I was warned about it before we walked into the room.
So when I did walk in, I made sure my eyes stayed focused on his eyes, my gaze high and attentive. I smiled, possibly more than normal, to make sure he felt comfortable. Like a puppeteer holding up his doll, I knew it wasn’t time for me to drop down my eyes yet.
The resident with me began the routine visit chatter. I politely sat next to her and the patient and continued to keep my eyes elevated. Ray, our patient, began talking, and I pretended to listen carefully to his complaints about dizziness and frequent falling.
I made sure he was on a focused train of thought, with his face forward as he spoke, before I finally let my eyes drop. I took in his right side. His arm started at a regular-sized shoulder, but it sharply thinned in diameter into an uneven stump with what looked like fingers and a protruding thumb that laid quietly mid-torso. The outline of his right foot through his jeans confirmed a similar deformity. I pulled my eyes back to focus on his face and found him unchanged, continuing to speak while looking forward, and I sat silently grateful he had not caught me staring.
As Ray told us about his complaints, I did my best to follow along as his story-telling jumped from last week to yesterday to three months ago, and his chief complaint of dizziness was tossed in with questions about his diabetes and his daytime sleepiness. Half my mind continued to listen, the other half wandered through the notes I had seen on his chart.
- in-utero thalidomide exposure
- released from prison after 13 years
- chronic hepatitis with liver failure
- chronic pain
- irritable bowel syndrome with fecal incontinence
- erectile dysfunction
A part of me felt a bit guilty for knowing this much about Ray. I had never met him before, but I knew about his bathroom and bedroom issues. And, I found myself fictionalizing the other bits of his story I didn’t know– I wondered if his congenital limb deformity left him insecure and hopeless, pulling him into IV drug use and legal trouble. I imagined him walking out of prison after more than a decade. Did he have new dreams and new goals, or a new attitude of complacency? And I was impressed he prioritized his sexuality, being open about his ED, despite everything else on his medical problem list.
Patients like Ray remind me how privileged a physician’s knowledge is. We’re allowed to peer in and poke through the secrets of our neighboring human beings. We see parts of their story that no one else can, and we’re allowed to ask questions and advise changes. The electronic medical record lets me know the details about Ray’s bathroom behavior and liver failure while he sits here chatting to me about his dizziness. The medical record tells me he’s a man of grit with few resources – living in a shelter, without health insurance, being fed through food stamps. In front of me, I watch this same grit, his quiet frustrations, as he tries to open the zipper to his backpack with his right limb. I debate on if I should offer to help or if that would be offensive or patronizing. I decide to wait a few more seconds before offering and act as if I haven’t yet noticed by keeping my eyes on the computer screen.
Thankfully, Ray gets the backpack open. He pulls out some medication bottles and hands them to me. This time, I have a reason to stare at his deformed limbs. The medical student in me is both fascinated and empathetic. His stump is irregularly shaped, and his fingers are oddly bent and twisted, making it unclear what is stump vs. finger vs. thumb. In the privacy of my own thoughts, I hear myself think ‘gross.’
I realize time is passing and hastily bring my eyes back up to Ray’s face. Our eyes meet, but this time, I feel guilty – he caught me staring.
Cia Bishop is a pediatric palliative care physician.
Image credit: Shutterstock.com