Illness is natural and inseparable from human life. In interacting with people with chronic illness, we have come to realize that, although disease may be inevitable, there is great variability in how illness affects one’s sense of self. The photographs on the cover of this issue were inspired by the patients who kindly volunteered to share their stories with us.
We used tulle as an analogy for the body and the soul: We are colorful, we are shapely, we are different. We are dynamic and ever changing. Just as we are the product of various upbringings and life situations, the terrain in the photographs varies tremendously (more photographs in this series can be seen at http://sowyang.com/tulle/). The wind, vegetation, and sunlight affect both the creation and perception of each photograph, just as our backgrounds—social communities, homes, and more—shape who we are and how our lives unfold. Inevitably, part of this background is the experience of illness.
The warm embrace of an early sunrise, the deep breath of the wind, the shifting sand below our feet: These are all ways in which we interact with the world around us, ways in which our environment shapes our very sense of self. How we react to both small and large obstacles—whether unanticipated, like the wind, or unforeseen, like a hidden tree branch—is how we make these experiences our own.
The photograph, the end product of the photographer’s actions, is like a reflection on one’s life. Like life, the photograph is subject to both nature’s and the individual’s will, sometimes working in harmony and sometimes clashing in discord. Creating these photographs, we had an initial vision for the tulle’s path. However, regardless of the intended trajectory, the tulle was subject to an unanticipated gust of wind, or an accidental snag on a tree branch. The tulle was bent, twisted and distorted, directed against its will and against our initial vision, just as we often are in the face of illness. At times, the image was simply unpleasant: Under the sun’s harsh glare, the tulle became convoluted and twisted within itself, caught and ripped on a tree branch, or lost in the landscape. We can adjust and adapt, making the best of the situation, untangling the tulle and moving a branch out of the way. But we cannot shift a tree or a boulder, or change the landscape itself. The tulle was manipulated by the wind in ways no human force could ever achieve, or even anticipate. Natural elements, in combination with our initial and adjusted visions, largely determined the overall shape of the tulle and the aesthetic of each photograph. How we react—or do not react—to both small and large obstacles is how we make these experiences our own.
The image is unique and spontaneous, and in this lack of predictability and control, there is beauty. As a collaboration between nature and human will, not all of these images are aesthetically pleasing in the traditional sense, just as our lives may not be ideal. Illness is universal, and humans are imperfect. We, like the tulle, are dynamic and ever-changing, even if things do not go as planned. In the face of adversity, we adjust, adapt, and may even thrive.
Acknowledgments: A version of this essay first appeared on http://sowyang.com/tulle/. S.Y. Owyang and T.K. Paul would like to thank the patients they spoke with for their stories and insight, Fenn Hoffman for his photography assistance, and Dr. Aarti Raheja and Dr. Arno Kumagai for their mentorship and advice.
Stephanie Y. Owyang, Trisha K. Paul, Aarti Raheja, MD, and Arno K. Kumagai, MD
is a third-year student, University of Michigan Medical School, Ann Arbor, Michigan; e-mail: email@example.com.
is a third-year student, University of Michigan Medical School, Ann Arbor, Michigan.
assistant professor of pediatrics and instructor, Family Centered Experience Program and Longitudinal Case Studies Program, University of Michigan Medical School, Ann Arbor, Michigan.
was professor of internal medicine and medical education and director, Family-Centered Experience Program and Longitudinal Case Studies Program, University of Michigan Medical School, Ann Arbor, Michigan, at the time this was written. He is now vice chair of education, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.