Something Needs to be Said

July 2019

I reach for a hospital pillow and today’s newspaper: I stare at the headline and recall Nora’s nurse’s reaction from this morning when I read it to her: UCSD GETTING ANOTHER $100M FROM SANFORD Latest gift for study to improve physician empathy, compassion. “I don’t care how much money you throw at that; it’s never going to change.” She said with a lighthearted laugh.

I position the pillow behind my back, and glance at Nora, my 5- year-old daughter, asleep in her hospital bed. Even from across the room, I can hear her chest rattle with each breath, see the redness in her cheeks — flushed from a fever and the round flesh colored stickers that hold an oxygen cannula against her cheeks and nose. It’s a familiar picture — one Nora and our family have been unable to escape for months. I shift my gaze out a window into the hospital hallway, just in time to see the resident doctor from Nora’s inpatient team — the one I’m hoping to avoid— walk by. I quickly flip the newspaper and stare at paragraphs of words, without reading them, to avoid the possibility of eye contact. I think to myself, I probably owe him an apology…. I set the paper down and reach for a second pillow to hug tight across my chest.

I replay yesterday’s conversation in my mind; we were standing on opposite sides of Nora’s railed hospital bed, and the conversation wasn’t going the way I wanted or anticipated, nor were the goals for this particular hospital admission. And, if I was being completely honest with myself, neither was my overall life. The resident, sensing my frustration, said calmly, “I can’t imagine what it is like for you to be here. To do what you do every day…” Suddenly, I was upset, and just as suddenly, I thought I might burst into tears. But, I didn’t. Instead, I spoke: “Don’t say that. Don’t you dare say that.” I felt my throat harden and I continued, “Yes, you can imagine. You’re here every single day, aren’t you? Look around you — use your imagination! It’s so isolating for families when you say things like that — you are some of the only people in our lives who actually can imagine. Don’t take that away from people.”

I watched the resident look down at Nora, who was pointing her ballerina toes in the air, before he looked down at the floor. We stood in silence and again, I felt like I might cry, but this time, instead of sobs or lashing out, I retreated — far and away to safety — to internal, quiet, robotic numbness — where tears don’t exist, but neither do smiles or laughter. Perhaps some people call that coping.  

I sit up quickly and push the pillow, and the memory aside, and pick up the newspaper to distract myself: “The gift is among the largest of its kind ever made in the U.S. and involves an area of science that’s only recently acquired the tools to explore the matter deeply.” How do they plan to explore, or even define compassion and empathy? And how are doctors considered “experts” in defining compassion and empathy? I would imagine the more likely experts would be those who are well accustomed to being in a position to actually need, yearn for, want or receive physician compassion and empathy. People who can imagine.

My mind shifts back to earlier in the week — I had fallen asleep, using my hands as a pillow, on the blue couch and woken up in a groggy blur to an EVS (Hospital Environmental Services) member in dark blue scrubs, standing across the room — staring at me. She seemed like she needed something, but before I could sit up, she whispered, “Can I get you a pillow?”

“You don’t have to do that,” I told her groggily as I put my head back down.

“I’ll be right back,” she said. 

“Okay,” I replied before drifting back to sleep. 

I woke up to two crisp pillows sliding under my head — I lifted my cheek a fraction of an inch as the woman gently arranged them. I remember noting her perfectly manicured, colorful, acrylic nails before drifting back to sleep. Later in the week, I found her in the hallway: I thanked her for bringing me pillows and then, quite suddenly, I felt compelled to ask her: “What made you put the pillow cases on those pillows? I don’t think anyone here has ever put a pillow case on a pillow for me. Ever. Nobody does that.”

She looked like she might cry, and then quietly said, “Actually, I just know what it’s like to sleep on those couches.” She went on to explain, “I stay here with my little brother at night so my parents can go home and take care of everyone else— I tell them to go home because I’m here anyways.”

I told her what a gift that was for her parents, but the more I spoke the more she looked like she might cry. I quickly told her, “I just wanted to find you, and thank you for bringing the pillows! It was so nice of you to do that. And your nails are so cute.” I watched her entire face brighten as she held her hand out and we admired them together “I love them!” I told her before we said goodbye and walked opposite ways down the hospital hallway.

I continue to read the article. The writer is now describing physician burnout, and the urge to apologize to the resident surfaces again. I close the pages tight together and stare at the door to Nora’s hospital room Maybe I need to apologize.

Yesterday, after I lectured the doctor and he left, I sat across from Monty, or Dr. Montague, Nora’s godfather, on the blue couch while Nora sat up in her hospital bed reading a book with her friend and dance buddy Grace. I recounted the entire story, quoting both myself and the doctor, and concluded by asking Monty if he thought I needed to apologize — but, before he could say a word, I threw my head back, rolled my eyes and crossed my arms across my body, and said, “Monty, I’m just so exhausted by the lack of creativity and imagination around here!” Monty repositioned himself on the blue couch and said with an amused laugh, “Jesse, I think he was trying to empathize with you — he’s a resident — he’s still learning.” 

I reflect back to the awkward, emotional silence at Nora’s hospital bedside, after I told the doctor exactly how I felt about the phrase “I can’t even imagine…” from him, or any doctor for that matter. I think back to how I quickly retreated, into quiet numbness until the doctor eventually broke the silence and said the only sentence, in the entire world, that could possibly turn the atmosphere of Nora’s hospital room towards warmth and invite me back, away from quiet numbness: “I’m told Nora likes to dance.”

I begin to wonder how the Sanford study will define empathy and compassion. At some hospitals, they call it “care and understanding.” But somehow, it feels deeper than that. Probably because receiving empathy and compassion — from anyone — can feel a lot like receiving love: an EVS worker who “knows what it’s like” slipping pillows under a mother’s head as she sleeps, or a resident doctor, humbly accepting awkward and emotional silence from an about-to-cry-mother.

My phone buzzes and lights up with a message from my aunt, “Tia the Magnificent.” I wonder if she thinks I ought to apologize to the resident. I open her text, and read her reply to my written account of my conversation with the resident. “Who apologizes for teaching lessons? Hard lessons?  You felt badly because you were pushing societal rules of how we are to speak to those in power. Good for you.”

I smile, God I love her. I set my phone aside and continue to read the paper as I think to myself: I will not be apologizing to the doctor. But I will thank him, for taking great care of Nora this week and for trying to empathize with me. And, I have half a mind to write to the editor, or to Sanford. Something still needs to be said.