My family being one of them.
My desire to spread awareness was based on the simple fact that before my own daughter was diagnosed with it, I really had no idea what it was. All I pictured were the flailing Grand Mal seizures you see in movies. I still thought that you couldn’t have a driver’s license, and that you couldn’t go swimming.
But that was about all I thought I knew.
Being thrust, full force, into this world of epilepsy, I see how wrong my “facts” were…and as friends and family ask questions, I see that their knowledge of epilepsy is similar to what mine was.
When you look at the statistics, it’s staggering.
The fact is, that you will likely know someone with epilepsy as some point in your life. Actually, it’s likely you know someone NOW, but maybe they haven’t told you. Out of fear. Of how you will treat them after knowing the truth. Shame. Embarrassment. Worry that you won’t believe in their strengths anymore.
And who would blame them?
For centuries epilepsy was considered a curse of the gods, or worse. For example, a 1494 handbook on witch-hunting, Malleus Maleficarum, written by two Dominican friars, said that one of the ways of identifying a witch was by the presence of seizures. This book guided a wave of persecution and torture, which caused the deaths of up to 100,000 women thought to be witches.
Misunderstanding continued for many more years. In the early 19th century, people who had severe epilepsy and people with psychiatric disorders were cared for in asylums, but the two groups were kept separated because seizures were thought to be contagious. In the early 1900s, some U.S. states had laws forbidding people with epilepsy to marry or become parents, and some states permitted sterilization.
Even as recent as the 1960s, people with epilepsy were tucked away in old leper colonies.
It’s tempting to believe that this is all for the history books. That we’ve moved past this.
But, a story getting a whole lot of press this last week is proving otherwise.
Jerry Kill is the head coach for the University of Minnesota football team.
He also happens to have epilepsy.
When I read the news bite about Coach Kill having a seizure during half time last week, my immediate response was that of excitement and hope.
“Andy, did you know that the Coach for the University of Minnesota has epilepsy? It’s awful he had a seizure, but how cool is that? I love that he’s going for it. Not letting anything hold him back. I just can’t get over how awesome that is!”
And that was that. I saw the whole thing from the lens of a mama’s heart who wants nothing more but for her daughter to live in a world who values her regardless of any “extras” she might come with. While I don’t know much about football, I know that becoming a University coach is no small feat.
Jim Souhan of the Minnesota Star Tribune wrote an article that rocked the epilepsy community. While his words are mean-spirited and certainly ignorant, the sad truth is that he’s likely only writing “out loud” what lots of people are thinking anyway.
The University of Minnesota’s football program, and by extension the entire school, became the subject of pity and ridicule.
Jerry Kill suffered another seizure on another game day, and this time his boss chose to pretend nothing was wrong.
How can a school continue to employ a football coach who has had four seizures during or after the 16 home games he has coached at the school, along with an unknown number of seizures away from the public eye?
How can the athletic director in charge of that coach avoid speaking publicly about such a public and newsworthy event?
No one who buys a ticket to TCF Bank Stadium should be rewarded with the sight of a middle-aged man writhing on the ground. This is not how you compete for sought-after players and entertainment dollars.
How this takes my heart and rips it to shreds.
I will be the first person to admit that witnessing a seizure is a scary thing. It isn’t pleasant.
It’s terrifying to feel so helpless. To not know how long the seizure will last. For seconds to feel like hours. To feel so hopelessly in the dark about what this must feel like for the person seizing.
But as Dr. Diane Stein pointed out in a letter to the editor of Mr. Souhan’s paper, “If the coach had cancer and fainted during four games, he would be heralded as a strong determined man.”
Yet, with epilepsy…something he has as much control over having as one has acquiring a cancer diagnosis…he is seen as bringing shame to an organization. SHAME. He shouldn’t be in the public eye. Maybe he can work in the back office. Or the basement.
To suggest that a person with epilepsy should not hold an important or public post is a dangerous worldview.
To suggest that they belong out of the public eye…that no matter how smart or talented or capable they are…the fact that they suffer from a disorder they didn’t ask for, is enough to require they hide in the shadows of society.
And where does this end? Am I not to run errands with my daughter for fear she may have a seizure in Target? Is Mr. Kill to stop chasing his dream? Do my friends with epilepsy divorce their husbands, quit their jobs, and move to the woods?
It seems like a slippery slope…but is it really? How quickly would society ask that I not subject their own children to the “horrors of a seizure” by visiting a neighborhood park? How quickly would the list of “unacceptable” professions for those with epilepsy grow?
Imagine the creativity, innovation, and hard work we would stifle when you consider these statistics:
So to Coach Kill, I say this:
I realize that you have become the unwitting spokesperson for the epilepsy community, and while it isn’t a job you signed up for, I ask that you embrace it wholeheartedly. Respond in truth and love. Teach the world about epilepsy in your everyday. Keep chasing your dreams. Refining your gifts. You may not realize it, but you, and others like you, are paving the path that my daughter will one day march along.
From the bottom of my heart, Thank You. Thank You for keeping on keeping on. Thank You for inspiring the 468,000 children in the United States alone who suffer right alongside you. And for the 468,000 mamas who are cheering them on. I can’t wait to see how far she goes.
Keep paving, Coach.
And to Mr. Souhan:
I realize you probably aren’t an awful man. In fact, you might even be a really nice guy. But your words were hurtful and ignorant. It isn’t enough for people with epilepsy to carry the burden, or for their families to watch and worry…but to add more shame is not something any of us need your help with. Coach Kill deserves better. My girl deserves better. Make things right. Don’t be remembered as the guy who wrote a jerky column. Be the guy who admitted his faults, learned more, and made it right. Don’t let that article define your career. Let the article where your humility shines be your most treasured piece. It’s okay to make mistakes. It’s not okay to live in them. And then maybe buy a shirt. Jill would be stoked.
The rest of us? The ones who don’t suffer from a seizure disorder? We can help too.
Please consider donating to our #TeamJilly page HERE. Our family will be participating in a 5K benefiting the Epilepsy Foundation of Greater Los Angeles. We’d love your support as we work to embrace our new Normal.
You can also shop our #TeamJilly store for a fun way to support the cause, donate to our fund, and score some great gear!
Epilepsy Awareness needs to happen. And I really didn’t even realize how badly until last week. This is so much bigger than me. My girl. My family.
The stigma for epilepsy sufferers is real. And it’s gross.
Share this with your friends. Talk to your kids about being kind. Mr. Souhan may not get it, but we do.