Music's Like a Snuggie for Your Soul


Saturday, November 3, 2012

Purple Gophers and Mustaches

In case you haven't heard, November is Epilepsy awareness month. I knowiknow, every month is something-awareness month and it's pretty dang overwhelming. There are so many worthwhile causes out there with symbols and colors galore, but purple is lovely and we definitely need your support. 

Granted i'm biased, but this is a cause that's in dire need of attention. Seizures aren't just a drag; they aren't merely a frustrating, humiliating, inconvenience; people are dying

More than 50,000 people in America die on account of seizures each year. That's 50 thousand devastated, heartbroken, grief-stricken families every. single. year. That's waaaay too many moms and dads burying their babies. If we bunched it all up, that's enough sadness to sink a goddamn battle ship, (and that doesn't even include the anguish felt by friends and caregivers of these individuals, and the anguish that endures year, after year, after year in everyone's hearts). Epilepsy steals more lives annually than breast cancer, yet the funding is about $35 per patient vs. $2,976 per patient (according to abcnews), respectively. 

It's staggering enough, but we also can't forget the millions of families who are waging war daily against seizure disorders. 3 million people in the U.S. have been diagnosed with epilepsy (that's twice the population of my home state). About a third of these people don't find good control with medications. So in addition to the thousands who succumb to the disease, there are at least a million more in our country who are robbed of quality of life and their most intimate sense of security. This results in a ripple effect of constant worry and fear and hyper-vigilance for all those who love somebody with epilepsy.

If we had a dollar for every time a mom, sister, boyfriend, daughter, etc. watched helplessly and begged and prayed and pleaded for convulsions to end, we'd have a mint to contribute to funding and research. But we don't have that money, and if we don't start talking about it, we never, ever will. 

While knowledge and understanding of the disease has improved, it's still widely misunderstood and seldom discussed. We've made leaps and bounds since the Salem Witch Trials, but the stigma is still there. People don't regard epilepsy as a burnable offense anymore, but popular culture these days tends to ignore seizures entirely, save for the occasion they're the butt of a joke or featured as a bizarre oddity on a Hollywood medical TV show. 

For more information, here's an article that appeared in Newsweek a few years ago: Epilepsy: Overlooked and Underfunded

While i vilify those out there who mock people with epilepsy, i realize i'm just as complicit in my silence. I haven't much talked about it outside of absolute necessity. I've run from it and done all i could to deny it. But i've realized for each of us in the literal knock-down-drag out brawl against this monster who have a voice, there are many more out there who don't. 

So, God help me. I'm talking about it. I'm learning. We'll get there. 

It can seem a daunting venture. Who really wants to hear about these sorts of things? It's an awkward conversation. Nonetheless, we have to stand up. The state-of-affairs on the epilepsy front is not okay! A life riddled with seizures is synonymous with terror, and too often, hopelessness. But when i noticed this headline last night my eyes and my heart welled up in a rare moment of optimism:
Gopher football team to raise epilepsy awareness Saturday[!]

Jerry Kill, head coach of the University of
Minnesota football team
Thanks to this brave man who contends with the burdens of epilepsy, the first ever college football game dedicated to raising epilepsy awareness was played today! The Gophers may not have put a win up on the scoreboard, but it was sure as hell a win and then some in my book. I feel so hopeful.

Here's some of that purple in action!
What's more, he and his wife stepped up to the plate yesterday to become public spokespeople for epilepsy. I can't begin to tell you how elated this makes me. This. This is the sort of advocacy we desperately need. 

Now pardon me here, but where the fuck are you David Beckham, John Travolta, Neil Young, Danny Glover, Chief Justice Roberts, etc., etc.?! We could certainly use a little star power in the fight against epilepsy. Please, for the whopping 65 million people struggling worldwide with this disorder, let's turn the lime light at least a little purple. 

Also, i noticed November is doubling as prostate cancer/men's health awareness month which guys are deeming 'Movember' and sporting mustaches. I won't lie, selfishly at first, i was a bit loathe to share the month, but i feel we can all win here if those guys would man-up and dye that upper lip fur purple. Thanks in advance, guys!


  1. Fantastic post. I have so much to tell you, including a huge embrace for that photo of Jesus The Pharmacist. I'm posting it on my post tomorrow with a link to dear you.

    We're going to meet one of these days. We are.

    1. Ha i'm really glad you liked it! It seemed awfully subversive and controversial, so i nearly thought better of it, but it was so perfect, i'll endure the hellfire and teeth gnashing if i have to!

      Of course we are, Elizabeth. We're gonna go surfing in Hawaii and then i'll take you on a river trip. I don't know Sophie well enough to know for certain, but i'm not convinced she couldn't go with. We've done trips for people with paraplegia and all sorts of handicaps. I know it's ambitious, but i'm totally serious.

  2. Ok, off topic a little but I am sick to death of the f***ing pink ribbons. Even batteries are sold in pink for breast cancer! My mom died of Ovarian cancer so I am little biased. I have no problem with raising money for breast cancer but the majority of the money raised for all the pink items are just meant to promote their product, not cancer.

    Now on topic. I admit I know almost nothing about Epilepsy. Is the word Epilepsy an umbrella term to cover many different seizure disorders or is Epilepsy a diagnosis? Are you born with it or can you acquire it later in life? What are the causes? How many people can live somewhat normal lives with medication? Is it genetic? Can a parent pass it on to a child? (I know it used to be said that a mother with epilepsy could pass it on to her second child but not her first. ???) How many people with Epilepsy can live independently?

    1. I hear you, Birdie. All that pink makes me a little want for a dose of Pepto Bismol, myself, but i've never been much of a pink girl (despite what my profile picture may suggest).

      I realize research has to be fairly specific to individual types of cancers being the treatments tend to vary, but it seems like they could fundraise in a concerted down-with-cancer effort and allocate the resources appropriately. As it is, it seems we're discriminating against rarer cancers that need just as much, if not more advocacy and attention. That disease is such a beast; i tend to think we'll need a more unified, collaborative effort if we're gonna make a dent in it.

      I hate the idea of anyone capitalizing on an illnesses. I wish sure there was an easy answer for all of it.

      All i know is in the case of epilepsy there's enough residual stigma that people are hesitant to address it. Most people still don't know what to do if somebody has a seizure. There's a ton of misinformation out there yet. I don't know if inundating the world with purple ribbons is the most effective approach, but it's a least a means of broaching the conversation.

      Those are great questions, probably common ones- i might answer them in a post. If it doesn't materialize, though, i'll get back to you here in a jiffyish.

      Thanks a million, Birdie.

  3. Hello, Would it be okay if I borrow your epilepsy awareness symbol to put on my web page I'm creating?


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