As I lay abandoned on a stretcher in the hallway of my university hospital’s emergency room, I felt powerless in my ability to improve the quality of my care. Nurses bustled back and forth between patient rooms, too busy to give me the attention I deserved. My bladder was getting painfully full, but I was too weak to get up to use the restroom and unable to find anyone I could ask for help. For the nurses, there was no time to rest. For me, there was no relief from my symptoms of weakness and excruciating pain.
Later that night, I lay under the bright white lights of trauma room one. I wasn’t a trauma patient, but there were no other rooms available, and I was retaining urine. I needed to be catheterized.
“I’m so sorry,” I said to the nurse performing the procedure, turning my head so I couldn’t see what she was doing. There were no blankets in trauma room one and no way to cover me to preserve my dignity and mask my shame.
“You don’t need to be sorry,” the nurse said. She had been looking out for me all night when no one else had, perhaps feeling guilty that she was unable to help me as fully as she wished she could. “How are you doing?”
I didn’t know how to answer. I felt like a ghost under the bright white lights. Above my deep-seated humiliation, I knew she recognized the fear in my eyes.
“Hey, I want you to know I really care about you. I know I haven’t been able to get to you as soon as I should. There’s a lot going on here. I’m really trying.”
“I know,” I told her. I did know. Before I’d ended up in the emergency room that night, I’d spent over a decade as a chronic disease patient and over six years working in social services. I knew that my own crisis was just one of many. Even so, to be a number, not a person, in the midst of crisis is a doom-inducing feeling. I felt no one was looking out for me.
“As long as I’m here, I’m going to be here for you,” the nurse said.
***
I was admitted to the hospital that evening for deranged electrolytes. My labs indicated a potential metabolic acidosis. Low potassium, low CO2, low phosphate, high chloride. My muscles and nerves, susceptible to electrolyte derangements, were weak and on fire. My legs had locked into painful spasms, and despite being in the most severe pain of my life, the doctors only approved Tylenol.
I spent eleven days in the hospital, then fourteen more in a physical rehab facility, trying to get my weak body to walk again. On day nine in rehab, my insurance denied coverage for the rest of my stay.
My case manager walked briskly into my room. “Your insurance denied your stay here. None of this will be covered.” She informed me I would be fully responsible for payment. She did not tell me there was a financial assistance policy or that my insurance had only denied the remaining days of my stay, not the initial nine. “We need you to do a home visit as soon as possible so we can get you out of here.”
My home had twenty steps to enter. Since admission, I had been unable to walk or stand. While I was making slow progress, there was no speeding up the timeline of my body to satisfy my case manager’s demands.
The day before discharge, I came down with hospital-acquired COVID. It should have been a message to my care team to slow things down, to let my weakened body recover first. Instead, my doctor walked into the room to tell me discharge would still happen that morning. I spent the next twenty days between a hotel, the emergency room, and a friend’s apartment, until I was strong enough to scoot on my butt up my flight of stairs.
***
When I look back on my time in the hospital, I realize that the people most responsible for my well-being were the ones who cared the least about it. In the hospital, a resident and attending doctor saw no harm in straight catheterizing me seven times before allowing nurses to put in a Foley. In the rehab facility, my case manager chose not to share the financial assistance policy and ignored the harm of an expedited discharge despite knowing I would be homeless if unable to enter my apartment.
Always, the people looking out for me were people like me who fell lower on the hierarchy of hospital authority and had their knowledge dismissed. I knew more about my body and the source of my health crisis than the doctors did. The nurses and CNAs knew too, as they witnessed me struggle from bed to commode or breathe shallowly through excruciating pain.
Those of us lower on the chain of authority exchanged stories of being unheard or of loved ones we knew who were unheard. A CNA whose daughter had the same chronic conditions as I did, a janitor who was working through college and didn’t want to be working in health care, a nurse who knew that the severe agitation I experienced was a common side effect of a medication she gave me and begged unyielding doctors to give me relief with a simple anti-anxiety med.
As I write this now, I still don’t know why my health crisis happened.
“Our health care system has become reactive, not proactive,” my home health care worker wisely said to me a few weeks after discharge. This is not a reassuring feeling for patients, nor sustainable for the preservation of human life.
Still, in the rare moments of calm throughout my recovery, I reflect on moments from my hospitalization that offered me comfort. To my surprise, it is not any doctor telling me they see my suffering, but a van driver shaking my hand as he dropped me off at the rehab hospital. “You got this,” he said.
Just minutes before, we’d exchanged stories over our feelings of powerlessness with what happened to our bodies and the bodies of people we loved. My van driver’s wife had spent years with undiagnosed Guillain-Barré, dismissed because she was not believed and because she was a woman.
In that moment, I found myself comforted by the humanity of people with the least capacity to change the trajectory of my suffering. If powerlessness was what sparked empathy between me and the people tasked to care for me, perhaps it wouldn’t have been such a bad thing for my doctors to feel that way too.
Rachel Litchman is a writer.
