In new memoir, Minnesota journalist details how epilepsy changed her life

NINA MOINI: Well, more than 55,000 people in Minnesota have epilepsy. It's a condition that causes people to have seizures. That's according to the Epilepsy Foundation of Minnesota. And my next guest was forced to become an expert on what causes and symptoms of epilepsy when she began having seizures about 20 years ago. As they continued on and off, Stacia Kalinoski fought to pursue her dreams of working in journalism and her love of long-distance running. It's now been 10 years since she had brain surgery for the condition, and she's come out with a memoir, Racing Uphill-- Confronting a Life with Epilepsy. Thank you so much for your time today, Stacia.

STACIA KALINOSKI: Yes, thank you for bringing me in.

NINA MOINI: And I should say it's Kalinoski. I apologize if I pronounced that wrong.

STACIA KALINOSKI: Yeah. It is.

NINA MOINI: Would you tell us a little bit first just about epilepsy? I think people hear a lot about it, but perhaps if they don't somebody who has it, they might not a lot. What do you want people to really understand about it.

STACIA KALINOSKI: That's a great question. Epilepsy is so complex. So to start, a seizure occurs when neurons misfire, and that creates a huge surge of electrical activity, and that sends mixed messages to other parts of the body. So you can do really so many different kind of things during a seizure because the body reacts in so many different ways depending on where the seizure starts. So I can give an example.

NINA MOINI: Sure.

STACIA KALINOSKI: Mine were-- my Michigan neurologist called them bizarre and unusual. So they started in my temporal lobe, often spread to my frontal lobe, and the frontal lobe controls your motor function. So I would lose consciousness. I would start waving my arms, kicking my feet and screaming. And that's what he called bizarre and unique.

Now ask any of the other 55,000 people in Minnesota what their seizures are like, and most will say something completely different.

NINA MOINI: Interesting. So it's pretty individual. It doesn't necessarily look the same for everybody. And I think that's a really important reminder. I think what I've learned about you is that you grew up in Thief River Falls being super active and super athletic. Do you want to talk a little bit about how your experience with sports affected how you handled your seizures when they started to become a part of your life?

STACIA KALINOSKI: Sure. So I grew up very healthy. I did three sports, I did well in school, and then I had my first seizure out of the blue my junior year at the University of Minnesota, right at the start of cross country season. I had another one where I fell out of my bunk bed, and after, that they seemed to go away.

I moved on with my life. I moved out to Nebraska for a reporting job. Two years later, I moved out to Oregon for another job, and there I was 25 years old. I was working crazy hours, and I was training for my third marathon. And right after that marathon, seizures came back with a vengeance, and they continued to worsen.

And I look back when I started this memoir, and I got through my job loss. And I got through everything, and I looked back, and I think it's because of the resilience I developed as an athlete. I think a lot of athletes could-- yep, you develop resilience, get through adversity, and I think that really helped me through the hardest time of my life.

NINA MOINI: Tell me a little bit more about that if you would. So you had to leave your job in TV news. You began writing. Why did you begin writing about your experience? Obviously, you're a writer.

STACIA KALINOSKI: Yes, well, you know what. It actually started with a documentary. I never thought-- planned on writing a book, but when I came back to Minnesota-- I lost my career-- came back to Minnesota and did surgery work up. And when my doctor told me I was a candidate for surgery, I said yes right away. I'm ready to go. And an idea popped into my head I should do a documentary on this experience because I was a broadcast journalism-- journalist, and I love shooting and editing video.

So I was able to put together a documentary for Twin Cities PBS in 2016. That led to speaking opportunities, and for writing, it made me realize that the adversity I went through and the resilience I developed could inspire other people to take control of their health or obstacles in life. So for writing and the book, I share the mantra that I would tell myself during rough times, not just with epilepsy, when I had running injuries, and that was don't give up on yourself.

Things are hard. You can do hard things so don't give up on yourself. And that's the message I-- I talk about in the book.

NINA MOINI: Yeah, and that's such a message that universally strikes people right in the heart. I wonder, too, about others that you've met with epilepsy and how that community has began to form for you and was a part of your experience.

STACIA KALINOSKI: That's a great question. So a message around people with epilepsy is-- especially with adults-- is we go into denial at first. We don't want to tell anybody about it because we're scared of stigma. And I had epilepsy for four years before I met someone, and that was Jerry Kill. At that time, he was the coach of the Minnesota Gophers football team.

NINA MOINI: Wow, yeah!

STACIA KALINOSKI: The first one I met. He agreed to do an interview for my documentary, and I still remember what he told me. He heard me talk about my story, and he said whoever did that, whoever fired you, I think it was the best thing that ever happened to you. And that stuck with me.

And then I'm part of the Epilepsy Foundation of Minnesota, their virtual connect groups, and I hear a lot of stories. And I joined that-- it's almost every month-- to provide support. I share my experience, and then I share my advice with having surgery because it was such a game changer for me. It really saved my life.

NINA MOINI: Tell me about that if you would. You had some memory loss, and then you had the surgery. Tell me about how much that helped you.

STACIA KALINOSKI: Yes, so memory loss is probably the biggest thing that adults will tell you is the devastating part of epilepsy. And that for the most part is episodic memory loss. That was for me. So I don't remember most of my life before the age of 30. I have snippets here and there, but-- so when you lose memories of vacations, the news stories I did as a reporter, most of them, track meets in college-- and that's been devastating because reminiscing about old times is one of the best parts of memory. And then not remembering conversations was tough because I could tell that people didn't feel valued when I couldn't remember a conversation.

NINA MOINI: Oh. Did you have to talk with others to fill in-- fill in the gaps a little bit.

STACIA KALINOSKI: Yeah. Yeah. Exactly, exactly. So, again, that was really one of the selling points for me with having surgery is getting my memory back for sure and then just being able to walk out the door and not worry about having a seizure. That's the thing that people fear every day.

NINA MOINI: Yeah. It's striking what you said that Coach Kill had said to you that was the best thing that happened to you because I imagine it was painful to be diagnosed with something and then to feel like, well, now I can't do all the things that I thought I wanted to do, and those types of situations can come up in people's lives for a variety of reasons. But I can tell that you're passionate about inspiring others and making sure that others come away with something. So if there is somebody who is facing a diagnosis of any kind or what advice do you have for them to continue to be able to make an adjustment if they have to but continue to flourish?

STACIA KALINOSKI: Well, I can tell them that how they feel because I loved being a reporter. I loved shooting and editing my own stories, so that was devastating.

NINA MOINI: Yeah.

STACIA KALINOSKI: And I hear people share their stories. They've been emailing me. I went to a book event in Park Rapids, and people shared their stories because epilepsy, it feels like it's everywhere. So it's really that message of I know what you're going through, I've been there, and this is what has helped me. And that message of just don't give up on yourself.

I tell people look at surgery options. Not everybody can have surgery. But if there's an option, especially to have a resection where part of your brain is removed or to have implants put into your-- right into your head, there's options out there, and that's what I really want people to realize, that you can really take control of your health if you have the right team of doctors behind you.

NINA MOINI: Yeah. Well, Stacia, thank you so much for coming by and sharing about your book and your experience. I really appreciate your time.

STACIA KALINOSKI: Thank you for having me.

NINA MOINI: Thank you. Stacia Kalinoski is the author of the book Racing Uphill-- Confronting a Life with Epilepsy. It comes out tomorrow.