Commentary on “Greener, Brighter”

Unless we ourselves have experienced chronic illness, we cannot possibly understand the depth of its effect on patients. “Greener, Brighter”—a poem about the challenges chronic illness presents and the difficult adjustments often required of patients who live with such illness—arose out of our experiences in the University of Michigan Medical School’s Family Centered Experience (FCE) program. The FCE program allows medical students to consider the patient perspective of illness through a longitudinal lens. Students such as ourselves partner with an individual (and sometimes family members) living with a chronic disease, and together we explore themes such as breaking bad news, communication in the medical setting, and the stigma associated with a diagnosis. The patients and their families serve as mentors as we students seek to understand how illness affects all aspects of their daily lives. At the start of home visits with the volunteer families, we, in our naiveté, expected stigma and hardship to dominate the conversation. As we took the time to know the volunteers, we realized there was more to each story than just survival. The volunteers’ stories demonstrated that the struggles were not what defined them as individuals. Instead, they allowed the challenges of chronic illness to strengthen their identities, enabling them to adopt new roles that brought a deeper meaning to their experiences. “Greener, Brighter” acknowledges the initial challenges that follow a life-changing diagnosis, but ultimately illustrates the patient’s acceptance of these challenges and perseverance through chronic disease. The opening lines convey the feeling of despair that can accompany the early stages of chronic disease, especially the realization that a cure is not always available, even if treatments are. Individuals who live with chronic illness must endure not just their illness but also the burden of going home and adjusting to a new way of living. Things that worked smoothly before are now “too straight” or “too high.” What was familiar is now a daily reminder of disability, and activities that were previously taken for granted are now difficult. One of the patient volunteers we met experienced a devastating car crash that left him paralyzed below his arms. He has since required the assistance of nearly a dozen people in performing the basic activities of daily life. Patients’ difficulties adjusting to living with a chronic disease come from many fronts, whether explaining limitations to “curious eyes” or facing the judging “gavel” that is the stigma of disease. Ultimately, the volunteers we worked with all reached a moment when they realized that these setbacks, constraints, and judgments did not define their lives. The patient with paralysis has since adapted to his new life and now can operate a car independently with hand-controlled devices. Another patient volunteer now works to empower patients in their relationships with their physicians. In this poem, the patient asks the reader to “see me for who I am, not what I seem,” and to “hear the strength in my voice.” Readers must “open [their] eyes,” looking past “the patch of land broken by the plow of fire” to understand that disability does not necessarily indicate weakness or limitation. Just as one appreciates a forest emerging “greener, brighter” after a fire, the reader recognizes the patient’s triumphs over the challenges of illness. These triumphs are part of a larger story, and we by no means wish to downplay the continued hardships that individuals with chronic illness face, nor are we implying that everyone has a happy ending. Patients still need to adjust to a changed life. They have to adapt to the chair that “stands too straight” and to the counter that “sits too high.” The “crooked chair” and the “shorter table” become a part of the patient’s home—not the definition of their identity. Patients’ abilities to accept hardships, adapt to changes, and ultimately reaffirm their own convictions inspired us to write this poem as a tribute. The patient volunteers who worked with us inspired an original piano composition, which we present in synchrony as a lyric video to demonstrate the narrative of the patient experience. The piece begins quietly, reflecting the sense of loss that comes with a diagnosis. We draw in the viewer’s curiosity with the ominous “stiff white coats” and tentative progression of the music accompanying the poem’s first two stanzas. As the poem transitions to patients’ appreciation of their new identities, the music builds to echo their strength and resilience. In particular, the lines “My roots are still here / My heart is still here” are placed in conjunction with a powerful key change in the music. After a second, more meditative section, the common motif plays with confidence, reflecting the movement past hardships to resilience as the patient “[steps] away from the caverns, into the sunshine.” Acknowledgments: The authors would like to thank the patient volunteers for their generosity in sharing their stories of battling a chronic illness. The Family Centered Experience (FCE) program was an extremely valuable aspect of the authors’ experience as first- and second-year medical students, and working with the patient volunteers has served as humbling preparation for a career dedicated to patients. The authors also acknowledge Dr. Arno Kumagai, FCE course director in 2015 when this commentary was written and now vice chair for education in the Department of Medicine at the University of Toronto, for reviewing their work and for his support and encouragement. Rachel R. Bian,* Andrew H. Zureick,* Robert S. Porter,* and Jennifer N. Stojan, MDR.R. Bian is a fourth-year medical student, University of Michigan Medical School, Ann Arbor, Michigan; [email protected]A.H. Zureick is a fourth-year medical student, University of Michigan Medical School, Ann Arbor, Michigan.R.S. Porter is a fourth-year student, Medical Scientist Training Program, Department of Human Genetics, University of Michigan Medical School, Ann Arbor, Michigan.J.N. Stojan is an assistant professor, Internal Medicine and Pediatrics, University of Michigan Medical School, Ann Arbor, Michigan.

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