January 17, 2013 | 5
“I woke up forty days ago,” began a 922-word email sent to me shortly after I shared a story about a demented patient continually waking up to discover that he had had a leg amputation. I read it and re-read it, astounded by the story that was over twice as long as my original post. I found myself wordless in response, unable to express what I felt to this stranger who chose to bare such an intimate experience in such great detail to me over Gmail.
Where I work, sharing with strangers isn’t often a choice and it doesn’t often occur just once. “I know you already told your story in the emergency department and I read the note they wrote, but I’d like to hear it again to make sure we have all the information we need,” I say to the sick new person in front of me. So they oblige, putting faith in a system that exchanges medical narratives for care. Sometimes, bound by time, I cheapen patients’ words. I’ll walk in, ask a question, and later find I answered it in a previous note. We depend on the patience of our patients: to re-tell their stories, from the top, once more, this time with feeling.
I had a patient for whom words did not come cheaply. A degenerative disease had stricken him with non-fluent aphasia–able to comprehend speech but nearly unable to produce it. Since he was also paralyzed, written communication wasn’t an option. I learned quickly that asking him a standard open question: “What’s wrong?” caused him to lapse into a frustrated silence rather than package the depths of his frustration into a few words. I tried not to put words in his mouth, molding my questions to allow for brief answers that weren’t constrained to yes or no. “Do you feel better, worse, or the same today?” “Who’s visiting later?”
How do you speak when you have a literal word limit? I learned the obvious: concisely. Over the course of a fortnight, we probably exchanged less than 922 words. Nothing was minced.
“That guy’s,” he struggled to wrap his lips around the description, “an asshole.”
Once I heard a scream coming from his room, which drew me in to find him moaning in pain. “I don’t understand,” I mused stupidly. “You can’t use the call button for the nurse. How do you usually get her?”
“I yell.” Two words and a sadness in his eyes that I’ll never forget.
I finally responded to that email after I stopped being intimidated by word count. Using luxuries of length my patient couldn’t, I conveyed the sentiment he expressed to me on the last day of my rotation: “Thank you.” His brevity was powerful. The email’s verbosity was powerful. Quantity is a useless proxy for meaning.
When I started medical school, I found myself compelled to share stories with strangers. I also found that the most gratifying responses weren’t necessarily the most congratulatory ones–they were the ones in which strangers found themselves compelled to share stories back at me.
I wrote an article for the Los Angeles Times during my first year, in which I described the experience of dissecting a cadaver. In return, I received emails: from those who were donating their bodies to science, from those whose loved ones had done so, from those who had trained with such bodies, and from those who had nothing at all to do with any of it.
Similar feedback came with other pieces. The tension between expressing interest and expressing compassion. A psychiatry interview. “Difficult” patients. My very first post from over two years ago. I read and I feel grateful. Humbled. Privileged. Richer.
I got close to that patient’s family, particularly his wife. She told me that he had been a great public speaker. He had given a talk to a lecture hall of Harvard medical students on the experience of being a patient. With more details and some math, I realized I must have been in that audience. I couldn’t recall it. Irony heaped upon irony.
“First he was scared that no one would show up. Then he was scared because too many people showed up!”
Something had compelled him to share intimate details with strangers. There were no obvious or direct benefits. Instead, there was faith–that something good could come from it.
I study radiologic scans generated in black and white and pathology slides stained in pink and blue, while patient stories fill in the other hues. With this blog, I hope to share some experience, some evidence, and some other. I hope to hear the same from whomever cares to share few or many words with a stranger. I have faith that something good can come from it.
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