Epilepsy Awareness and Advocacy: Interview with Coach Jerry Kill

I don’t know how I got so lucky! Coach Jerry Kill’s marketing team recently contacted me and asked if I was interested in interviewing Coach Kill.

Coach Kill, the former head coach of the Minnesota Gophers?

Coach Kill who continued his high-profile job while seizures very publicly besieged him?  

Coach Kill who became an inspiration to those with epilepsy and those of us who care for someone with epilepsy?

Yep, that Coach Kill.

You want me to interview him?

Pinch me! I must be dreaming!

Typically, I run interviews throughout the month of November to bring readers the stories of those with epilepsy and those caring for someone with epilepsy. November is officially “Epilepsy Awareness Month” but, as anyone with epilepsy knows, epilepsy really doesn’t care what month it is! Seizures happen whenever and wherever.

Even to a head coach on the sidelines of a nationally televised football game.

This interview cannot wait until November! I so appreciate Coach Kill taking time out of his busy schedule (on a Sunday, no less!) to talk to me about his epilepsy and how he is using his high-profile platform to help others.  

My interviews are typically written but Coach Kill wanted to have a phone interview instead. I quickly agreed and had a wonderful conversation with him. He is easy to talk to and didn’t even mind that I am a Huskers fan. In fact, he said he has lots of friends who are Huskers!

Robert’s Sister: Coach Kill, thank you for taking the time to answer a few questions about your epilepsy and advocacy work. When were you first diagnosed with epilepsy?

Coach Kill: I was officially diagnosed with epilepsy in 2006. I had a few things that happened before that. Nobody knew too much about it.

Robert’s Sister: You also had cancer. Did the cancer bring on your epilepsy?

Coach Kill: No, the cancer didn’t have anything to do with it. It was coincidental that epilepsy was caught around the same time.

Robert’s Sister: Being diagnosed with epilepsy as an adult can be a life-changer. Tell me how you dealt with the diagnosis.  

Coach Kill: I was the head football coach at Minnesota at that time and stayed for five years after the diagnosis. It is hard to balance out life beyond football. I didn’t sleep a lot and didn’t eat right. All the things you aren’t supposed to do to control seizures, I did. I am wired to take on tough jobs but the body can only take so much.

Robert’s Sister: You became an inspiration to many (including me) after demonstrating such perseverance. What gave you such strength to keep going? You must have a very strong support system.

Coach Kill: I am wired to keep going and I do have a great support system. Kammie Powell – one of our athletic trainers – knew what to do on game day if something happened.

My wife, Rebecca, and kids, Krystal and Tasha, have been there through all of it. I have the right people in my corner.

Jill Gattone (of the Epilepsy Foundation) introduced me to Dr. Brien Smith who is a neurologist in Grand Rapids, Michigan. I had hit rock bottom. I never missed a game and then I had 16-17 seizures in two to three days. Dr. Smith did a great job in getting my seizures under control.

Dr. Patricia Penovich – she’s with the Minnesota Epilepsy Group– also partnered with Dr. Smith to help me.

I haven’t had any seizures in about a year and a half.

Robert’s Sister: What type of seizures do you have? My brother has Complex Partial Seizures (even after two surgeries and loads of medications).

Coach Kill:  I have both the grand mal or tonic clonic seizures and the staring (absence) seizures.

Robert’s Sister:  What treatments have helped? 

Coach Kill: Definitely medication but also exercise and diet and I am sleeping a lot better. I used to have trouble sleeping and would only sleep two and a half to three hours a night. I am sleeping a lot better now.  

I still communicate with Dr. Smith even though I am now in New Jersey. I am in the process of finding a doctor in New Jersey and Dr. Smith is helping me with that.

Also, I am active in helping other people with epilepsy and have my own foundation.

My wife and daughters have been through it all with me.

Robert’s Sister: Did your family treat you differently after your diagnosis?

Yeah, my wife probably did. She was very cautious about what I was doing, worries and is hyper-alert. She is very worried about me having a seizure at night. If I am on the road and don’t call for a while, she worries.

My wife was part of the reason I considered leaving as head coach. I was tired of putting my family through it all. Once I left the coaching position at Minnesota in 2015, I basically did my own program: exercising and eating right. We went to Florida and I did some speaking, wrote the book (Chasing Dreams: Living My Life One Yard at a Time) and laid low. I realized I was very exhausted.

Robert’s Sister: What are you up to now?

Coach Kill: After a while, I went to Kansas State as an Associate Athletic Director and am now Offensive Coordinator at Rutgers. I am enjoying doing what I am doing and my body is able to handle it. I didn’t want to give up what I love to do but being a head coach – it’s a lot different than being an assistant coach. I had to make a compromise.  

Robert’s Sister:   What is the biggest impact epilepsy has had on your life?

Coach Kill: The other people that have it. I have been fortunate that I can still do what I love to do. So many people cannot. I had no idea about all the issues. I had no idea that 1 in 26 have it – no idea. I didn’t even know what an epileptologist was. Just the awareness and the struggles that a lot of other people with epilepsy have. Even prestigious people in high ranking positions in companies who don’t want to share they have it. Lots of people worry they might lose their jobs. I am lucky that I have a platform but am inspired by others that don’t have a platform and still keep going.

Robert’s Sister:  Please tell us about your book Chasing Dreams: Living My Life One Yard at a Time. What made you write it?

Coach Kill: I had the time and could write it on the beach with my co-author, Jim Bruton. Jim kept on me about it. It is something where I could talk about football, my life, epilepsy, cancer and my views on certain things. All money raised has gone to my two foundations (Coach Kill Fund and the Chasing Dreams Coach Kill Epilepsy Fund).

Robert’s Sister: You have become a vocal advocate for those with epilepsy. Tell us about your foundations and your campaign to #TackleEpilepsy.

Coach Kill: The Coach Kill Fund is based in southern Illinois and we have teamed up with Southern Illinois Healthcare. Many people with cancer in southern Illinois need to go to St. Louis for treatment which is quite a distance.  The Coach Kill Fund raises money to help if a person has to go to St. Louis for a few days. People apply for funds and the money gets to them in just a few days. The money helps cover costs for hotels, gas expense, medications, travel, childcare, etc. and even funerals.

The Chasing Dreams Coach Kill Epilepsy Fund is affiliated with the Minnesota Epilepsy Foundation. Money goes toward Camp Oz (a camp for kids with epilepsy) and to the Seizure Smart Schools program.

Robert’s Sister: Is there anything else you’d like to say?

Coach Kill: One of the best things that has happened to me because of all of this happened last night at our spring game. Five years ago, someone from Pennsylvania contacted me about his son who had epilepsy and I sent him an autographed picture. Last night after the game, a kid came up to me and said he wanted to shake my hand. He said he was the kid I sent the autographed picture to and he showed me a photo of it on his phone and told me how much it had meant to him. That made my night. It was better than winning any national championship.

Well, Coach Kill, you made my day and I am sure you have many, many other fans. Thank you for your advocacy and your generous spirit. I didn’t think it was possible but I am even more inspired by you than I was before! It really is amazing how even the smallest kindness can make a huge impact on someone. Thank you for all you do!  

Please be sure to check out Coach Kill’s book as well as his foundations.

While I am still a die-hard Huskers fan I will definitely start rooting for Rutgers too!    

Trish