A journalist’s story of living with epilepsy
By Stephanie Soucheray
Stacia Kalinoski (B.I.S. ’07) doesn’t shake during her seizures. Her eyes don’t roll back in her head, and she doesn’t bite her tongue. That could happen to some people if they’re having a grand mal seizure, but for many Americans with epilepsy, seizures look different. For Kalinoski, 31, they look like blackouts, brief periods of time when she might scream, flail her arms, shake, or act out, and not remember a single thing.
“My brain goes black but my body is still on,” she says. “I might see a split second flash of lightning or start to lose awareness, then I go black.” Before surgery, Kalinoski suffered from temporal lobe seizures; during an episode her brain’s electrical currents misfire and cause her to behave oddly or lose consciousness. Seizure can affect any part of the brain, and when they do, the brain suffers from a “storm.”
Despite affecting 3 million Americans, epilepsy is a widely misunderstood disorder. Kalinoski says there are 40 types of seizures, and many can be misdiagnosed as mental illness. In 2009, after Kalinoski moved to Eugene, Oregon, to work at a news station, she had one seizure on-air while interviewing the mayor.
In 2012 Kalinoski moved to Michigan. There, she began seeing Dr. Brien Smith, M.D., who diagnosed her condition as epilepsy. Smith is the same doctor who would eventually treat former Gopher football coach Jerry Kill, who resigned in 2015 because of his struggle with epilepsy.
Two years after moving to Michigan, during a seizure while she was at work, she acted out toward a coworker and her employment was terminated for inappropriate conduct. This was her second episode in six months. “I was humiliated, and I went back to Minnesota,” she says. Her new doctors began monitoring her seizures and decided she was a good candidate for surgery. Her right temporal lobe, the site of her seizure activity, was removed in the summer of 2015. Kalinoski suffered a handful of auras (strange feelings that preceded her seizures) after the first year of surgery, but has been seizure-free since.
In February 2015, the same day she was told she was a candidate for brain surgery, Kalinoski got the idea to tell her story, and the story of other people with epilepsy, by writing and producing a documentary. Last November, her documentary, titled Brainstorm, aired on Twin Cities public television.
“I’m used to doing daily 90-second news stories, so a 55-minute documentary was a bit different for me. But I thought it was the best way to educate people on this disorder.” Using Kill’s story, her story, and one of a small boy in Atlanta, Kalinoski’s documentary shows how widespread epilepsy is, and how no two people with epilepsy have the same symptoms. According to the Epilepsy Foundation of America, one in 26 people will develop the brain disorder in their lifetime.
“My mom says making this documentary was payback for getting my health back,” says Kalinoski, who currently works as a substitute teacher in St. Louis Park.
Kalinoski doesn’t know what’s next for her career-wise, but she says her life is getting back on track. She’s running again, and interested in showing her documentary to wider audiences.
“It turns out I like long format, and I liked that I can make a difference in how people understand this disorder,” she says.
Learn more about Kalinoski's documentary Brainstorm at brainstormdocumentary.com.