We're Putting Narrative Back into Neurology, Starting with You. Tell Us Your Story
By Sara Manning Peskin
February 21, 2019
Article In Brief
A neurology resident found that writing and sharing the experiences of her patients helped bridge the isolation that can come in while working in the ward. Now she is inviting other neurology residents and fellows to do the same.
I spent 15 years in basic research, trumpeting the value of patience and the payoff of publication. I had initially dreamt of posting my name outside a crowded row of laboratory desks cluttered with Erlenmeyer flasks. The smell of dimethyl sulfoxide would waft through the air. A row of old laboratory notebooks, pages crunchy with spilt reagents, would sit on the shelf.
Partway into my MD-PhD program, I realized I didn't enjoy science anymore. I cleaned out my desk and returned to clinical rotations. For three years, I searched for something to replace the laboratory. I tried various accoutrement to clinical medicine: epidemiology research and translational research. I immersed myself in television shows. I took up running.
I discovered the companionship of writing during the reclusive night shifts of internship. The call room where I wrote my first article had two black couches clad in peeling pleather. The seating was so worn that the cushions could swallow you whole like a venus fly trap if you put your entire weight in them. Between phone calls from nurses, I typed a piece about a friend who had fled Darfur. I posted the article on a blog, then started working on another piece.
Slowly, I began asking patients and their families if I could interview them for articles. I drove to another state to interview a woman whose husband died from Creutzfeldt-Jakob disease. Through her answers, I began to understand the effect of chronic loss.
In the hospital, I saw acute pain marked by shock and adrenaline. I watched people drop everything and come to the bedside. I never saw the recurrent trauma of missing someone. I didn't see what had been left behind after my patients died. Interviewing people after discharge afforded me the chance to discover an epilogue to the hospital admission. I'd been missing the second half of the story all along.
One summer, I interviewed a man who suffered from progressive encephalomyelitis with rigidity and myoclonus. The man had survived many weeks in the intensive care unit, then several more in a rehabilitation center. He'd recently asked his doctor a question about what to expect with the disease. The doctor, a brilliant physician and a world-renowned expert, admitted he didn't know.
“He's the smartest guy we've ever met,” the patient said of his doctor. “If he doesn't know, it's scary.”
The man explained that there's a loneliness in rare diseases. Aside from not being able to predict what was to come, there was a solitude that comes with not knowing anyone who has had the same experience. Retelling his story relieved some of the isolation, the man said.
I attended a talk last year where the speaker lamented the loss of narrative in medicine. She recalled reading a hospital admission note composed exclusively of numbers and abbreviations. The patient had been reduced to his disease.
In the time-limited environment of inpatient services and clinic, it's easy to forget there is value to patient narrative beyond diagnostics, treatment, and billing. Tedious documentation and heavy workloads can bleach the doctor-patient relationship of empathy. Writing about patients has taught me to reconstruct the illness experience, to raise patients off the page and into a three-dimensional existence. I learned to identify with patients, to see them as dynamic people. Stripped of white coats and name tags, armed only with pencil and paper, we are practicing an art that has existed since the beginning of time: humans helping humans.Here, at Neurology Today, we'd like to create a space for other residents and fellows to share their stories.
We'll make it easy for you. If you'd like to write a piece yourself, we're currently accepting pieces of 500-1250 words. If you'd prefer for one of our writers to tell your story, just submit a short statement, no longer than 100 words, about an experience or perspective you'd like to share with our readers. Tell us about a patient encounter you can't forget, a lesson learned from a colleague, a conversation you wished had gone differently—anything that has stayed with you from your day, week, or month. And feel free to weigh in on your residency or fellowship experience and concerns, including but not limited to, residency programming, work-life balance challenges, and life in the hospital/clinic.
Send your 100-word statement or your completed article to NeurologyToday@wolterskluwer.com. We'll have one of our writers reach out to you.