Let me tell you a story

Every year, I teach Medical Neurobiology to a new class of medical students. I introduce myself and immediately tell the class, “I am not a physician. I do not have a MD. I have a PhD. But, I am a patient, just as you are, and just like the people you will serve when you are physicians.”

For those of you unfamiliar with medical education in North America, a student in the first two years of medical school learns lots of classroom knowledge but does not actually go on the wards to take care of people. Therefore, these students are still more patient than physician.

The one thing that I do for the students that I am most proud of is to keep them grounded in the patient experience – remember I am no more and no less than a highly knowledgeable patient. I want my students to be responsive, caring physicians that serve their patients. I want to be that teacher that inspires them to treat not only the pathology but the impact of that pathology on a person’s life. I communicate the patient experience by telling stories.

Stories are an important way to keep physicians-in-training in touch with the patient’s perspective. I can tell stories of my own illnesses that involved the nervous system. One that I often tell is a close encounter that I had with confusion or disorientation. I had just flown home from Europe the day after I had shared a room with a snorer whose metronomic snores I was compelled to track through the night. I think I was continuously awake for about 40 hours. I arrived back home and immediately got into bed. I instantly fell deeply asleep, only to be awakened by a ringing phone. I picked up the phone and a voice said hello and asked, “Is Gisèle [my spouse] there?” My mind was a blank. Hmmm, I thought, “that is a very good question.” At that moment, I had no idea who Gisèle was. Nonetheless, I wanted to be helpful to this friendly voice and so I patted the bed beside me to see if any person was there. I then reported, “No, no one seems to be here.” The caller was my sister-in-law who eventually found Gisèle, who was indeed on a trip. My sister-in-law told Gisèle, “I think Peggy is taking heroin or something.” Of course, this is now something to chuckle over but I truly value the experience. It brought me a first-person understanding of how it feels to be confused. Then it went away. Insight without lasting repercussions. All good.

Luckily I have had few illnesses in my life and so I depend mostly on the stories of other people. I talk to people – friends, family, students, acquaintances, and complete strangers. Once I was in line at the airport and the woman in front of me had a cochlear implant. I could see it peeking out from her straight brown hair. Then I watched as a TSA agent talked to her without facing her. She didn’t know she was being talked to and the TSA agent began to get agitated, thinking the woman was ignoring him. I tapped her on the shoulder and told her that the TSA agent was talking to her. Afterwards, she and I had a pleasant ten-minute conversation about her hearing loss and ultimate decision to get a cochlear implant.

I listen in rapt attention to people’s stories, uttering only occasional prods when I sense the narrative slowing or the narrator tiring. I want to know all the details. How did you figure out something was wrong? “I fell.” “My daughter insisted I go to the doctor.” How quickly did you get a diagnosis? Sadly, the answer to this is often way too long, months or years. What did having a diagnosis mean to you? I have not talked to anyone who was not glad to leave limbo behind and have a diagnosis, even if they hated the implications of the diagnosis. How would you rate your illness on a scale of one to ten, with one being a curse and ten a growth experience? One of my friends rated his Parkinson’s as an eight or nine. Why? Because it brought him closer to his wife and made him more compassionate and ultimately, he felt, a better person. I believe that it is just as important that a medical student understand the wide range of human reactions to illness as that they understand the pathophysiology of any given disease.

My interest extends to the family members and friends of people with a misbehaving nervous system. I was once at a party and while people clinked glasses and chatted about their gardens and vacations, I talked to a man about his mother’s diagnosis with amyotrophic lateral sclerosis. I used all of my body language to keep others from joining our conversation; I didn’t want them to interrupt this intimate and invaluable conversation. I was successful and I heard how much he valued his mother’s diagnosis, devastating as it was at the same time. Before the diagnosis, everything was confusion and uncertainty. Afterwards, he said, “I knew what we were dealing with and I knew approximately how long we had. That enabled me to arrange my life to make the most out of what time remained.”

These stories have provided me with great insight to the patient experience and I hope that they stay with you as they have with me.

Featured image credit: Progress Clinical Medical by sasint. CC0 Public Domain via Pixabay.