Former Thief River Falls resident and Lincoln High School graduate Stacia Kalinoski has produced a documentary about her experiences with epileptic seizures. Kalinoski said it seemed like a natural segue – a bridge – to link her television reporting career and health issues. Her documentary, called “Brainstorm,” has now been aired on public television and is reaching thousands of people across the state.
In an interview, Kalinoski said two years ago, she would never even considered uttering the words, “I have epilepsy,” but now she’s telling her story loudly in order to clear up misconceptions and educate America. “It needs to be shared, and I’m hopeful it will be heard.”
Kalinoski’s journey to understanding and becoming an advocate for epilepsy began in the fall of 2005 as she was about to embark on her junior cross-country running season at the University of Minnesota, it happened; my very first seizure.
She doesn’t remember anything about it except that she was in her apartment. Her roommate witnessed it and called 911. She said she vaguely recalls getting out of the ambulance and going into the emergency room. The doctors performed a few tests and released her.
Kalinoski explained that anyone can have a seizure, at any age. “Our brains are constantly sending messages to other parts of the body through the nervous system, a network of billions of neurons. They travel via an electrical current. Any number of things can disturb the brain, and suddenly neurons will start misfiring and create a seizure.”
Another seizure struck a few weeks later, but nothing again for about four years.
“After college, I headed off to Nebraska for my first TV news reporting job. A couple of small seizures popped up as I was preparing to move to Oregon for my next job in 2010.
“At this point, I was starting to get nervous. My seizures didn’t look like your ‘typical’ seizure.
“I had what are called focal seizures, which are focused in one part of the brain. People who fall down and convulse have generalized seizures, which affect both sides of the brain. But with focal seizures, I would stay aware of what was happening at first – and get deja vu, which is common in focal seizures. Basically, I would be in the middle of doing something, then slowly start to get a weird feeling that I had been somewhere before, like a flashback, maybe back to something that had happened in my life 15 years ago. It felt like a strange dream.”
The seizures would cause a number of disturbing incidents. If running, her surroundings would suddenly all become unfamiliar and she would get lost. In another incident, she was cutting vegetables and ended up slicing her arm open with a knife – one of many injuries brought on by a seizure.
There were times when she would just get confused and think the lights were flickering in a room. “That was my main warning that a bad seizure was coming. Then, within seconds, it was lights out.
“Seizures would spread from one area (doctors later determined my right temporal lobe) to another, and I would lose all awareness of what was happening. I was essentially unconscious at this point, but my short-circuiting brain was in overdrive. Since seizures firing from my right temporal lobe often spread to my frontal lobe, my actions would reflect what those areas control – emotions, fear and movement.”
At times she would start screaming and flailing her arms. Kalinoski said other people laugh, or appear to be making cycle pedaling motions or pelvic thrusts.
Kalinoski said she didn’t realize how scary it was for others who were witnessing her seizures.
She said her co-workers and friends began to get increasingly concerned about what they were seeing. She stopped driving and started biking to work. But, she kept it all from her family.
“I simply didn’t want to worry them and figured this was a problem that would either go away or that I’d somehow grow out of it. Stigma and embarrassment were all I thought about, and I wanted to keep my job.”
The seizures began to worsen. Finally she saw her first neurologist in Eugene and started on medication. “It had upsetting side effects – it basically made me really emotional – so I just stopped taking it. I know, not the smartest idea. But, I was preparing to move to Grand Rapids, Mich., for my next TV news job, and vowed to take control of the seizures there.”
In 2012, she sought out an epileptologist, one who specializes in the treatment of epileptic seizures, and she found one of the best in the country – Dr. Brien Smith at Spectrum Health Medical Center.
In November 2012, she was put in the hospital’s Epilepsy Monitoring Unit, where they connected electrodes to her head to track her brain waves. They also recorded her to see what the seizures looked like. For about a week, doctors deprived her of sleep and reduced her meds to trigger seizures.
The outcome was that she was put on several new medications. They did a good job of controlling seizures, but if she got less than eight hours of sleep, it would cause trouble.
They then started to look at the possibility of brain surgery.
About that time, however, she continued to have seizures at work. One was so bad, she said she was fired.
She eventually returned home to Minnesota, knowing that her number one priority had to be taking care of her epilepsy.
Her doctor referred her to Dr. Patricia Penovich at Minnesota Epilepsy Group in St. Paul. Additional tests determined she was a good candidate for brain surgery.
This meant the surgery evaluation team thought there was a good chance seizures were firing from her right temporal lobe. It’s the most common area for focal seizures and has the highest success rate.
Still that’s no guarantee of success and she had to agree to an exploratory surgery before they would take on a more extensive surgery.
Her surgery was a success.
“It’s been almost two years since surgery, and I’m thrilled to say I’m doing great.”
The most distressing result has been the memory loss. She said she remembers very little of the last decade because her seizures started in the hippocampus area of the right temporal lobe, which helps transfer short-term memories to long-term. She doesn’t recall her adventure trip to New Zealand, Christmases with her family, or nights out and conversations with friends. She admits that’s really emotional for her, and for them.
In her documentary, she’s not just sharing her story, she’s also chronicling the journey of a little boy with epilepsy in Atlanta, Ga., and that of former Minnesota Gophers football coach, Jerry Kill, who dealt with ignorance and endured ridicule after suffering seizures in the public eye.
Kalinoski said her hope is that by interweaving personal stories, viewers will gain a true understanding of how seizures work and impact people.
One in 26 people in the U.S. will develop epilepsy at some point in their lifetime, it affects three million Americans, and 50,000 people die from seizures or seizure-related causes (like drowning), every single year in America.
More information and a film trailer about “Brainstorm” can be found at https://www.brainstormdocumentary.com#sthash.OVAdR2eH.dpuf. “Brainstorm” on DVD and Video On Demand is coming soon.
Stacia is the daughter of Greg and Barbara Jauquet-Kalinoski. Barb said, “it's been a huge journey for our entire family.” Sons Mike and Tom have gone into medicine (both doctors) and, Stacia’s sister, Sara, supports her in every way she can, to include running a marathon and designing Stacia's website. “As with any family affected by a medical issue, it changes lives.”
(Editor’s note: This story was prepared by Stacia for release and has been edited for length.)