By Annie Robinson
Bradley Lewis - psychiatrist, philosopher, and professor - has spent his career in the classroom and clinic attending to stories of health and illness. Two years ago, Brad’s lifelong inquiry into the crucial dimension of story in illness experience took an unforeseen turn. He entered the medical system as a patient when his eyesight began to fail, gradually but persistently, which led to a diagnosis of cataracts.
As Brad’s eyesight worsened, he grappled with the distinction between being viewed by society as able-bodied or as disabled. When he could no longer see the slides in faculty meetings, or see his students as well in the classroom, or read materials as quickly for committee meetings, he better saw how “unsympathetic the normative world can be” to the loss of functions we often take for granted. “It’s a big deal to have to navigate that.”
Brad trained in psychiatry in the early 1980’s, but felt dissatisfied with the field’s heavy emphasis on biology over biography. At the time, psychiatry was transitioning from a psychoanalytic perspective to a biological one. He recalls feeling “like they both had something valuable to say, but the two messages weren’t integrated at all...it left us to put it together as best we could.” So he started taking classes in the philosophy department to explore the mind/body connection. As he became more involved in the arts, humanities, and cultural studies, he realized that psychiatry was under-emphasizing what really matters to people when they’re going through difficult times: story.
Brad completed his psychiatric training, which he augmented with a Ph.D. in the humanities. He has written and taught extensively on the intersections between medicine and narrative, and believes stories must be prioritized as a crucial dimension of healthcare. Stories are powerful tools that can aid in healing because “stories are beyond right or wrong. They’re metaphorical.”
Soon after receiving his cataracts diagnosis, Brad opted for surgery. This surprised him, for he tends to challenge the common impulse to adopt a highly medicalized approach. In both academic and clinical settings, Brad encourages individuals to ask: “What kinds of alternative ways to telling this story might there be? What languages make sense to you?” He believes “it’s okay if we combine languages - spiritual with biological, for example. There are all kinds of stories that we can bring together to make sense of not only the past, but the future.”
In his own case, the disease model that involved seeking an immediate, surgical solution to the problem felt appropriate to him. However, he still strongly feels that “if someone doesn’t like using disease models and metaphors, that’s fine. There are lots of other models and metaphors. And if someone finds disease models and metaphors helpful, that’s okay, too.”
For clinicians working with their patients, “it’s about meeting the patient where they are, offering them language and support that best serves the healing they have to do.” Although he adopted the disease model language and approach in his own case, Brad still felt at odds with his care providers. “The doctor I finally found really just treated me like a machine. She couldn’t relate to me as a person at all, even though I guess she was one of the best.”
Like so many patients, Brad felt apprehensive entering the medical system “because a lot of people are trying to make a buck out of it. They want to sell you more than you need. And any kind of rating system is hard to make sense of. They are biased towards values that I don’t particularly share. I had to do a lot of work to find someone I thought could have a conversation with me.” And he knows, from his scholarship and clinical practice, how imperative it is for a patient to work with a caregiver who can engage with their situation as a story.
Brad has written extensively about narrative medicine, a field that examines how to be sensitive and attentive to stories in healthcare. He sees story as functioning in multiple ways: “Narrative takes a whole bunch of things that don’t seem to fit together - like our body, our illnesses, our dreams, our childhood, religion and spirituality, culture - and allows us to tell stories that bring all those variables together. Story seems to be central in helping people understand themselves in time and to put their life in perspective with a variety of different variables that are influencing them.”
Brad believes that “the practice of collaboratively telling stories in the clinical setting empowers both people in the room - clinician and patient - to begin to weave those possibilities together in a way that makes sense to them.” But the stories he brought to the providers he met with about his cataracts were not well received.
Near-sighted all of his life, Brad thought he might want to correct for near-vision. When he proposed this idea, it “befuddled” his doctor and the team because it meant he would still need to wear glasses. They shut down his request to explore this possible unfolding of his story, which caused him to once again feel outside the norm and isolated.
“So then I had to get support from friends...people who had personal experience and could help me navigate it and keep me company so I wouldn’t be all by myself with the clinical team that was so sure of itself.” Brad strongly recommends others follow suit by seeking support from alternative sources. “A lot of people who are dealing with the healthcare system need friends with them in the process. Bring comrades who’ve been through it too.”
Ultimately, the surgery was successful, and Brad accrued insights into the patient experience he hadn’t before been able to grasp so intimately. “Your personal experience matters. You’re not just a machine. You have preferences. You have to grieve for different things. You have different values about what you want. Medical decisions are personal decisions, they’re not just medical decisions, not something you can read off a medical protocol. Each person has different angles about what they care about and how they want to approach it.”
More about Brad Lewis:
Bradley Lewis MD, PhD is associate professor at New York University’s Gallatin School of Individualized Study. He has affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. Brad writes and teaches at the interface of medicine, psychiatry, humanities, and cultural/disability studies. He is an associate editor for the Journal of Medical Humanities and his recent books are Narrative Psychiatry: How Stories Shape Clinical Practice and Depression: Integrating Science, Culture, and Humanities. His current research is devoted to the ways art, politics, and spirituality impact human flowering.
More about Annie Robinson:
I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.
I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.
I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at firstname.lastname@example.org.