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.

DO SOMETHING!

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.

Breaking the Same Ol' Record...

Slogans help us recognize product-
"I'd like to buy the world a Coke®™" (and keep it com-pa-ny!)
NBC has its rainbow peacock.
Breast cancer has its pink wash and its forgetting that it's not just pretty pink and it's not all sexy. (Men get breast cancer, too!)
Breast cancer isn't just pink chicken boxes and tshirts.
NoH8 has duct tape and face paint.

Epilepsy gets... Rehashed slogans.
Purple boxing gloves (Mama said, "knock you out!"- with love to LL Cool J. ❤️)
But... The memes could be applied generically.


I was inspired by the Pinterest bible. Where inspirational slogans like "Be Balaam's ass, not an ass" are superimposed over a beautiful sunset.

Insert slogan here! Freebie!


Let's be original. "Inspirational" can be a dirty word now. Let's try joyful, silly, original. It's ok to be anxious, comes with the territory. Fight for your right to party. It's not what makes "others" comfortable, but gets your fight going. Fear is natural. But gut keeps us alive and keeps us working for our health, safety, and freedom. Let's break those records and fight against our fears. Let's be original. Let's not worry that we might not be inspiring. It's we, ourselves, that we need to inspire.

The Care and Feeding... Part II: the Unscientific Poll

In an informal poll of people with epilepsy, I can probably guess that an over-whelming proportion of answers to "What is your biggest trigger" will be "Stress".

In life... :

I'm actually curious to see if my theory is correct. (This is not at all scientific, although I have watched people with different disabilities, and without, for some time. It becomes second nature.  It might even be a tautology of sorts... because what causes a weapon to fire? One presses down ON the trigger. What causes one to crook their finger and fire the weapon?)

It also seems to become second nature to wonder what would happen if the unforseen event hadn't occurred. I'm afraid to say, that 12, nearly 13 years of this struggle, and I'm a bit too used to it. I can't imagine. What I've lost, has often been for the better. What wasn't, taught me a lesson that I needed, made me stronger, built... eugh... character.

How would my life be different without epilepsy?
Well, I'd never know that I could break concrete with my head. My parents joked that it'd be possible, I don't think they knew that one day, I'd test their theory. I wouldn't have seen those weird facial expressions people make when they're trying to hide their disdain. I probably would have a completely different reason to go after Doofus for taking or attempting to take away freedom. When invited to a concert, I wouldn't ask first, "Do y'all use a lot of strobes"? I wouldn't wear my sunglasses at night, which is a shame. I look FABULOUS in my sunglasses. I'm too used to it, I think. But I wouldn't have had people taken from me that I care about. I wouldn't have met more. I would have found strength elsewhere. 

What would you change? Would you? Has something negative led to a positive? I can tell you this: I am a stubborn snot monkey, who has been blessed with wonderful people who love me because I'm me, and know that I'm wonderful even if I'm not quite myself. I just wish I wouldn't have had to test it like this! 

What is your biggest trigger for seizure events?

Emotional upsets

Stress

Fear

All of the above/ other

Unknown

Fatigue

Missed Medication

Nutritional imbalances

Other

Please Specify:

Poll Maker

Epilepsy Awareness Day, 2015

There's a reference in there, regarding rather blessed sheep and knights, that doesn't make a lick of sense without a video. Meet my favorite- or unfavorite, geographically challenged crusaders . I would probably worry for the poor guy who decided that he should bring a map. These are the correct coordinates:

Right. That's pretty straightforward. 

Except: they went further into Hungary, as opposed to continuing the straightforward diagonal line south east. 

Following a goat, who had been blessed by the Holy Spirit (and proved to be a dish fit for a deity.

Then further lack of geographical skills meant that a Divine Goose was served up. If chicken is alá king, then this was- using the Mediaeval Latin of the time:

Perhaps- divino numine autem? 

I'm not being too picky. Emico was a bully who got his comeuppance and made a goose of himself. Maybe those animals were blessed after all, because he never made it to Jerusalem to bully more Jewish people, instead, going back home in high dudgeon.

I use this when people get lost: "Did you see ghostly Knights, a goose, and a goat out there?" 

Anyway, thanks for the help and love. My goose and goat are better map readers!

Lovis Tacitus

Thoughts on Vagueness and Comorbidity

http://youtu.be/_71kacbaXVo

Frustration with announcements that proclaim: "We know that we know NOTHING. 

The Purple Pumpkin Project

The Purple Pumpkin Project: 

With Halloween so near, let’s start “The Purple Pumpkin Project” to raise Epilepsy Awareness! How will you answer “Why are your pumpkins Purple?"
Description
All I am asking is to please color one of your Halloween Pumpkins Purple! Maybe have some "Seizure smart" info on hand and share your story with anyone that will listen!
Share your Purple Pumpkin Pictures, be creative!

Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

Almost 500 new cases of epilepsy are diagnosed every day in the United States. That means every 4 minutes someone is hearing "It's Epilepsy."

So... this Halloween, I will be working on some form of this, although we do not get trick or treaters here... perhaps purple pumpkin cupcakes or something.

One of the major sadnesses with epilepsy is that most of the treatments are medical--- that is, using medications that can be dangerous and cause many side effects. There are many issues that can come from seizures themselves, such as confusion, anxiety, fear, trouble answering questions, death... and many preventive measures are still too expensive for many patients and their families to afford. Along with that, there are still many attitudes that may keep patients from getting help, and this is why awareness is so important. So that families do not have attitudes and fears, and so that patients can get help. So far, epilepsy tends to be a diagnosis given as "You have seizures, why?" Some patients never find out why, and even doctors may not be adequately aware.

For more information, the Purple Pumpkin Project's Facebook Page is:

The Purple Pumpkin Project

 Additional links can be found at the American Epilepsy Society

and the Epilepsy Foundation of America and its regional chapters

In the UK, please contact, Epilepsy Action UK

In Canada, help can be found at Epilepsy Canada

Courtesy of eszter, Flickriver Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Generic License.

The Black Stork

Sometimes, in an effort to learn, I play a sort of ping pong, going between articles on various sites, looking in Google Books, and heading into archives held by SUNY, among others. Of late, I keep finding myself interested in eugenics- the same way I'm interested in learning about serial killers--- how do people tick when their minds are blackened by ignorance, ill intent, or a love only for themselves?

First I got my hands on Eugenics and Sex Harmony-Must Read of 1938! and found myself digging more, particularly after a question asked by my brother: "Now reading that, tell me, do eugenics experiments STILL go on?"
Then, amusing myself for a bit with vintage ads---both funny, sweet, and absolutely horrifying (radium enemas, anyone?) I came across for an ad for the 1917 movie, The Black Stork, starring Dr. Harry Haiselden as himself.
Here's the interesting bit. Haiseldon was in hot water for allowing disabled newborns to die, judging them unfit to live, and criticized doctors who wanted to help them. This isn't the end.

I quote:  "In the film, Haiselden actually plays himself, a wise doctor who attends the birth of a child born with congenital syphilis -- incurable at the time and a major cause of congenital disabilities. Two other doctors interfere, out of personal pride and misplaced benevolence, and try to convince the woman to save the child's life. The woman is forced to choose.
"She dreams a tormented dream of her child's probable future: He grows up physically, mentally, and morally deformed. He becomes a criminal, and fathers a brood of disabled children. He isn't allowed to enlist in the Army ("Uncle Sam won't take anybody who's not perfect"). Aware that he is entirely different from others, despised and angry, he returns to kill the doctors who performed the operation that saved his life."After this vision the woman decides to accept the doctor's advice and lets the infant die."End quote.

News articles of the time are not nearly as infatuated with him as the films' distributors, or one of the  supporters, the one and only Clarence Darrow (They mentioned Helen Keller as support---yes, THE Helen Keller, but did not supply a quote.) 

A rather alarming quote smacks of something my former mother in law liked to say:
(NOT from Darrow.)
 "It is the will of God that this baby be born a defective, and without the meddling of surgery, it is the will of God that the child die. "

Idiot. Imbecile. Defective. Parasite.
I'll repeat that... PARASITE.
"Put them down like you would any sick animal"- wait, sorry, that is said somewhat, but that's a direct quote I've gotten. I can't let myself put too much hectic color into this.

Here is a list of stills, all terrifying, from the Black Stork, and I am amazed people could watch this without vomiting.
The Black Stork, Movie Stills

Ad for the 1917 "eugenic photoplay", the Black Stork

Just know: Many so-called "parasites" actually try to make the world a better place. And look around you-- you may actually know someone who fights daily. 

The last scene of The Black Stork, seeing the baby letting go and  its' soul jumping into Jesus's arms: a nice touch. Almost comforting. Except: in the still, it looks more malevolent. All life is precious, and we all have something. Jesus said "Suffer the little children"- don't hold them back- not "If there's something wrong, kill it." 

PDF File: News Report on Meter Infant, from 1917

Bollinger Baby, Ouster from Medical Society? From 1915

Haiselden, Obituary and Legacy, 1919

Edit: 7:28PM 9/9/2011:
Numerous opposing comments were edited and used out of context by Black Stork supporters. Helen Keller was not a supporter, her quote would have not gone unused. Rather a dissenter mentioned Ms. Keller and songwriter, Fanny Crosby--- "If we allow this, we would have lost people like Helen Keller and gospel songwriter, Fanny Crosby". Like all propaganda, comments that disagreed could easily be edited to show support.