“I don’t want a tube down my nose. I’ve been through it before and I don’t want it again.” Charlie turned his head away from the team and crossed his arms in defiance. “I’d rather be sick.”
I looked at the intern, who looked at the resident, who just said, “Well, think about it. We’ll be back in the afternoon.”
“I’m also hungry and haven’t eaten in days,” Charlie added.
“Maybe some food today, but no promises,” said the intern as we shuffled out of the room.
Charlie was a teenager who had grown up in and out of hospitals. From a young age he had been poked and prodded, tested for a number of diseases, all yielding experimental treatments. He had been hospitalized countless times and met countless doctors, each time, faced with a new barrage of tests and potential cures. So far, he had been sorely disappointed.
Later that day Charlie’s condition worsened and he agreed to let us perform a few procedures. I could not help but notice his disappointment as he grudgingly relinquished what little control he had to keep us from doing unpleasant but necessary things. He asked again for food. I, not having the heart to tell him that it would be at least a few days more, told him I had to check with my attending.
“But I’m starving …” his voice trailed off as I left the room.
That night, my own stomach grumbling as I left the hospital late, I thought about Charlie and what it is really like to be a patient. To go for days without food, sometimes with no good explanation. To wake up every morning to needle sticks for blood draws. To give up control of one’s own body to painful treatments and procedures because the doctors are supposed to know best. To be seen and talked about as a medical mystery rather than a suffering human being. In the daily grind of chaotic hospital life, I let diseases define the patients instead of the other way around. I started to lose sight of patients as individuals with pasts, presents, and futures, and with hopes for their lives beyond this hospital visit where their paths cross with mine.
When I saw Charlie the next morning, he was quiet and tired. He had a rough night and was in no mood to entertain a medical student exam. I was about to give up when I noticed a sketchpad on his tray.
“Can I take a look at this?” I asked, almost expecting him to refuse.
To my surprise he nodded. I picked up the book and started flipping through page after page of intricate pencil sketches of superheroes battling villains. The book read like a comic book complete with a storyline, portraying a fantasy world where good always prevails over evil.
“I can’t get out much due to, well, this,” Charlie said pointing down at himself. “But I’m good at drawing. I’m going to publish this someday,” he said proudly.
“Who is this?” I asked, pointing to the main character, a muscular superhero featured in every page.
“Me!” Charlie exclaimed animatedly, as if it were obvious. We spent the next thirty minutes looking over his work as he excitedly chatted about plot twists and character development. He spoke more to me that morning than he had to the entire team in the past week combined. And I left his room that day with new understanding about a teenager who, despite struggling with a lifelong illness, dreams about being the strong healthy superhero who saves the day. For the rest of Charlie’s stay, we had a special bond. I took the time to get to know him as a person rather than an interesting medical case, something that rarely happened for him in the hospital.
To me, meeting Charlie was a reminder that each patient is still human and deserves to be treated as such. No, that patient over there is not “Mr. Rare Disease,” but an artistically gifted teen with a knack for weaving fantasy stories. At the end of the day, our job is to heal the patient, but there are many types of healing, not just of the physical body, but also of the soul. There is no reason why physicians cannot take part in that.
I like to think of Charlie’s superheroes whenever I meet new patients. I imagine that each patient has a superhero of his or her own inside, fighting against disease, fighting for a chance to live. We’re all playing for the same team, battling a common enemy. And I just hope that in real life, like in the superhero movies, good will prevail most of the time.
Name and other details changed to protect patient privacy.
Joyce Ho is a medical student who blogs at Tea with MD. She can be reached on Twitter @MedGlobalHealth.