK now. You don’t have to worry.”

  “No, I know. I’m not worried or sad,” he said, wiping away his tears. “I’m happy. It’s just one of those times when you really have a dream come true. Back then, I don’t think I even dared to wish I would one day see you rocking our baby in this rocker. I just wanted you to be OK.”

  “But here we are.” I smiled.

  “Here we are indeed.” He smiled back at me.

  I sat and rocked our baby, reflecting upon how each child is a kind of distillation of every generation past, a concentrated extraction of DNA, of history and habits, of personality traits and aspirations. The old spirits evaporate, leaving only the residual essence of their shared history. He had my father’s name, Marwan, which was also my liver surgeon’s name, as his middle name. His first name was purposefully simple—Walt. Though we alternatingly attributed it to wanting a name that conferred a sense of kindness, or an evening newscaster’s earnestness, or a Disney-like belief in magic, it also honored my love of poetry.

  “I swear to you,” I whispered to him, reciting from Walt Whitman, “there are divine things more beautiful than words can tell.”

  I had found all of my lost words, and still found them lacking. I couldn’t articulate the magic that I felt in that room, with our little family crowded on that rocker. I knew that one day, despite what I knew of how words could utterly fail you at times, I would want to tell him how he was the physical embodiment of so much love and the distillation of our silent wishes and prayers.

  Eleven

  Relapse

  Because of his severe prematurity, walking and other gross motor skills came late for Walt. His coordination was poor for the first two years, though in large part we chose not to acknowledge this reality. We instead made a series of compensations, including obsessively walking behind him to catch his falls. I photoshopped a lot of drool out of otherwise charming pictures. Unlike adults, who learn to hide so much, children have the remarkable gift of being unified in feeling and in body. They innocently express what they feel. If Walt was frustrated with the discoordination of his walking, he showed frustration; if he was sad because falling hurt, he cried. This honesty was so pure, and stood in contrast to the adults around him who seemed not to know what to do with feelings except to hide them. Vulnerability is not our default state, and most of us spend years creating layers of protection to shield us from judgment. So much so that when we encounter disability or even vulnerability in others we believe the proper thing to do is to pretend we don’t see it.

  By age three, he seemed to have shed the disabilities of prematurity for good, and we planned an elaborate circus-themed birthday party to celebrate. He and his friends were taught trapeze skills by a Ukrainian family and put on a show for the adults. There were unicycles, balance beams and a circus ringmaster. The children were decorated in brightly colored face paint and costumed themselves in ornate tutus and top hats. Balancing atop wobbly balls, they smiled proudly, aware of the magnificence of their newly acquired skills.

  The instructors made the impossible seem effortless, while the children grunted and wiggled through their successes. Still, we were all impressed by the level of concentration and centeredness even the smallest among them demonstrated as they traversed the thinnest ropes and bravely mounted the unicycles. They seemed to naturally reframe their fear as excitement and channel their energy into sharp focus. That is the special magic children possess: their willingness to thoroughly invest in whatever reality they find themselves in.

  Not long after his third birthday, the record-setting cold winter blew in, covering everything in an icy shell. There were four-foot-tall snowbanks and gusts of wind that simultaneously froze and burned any exposed skin in minutes. Looking out at the arrested world from inside the house, one could appreciate a static sort of beauty. It was the beauty of implied harmony, a neighborhood united under a single glittering blue-white surface. Charmed as I was by the transformative power of a massive snowfall, I still couldn’t deny a sense of malice. Though I hated feeling physically cold, I stood on our front porch to assess the nature of the risk. I immediately recalled the last time I had felt a cold that extreme. As my breath crystalized and my eyelashes froze, I felt an overwhelming sense of dread.

  I had just cause to be fearful. I had been having abdominal pain and it was escalating. It was happening frequently enough that I had actually gained the ability to discriminate three different types of pain. There was the tearing pain that happened sometimes as I bent down to pick up Walt. The surgical repair of my abdominal wall years before had been disrupted by the C-section for Walt’s delivery. The constant lifting of Walt had added to the disruption and there were holes in my abdominal wall again. It would require surgical repair and more mesh to be placed. I learned to recognize the taut pull and sharp warning that preceded the tearing, and I understood I was to freeze in place if I felt that warning. I also learned not to lift children, despite the obvious temptation.

  That surgery and all the others needed to explore my abdominal pain left fine webs of tissue called adhesions throughout my belly. My intestines would get hung up in webs and bands, and loops of my bowel would twist and choke, causing the second kind of pain. It was not a distractible kind of pain. It was more of a desperate, breathless agony that comes from dying tissue and torsion. When that pain struck, I was unable to either move or speak. Its presence dominated every moment of every thought until it passed.

  The third pain was a consequence of the surgery that had been necessary to remove the half of my liver with the masses. The surgery had left a tight narrowing or stricture in the duct tasked with draining bile from my liver. The small orifice would get clogged with a sludgy debris of bile salts and stones. This created a backlog in my liver and a sort of stagnant, dull pain that would transform into infection as the bacteria in my gut spread upward into my liver. I was admitted to the hospital almost once a month that year and underwent a number of procedures in an attempt to fix what was wrong. With each episode of abdominal pain and each hospitalization that followed, I felt my chances of functional long-term survival decreasing.

  I became morosely pragmatic. Even before the pain escalated that frozen winter, I had created a network of support around Walt in a futile attempt to make myself as extraneous as possible given my role as his mother. It was a transparent compensation for the fear that I would one day be forcibly removed from his life. I was trying to create a construct so that if I died or when I was hospitalized, his life would continue as normal, with my mom and Randy and a network of family and friends affording consistency. In pursuit of this absurd goal, I made sure I had no institutional knowledge that was solely mine. I externalized my memory of our relationship into photos and scrapbooks, writing down each conversation and sharing the funny stories so that I would never be the solitary keeper of our shared history. I pathologically avoided doing necessary tasks like shopping for new clothes or his favorite snacks, so that Randy or my mom would always know what he liked and needed.

  I wondered a lot that year if he would retain any memory of me if I were to die. I thought of the scant memories I had from the years before I was four and acknowledged I probably hadn’t imprinted upon him at all. At least not in any meaningful way. I believed that in his memory, my entire existence would be reduced to the nostalgia of a warm vanilla scent, or a sense of déjà vu at the pitch of someone’s seemingly familiar laugh. Close friends recognized the elaborate birthday parties as love letters, shameless attempts to affix e
arly memories upon his young brain. None of my compensations provided actual comfort, though. Instead I was reminded daily of the absolute power of death’s chill to erase the visible world entirely. I found it a dark irony that just as Walt was getting stronger and healthier, I was getting sicker and weaker.

  Whenever Randy saw the pain mounting, noticing me pacing or holding my right side, he would ask, “Do we need to go to the hospital?”

  “I don’t think so,” I would answer unconvincingly. I would smile a smile that was meant to suggest everything was fine, and there was no need to worry, that this pain wasn’t the pain that would bring about the end. This pain was a nuisance, and we should pretend it wasn’t happening.

  The answer should have always been yes, but I hedged. I believed I had learned to judge the difference between the episodes that would pass (and could be managed at home simply by resting my gut and taking in nothing by mouth for days) and the ones that required the intensive care unit, hospitalizations and procedures.

  I was frankly tired of being in the hospital, having found myself there so many times already. But more often than not it proved to be unavoidable. At times I misjudged the seriousness and waited too long before presenting to the emergency department. I responded to these mistakes by overcorrecting, wanting to prove I was a “good” patient. It seemed impossible to find precisely the right moment. But I learned that if I came in early, at the first hint of a problem, rather than being credited with making a good decision, I was regarded with a thinly veiled skepticism. That subtle dismissiveness left me feeling ashamed, and thus I was more likely to wait until I knew I had no choice.

  We do that, when the symptoms are vague and the lab results and imaging studies are normal, we believe the patient must have some other motivation, some secondary gain or emotional need that is placated by medical attention. It’s an uncomfortable position as a physician: to believe a patient wants to be sick when they are not. It’s difficult for us to conceive of desiring sickness when surrounded by so many patients desperate for a cure. We have a tendency to wall off these malingering patients within the confines of a box called mental illness. We naturally distance ourselves from them, believing we are pawns in some incoherent game without rules. In our more generous moments, we sometimes allow for the possibility that the test results have not yet had a chance to catch up to what is an invisible but real and mounting illness. And in those situations, we may observe them a bit longer, even as we doubt them.

  As a physician in my own hospital, I was generally given the benefit of the doubt when I presented too early, and they placed me in the observation unit so I could be monitored for deterioration or discharged if it amounted to nothing. I was of course never discharged from observation.

  I had a series of procedures over the next year to redress the cause of my recurrent abdominal pain. Doctors first tried to dilate the tight area of my biliary duct to allow the bile to drain rather than stagnate and cause infection. They attempted to spread the tight muscle apart and stretch it wider with an expandable balloon. When the duct closed on itself again, declaring that first procedure a failure, they instead cut the area with a scalpel, a procedure called a sphincterotomy. When that caused aggressive scar tissue to create an even tighter stricture, they used the balloon again and this time left a trio of stents in place to allow the tissue to heal around it, and hopefully remain open. The stents instead would clog and I’d become violently ill, requiring them to be removed.

  * * *

  From the moment the stents were first placed, I could feel them spreading open the bile duct in my liver. It was not an unmanageable sensation, but it was always present. The closest I could come to describing it is to say it was as though the dentist needed me to hold my mouth wide open so that he could have both hands fully engaged in a tooth extraction for days on end. It was too much of an imposition for too long of a duration. It became the steady machinelike murmur of discomfort that followed me through my day. And because it was always and unrelentingly present, I lost my acuity indicator for impending disaster. After a few days of rest following the procedure, I believed I was well enough to go into work. I knew well how to marginalize unwelcome feelings and discomfort. I would ignore it and get back to being of use. I had no way of knowing that the next warning would be overt shock.

  I was driving in when suddenly my eyelids felt incredibly heavy, as if they might not open again if I blinked. I began to experience the same disorientation that had struck that first night in OB triage, which caught me completely off guard. As I struggled to park the car, the woozy drunken sensation steadily creeped in, and when I finally reached the elevator banks, I told the first person I encountered, “I think I’m becoming septic.”

  Sepsis refers to an infection that has completely overwhelmed the body, resulting in low blood pressure and organs not getting the blood flow needed to sustain them. When recognized early, and afforded the benefit of the best, most aggressive care, it kills about a third of those it strikes. By the time there is clinical evidence of shock, mortality climbs to well above 50 percent. When the symptoms are ignored, or dismissed, it is uniformly fatal.

  I was taken to the Emergency Department and placed on a gurney; labs were quickly sent off by the nurse. An ultrasound that my surgeon had ordered previously was completed while I waited for the doctor. I felt marginally better when lying down, as my low blood pressure didn’t have to work against gravity to deliver blood to my brain. I channeled my energy and tried to focus so that I could text Randy. I wrote that I was in the ER, and that he should come to the hospital on his way in to work downtown and I would update him. I recognized most people would not text this kind of information to their spouse, but it was our normal, and I had no cell signal in the Emergency Department to allow me to place an actual phone call anyway.

  The emergency physician walked in to see his patient with suspected sepsis and abdominal pain texting. I didn’t recognize him and he didn’t know me. He was apparently new to the hospital. To add to the confusion, we had just switched to a new electronic medical record system, so most of my history was buried in an old system that he didn’t know how to access. He cocked his head suspiciously. “Well, I just reviewed your blood work and we’re not really seeing anything on the studies, so…” he paused, uncertain of what to say next. He waited for me to fill in his blank.

  I explained my rationale for coming in and my history. How I had felt that spacey feeling before and it preceded me dying. That I thought I was doing the right thing by coming in before things truly deteriorated. I explained how quickly I’d seen the situation shift from one that was manageable to one that was truly desperate. It was a balancing act and I was trying to do the right thing. He shrugged and said he’d put me in for an observation bed, but he thought I was fine. He added that he didn’t think I would meet insurance criteria for admission.

  * * *

  Doctors bring their own ghosts to every encounter, and they come in many different forms. A well-appearing patient who is perceived as monopolizing attention and time for nothing could elicit feelings of resentfulness. This is especially likely to occur if the doctor is predisposed by feelings of being overworked or missing his family. A patient who recalls to mind a past manipulation, or expresses a suggestion of blame, will elicit defensiveness. Even a patient who is reminiscent of a past failure can inspire fear and a desire to avoid reengaging in the same scenario.

  We weren’t trained to recognize ghosts, either in ourselves or others. We don’t know what haunts our mentors and friends. We might get a glimpse every once in a while of the depths of someone’s personal pain, when a fragment floats to the surface. We might hear, “These cases are the absolute worst” or “I hope this doesn’t end like last time” or “If she dies on me, I swear I’m done with medicine.” These feelings do not exist in isolation. They are not inert. They permeate our thoughts and influence our decisions. They become the subtext, the gravel of the path where we’ll drive again and again, w
earing ruts into the road before eventually laying down tracks. They are our vulnerability, our weak spots. They are the wax binding the feathers of our wings together. The wax that too easily melts when next we approach the sun’s fiery orbit.

  Like any weakness, they can be transfigured into a source of strength. If recognized, contemplated and bravely wrestled with, the ghosts can gain substance. They can materialize, even become allies. Difficult cases, losses can drive research and revelation. Rather than inspiring fear, those heartbreaking cases can transform lives, become the raison d’être. But if the feelings are ignored, as we were trained to do, they are a wall that blocks out sound.

  * * *

  On the observation ward, the nurse’s aide came in to take my blood pressure and it barely registered. She shrugged and went to get another machine, believing the problem was with the equipment. As she walked out I began shaking violently with chills, a physical manifestation of an overwhelming infection. My heart raced, and my hands and feet went cold.

  When the next blood pressure cuff also couldn’t register my blood pressure, I asked to speak to the physician.

  He walked in and I explained through chattering teeth, “I am cold and shaking and my blood pressure wouldn’t register and I think I need to be transferred to the ICU.” I believed the situation was rapidly becoming critical, and for the sake of brevity, I gave him just the basic details. I believed that was all he needed to hear to agree with me.

  He looked at me and smiled. “Maybe you’re just anxious. It can be hard being sick, especially as a young woman.”