Documentary filmmaker confronts epilepsy in a new memoir: Stacia Kalinoski

Seizures cost Stacia Kalinoski her career in broadcast journalism and forced her to give up running. In her new memoir, Kalinoski recounts her journey from first seizure in college to epilepsy surgery years later, describing her seizures, struggles with medication, and challenges coming to terms with her epilepsy.

Kalinoski's book, Racing Uphill, is available July 1, 2025 and can be ordered or pre-ordered online.

Stacia Kalinoski is an Emmy Award–winning TV news journalist from the United States whose documentary Brainstorm was nominated for a regional Emmy Award. Before a seizure ended her broadcast journalism career, she reported for television stations in Nebraska, Oregon, and Michigan. She now shares her story as a motivational speaker.

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

Let us know how we're doing: podcast@ilae.org.

The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Transcript

Nancy Volkers: Welcome to another episode of Sharp Waves. Today we're talking with an author and documentary filmmaker who has a new memoir coming out. Her name is Stacia Kalinowski, and I'm going to have her introduce herself now.

Stacia Kalinoski: Yeah, thank you Nancy.

So I live in the Minneapolis area, and I had my first seizure at the start of my junior year of college at the University of Minnesota, right at the sort of cross-country season. And then I had another one and then seizures didn't return for a few more years. But while writing this book and talking to epileptologists, it sounds like I could have been having seizures well before that tonic-clonic in college. 

And a seizure eventually ended my career when I was a news reporter, 29 years old, and led me to creating a documentary about my journey called Brainstorm, and now a memoir. 

Nancy Volkers: So the memoir is coming out July 1st, 2025, and it's titled Racing Uphill: Confronting A Life With Epilepsy. You did mention cross country and there's definitely a lot of running in this book. Why did you choose that particular title? 

Stacia Kalinoski: Sure. So racing uphill, and there's a photo of me running up a hill, spoke to two things. First, my love of running and training for marathons, which epilepsy took away. And then confronting life with epilepsy is what I eventually had to do. Denial plays a big factor in epilepsy, but as I found out, you can only run away from seizures for so long. So once I lost my career, I had to confront epilepsy.

Nancy Volkers: Thank you. So you said your seizures began in college, you were a young adult, but then they sort of went away for a few years, or possibly went away, before you started having tonic-clonic seizures. How did your attitude towards seizures and epilepsy move from the denial to acceptance and were there any key moments, whether they're mentioned in the book or not, that sort of led you from denial to acceptance on your journey?

Stacia Kalinoski: Yes. So I was forced to start accepting epilepsy after a seizure stopped my marathon training, and after that I still tried to downplay it and hide it from my parents. But when my family came up to see me in Oregon, my parents discovered I couldn't even find my neurologist's office because my memory was starting to get bad.

Then my mom wanted to visit a winery that we had visited prior, but I didn't remember that we had even been there to begin with. So from there, I had to start updating my parents about my health.

I didn't fully accept epilepsy, though, until I lost my career four years later. It's because when you lose your source of income, you don't really have the choice to downplay your epilepsy anymore. 

Nancy Volkers: Yeah. So it sounds like the memory issues were a big part of your epilepsy and it's, I mean, it has to be really difficult, particularly as a young adult not remembering things from just a few years ago or not remembering how to get to your neurologist's office. What kind of impact did that have and does that have, and how do you manage it?

Stacia Kalinoski: So I belong to some virtual connect groups through the Epilepsy Foundation of Minnesota, and memory is one of the first thing that always comes up. It's like no matter what type of epilepsy you have, people are like, my memory is terrible. So we kind of talk about that thing and the frustration.

But for me, the episodic memory loss has been the worst part of epilepsy. I have temporal lobe epilepsy and I don't remember much of my life before the age of 30. So that's including vacations and holidays, news stories that I did as a reporter and track meets in college. And that's been really devastating because I think of memories being like treasures. They are valuable and they should be locked away in our brains to be able to retrieve and then reminisce later with your family and friends. 

But since my surgery 10 years ago, my memory is much better. Prior to surgery, I could tell people didn't feel valued when I couldn't remember a conversation from just a few days prior. So that's so nice to be able to remember conversations again. 

Nancy Volkers: Let's back up just a little bit. You mentioned Minnesota and that's where you grew up. And in your book, I remember one section where you're talking about, I think you were in high school or maybe even younger. You got up while it was dark out, you delivered newspapers, then you went for a run, and then you went to school. And then presumably you did stuff after school too. Can you talk a little bit about what your life was like before your seizures started? 

Stacia Kalinoski: Sure, yeah. I was a newspaper girl. My siblings and I were too, ever since like sixth grade, so that's something we did every single morning. Yes, I was a determined kid with a lot of energy and life was good. I competed in sports. I did well in school and in college. And then I had my first seizure in college and then another one. I had sleep insomnia problems, beginning in college, I remember documenting that when I looked back at some medical records.

But then I got a reporting job right out of college where I worked crazy hours and that really impacted my sleep. But I still got up sometimes at two in the morning because I was a morning reporter and I still had to train for my marathons. But as my health got worse when I hit 25 years old, I ran my third marathon in Seattle and then seizures came back with a vengeance after that one.

Nancy Volkers: So you've really been sort of all over the country. Grew up in Minnesota and then, let's see if I can get this right. Nebraska, Oregon, Michigan, is that right? Okay. And when you were in Oregon is when you ran the Seattle Marathon and that's when you started having a lot of seizures, but that's also when you learned about the concept of like epilepsy specialty care, like an epilepsy center, right? Like your family came to see you and you just happened to notice that there was an epilepsy center, I think it was at Oregon Health Sciences, they happened to be on campus or something.

Were you aware that there was such a thing as epilepsy specialty care before that, and how did that really change the trajectory of your treatment? 

Stacia Kalinoski: No, I had no idea. I mean, I saw my neurologist but I didn't want anything to do with epilepsy, so I didn't even consider it. But my mom saw a flyer at the Oregon Health and Science University, and she said, Stacia, look at this. There's epilepsy centers. So I looked into it and I was about to move to Grand Rapids, Michigan for my next job, and I looked into it and there were two Level 4 epilepsy centers there, and I had to wait awhile to get into one of  them, but I think after quite a few months, I became one of Dr. Brien Smith's patients at Spectrum Health and I was lucky to be under his care, because then he later referred me to Minnesota Epilepsy Group. So I realized how lucky I was to go from one great epilepsy center to the other one because so many people across the US don't have access to that level of care. 

Nancy Volkers: None of your previous neurologists had really talked to you about specialty care, or maybe they had, and you had kind of tuned them out because the word epilepsy wasn't something you wanted to think about?

Stacia Kalinoski: Yeah, so I mean, I saw the first neurologist when I was on campus at the University of Minnesota, but that was pretty short lived because I had one seizure and then another one, but then they seemed to go away, so it was like, well, I'm one and done two and done. But then in Oregon I saw my first neurologist, and he is, he was good, right? He started me on medication. I checked in with his nurse quite a bit, so they were really on top of my epilepsy. I just wasn't, I was a bad patient. I didn't take my medication. 

Nancy Volkers: So how do you get from someone who's not taking their medication to a documentary filmmaker who decides to produce a documentary about epilepsy?

Stacia Kalinoski: I stopped taking medication, my first one, because it gave me really, I became really moody and I thought it was the medication. Looking back when I interviewed an epileptologist, it looks like it could have been the seizures themselves, but I'm like, I can't take this. I stopped taking it. Well, the seizures worsened, so I eventually kind of got back on track. 

When I moved to Michigan, I started another medication. So from there, ended up losing my career in Michigan, moved back to Minnesota, and it was in my doctor's office when she said, “You are a candidate for surgery,” that the idea for this documentary came to me. It was just random. 

I was a candidate for a resection, and I didn't know the risks really. I mean, if she told me about them, I just kind of tuned her out because I was so set on, “I want to have surgery and I'm going to do this documentary.” 

So my goal was to educate people. I felt I had been wronged by losing my career, and I thought Hey, if we just educate people about epilepsy, more people will be accepting and more people maybe won't lose their careers, is what I hoped.

So right away I connected with Jerry Kill. He was the coach of the Minnesota Gophers football team at the time. And then eventually a family in Atlanta. And PBS [US Public Broadcasting System] ended up picking up the film, and then the International League Against Epilepsy ended up streaming it on their website for a while too.

So I got viewer emails from across the US and then across the world. And it really validated my purpose, I think, to create the film. So it was pretty special. 

Nancy Volkers: So you mentioned that you got the idea for the documentary when you were told that you were a candidate for surgery and you were really excited about that.

Not everyone is really excited about the idea of brain surgery. Some people are scared to have epilepsy surgery and they sort of view it as a last resort, and some people refuse to have it. So why were you so enthusiastic about it and how did it go?

Stacia Kalinoski: I was enthusiastic, I mean when my doctor told me I would've jumped ahead and went straight to the OR at that point, because my life had hit a breaking point. If I wanted to work again, if I wanted to exercise, drive, enjoy life without stressing about getting less than seven hours of sleep a night, surgery was my only option.

I had failed three meds and I feared having seizures in public because I had before and people were not kind when I did. But you saw my documentary and my seizures, and they were pretty scary to watch. I had temporal lobe onset and then it spread to my frontal lobe, and that resulted in me thrashing my arms and screaming.

And I figured that if surgery was an option, that meant it was successful enough that it could work for me too. So I probably should have paid more attention to risk, but I just put my faith in my doctors and I said yes right away.

Nancy Volkers: So throughout the book, I think you do an excellent job of weaving in education about epilepsy. You explain the different types of seizures, you explain different types of memory loss. You sort of walk us through the surgical evaluation process. You didn't have to do that; you could have just told a personal narrative. So why was it important to you to add this educational aspect to the book?

Stacia Kalinoski: Well, I love memoirs, but I always want to walk away with something, especially if it's a medical book. So I decided that if I'm going to tell my story, I want to give the reader something to walk away with besides inspiration. So it was my opportunity to raise awareness for general readers as well as help people with epilepsy better understand their seizures.

And the more I wrote, the more questions I had, like, why did I get so moody at first? Why do I have long-term memory loss dating back to childhood when my seizures didn't start until my 20s? Why did I have memory loss even though there was no damage to my hippocampus as they found it after surgery? I'm a curious person. That's why I was a news reporter. So that just led to question after question. 

Nancy Volkers: Well, I think it makes for, it's not only a memoir, but it's also a really a great way to become educated about epilepsy, 

Stacia Kalinoski: I think back to when I was diagnosed and my mom trying to find information about it, I mean, granted this was 2005 and there just wasn't a lot out there, but with the film and the number of people telling me how much they had learned that they didn't know, I just realized a memoir could share even more.

Nancy Volkers: Yeah, exactly. So you said you had surgery 10 years ago and your book ends sort of just after the surgery happened. So can you catch us up a little bit, maybe spoiler alert if you haven't read the book yet, but what has life been like for you since the surgery and how are things going now?

Stacia Kalinoski: So I am still on a pretty large dose of medication but that's fine with me. I still have an occasional aura, which is a metallic taste in my mouth that I didn't have prior to surgery, but it's usually triggered by something. So once it was penicillin, another time it was a muscle relaxer that I found could lower the seizure threshold, and it definitely did. But I really can't complain about an occasional aura compared to what my seizures used to look like, what they used to feel like. So I'm just so grateful for the surgery outcome.

Nancy Volkers: Given that you, your seizures started when you were a young adult and you went through a lot of epilepsy related issues as a young adult, do you have advice for young people who are faced with a new epilepsy diagnosis? Just anything that might help them? 

Stacia Kalinoski: Yes. Seek out support.

I know some people want to deny it and shove it aside at first like I did, but there are a lot of people in the same boat who really want to offer advice. So I'm on various Facebook groups along with the website Friends with Epilepsy. But talking to people is even better. The Epilepsy Foundation and Epilepsy Alliance America offer virtual support groups and I attend the Epilepsy Foundation of Minnesota virtual and in-person group.

And I think it's so important just to, for me, to offer my experience up with surgery to those who are considering it. Because there's a lot of people that are kind of on the fence.

Nancy Volkers: So again, this is Stacia Kalinoski and her book Racing Uphill comes out July 1st.