Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work
Being an “interesting” patient who also happened to be a trainee made me a morbid little celebrity.
The more I talked about the cancer and the stroke, the more comfortable I became with my body. I stopped hiding my scar. I stopped cursing my hand, my mouth, my brain. Still, I was concerned about others’ perceptions of me. I had been laid bare before my friends, family, and what felt like the entire hospital. They’d seen me at my worst: intubated and restrained. Paralyzed. Sedated. Diseased. I tried to scrub those images from their memories and mine. I told stories, shiny and clean, and portrayed myself as new and improved though impaired. I choked on the worst of it: the anger, the sadness, and the isolation. All the while, I wanted nothing so much as to tell someone all of it, every ugly, frightening thing, and for them to see me, to know me, and to comfort me.
One afternoon, I was rambling about therapy (physical, occupational, speech) and barely noticed as my attending slipped into the room. There were hours to go before sign out and sleep and I hoped that my halfhearted storytelling would make time pass quickly. “How are you with movies?” My attending’s voice jolted me to attention. I paused and stared at him in confusion. “I had a hard time with movies,” he said. “After my stroke. They never made me cry before.” He painted pictures of himself as a young man, of his own stroke, of a life upended and then restarted. He went from physician to patient and back again. It was his story but I knew all the words. I was the only one I knew with my kind of cancer. I was the only one my age who’d had a stroke. I was the only one but then he spoke and I knew that I wasn’t alone. “It’s not movies,” I said. “It’s commercials.” He smiled.
People tell me things. It’s always been that way. If someone, nearly anyone, is around for long enough, they will inevitably tell me everything they know. Another attending noticed this once. She was trying to tell me about a patient or give me an order but caught herself halfway into a memory of her mother and summer mornings and June bugs. “It must be your face,” she said and looked at me curiously. “You look like you listen to me.” It was the first time that I’d heard something like that but it wouldn’t be the last. I learned how to put my listening face to practical use during medical school. All that you’re really doing when you interview a patient is asking them to tell you a story. All the patient really wants is for you to listen to them. That’s what we all want, isn’t it? It’s one of our most fundamental drives. To be seen. To be heard. To be understood.
I completed the first half of my training and moved on to a new program in a new city. I thought I could leave bad memories behind but the specter of illness is persistent. I was going to be a neurologist. I worried that someone somewhere would look at me in my white coat and see me and my mismatched hands and my crooked mouth and see me, injured and small, in my bed in the ICU. So I told them. I took my story into my hands, shared every piece of it. Used my voice. My words. I saw the girl in the white coat and I wanted to empower her. I saw the girl in the ICU and I wanted to protect her. And I saw the girl in recovery, exhausted and isolated. I remembered how it felt when her attending shared his story. That sense of community. That overwhelming relief. I saw that girl and I wanted to hold her. I wanted to let her know that she would be okay.
“I had a stroke,” I said. “I had cancer,” I said. The responses were usually the same. An awkward pause. Perhaps an apology. If I went a little further, if I gave more of myself, then something else would happen. “I get so tired now,” I said. “My mother was exhausted all the way through treatment,” my co-resident said. “I used to be ashamed of my scar,” I said. “So did I,” the nurse said. She lifted up her hair and she smiled at me. Ran her fingers across the pink, puckered scar that traveled up her spine. I reached up and brushed mine. I shared my stories. I received others in return. We were compelled, I think, to make this exchange. There were stories about injuries, about illness, about operations, about depression, and mourning, and love. We’d pause when we finished sharing. We’d sit comfortably in the silence. We didn’t have to explain how we felt.
She warned me that she might faint on me and then she introduced herself. “Pardon me?” I said and I stared at her. I am never not confused. I was sitting on the floor in the back of the hall as I waited for the lecture to start. I pulled the strings that poked from my scrubs, pushed my pager deep into my pocket, and looked up when she sat at my side. She was wearing her white coat: brand new, starched collar, polyester, stifling, and stiff. She wore a new badge, looked half excited, half nervous, and entirely overwhelmed. Sweat beaded at the edge of her brow. The air conditioning was always broken. It was too hot or too cold and I knew that because I’d been around for a while. “Hot in here,” I said and then she gave her warning. “I had a condition,” she said. “Oh yeah? Me too.” I gave her my best crooked smile. “A brain tumor,” she said and she crumpled a bit. She looked young and timid and small. “I had a stroke,” I said, “But cancer came first.” I turned my head to show off my scar. She brightened and showed me her own. I told her my story. She told me hers. I sat back. I listened. I understood.
Diana Cejas is a pediatric neurologist and writer in Durham, North Carolina. Her essays and other works of non-fiction have appeared or are forthcoming in The Iowa Review, Passages North, The Journal of the American Medical Association and Neurology, among others. She is on Twitter @DianaCejasMD and blogs at DianaCejasMD.com.