What’s Right, What’s Wrong: Medical Charts as Narrative
We welcome guest blogger, Dana Grande. Dana is member of the PAHS community, is a mental health therapist, writer, percussionist, and improv theater performer. She lives in, works, and creates in Cleveland, OH.
Hello PAHS blog readers!
A week ago I had sinus surgery and septoplasty (realignment of the septum inside the nose). I feel like I got good care from the doctors and nurses, who listened, coordinated with each other, and explained procedures clearly. My pain level rates only about a “2” out of 10. I feel confident I will be able to breathe soon out of the right side of my face, for the first time in many years.
Not all my encounters with the medical system have gone so well though. There was the time my breast cancer type was misdiagnosed; the times doctors couldn’t find subjective data on a test, leading them to conclude it was all “just in my head;” there was the time a nurse called in the hospital social worker just because I was crying during a bad bout of flu.
For better or worse, I feel I can sum up my experiences with medicine as “disjointed,” “fragmented,” or “dissociated.” I picture three cars colliding at the same intersection; the fenders crunch, the headlights shatter, the windshields quake into glass crumbs, and the airbags bust out the dashboards. One vehicle is the body, the other represents illness, and the third represents the healthcare system.
Indeed, illness is a disruption; narrative medicine scholar Arthur Frank, author of The Wounded Storyteller, calls it “narrative wreckage.” Medical charts record mostly pathology, disease, and ruptures in the status quo. They almost never say what’s going well. True, we rarely seek care when we are well. My own medical chart features a detritus of diagnoses:
Malignant neoplasm of right breast
Obsessive-compulsive disorder
Subarachnoid hemorrhage of right parietal-temporal lobe
Obesity
Former smoker
Major depressive disorder, recurrent, moderate
Vitamin D deficiency
Common Variable Immune Deficiency
Still, I’d like people to know what’s going “right” with me. My kidneys and liver never gave me any trouble. I have strong bones and healthy skin, hair, and nails. I surround myself with supportive people. My cholesterol might be high, but my triglycerides are “normal.” As a mental health therapist, noting non-pathology is part of best practice. To not do so is to miss an important part of the clinical picture.
To be sure, documentation is not just for the patient; it is also for the insurance companies. Documentation also is an important legal aspect of healthcare. But I’d still like medical narrative (and charts are indeed part of narrative) to carry more well-rounded, human-focused, not-just-pathology-focused stories about a person. Storytelling creates and un-creates. Stories told over and over again can become part of one’s personal identity, for better or worse. My own medical story used to yield internalized narratives of fragmentation, of parts and pieces scattered on a highway. It is my own study of narrative medicine, and my own writing practice, that reconstruct other stories: I am not immortal, but I am strong. I can still feel continuity even in the presence of wreckage. My body lets me know when things are wrong and when things are right.
Today I woke up able to breathe about 50% out of my right nostril. I haven’t been able to do that in over a decade. I thank the medical system, with its surgeries, sutures, IVs, and medicines, for helping to make that happen. I also thank my body’s health-generating forces for making this newfound healing possible. As I continue to recuperate, writing helps me realize the presence and necessity of both knowing the problem and celebrating the rest of the story.
