When I set out to start this series, I hoped to spread awareness and raise some money for research and support systems that help families dealing with the disorder.
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.
{source}
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.
{source}
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.
And then…
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?
And then…
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.
(emphasis mine)
Oh friends.
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.
Join us?
Share this with your friends. Talk to your kids about being kind. Mr. Souhan may not get it, but we do.
Always.
Latest posts by jeannett (see all)
- Dirt in a Jar, Laundry Scientists, and Clean Water - October 20, 2015
- Because Cake. - October 11, 2015
- How to design a luxury bathroom for less - August 12, 2015
My Mom suffered from seizures when I was in high school. Although the exact cause was never “found out” (to this day I still believe it was an effect from the diet she was on… she had been very lax about the supplements she should have been taking), she had them for about 2 years, then they stopped. Seeing my Mom have a seizure was hard, but thankfully my Dad handled it like a pro. I can only imagine what it’s like to have a seizure in public, that must be scary for any loved one to watch it happen.
LOVE the article, and hopefully Mr Kill can continue coaching at the U of Minnesota. I think that it’s FABULOUS that he’s doing that.
My step son is a functioning member of society, an adult, a janitor well loved at an elementary school, a husband, a father and an epileptic. Jilly will be just fine. He has had it his whole life and yes cannot drive a car. Works the bus system well! Chiropractic helped it for a while but he chose not to continue it. I think he is doing just fine with epilepsy.
Always…always…Jeannett…love never fails. You know we will all be there proudly wearing our team Jilly shirt cause we love that girl…so…very…much.
I’ve been lost in the Healthy Living Summit world all weekend. I did hear about Jerry’s seizure, but hadn’t heard of this article. I’ve got anger flowing through my veins right now. I’m inspired by your note to the author, I’ve got some harsher words for him. Uff da.
Katie´s last blog post ..Can I Go Back? #HLS13
I have some choice words on the tip of my tongue too. Many only containing four letters. But heated responses only encourage division and defensiveness. Neither of which are healthy or helpful.
Besides, people are mostly good. Even they do and say things that are pretty A-holey sometimes. We’re all guilty of it at one time or another. Albeit not nearly as publicly as a newspaper column.
Truth in love.
Seriously?! He said that?!!! What a kind and gracious response you wrote to him. I wouldn’t be so nice. If people think that the only point of football is to entertain I can see where a seizure would be a downer – but if the point of football is to bring people together, to cheer and mourn and celebrate our humanity together – then having a coach with epilepsy, especially on a college team, is the very best thing that college can do for it’s players. The University of Minnesota has an obligation to teach its students and exemplify the character traits it wants its graduates to exude in “the real world” – compassion, dignity and kindness being a few of them I can think of off the top of my head. What a great post.
Jacquelyn´s last blog post ..Before your feet hit the floor
Agreed.
And if he feels that his epilepsy IS, in fact, interfering with his job…that should be a decision made by him, his doctors and his supervisors. Not the virtual vote of an uninformed and uneducated public.
Sigh…
Just bought my MudLove bracelet and I am super excited to wear it while I’m working in the hospital! I’m a third year medical student and I think it is SO important that we hear stories like Jill’s so we remember that we are treating PEOPLE, not diseases or seizures or anything like that. I actually start my neurology rotation next month, so the timing is awesome. You go, Jilly!
Yay! Thank you so much! And what a coincidence that your rotation is so fitting! Thanks again!
Oh my word that article makes me so angry , how completely ignorant and unkind… I mean seriously! Ugh. Thanks for this post.
Man, Jeannett. I totally heart you. Love that the Lord has blessed you with the gift of wit and words. You craft your postings to honestly and perfectly. Thanks for using the voice God has given you. Go Team Jilly!
Kimber´s last blog post ..Breathe
That man’s words make me sick to my stomach. And not just because my own child has epilepsy. But because there is no place in a civilized society for ignorance like that. Shame on him.
And HUGE kudos to you for a gracious, well spoken response. I love this post.
My 3 year old started having seizures two weeks ago. He has not been diagnosed, but I am getting a quick education in this world of seizures and epilepsy. And since it has happened I am talking to person after person who “knows a guy” or “has a brother” who has seizures. I didn’t know it was so…common! 1 in 10– I’m surprised, and not, at the same time.
Katherine´s last blog post ..Here Is My Triathlon Summary, Part One
As always, I love your attitude. I live in MN, so of course I have been hearing the hype around Coach Kill’s seizures, especially the one last weekend during the game. Some people are worked up about it (in a bad way), others are super casual (too much so), and many others are somewhere in between. Did you happen to notice in the news that Coach Kill will host the Second Annual Epilepsy Awareness Game on October 26th, 2013 when the Gophers play Nebraska? I’m not even a Gopher fan (Go Wisconsin BADGERS!!), but as a special educator, I love that Coach Kill is working to increase awareness.
Shawna´s last blog post ..The Simple Things
From Minnesota here. Coach Kill is the best. The Star Tribune guy is a jerk. Breaks my heart that he said that. And so publicly. So glad to see the University and the players and coaches standing beside Kill. I know that Coach Kill has made every effort here to reach out to kids with epilepsy and to inspire them to pursue their dreams. I hope he gets the chance to bring the Gopher program success and in so doing, make the Star Tribune guy eat his words.
Anne @ anne b. good´s last blog post ..Soup’s On: Alpine Veggie Soup
Oh my! I hadn’t heard about any of this, so I’m very glad you shared. I love love love the point about him being called a hero if it was cancer… Such a sad history and current view of epilepsy. Lets change it!!
Mari´s last blog post ..The Day We Walked Away From Our American Dream
I have read your blog for over a year but am commenting for the first time. What a beautiful and incredibly strong post!! Don’t people know by now that mama bears have NOTHING on mama humans?!? Keep fighting the good fight for Jilly and so many others. Love DEFINITELY wins.
I… Wow. Loss for words. That last piece from the article? Shattered my heart. Broken pieces. You are doing so much good Jeanett. Love wins, indeed. Always.
That is a really… bizarre opinion. I mean, it’s worse than bizarre, but it perplexes me most of all. I can see people with epilepsy not being able to do certain things that could cause harm to themselves or others (like, operating large machinery if their seizures are not reasonably controlled). But, thinking that people with epilepsy shouldn’t be in public, where they might cause mild discomfort from an onlooker? What??
Andrea @ This Pug Life´s last blog post ..Pug Reacts to Raccoon Sounds
Thank you. Thank you. Thank you for being a mama that is willing to speak up about the stigma of Epilepsy. I had early teen onset epilepsy with no rhyme or reason as to why, other than slightly abnormal brain waves. From the time I started at age 14 (I’m 30 now), I was extremely worried about stigma. Luckily, I had a very supportive and caring family and church community that didn’t let that happen. My heart breaks for all those who misunderstand Epilepsy. I consider it a blessing in my life because I have learned empathy and care for those whose medical conditions are worse than mine, no matter what they’re dealing with.
hey im dj, im 18 now and i have had peiliepsy since i’d say 3rd or 4th grade and i was misdiagnosed with a.d.d and my doctors finally re~diagnosed me after i had a minor seizure in north dakota while visiting my dad (well it wasn’t that minor i had fallen and hit my head in his small trailer.) and when i went home to Washington, i went straight too the doctors and the ordered an immediate EEG (this was in 2011 when i was re~diagnosed) by 6:30 that night i was diagnosed with epelipsy i told my friends and they avoided me like i had the plague, lol i told them to go home and do research on my condition the next day they started to talk to me again thye were timid about making jokes about it but what did i care i was making jokes about it calling my doctor stupid for the misdiagnosis when i was younger, but oh well im here still even though i’ve had some major episodes… i was diagnosed with juvenile myoclonic epilepsy which included absence seizures (that is what my a.d.d diagnosis was about) also i have mild jerking of my arms but it’s mostly my neck that gets bad my neck jerks really hard to the left and it really hurts. i take 2 pills twice a day now and the seizures are under controll some what i still have small neck jerks here and there i’ve only had one grand mal and i was at a bowling alley and i fell into a door then the concrete face first i dont remember anything except bits and pieces of walking out of the hospital and getting into my moms car and going home and sleeping for the next 16 hrs. that was the longest time i ever slept;
thanks reading;
dj
dj´s last blog post ..FedEx, Countless Possibilities, & Giving Back {giveaway}
Psychological testing, assessment and clinical trsatment should be an important part of their concern,HR Departments, employee trainings and assessment xhtml search engine optimization of employees interest them
too. On average, a chgild will not always have so done so.
Therapy is not about playing Sherlock Holmes but is of playing the less glamorous part
of Dr. She faces 20 years in prison after being convicted of first-degree murder.
Hattie´s last blog post ..Hattie