Returning piles of books to the library circulation desk, hurrying across the Lawn to class, moving the tassel at commencement: With each little ritual of college life that Tim Cauley performed, he was defying the odds. Cauley has cystic fibrosis, and when he was a UVA undergraduate the average life expectancy for someone with his disease was about 14 years.
Advances in treatment and earlier diagnosis have extended the life expectancy of people with CF, a disease affecting the respiratory and digestive systems. Cauley is now 44, working and living in Dumfries, Va., with his wife and stepson, a reality once unthinkable for someone with his disease.
Across the country there are thousands of other CF patients like Cauley, enjoying aspects of life many take for granted: family, work, middle age. But with these advances come many new challenges—for patients, families and doctors alike. To provide insight about some of these realities, Cauley recently served as an adviser for the short film Becoming Christopher.
Brought on board by lifelong friend Carrie Liaskos (Col ’86), the film’s executive producer, Cauley shared with the filmmakers and actors the quotidian aspects of living with CF, both physical and psychological. The film follows a recent college graduate as he navigates the difficult passage into managing his disease as an adult. In the film, Christopher struggles with how to have a social life, keep up with his arduous self-administered treatments, move out of his parents’ house and transition out of pediatric care. Meanwhile, his parents are nervous about his growing independence.
When Cauley was a child, many people had never heard of CF. “You felt isolated and somewhat different,” he says. Cauley attended a summer camp in Charlottesville for children with CF and took comfort in the sense of community and opportunity he found there. “There were other kids older than me, other kids doing the same treatments but having fun at the same time,” he says.
That face-to-face community is no longer possible for CF patients due to the risk of cross-infection. Instead, patients share their stories and information through online chat rooms and blogs. One aim of Becoming Christopher is to add to that sense of community by showing young people that others face the same challenges they face. “By seeing something like this, you realize you’re not alone,” Cauley says. “You see you’re going through similar things.”
The film, which is being distributed to CF centers around the country, is an important educational and support tool for parents, who are instrumental in establishing a positive attitude in their children. “Some people think, ‘Why do my treatments, I’m going to die anyway. I’m just going to flip burgers my whole life.’ A lot of times that attitude comes from the parents, and those are the people who don’t make it,” says Cauley. His late brother, Kevin Cauley (Col ’77), graduated from college before succumbing to CF; they were fortunate to have parents who believed in living without fear of the disease’s low life expectancy. “My parents never thought I wouldn’t go to college, get a job, move out. The attitude was, forge ahead and live as if you’re going to be 50 or 60 or 80.”
Cauley is now an adviser for an amateur filmmaking contest for people with CF and on The Christopher Chronicles, the sequel to Becoming Christopher. In the sequel, Christopher moves into an apartment with roommates and starts a new job. He has to deal with communicating his needs and limitations to his roommates, coworkers and a girl he wants to date. More information about the film and the contest, called Becoming [Me], is available at www.CFVoice.com.
This article first appeared in the September 2008 UVA Magazine enewsletter.