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

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with The Epilepsy Network (TEN)

November has just flown by! Today is the last day of Epilepsy Awareness Month and the interview today is with Tiffany Kairos of The Epilepsy Network (TEN).  One of Tiffany’s goals is to get the NFL to support Epilepsy Awareness.  Having grown up in Omaha, I am a huge football fan (Go Huskers!) but I recognize football carries with it the risk of a concussion – or several.   With the coach of a major college football program not keeping his battle with epilepsy and uncontrolled seizures a secret (thank you, Coach Jerry Kill of the University of Minnesota Gophers), awareness of epilepsy in the football community is growing.

(The only problem I have with Coach Kill is his team beat my beloved Huskers this year! Ouch!)

Let’s hope between Coach Kill and the work Tiffany is doing, the NFL (and the NCAA while we’re at it) will officially support Epilepsy Awareness Month one November.

In the meantime, please welcome Tiffany!

Tiffany Kairos, Founder
The Epilepsy Network

Robert’s Sister:    Tell us the name, mission and goals of your organization. 

The name of my organization is The Epilepsy Network (TEN). The mission of The Epilepsy Network (TEN) is to reach out all across the world to educate, advocate and break down the stigmas surrounding Epilepsy. In addition, our mission and goal is to UNITE those with epilepsy worldwide, uplift one another and stand strong to find a cure!

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization? 

The Epilepsy Network (TEN) was founded in 2010. The Catalyst for creating The Epilepsy Network (TEN) came from my own journey as an Epilepsy diagnosee. In the beginning of my journey, I felt alone, confused, frightened and uneducated about my condition. I didn’t know of anyone else with my condition and I felt that I would encounter stigmatism. All of this became my mission to learn everything there is to know about Epilepsy, meet others with the condition and provide a network where people could discover more about the condition and that they were NOT alone. That they have support and they do not need to feel ashamed in any way about having Epilepsy. 

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

I see that the greatest need for Epilepsy Awareness and Advocacy is: Understanding, Compassion, Education, and Opportunities to Be Heard.

What The Epilepsy Network (TEN) provides to fullfill that need is ALL of this and much more. We provide educational imagery and material, Factual and Myth Breaking Imagery and material, Inspirational and News Related Articles from around the world, Opportunities to speak out and let your voice be heard, Opportunities through unique missions to attempt to involve companies to show support (NFL Support Epilepsy Awareness & Turn Google Purple For Epilepsy) and we continue to grow providing more ways to learn more and do more to create change on behalf of Epilepsy Awareness. 

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

What I want people to know about Epilepsy is that there are a staggering 65 million men women and children all around the world diagnosed with Epilepsy. Epilepsy can happen to anyone anywhere and at any time. It’s something that must be given spotlight. Must be given recognition. Must be freed from its stigma that still exists to this day. 

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

The events that The Epilepsy Network (TEN) actively hosts in order to raise awareness are NFL Support Epilepsy Awareness, Turn Google Purple For Epilepsy and our Shine Your Light For Epilepsy Awareness event which is currently in its 2nd year, happening every November all month long.

It is our hope that we may convince the NFL to support Epilepsy Awareness on the field in November just as they do for Breast Cancer Awareness in October. Especially with the rise in Concussions within the sport. It is also our hope with Google, that they will support Epilepsy Awareness by featuring a Google Doodle on their home page any specific day in November in honor of Epilepsy Awareness. With Google’s estimated 300 million interactive users per day, it would pose as a wonderful educational opportunity for Epilepsy Awareness. Our Shine Your Light For Epilepsy Awareness event rallies families and businesses around the world to show their support for Epilepsy by shining one or more Purple lights causing individuals to inquire about the light therefore providing an opportunity to educate about Epilepsy!

Robert’s Sister: Tell us about your successes!

The Epilepsy Network (TEN) has successfully reached out to thousands of supporters from around the world whether they be diagnosed, friends and/or family of. We have successfully achieved support and shout-outs from various celebrities and athletes which are located within our Facebook page photo albums, I and the network have been featured previously in the Epilepsy Advocate magazine for my personal blog (TiffanyKairos.com), I have acquired multiple proclamations from cities in Ohio and the state of North Carolina and we hope to continue to achieve many successes as we grow. 

Robert’s Sister:   How has epilepsy and your organization affected your life?

Epilepsy has affected my life personally in the most positive of ways. As foreign as this may sound, I am thankful for my Epilepsy and feel that it is my blessing in disguise. My diagnosis and my organization The Epilepsy Network (TEN) have humbled me and has ignited my heart and soul in a multitude of ways. I have learned to embrace life as I had never done before. It has made me a much stronger and more vocal individual, I am achieving goals I never knew I were capable of. I am doing what I always wanted to do which is give of myself and help others. It has opened my eyes to what I feel is my purpose in life. It is something that continues to grow me, teach me and strengthen me. It is something I plan to do for the duration of my life. 

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose?

My involvement with The Epilepsy Network (TEN) as the founder means the world to me. It gives me the opportunity to journey Epilepsy on a personal level but also advocate for Epilepsy in a way that I see best for the world. As the founder, I choose not to copy or mimic what anyone else is doing but to advocate in my own unique and special way. A way that I hope others will embrace and love.

Robert’s Sister:  Please tell us more about the person answering the questions here. 

Tiffany Kairos, 27, is a daughter, sister, and wife diagnosed with Epilepsy. Tiffany is also an Advocate for Epilepsy (The Epilepsy Network). She enjoys life to its fullest. A devout Christian, lover of music, and art. She also enjoys blogging, detailing her journey with Epilepsy (TiffanyKairos.com) and giving selflessly to helping anyone in need whether it be within her community or around the world. 

Thanks to Tiffany for sharing her story and her passion with Robert’s Sister!  I hope one day to see more purple on the football field during Epilepsy Awareness Month and to see Google recognize Epilepsy Awareness Month as well. 

Tiffany can be reached through her blog, Facebook, Twitter (at either @TENofficial or @TiffanyKairos), as well as LinkedIn. 

Let’s spread the purple! (And, no, I don’t want to talk about the Huskers' loss yesterday.)