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Saturday, December 19, 2015

Epilepsy In The News: A Little Less Talk, A Lot More Action

AHEM: *Trigger Warning!
I am not going to be able to do this without snark.
Because I am angry. Because gallows humor seems especially necessary.

Epilepsy: It's been a time for change for a long time. TOO long.
Oh, there's gratitude that it's better than it used to be. I'm not a babbling mess in some dark insane asylum, waiting for Geraldo to come galloping in with his cameras.
But doctors have phoned in treatment, it's all about symptom suppression.

And NOW, we're finally getting news flashes that now, now!- we've had too many deaths from epilepsy.

 Medical News Today: We've done far too little for too long

Well, hallelujah.We've all seen the "functioning" person with epilepsy. We also have our fair share of deaths far too close to home. The trauma of searching, doubting, of being left in a hospital hallway, (I can't be the only patient who has fantastic nightmare fodder.) of missing out on life.. pales in comparison to a child who was the classic "miracle" baby, the child his mother never thought she'd be able to have, dying of a seizure around his second birthday. After he'd already fought to survive that long.
Not only sad... it's painful, and it's been half a decade now. We don't need more awareness, or maybe we do, but we also need action.

This is the last of the seriousness.

Susan G. Komen has good press and bad business models.

Let's take a cue from successful campaigns...

We need Sarah MacLaughlin or Willy Nelson. Preferably both.
Dolly Parton singing her cover of Stairway to Heaven might also hit the spot.

Most charities spend the major buckaroonies on overhead, on glossy ads, on CEOs' salaries.

Epilepsy has walks, but most campaigns are grassroot efforts. We need to go big.
For more money, per hour of research, I would happily sit in a cage and perform puppy eyes.

Oh, those SPCA ads are positively dreadful pieces of woo, I tear up every time. Maybe what we need is catchy music and visuals of functioning and malfunctioning in stark, painful contrast. 
Money , care, research, the willingness to change, to improve, to grow. That's the first step to fixing a situation.

We cannot ignore needless deaths, needless traumas. Not when we can do more than monitor and medicate, to dig around in gray matter. 
Something's gotta give.

Catchy music: pick your poison.

Ok, take it away, Willie, Sarah, and Dolly.

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