Friday, March 25, 2011

Why Epilepsy?

Why not? I guess since Ava has been presumably seizure free (although not pharmaceutical free) since she was around 13-months I should write a bit on why we still identify greatly with this condition. After all it is not a disease itself rather a symptom of some, often mysterious, underlying disease.  A plethora of diagnosis sometimes shake hands with this nemesis. Abnormal synapse of the brain can really change your daily life in very different and unexpected ways.

Epilepsy is the bastard child of research and funding and a hefty jackpot for pharmaceutical sales. You can take your Hippocrates, Sacred Disease philosophy and suck it. Less than $50 per patient is given to the research funding of this condition. Where, when or why did neurology miss the ever so important funding for appropriate research boat?

Ironically, you should thank an epileptic guinea pig if you use drugs for any of the following, they were probably created and tested for seizure control: depression, anxiety, sleep problems, a slew of other mental health stuff, migraines, and even weight loss (and I can’t help but mention you are NUTS if you choose toprimate cocktails over diet and exercise).  To name a few...

To be human, yes we can nearly all identify with. To know EXACTLY what makes us human, we are not quite there yet. And an explanation of divine or sacred just doesn’t do it any justice.

I am pretty excited about the Sacred Disease documentary that is in the works, the trailers look pretty nifty.  The world could use a realistic dose of epilepsy so hopefully they get the funding (or whatever it is they need) in order to release it.

At least I have choices.

I can focus on the thought of a life perceived as that of the injured soldier lying in the video from Metallica, One...
Or I can huummm a bit more calmly to the Red Hot Chili Peppers, My Friends…

“I heard a little girl and what she said was something beautiful
To give your love no matter what, is what she said
I love all of you, hurt by the cold;
So hard and lonely too when you don’t know yourself”

Yea, it usually depends on the day.  Sometimes you need a little more groove than either of those.

Epilepsy (or goofy neurological health) is gritty, over consuming and misunderstood. That's a good short answer to why epilepsy.  As I started this post I was in a bit of a snarky, perhaps self loathing place. Meanwhile after meeting fifty needs of the little people prioritizing my time it came to my attention that Ava's Troops has been blessed with a very generous donation today.

Its Purple Day tomorrow, talk about it! Also come by and support Ava’s Troops here if you are feeling generous. We are very humbled by all the support we have already received, keep the love coming.  A gigantic thanks to Renner Sports Surfaces for their generosity that put our team meter over the top.  It put Kirsten way on top of the runners pack with a
sponsorship today. WOW!!! You can't be grumpy when you get news like that.


TherExtras said...

I love reading your posts, Amanda. You are far more philosophical than most bloggers. You have some great sentences in this one. We share a mutual love(hate?) fascination with neurology.

Thanks for sharing your thoughts here and for continuing to support epilepsy research - even when you are feeling snarky. I will do my bit and tweet this post. Barbara

Deana said...

Happy Purple day...thanks for reminding me! With our cold this week I nearly forgot it! Looking forward to seeing you in a couple of weeks!