From the outside, we only have a super ficial view of someone else’s illness. We see the aftereffects of treatment and chemotherapy, disability in the form of wheelchairs and crutches, and health regained during recovery. What we often do not see is the struggle that ensues after a life-changing diagnosis, the shattered identity that must be reconstructed. Chronic Illness: From Shattered Identity to Rebuilding a Life depicts the process of rebuilding a sense of self as a person learns to live with chronic illness in the face of ongoing adversity.
From afar, one sees two hands clasped together in hope and success. The hands are raised confidently in a sign of triumph and are depicted in color, while the wrists and arms are in black and white. As one gets closer, it becomes apparent that the image is constructed by individual hole punches, with each pixel showing different pictures and words associated with the process of rebuilding an identity.
The arms are formed from black and white pixels that depict many different aspects of illness. Pictures show prescriptions, surgical procedures, lab tests, x rays, and diagrams while words describe various challenges and struggles related to chronic illness, such as “pain,” “loss,” and “stigma.” On the wrist is a bright green hospital band that identifies this person as a patient. The bright color is the most prominent feature of the arms and illustrates the stigma often associated with chronic illness and the struggle that each patient faces to overcome categorization and ostracism. The barcode represents lost identity; the medical record number is the only distinguishing feature of this person suffering from chronic illness.
There is a transition at the wrists. The words and pictures no longer describe the distresses of chronic illness or the daily trials this person confronts as a consequence of disease. The pixels begin to show how this person is rebuilding a life with the support of family and friends, religion, faith, and a positive outlook. Finally, the hands show the rebuilding of self—a new identity created after learning to live with a chronic illness and making the decision that the disease will not define the person. At this point, the transition is complete. There are no more black and white images or words making up the hands, only flesh tones. Disease no longer identifies this patient; he or she is a human being who has succeeded in regaining a sense of self.
This imposing 40″ × 60″ collage was created from over 8,700 hole punches and is based on the stories and perspectives from four different families that volun teer as a part of the Family Centered Experience at the University of Michigan Medical School. This program provides an opportunity for first-year medical students to be paired with volunteers who live with a chronic disease. What is truly unique about this program is that students follow these volunteers over the course of their preclinical training, visiting the families at their homes and accompanying them to doctor appointments. Volunteers come with a wide range of ages, illnesses, and backgrounds, but all have a desire to share their experiences with the students. Students pair up with several classmates to create an interpretive project based on the common themes they encountered with their families. This project, Chronic Illness: From Shattered Identity to Rebuilding a Life, is based on the students’ thoughts and interpretations of visits with their volunteers during their first year of medical education.
Acknowledgments: The authors would like to thank Aki Yao and Marilyn Mason for their expert photographic assistance, Heather Wagenschutz for assistance with the project, and Dr. John O’Brien for many important discussions.