Journal of Bioethical Inquiry

, Volume 12, Issue 1, pp 33–49 | Cite as

Remembering Stephanie

Symposium
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Open image in new window by Charlee Brodsky

Stephanie Byram was my friend. She died of breast cancer at age thirty-eight on June 9, 2001. She lived eight years after the disease was discovered.

With her cancer diagnosis at age thirty, Stephanie’s life changed. She became more known to others than she would have otherwise. She always had a close circle of friends who were drawn to her because of her candor, her intellect, her impish humor, her steadiness, her sensitivity. But after her diagnosis, many more people knew of Stephanie Byram because of her willingness to share. Stephanie went public with breast cancer.

Stephanie called the work that we produced our “art project.” The work consisted of my photographs and her words, and it took many forms. We exhibited in galleries; published pieces in newspapers, magazines, and journals; produced a thirty-minute video with filmmaker Mary Rawson; and the Univeristy of Pittsburgh published the work as a book. The project garnered recognition and many awards.

Recently, I decided to look back at the work that Stephanie and I produced almost thirteen years ago. It was good to be with my friend again. In keeping with Stephanie’s indomitable spirit, she would want others to learn from her life, and as such, I offer this remembrance.
Stephanie and I started our project six months after her diagnosis. She had begun to heal physically, but it took time to reconfigure her new sense of self. I was pleased to learn that our project helped her accept the unexpected detour in her life. Some of the saddest photographs we made were in the beginning of our work. These images were about loss. Stephanie was a confident woman, engaged in and optimistic about life—she was working on advanced degrees, enjoying looking for a mate, and confident that children would be in her future. A cancer diagnosis derailed those plans.
Stephanie hated this photograph, but we always included it in our presentations. She knew it was important. I made this image during our first photo shoot. Stephanie asked if I wanted to see the scars. I said, sure, and she lifted her shirt. I asked her to hold the pose as I framed her chest. I purposely cropped Stephanie’s eyes out of this image. I wanted the viewer to see a female body transformed by a radical double mastectomy. Without Stephanie’s eyes, I believe viewers would feel less self-conscious about their curiosity. If Stephanie’s eyes were in the photograph, they’d see her. I wanted the photograph to be clinical and not laden with the emotions of loss.

Two weeks before hearing her diagnosis and dire prognosis, Stephanie and two other women graduate students won a campus triathlon. Stephanie was a fine athlete. For this event, she ran, another student swam, and another biked to their victory. After this happy experience, she went to a doctor to inquire about the pea-like bumps she felt under her arm. The doctor quickly scheduled a mammogram and a biopsy. Within two weeks of that triathlon win, Stephanie had her breasts removed.

Because Stephanie was open about her life, many people at Carnegie Mellon—where she was a graduate student and where I taught—knew about her illness and our project. We were invited to present our work to a number of classes. Our first presentation was to a colleague’s freshmen seminar. As we showed the photographs, the class went silent. We had forgotten what it was to be nineteen and a thin-skinned freshman. Most of those fifteen or so freshmen had not yet dealt directly with mortality.

We learned quickly to soften our presentation. In future talks, we told our audience at the start that they would see difficult images. Our project paralleled Stephanie’s life. The most horrific part of her illness was at the front end, and so, too, the front end of our photo story had the most challenging and sad photographs. We decided early in our work that we would contextualize the photographs with Stephanie’s voice. We did not want our work to be scary. Stephanie wanted to show how one could live well with breast cancer.

Venus

Of all our work, I believe that the image “Venus” and the photo session that it came from were the most important—for Stephanie. Stephanie was comfortable with showing her post-operative body to me and had no qualms about disrobing for my camera. One day, as planned, Stephanie came to my home. I had recently photographed my young daughter, backlit, against translucent shades in my bedroom. Appreciating the beauty of that diffused velvety light outlining my eight-year-old’s body, I asked Stephanie to pose for me there. During the shoot I remember saying over and over again, “Stephanie, you look so beautiful. Your body is beautiful.” She loved when I gushed over what I saw on my camera’s ground glass. But, doubt crept in. I questioned my idea. I suggested that these photographs would feel too artificial, too fashiony. Stephanie replied, “what’s wrong with fashiony? Let’s go for it.” That afternoon, posing came easily to Stephanie. She was feeling confident and comfortable in her body. A week later, when I showed her the prints, she glowed. She loved these images and saw what I had seen during the shoot. When we met with an editor who was going to run an article on our project, Stephanie said the photograph, that she titled “Venus” was a turning point for her. Accompanying “Venus” in exhibition and print, she wrote:

After learning my story, many people glance at my chest almost despite themselves, making me feel embarrassed and ashamed. Then we did the “Venus” photo. Like a Michelangelo sculpture with the arms knocked off, I now see my torso as a work of art. Although I’m missing some pieces, I no longer feel disfigured. This image was a turning point for me (Brodsky and Byram 2003, 26).

As positive as that experience was for Stephanie, disappointment followed. When she showed the photographs to a friend, who was also a breast cancer survivor, her response deflated Stephanie’s high. Her friend saw a maimed, disfigured body, ravaged by cancer. Stephanie continued to live, however, as though she were reborn.

Luna

Perhaps it was the social scientist in Stephanie that led her to question societal norms surrounding how she should live with cancer. She was also originally from the American northwest where she was raised to appreciate life in its natural forms. When Stephanie lost her hair due to chemotherapy, she was as open to being photographed bald as she was with her chest bared. Not all people have such beauty when they are bald, but Stephanie did and I believe that in part this came from something within rather than from her features. Although Stephanie was not happy to have cancer, she did not hide it. There was an honesty in her approach to life—no cover-up. This in turn, made those around her more comfortable. There was little that was off-grounds for conversation surrounding her illness.
In response to “Luna,” which was a series of head shots, Stephanie wrote:

Why is it that I never see anyone without hair? Why is it that my doctor insisted I would want to “reconstruct” my breasts? Is it so important to hide our appearance, to hide our cancers? Why should I feel ashamed? Is it so important to conform, to avert the stares and whispers? (Brodsky and Byram 2003, 86–87).

Stephanie, receiving chemo
Stephanie was thirty-three when her cancer came back. The photograph above was taken on her birthday, March 14, 1996. It was a wintry day. Spring was not yet in the air. That this looked like a World War II bunker scene was intentional. She was stoic about recurrence and went deeper into life. By now, she knew what mattered.

Stephanie writes: “When told they have a life-threatening illness, some people withdraw into themselves. I, on the other hand, seek connections outside of myself, both physically and spiritually. … Without each other, our bodies and souls wither and die” (Brodsky and Byram 2003, 46).

One of our friends, an older woman who was a breast cancer survivor and a professor emeritus of English, told me that Stephanie wasn’t supposed to die. Many of us felt as though we were watching the story of Stephanie’s life unfold and that the author got the ending wrong. At every turn when a new test was taken and results were back, the news was always remarkably bad. We learned that Stephanie’s cancer was virulent and that the probability of surviving beyond five years was slim. Through many years of her life with cancer, we believed that Stepanie was too full of life to die, and if sheer determination mattered, she would beat the odds. But she, a scientist, was a realist.

Toward the end of her life when she was frail, her father told me that Stephanie was living in denial. Personally, I believed that denial helped her endure. Through years of life with cancer, Stephanie never identified herself as a victim. When a student once questioned during one of our presentations if she ever asked, “Why me?” Stephanie’s response was, “Why not me?”

From the large body of work that we produced, this image was one of my favorites. For me it is about human closeness. Skin on skin. Two beings becoming one. In actuality, the back story had a soap-opera plot. The man in the image is one of Stephanie’s former lovers. He agreed to be photographed with her for our project, as did many of Stephanie’s friends. She had a way with those in her life, and they valued closeness with her. Even with former lovers, Stephanie’s relationships were lasting. When this photograph was made, this man was now with another woman. Stephanie received an irate phone call from this woman who forbid us to use the photographs and demanded the negatives. Stephanie and I talked about this moral quandary. The boyfriend willingly posed. As far as we were concerned, our relationship was with him, not her. We recognized that there were “ownership” issues between them that we didn’t understand, but, ultimately, we believed that he and she needed to work some things out that did not involve us. We continued to use the photographs in print and in exhibition.

As a corollary to this story, an interesting question arises: who owns our work? Is it Stephanie’s? Is it mine? Our working relationship was smooth, but there were times that we needed to mediate differing opinions. There were photographs that Stephanie liked more than I did, and those that I felt strongly about that she did not. Those discussions strengthened our relationship and the project. They brought us deeper into conversations and into the story that we were telling. Although the work is about Stephanie’s life, there were two of us telling the story with different skill sets. I believe our voices merged well into one.

The last time I was with Stephanie was at her home, the day that she died. Later a friend asked if I had thought about photographing Stephanie while she was dying. I needed time to think of my reply, to form it into words, and to make it understandable to myself and to my friend. I did see photographs then, as I often “see” photographs when my eyes are open. But I never thought of bringing out my camera. Stephanie and I had always decided together when, where, and how to make our photographs—but while she was dying, she could not let me know what she wanted. Stephanie had been my subject but she was also my collaborator. In this our last experience together, I took her silence to be an invitation to put my camera aside and to be present with her. I’m glad that there wasn’t a camera between us then. My last day with Stephanie is with me and is more real than the photographs that I made of her. Even though photographs are more tangible, memories that we hold in our minds are etched deeply. Not from a photograph, but from within my being, I see her skin, close up, lightly freckled, with her hair cropped close to her head, an appealing shade of brown and gray, in a perfect shape around the curve of her ears. I don’t know if Stephanie would have wanted me to photograph her that day. I made the decision not to on my own.

Notes

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2015

Authors and Affiliations

  1. 1.School of DesignCarnegie Mellon UniversityPittsburghUSA

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