Snapshots of life—in sickness and in health

Feb 13, 2014

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She was just 27 years old when doctors dismissed her symptoms of debilitating joint pain, fatigue and weakness as “unmarried woman’s disease” and “graduate student syndrome.” Months later, Jessica Lieberman was diagnosed with lupus, which led to further devastating news—she was also suffering from Hodgkin’s lymphoma stage IIIB.

In 1998, the graduate student at University of Michigan entered the invisible universe where seriously ill cancer patients go—a place where you don’t recognize your own image in the mirror, a time when even loyal friends disappear after hearing the news.

Nevertheless, Lieberman held her illness up like a prism, looking at it from every angle, exploring every facet. In her book published by RIT Press, Becoming Visible, the assistant professor of visual culture in RIT’s College of Liberal Arts, who also teaches in the photography program at RIT’s College of Imaging Arts and Sciences, recounts her two-year odyssey through diagnosis, surgery, chemotherapy, radiation and recovery.

She dedicates her book to Amit Ray, associate professor in the Department of English at RIT, “who handled it all” and whom she later married.

In this candid documentary, Lieberman says she “stole” images of herself while undergoing chemotherapy treatment—using plastic Holga cameras and a Pentax K1000. “This was before the enactment of the new HIPPA laws, and hospital staff told me I was banned from taking photographs or having copies of the images of my body from CT scans or MRIs,” she explained. “So I hid disposable cameras underneath my sweatshirt or blankets and no one suspected anything because no one was really looking at me.”

Becoming Visible is a scholarly and therapeutic study that shows how the forces of art and narrative can contribute to social dynamics for change. The text and images that document the emotional trauma of living with a life-threatening disease are blunt and candid—not always pretty to look at, and aren’t meant to be.

“To talk about the taboo complexities of illness and dying is not the norm,” said Lieberman, who teaches classes (often wait-listed) on the Art of Dying. “Students across the university—photo, design, women’s studies, business, game designers and engineering—all come ready to talk about death. They often react powerfully as they question the silence and discomfort surrounding the cultural practices of mourning and healing and discuss it with their families and within their social circles.”

In 1995, Ray says he and Lieberman became instantly attracted when they met in graduate school in Ann Arbor, Mich., and their relationship grew even stronger after surviving cancer together. “It was incredibly late when they found Jess’s lymphoma and she had eight tumors the size of golf balls wrapped around her throat,” Ray recalled. “They told us she would have only three months to live without immediate treatment. The irony of ironies is that they found it because of another serious disease—lupus.”

As Lieberman’s primary caretaker, Ray exercised daily to “the point of exhaustion” to relieve stress and build endurance. “We didn’t fight this alone,” Ray said. “Jess’s parents and siblings flew out several times from California and many friends stepped forward to offer support.”

Last year, a doctor who is an expert in lymphoma said the treatment regiment Lieberman received in 1999 was “barbaric.” The extensive chemo cocktails and radiation have left her with a compromised heart, lungs and non-functioning thyroid, complicated by daily problems with circulation,  metabolism, breathing, exposure and pain.

After cancer treatment it wasn’t clear whether the couple could have biological children. But they did. “We had two miracle babies, Lucy, who is 9, and Kiran, who is 6,” said Lieberman. “They know that illness is part of who mommy is.”

Lieberman and Ray also have learned to live with uncertainty—she knows her limitations; he accepts them.

“There is no remission only because of how advanced my cancer was; I have what they call long-term disease free survival,” said Lieberman. “One of the text images in the book reveals the state of my health after treatment: Diet: Regular; Activity: As tolerated; Condition of patient at discharge: Alive.”