Once a month, Regina Gordon mentally prepares herself to share her life story with total strangers. She describes it as cathartic and a source of strength.
Gordon, the program assistant for Purdue University Fort Wayne’s Center for the Enhancement of Learning and Teaching since 2015, is part of Fort Wayne’s Human Library Started in Denmark in 2000 as a framework to challenge stereotypes and prejudices, the Human Library utilizes people who tell their stories in 20-to-30-minute oral segments.
The local branch started in 2018 offering monthly presentations at various sites with 15-to-20 human “books” sitting at tables with brief descriptions. After a five-minute orientation to establish protocol and privacy restrictions, "readers" can sit and chat and control the conversation as the speakers respond to questions.
The stories represent aspects of the Fort Wayne community, and the human books range in age from 14 to contributors in their 90s. The goal is not to confront but to educate through personal connections. The group made a 2019 appearance at PFW, and there’s interest in returning to campus in the near future.
Sometimes the events can be very purifying or emotional for the books, and Gordon has quite a story to tell.
During the mid-1990s, Gordon developed an illness doctors could not diagnose, telling her it was a medical mystery. Along with having trouble breathing, she developed fatigue, rashes, and bruises all over her body. After losing a lot of weight and fighting a dry cough, Gordon caught pneumonia. When she underwent X-rays, doctors discovered a softball-sized mass in her chest. Steroids diminished it over the years, but it caused scarring in her lungs.
As Gordon learned to find her way through the medical system, many doctors dismissed her complaints, so she became her own advocate, pushing for answers. She underwent dozens of medical tests.
Eventually, she was diagnosed with sarcoidosis, an inflammatory disease associated with increased immune system activity in which clusters of immune cells infiltrate organs and lymph nodes. The disease most commonly attacks the lungs and the eyes and mostly affects African-American people, especially women. Doctors aren’t sure what causes sarcoidosis, and there is no cure, though sometimes patients go into remission.
“With all the research they are doing, they are beginning to find it is genetic,” Gordon said.
Gordon believes the disease comes through her father’s family. Her brother, and in many ways Gordon’s best friend, died in 2015 from polymyositis, an inflammatory disease that causes muscle weakness. Like sarcoidosis, there is no known cause or cure. His passing spurred the passion for Gordon to become an advocate for others.
While studying at PFW for her 2016 master’s degree, Gordon took a creativity and community class. As part of a project, she founded a support group for sarcoidosis patients and says she has met more than 20 within Allen County.
One day, a friend read about the Human Library in the newspaper and called to suggest Gordon investigate. After an interview with the organizers, Gordon was asked to appear at an event the next day. She’s been a member ever since, attending about 25 gatherings, and helping with the group’s social media and web page.
Each event lasts four hours, and Gordon delivers at least four presentations. The speakers do not get paid and there is no entry fee.
“I get to share my lived experience with others and learn about other people,” Gordon said. “It’s an outlet for me and helps me to dispel the myths about hidden illnesses. It keeps me busy and stay positive by keeping my mind off things.”
Because Gordon maintains a strict upward outlook, talking about her medical situation is not a cry for attention or sympathy. But speaking also allows her to serve as a resource and help others who find commonality and may be suffering from similar ailments. Sometimes, as she says when speaking with medical students, empathy is the best medicine.
“I’m sure I’ve helped people by having a conversation about rare heath that is a mystery to myself as it is to others,” Gordon said.
The group’s next event is at the Fort Wayne Museum of Art’s Taste of the Arts on Aug. 26 from 11 a.m. to 3 p.m.