Photograph by Ackerman + Gruber
The camera focuses on Stacia Kalinoski as she holds her face and weeps. She’s watching footage of herself having a complex-partial seizure. Although she’s been having seizures for a decade, it’s the first time she’s seen it. In the scenes that follow, her grief transforms into resolve as the 32-year-old journalist faces the epilepsy that once controlled her life.
Kalinoski wrote, produced, filmed and edited Brainstorm, the documentary that follows her diagnosis with epilepsy and the decision to undergo brain surgery in 2015. In the one-hour film, she interweaves her own story with those of Rutgers offensive coordinator (and former Minnesota football coach) Jerry Kill and a middle-school boy named Billy. Both Jerry and Billy have battled drug-resistant seizures. The narrative is mesmerizing and heart-wrenching, and it’s an honest depiction of the serious challenges people with epilepsy face.
Kalinoski didn’t plan to become a documentarian. But in her junior year at the University of Minnesota, where she studied journalism, she experienced two seizures. Years later, simple- and partial-complex seizures became regular. Sleep deprivation seemed to be the trigger. She thought she could gain control with rest, but she was wrong. In 2014, while working for a TV station, she had a seizure that led to her dismissal. Humiliated and angry, she resolved to seek optimal treatment. “Epilepsy had taken over my life, and I needed to make changes,” she says.
When Kalinoski learned she was a surgery candidate, she had the procedure and decided to tell her story to help end the stigma. “The hardest part was deciding to tell the world how I lost my job,” she says. “I don’t see it as brave. This is my payback for the doctors who gave me back my life.”
Brainstorm premiered on Twin Cities Public Television last November, and Epilepsy Foundation of Minnesota sponsored a screening. Kalinoski has received emails from viewers thanking her for educating them and creating awareness about epilepsy.
Surgery was successful; her seizures are gone. Kalinoski is focused on promotion and distribution. She doesn’t plan to go back to TV news. “Losing my job was the best thing that ever happened,” she says. “Otherwise, I wouldn’t have made the film.”
Originally printed in EpilepsyAdvocate, Spring 2017.