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.

Mea Culpas and News Updates, or, State of the Beth Part II

Everyday, I try to learn a new task, perform a new craft, improve a recipe, learn something new. Even something as odd as the mating cycle of ferrets, or as one Craigslist posting would have it, "Cat-snakes."

But today, I learned about one particular hangover of traumatic brain injuries, hereafter called TBIs.

They can cause you to be rather labile.

                                                                      ***
 I am irritated, because I was handed a diagnosis, a death sentence (I've since decided to go with the conclusion that Dr. With A Terribly Offputting Name was terrifically wrong. And I celebrate this every moment, but especially every year!), medications that, across a wide scale from broad-spectrum to targeted, I ended up being allergic to. I was told that epilepsy meant I couldn't have a family. That no man would want me. When I was pregnant, I was told to abort, when I asked what I could do, because I didn't like the side effects of AEDs on a fetus. Dr. Offputting told me in no uncertain terms to abort. I refused. After reiterating his rather dark prognosis, and not giving me anything resembling proper medical care, I left shaken. Tonight, I learned about an interesting hangover to TBIs. Namely, inappropriate reactions. Tears or laughter (When not discussing TBIs, I tend to think snark is a wonderful way to handle things, and that there is no such thing as inappropriate laughter.) I was either not told about this, although telling me that I was bad, dirty, uncooperative, too emotional, and that any pain I was in was my brain and not my body, meaning that my kidney went undiagnosed for years... until, suddenly, it couldn't. I did everything to avoid this, went to doctors, support groups for conditions I didn't have. I became far more anxious. I lost everything because I didn't have proper resources. I became resentful and distrustful of doctors who hurt and insulted me, while I counted down the time until I'd finally just give up and quit.
I never did. I can't, I won't. But being told "Well, this is what happens after a TBI, and we are going to monitor more than your nutrient levels on AEDs" would have been fantastic.
                                                                      ***
I spend a lot of time teaching on living with epilepsy. I fight that anxiety and depression are common. That talking about it, that fighting... is what is necessary. How to deal with life stuff, dating, going out in public, dealing with the cops. I never knew about inappropriate laughter, tears or anger, except in the confines of Parkison's Disease! (This really should have alerted me. Parkison's affecting the brain. Derp.) And while I was either not told about or slept through a discussion on this particular symptom... (I'm sort of betting on the former more than the latter.) I do vaguely recall a few commercials, that like most, I ignored.
And...while watching to actually catch up, I felt an urge to take a pee break. How could I ignore and not figure out that "Wait... that's... " I've called myself overly emotional, the TBI distilling certain small things and making them REALLY apparent. Oh, God, I've mimicked every crying Virgin Mary in existence. Thank God, it was in saline, not blood. That's just messy. I have a lot to learn. I also am having an inappropriate reaction to a well-meaning ad... because it's over the top, and sad people/ loud people put me on edge.

                                                                           ***

Are you still here? Good news! I am 8 months free of tonic-clonic, aka grand mal seizures. I am two months free of smaller episodes, (I am estimating, but I think I can say 8 days shy of the calendar date is an allowable estimation.)
Last month, the 7 and 1 month point marked a 4 year point - if not the 1 year point I'm reaching now. I have now gone longer without a seizure than I have for the past 4 years. I still need to learn to "find" words- I tend to know what I want to say, and end up not being able to speak, or not being able to spit out the word at the end of my tongue. I always had some problems with speech before my injury, the distillation process means that when nervous, I can't hide them as well. I turn into a malfunctioning robot far more often than I'd like.

But I am better, day by day. I will close before I somehow end up singing a 90's TV show theme song. I think, rather than recriminations, party time is what the doctor ordered. :-D
*Ask your doctor if party time is right for you!

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.  

News You Pray Is Just a Joke In Poor Taste

There are times when I read the news and think, "Please tell me this is a horrid joke," --

So a special-ed student goes to school officials with charges that a student has hurt, harassed and raped her. They don't believe her, make her write an apology letter, to her attacker and throw her out of school.
"It's all your fault, you failed to take precautions". WHAT?!
When she comes back to school, she is harassed more and yes, raped again. This time, there's proof. The now-in deep-hot water school officials? "We are very sorry"--- wait, what am I saying? They respond to her lawsuit with "This is frivolous."
Actual quoted text:
The girl failed and neglected to use reasonable means to protect her self, the response says. Any damages the girl may have sustained, “were as a result of the negligence, carelessness, or conduct of third parties over whom the District Defendants had neither control nor the right to control,” according to the school district response.

The district is asking that she pay their attorney's fees for the privilege of suing them for NOT PROTECTING A CHILD WITH SPECIAL NEEDS WHO HAD THE CAPABILITY TO PROTECT HERSELF TAKEN AWAY FROM HER. 


A special needs child with this in her file: the suit alleges that when school officials interviewed the girl in 2008-09, they failed to even look at her own school file, which included a psychological report “which clearly indicated that [the girl] was conflict adverse, behaviorally passive and ‘would forego her own needs and wishes to satisfy the request of others around so she can be accepted.’”


This is a child who had a huge people-pleasing tendency---often in detriment to herself, and should have had people protecting her.

I keep wanting this to be some bizarre joke. What do they teach in health class? "Now, remember girls, douching in Lysol is the best way to remove odor and avoid being a pariah."? I'm too mad--- check this out:
Lawsuit filed Republic School District

Hey, kid, your school failed you big time. FIGHT!

From the Vatican to Tenessee

-Veronica's Veil is major relic in the Roman Catholic Church. It is supposedly a cloth used to wipe Jesus's face as he went toward his crucifixion.
-Astute readers will note: This is not canonical. Also, Veronica comes from the Latin for "True Icon" as in "This is the model of the Christian woman, she offers compassion

I love reading weird news and occasionally find tidbits examining vintage ads (At this moment, I found a "must read" book on eugenics from the 30s... and learned too much already, including that an octaroon is not a cookie. Said a friend, "No, Beth, that's a macaroon."

In my reading, via Chuck Shepherd at News of the Weird, I stumbled across this little stub:
Holy Relic found in closet (No sarcastic comment- this time.)

So an elderly man has a gift of a stolen painting that is 150 years old. It was stolen and the thief attempted to sell it to a church. He was arrested. Said the home's owner (A motor home at that) ""Haha, I've lived here for 17 years. It's been in there... or in my bedroom ever since."


That's...comforting?
Now, I can say, no sarcasm included: If it had been the Sacred Heart, I doubt he'd have been so blithe.