Meet the Director: Stacia Kalinoski and the epilepsy documentary, Brainstorm

Stacia Kalinoski had no plans to produce and direct documentaries. She wanted to be a television reporter. When she had her first seizure in 2005, she was a 20-year-old college junior studying journalism at the University of Minnesota. She was prescribed medication, but multiple tests didn’t reveal that she had epilepsy.

Until four years later, when the seizures returned. In 2015, she got an official diagnosis: mesial temporal sclerosis.

Kalinoski knew that good sleep habits were one way to reduce the risk of seizures. But as an active young adult with a full-time job, she wasn’t always able to pull it off. At her reporting job at a television station in Michigan, she experienced several seizures while at work. The last one led to her dismissal.

Because her seizures often spread quickly to her frontal lobe, doctors weren’t sure she was a surgical candidate. After a craniotomy and brain mapping, Kalinoski was given the green light for surgery; she underwent an anterior right temporal lobectomy with amygdalohippocampectomy.

Kalinoski was ready for surgery as soon as doctors said she was a candidate. “I would have gone into the operating room that night if I could have,” she said. However, only about 1% of eligible patients will undergo surgery. Though many are never presented with the option, others refuse the procedure out of fear. Certainly one reason, she said, is that they’re scared.

Faced with the loss of her job and barred from running, she saw surgery as an opportunity for a better life—not as something to fear.

After surgery

Since recovering from surgery, Kalinoski has an occasional aura, which presents as a metallic taste in her mouth. It lasts about 5 seconds. But no focal impaired seizures have followed.

Because of Brainstorm—released in November 2016—Kalinoski is quickly becoming a spokeswoman for epilepsy. She has given talks at epilepsy group events and grand rounds, and to pharmaceutical companies. And the film has begun to empower patients.

“When I decided to do the film, my goal was to educate the public,” she said. “I didn’t realize the impact it would have on the epilepsy community.

“The biggest thing people say to me is that they don’t tell others that they have epilepsy, because of the stigma. That’s why I want to show the film and speak more too. It’s helping patients feel more confident.”

Her film also is helping dispel fears. “People have emailed me (after seeing Brainstorm) and said they are reconsidering having surgery,” she said.

What patients want their doctors to know

Kalinoski has heard from many people with epilepsy about the care they’re receiving and what they’d like doctors to know. Here is some of the feedback she’s received, and some of her own tips:

• Make time at the initial diagnosis to have a conversation. Take 15 minutes and ask the person what they’re thinking and how you can help. Offer resources, such as a brochure with epilepsy resources and support groups—but don’t just hand it to the person and walk away. Go through it.
• Reinforce (nicely) that the person should make an effort to connect with others who have epilepsy. You may have to push a little: “I know you’re scared and this is a lot for you, but please try going to one of these groups, either in person or online.”
• Encourage the person to keep a journal to log what’s going on in their lives and when they have seizures. If they can bring someone to appointments with them to take notes, that can be very helpful—especially if the epilepsy affects their memory.
• Be positive about the idea that patients may seek out information on the internet. They are taking the initiative to learn about their condition. Help them understand which websites are the most reliable sources for information. Empowered patients should make your job easier, not more difficult.
• Ask open-ended and difficult questions: How many days a week do you sleep for 8 hours a night? How often are you forgetting to take your medication? Make it safe for the person to talk to you. Patients may not freely admit that they aren’t doing what they should, or that they are doing things they shouldn’t.
• Listen. People want a doctor who truly listens to them. Allow them to challenge you, and don’t dismiss what they say. It can take a lot of courage for a patient to speak up to a doctor.

Kalinoski is offering nonprofit groups public performance rights to Brainstorm so they can host screenings.