Patient Stories

Puja Shankar

“I need to be admitted, I think I have Guillain Barre Syndrome” I stated confidently and somewhat shakily to the receptionist in front of the Emergency Department; this was ironically the same department I rotated in a month prior to my current presentation. She looked at me quizzically and I showed her my employee badge. The bold ‘MD’ letters next to my name changed her expression from confusion to concern.

I was seated in a wheelchair, clutching the bag I had packed that morning in anticipation of a hospital admission, and wheeled into the emergency room. Within minutes I was on a stretcher, drowning in a much too large, starched, sterile gown. I winced as an intravenous line pierced into the soft skin of my forearm, filling a myriad of colorful tubes with my blood. The pale pink EKG sheet demonstrated a heart rate most people have with strenuous exercise.

Attendings, residents and nurses crowded as my high heart rate triggered the patient priority system. Amidst the growing fear and panic I attempted to narrow my focus on the flustered intern who repeated his questions twice before diligently writing down my answers. I empathized, trying to remember that I too had been in the same overwhelming position just a few days ago.

My own words sounded foreign, clumsily reiterating a story that even I was having trouble believing. For days I was woken by a racing heart rate, so fast that its beats were indistinguishable. An inappropriate, disturbing fatigue followed, leaving me breathless after menial tasks, causing me to rest after a few steps. But the most sinister symptom, which forced my arrival to the emergency room, was the development of persistent, pervasive tingling and numbness; it crawled from my toes, up my legs, wrapped around my chest and finally rose to my neck. My entire body was shaking, vibrating, even though outward appearances showed that my arms and legs were steady. These symptoms were bizarre, unnatural, and fit no mold I had ever known. As physicians are guilty of, I attempted to self-diagnose and treat my symptoms at home. But my attempts at rationalizing began to grow thin.

The irony was not lost on me; all those years of allopathic medical schooling had ultimately led to frenetically practicing breathing exercises and yoga in order to avoid a hospital visit. The team listened attentively even as they cautiously congregated towards the foot end of my bed, stepping away from me as if to distance themselves from this strange illness. Wringing my fingers, I began to feel an uneasiness rising, collecting in my throat. Imagined fears loomed, and began to overtake real dangers. In an attempt to sway the physicians in front of me away from a somber diagnosis, I reiterated my otherwise negative medical history – I didn’t take any medications and hadn’t stepped foot into a doctor’s office in over a decade. But they had heard enough from me. They conversed in hushed tones now amongst themselves, words hidden behind the masks. Given the complex reverse hierarchy when doctor becomes patient, information was presented to me gently and respectfully. A list of differential diagnosis was relayed to me, as I mentally prepared for a hospital admission. Words I had only known in textbooks were now a possible reality; multiple sclerosis, pulmonary embolism, neuromyelitis optica, Guillain Barre syndrome and coronavirus.

Distinctions between days blurred as I experienced the breadths of modern medicine. I lay for hours in an ominously loud MRI scanner while my brain and spinal cord were sliced into hundreds of frames. Contrast dye injected during a CT scan of my lungs, warmed me until I was burning from the inside out. Spinal fluid was collected and tested. Innumerable blood draws were done twice a day from my plump, violet veins. Continuous cardiac monitoring meant that I was never alone; a small monitor made its home in the pocket of my hospital gown, nestled close to my chest. Its humming kept me company throughout the day since visitors were restricted due to the pandemic. Eventually the laboratory testing and imaging began to coalesce and show results. I was diagnosed with a rare variant of Guillain Barre Syndrome known as Acute Inflammatory Demyelinating Neuropathy and was started on intravenous immunoglobulins. Following the diagnosis, I couldn’t shake the sense of profound betrayal; my body was producing antibodies against my own nervous system.

My stay was racked with sleepless nights, characterized by the constant vibrations in my limbs and pervasive sense that the bed was moving under me. I developed a strange sort of seasickness, holding on to the rails of my bed and having to catch my breath often. It was always a relief when the phlebotomist greeted me at dawn and I could sit up with some purpose after dark, formless hours. As sun began to pour into my room, friendly cafeteria workers made their way inside, bringing in variations of the same meal. Friends and colleagues flitted in and out, perching themselves on the ledge by the large window, echoing kind, sympathetic sentiments. They were welcome, but fleeting distractions.

The day truly began when my providers entered. I found the transformation of my role from physician to patient disorienting.  For so long I had been the one standing over patients, my hands crossed compassionately, nodding and speaking with calm, reassured, confidence, always with an answer. But now suddenly I was looking up, it was my eyes flickering between the faces that loomed around me. My power had swept out of my veins through the tangles of tubes and in the span of a few nights I had fallen to the quiet, nervous politeness of a patient. My years of providing reassurances, detailed explanations, and suggestions only glowed dimly in the back of my mind. I frequently asked for statements to be repeated as I found it hard to concentrate on the enormity of the situation and the options that were presented to me. I began to realize that there was a commonality among the patients I had treated over the years at various hospitals all over the world – an awareness I had never thought to put into words but had now come to recognize. It was only natural as a human being, to find your words die in your throat, to revert to childlike vulnerability as you looked upwards, not in wonder or awe, but in fear.

A week later as discharge plans were made, I began to feel troubled. I had never felt as alone as I did when it was time to leave the hospital, removed now from the constant monitoring of my body, of the caretakers doting on its every need. I was, totally and utterly, alone with this diagnosis. Just as they had during the initial stages of my hospitalization, my thoughts began to overtake reality and run rampant. The concern and care from others seemed fragile, and impermanent. I appreciated them but within the dark world of my thoughts, their words would fade, the flowers would wilt, the cards would gather dust. At the end of the day it was just the two of us, the illness and I. I felt I had borne a child that I didn’t want, a responsibility that I could only try to ignore, to rationalize, but never confront and accept.

During residency, I sometimes wondered what happened to the patients I cared for in the hospital. What happened after they were subjected to our meticulous questioning, invasive procedures and plethora of medications? Would they be okay once we had untangled the tubes and machines, once they were back home? But these thoughts were short-lived, vanishing with the presentation of a new case. As physicians we like to consolidate our diagnoses into neat packages of medications, orders, and recommendations. But guidelines and protocols cease as soon as the patient is out of the hospital and alone in their own beds, filled with the trauma they have endured. The recovery period is mentioned as an afterthought to patients, an addendum to an otherwise complicated situation.

The profound intimacy between patient and disease can never be fully understood. I have recognized that the only person who can come close to understanding, is the physician. Unlike those closest around us, it is the physician who understands the ins and outs of a disease, and sometimes the individual themselves. In the months that have followed my diagnosis, I have found it helpful to rely not only on my providers, but also on myself. By applying logic, reasoning and science I have found it tolerable to live with and understand the winding aftermath of a serious illness. While I am grateful for this, I do question how my patients, the majority without a medical background, seek solace. Their ability to rationalize, accept and most importantly, find strength at the mercy of a formidable unknown seems nothing short of miraculous.

I have come to know that below the gleaming, wonders of modern medicine, lies the bottom of the iceberg – the ugly, dark, underbelly of life after diagnosis, and what little importance it is given. While I previously hoped to resonate confidence and reassurance in front of my patient’s eyes, I now hope it is concern and care they see – that I seek to nurture them as the human being beneath the diagnosis. I will remind them that everything is going to be okay. And most importantly, that they aren’t alone.