There is a special solidarity that comes through sharing the same invisible illness. I have made incredible connections with fellow epileptics from around the world. I am thrilled to debut this new series showcasing the wonderful people I’ve met and their stories.
Kyle Kieffer is my OG epileptic internet friend. He was the first to reach out to me after I started my Instagram. Kyle runs epilepsylifestyle.com where he goes above and beyond to educate, support, and encourage others. Kyle experiences partial seizures and was diagnosed with epilepsy in 2004 when he was in the third grade. As you’ll learn from reading, Kyle doesn’t let epilepsy hold him back from living life to the fullest.
Name: Kyle Kieffer
Location: New York
Occupation: Digital Marketing Specialist
Interests and Hobbies: Snowboarding, jet skiing, golfing, snowmobiling
Three words to describe epilepsy: Faith, hope, and love
What do you remember about your first seizure?
I was walking down the hallway to take a break from class when my life changed forever. I fell to the ground only to wake up in an ambulance soon after. I was told by the EMT and teachers that my grand mal seizure consisted of shaking, convulsing, and a loss of consciousness. This day changed the lives of so many.
Are your seizures currently controlled?
Yes, with the help of a few medications.
How does epilepsy affect you beyond having seizures?
The only major downfall for me is not being able to drive. While we all wish we could drive our own car, not being able to drive has taught me valuable lessons. It taught me how to use new technology like Uber when it first came out. It showed me the importance of networking to find drivers outside of Uber/family. Not being able to drive sucks, but also can teach you so many lessons.
What is the biggest misconception people have about epilepsy?
That epilepsy is not that common, and the only form of epilepsy are grand mal seizures. Spreading awareness these past few years made me realize how important it is to make others realize the differences in seizures.
What do you wish others knew about epilepsy?
While people get inspired by us living with epilepsy, they do need to realize that they are only seeing one part of our fight. Having epilepsy is a 24/7, 365-day fight. It tests your mental and physical toughness everyday and that’s what I don’t think people without epilepsy realize. We may show our strength at one point, but that could change in a minute.
How has epilepsy changed the way you see the world?
Being diagnosed with epilepsy has made me realize that everyday is truly a gift. Too many people with and without epilepsy are worrying about things that can’t control. Why worry about things you can’t control when you can be living this beautiful life you were given? Even with epilepsy, you can push boundaries and live your life to the fullest. Stop worrying and start living!
How has epilepsy effected your personal life?
I really have not let it affect my personal life. The biggest lesson I learned was to tell my epilepsy story to my friends. Doing this opened so many doors from going out downtown to enjoying time on the golf course. When you tell others you have epilepsy, you gain a sense of comfort. You know that you have friends and family by your side if something did happen outside of your home. I really try to not let epilepsy hold me back.
What keeps you going?
I want to inspire the epilepsy community one by one. I pour my heart and soul into this.
Anything else you would like others to know?
Never let epilepsy hold you back. You may think that seizures are controlling your life, but it doesn’t need to be that way. Tell your epilepsy story and gain that sense of comfort from others so you can go out and enjoy this beautiful life!
You can find Kyle at epilepsylifestyle.com, on Instagram @epilepsylifestyleblog, and on the Facebook page Epilepsy Lifestyle Blog.