Meaningful survival
Cynthia Dunafon is disturbed by something she's just read. An article on the promise of gene therapy, published in the New York Times of all places, has gotten everything wrong.

"The genes are not 'replaced,'" the doctoral student points out. "The new genes are added to the cells, where they function alongside the already existing genes. The article also suggests that gene therapy is a quick cure to all problems, and this is wrong on a number of levels."

Dunafon's knowledge of how gene therapy works-and how it doesn't-stems from years of research. Like many Chicago scholars, her understanding of the subject is far more advanced than what's presented in the popular press.

One might surmise that Dunafon is at the U of C to study such things as chloride ions and viral vectors, but in fact she's writing a dissertation in Social Thought on Sigmund Freud and Bulgarian-born author Elias Canetti. Her scientific investigations are not based on whim or the tendency of dissertation writers to procrastinate. Dunafon has cystic fibrosis, a chronic, hereditary condition with which she was diagnosed at age 12. In cystic fibrosis, a defective gene prevents adequate production of certain proteins, resulting in a thick buildup of mucus in the lungs and, more often than not, problems in the digestive system. Dunafon seeks to understand the science behind the disease by participating in gene-therapy clinical trials that aim to improve lung function in those with CF.

A few years ago she took part in her first trial, a short study conducted by the National Institutes of Health. Just after her Social Thought Fundamentals exam in summer 2000, she made eight or nine trips to Johns Hopkins Medical Center in Baltimore for the first phase of another trial conducted by a pharmaceutical company. Now participating in phase two, at Hopkins Dunafon has earned a reputation as the patient who asks all the questions. She does not believe such studies will be the source of a cure-a hereditary disease can never be eradicated-but she is interested in learning how scientists think about her disease.

Dunafon devotes about three hours a day to inhaling medications, exercising, and loosening the mucus in her lungs. The disease also played a role in her intellectual life as she zeroed in on a dissertation topic. In examining the relationship among sickness, madness, and spirituality, Dunafon fixed upon Freud's Moses and Monotheism and Canetti's Crowds and Power. While Freud examines the character of crowds as a whole, she says, Canetti looks at how individuals navigate crowds to survive.

Part of asking what it means to be human, Canetti believes, is asking what it means to survive someone else. This is a question Dunafon says she understands "keenly." Not only is she five years past the average survival age of a person with cystic fibrosis, but she has outlived her friend Karen DiNal, AM'91, a Chicago doctoral student in English who also had CF and who died in August 2000. How, Dunafon asks herself both privately and when reading Canetti, do I accept that? How does one survive others and continue in a meaningful way? In Canetti she seeks a nuanced and resonant discussion of survival to help resolve these questions.

At 37, Dunafon is in fairly good shape. Thin and soft-spoken, she barely looks her age. When serious, she sometimes falls prey to a stutter; when laughing, her eyes tent up into bright triangles. She maintains that she is not interested in navel gazing, but rather research into the human condition-that though her experience with cystic fibrosis is unique to her, there may be something others can take away from it. "I'm trying to bring my understanding of what it is about being sick, which is a very personal thing, to the academic experience," she says. "Whether or not I succeed is something else."
- Julie Englander

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