9.16.2013

ignorance

Last Saturday my brother Scott, who is a senior associate athletic director at the University of Arizona, sent me an email with a link attached, telling of the seizure that Jerry Kill, head football coach at the University of Minnesota, had on the sidelines during that day's game. I immediately went to the link, skimmed the article and read some of the comments. This is what some of them said:

"Jerry, it is time to hang jock."

"All of us Viking fans have enough seizures watching them!!"
"He should retire before he dies on the sidelines."

To each of them I replied, “you and your ignorant comments suck. learn something useful,” and then I attached the link to my blog.

I went back to read the article more closely and learned that Minnesota’s athletics director, Norwood Teague, had said that he "hoped Kill would do a better job of managing his condition.”

The clueless remark made me as ill as the rude comments following the article. Would any of these statements have been made if a cancer victim had collapsed on the field? Doubtful.

It pains me how much epilepsy is misunderstood, stigmatized, made fun of, underestimated, and that some people hold the victim culpable for their behavior and management of their disorder. It's not that simple. If only everyone could be cured or, at the very least, have their seizures controlled by medication. But the sorry truth is that at least a third of individuals, like my nine-year-old son Calvin, continue to have seizures despite ingesting massive amounts of medication, all of which have heinous side effects and some of which include making seizures worse. Even some of those compelled to have brain surgery continue to have seizures and must remain on medication. It is estimated that, annually, 50,000 Americans die from epilepsy and related causes such as drowning and head injuries, which is more than die each year from breast cancer. And yet it remains a mere blip on the screen in terms of awareness, compassion and funding.

I want to jump through the computer, grab these ignoramuses by the scruff of their necks and shake the living daylights out of them, telling them of the injustices of epilepsy. I'd like to smack them down and wipe those glib smirks off of their lame-ass faces once and for all. Try living at my house for a week, I think, try walking in someone's shoes who has epilepsy or cares for a loved one who does. Then see how you feel.

Sadly, one in one hundred Americans have epilepsy, which means that most of us likely know at least a handful of people who suffer from the disorder; we just aren't aware of it. People with epilepsy often keep it hidden because of fear of discrimination, bullying, shaming and ostracization. That shouldn't be the case, and with many of its sufferers still in the closet, it makes advocacy that much harder.

Wake up America. One in twenty-six of you will get the diagnosis some day ... or your mother, your father, your sibling, your wife, your husband, your child. Epilepsy is a terrible, life-threatening disorder. Have some compassion y'all.

To donate to CURE epilepsy go to: http://www.calvinscure.com

Mark Vancleave, Minnesota Daily

6 comments:

  1. Shocking ignorance. I'm sending along this link to my friends at the Epilepsy Foundation here in Los Angeles. I hope they'll pass along to the affiliate in Minnesota, if they haven't heard about it already.

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  2. There's this, too, on the CBS Sports site. Unbelievable! http://www.cbssports.com/general/writer/gregg-doyel/23650795/gophers-jerry-kill-wants-to-coach-should-it-be-his-call

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  3. i know. Gregg Doyel is a complete dolt for saying what he said in this. what risk to fans????? whatever, dude.

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  4. I made a FB post about this today... Makes me SOOOO angry.

    I linked your blog to my post, if that's okay.

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  5. I am from Minnesota, a mother of a child of uncontrolled epilepsy and involved with our Epilepsy Foundation. Our local papers (StarTribune) have had multiple misinformed/inappropriate stories written also. It is still headlined in most news casts, and the current story is that U of M is standing behind his coach.

    Coach Kill has been active in the Minnesota Epilepsy Foundation. The Epilepsy Foundation has a no pity campaign and action steps for our members to take. http://www.epilepsyfoundationmn.org/nopity.aspx. Hopefully, the stories will be a platform for education and attention.

    Ignorance is one thing - Judgement makes me ill ---

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  6. I am in Texas and have a son with Myoclonic Astatic epilepsy. I am furious with the ignorance and audacity of these so called " journalists". It is heartbreaking that not only do epileptics have to live with never knowing when they will seize but to also live in a world with this kind of bigotry . I am proud to be a member of the Epilepsy Foundation so we can help educate people and seizures. I am also grateful I discovered your blog today. Thank you so very much for sharing your son's bravery and kindness with us. I will pray for you and your family.

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