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.

My, What a Pretty Pickle This Is

The list of pickle puns goes on... :-) The pickle and the pepper went out to sea in a beautiful, pea-green Mason jar...

Seizures can and will act like a case of cystic acne on prom night, which... notes for Alanis Morrisette, is a lot of things:
1) A terrible coincidence
2)Positively annoying
3)Frustrating, when you know bloody well that you've got this thing... and can't do it right now, and kind of feel... imprisoned again.
But not bloody irony. 

I'm well versed on my triggers.

Are there signs and auras ahead of time? 
Once again, this is different for everyone, and not a perfect science, but some signs have shown up  enough times to be a good clue that something is rotten in the State of the Beth. 

1)Walking and tripping over my own two feet. Seriously, it's not all that comfortable, either.
2)My "Bethy, Bethy, Quite Contrary" mode. I'm usually pretty easy-going, sometimes to a fault, and have a bad habit of responding, "Ohhhh... suuure!" to things like dealing with the unpleasant, etc. Here, I become unpleasant, even for myself, which leads, quite wonderfully, to exchanges like, 
"Beth, aren't you going to buy hummus and cucumbers this week?"
"I hate Wegmans, I wanna go home, and I hate cucumbers." Imagine this in a vaguely tipsy tone. 
So a pretty good way to tell if I'm just being a giant klutz, (if you have a wall, I've probably bumped into it, sleepily apologized to it, and wished it a good morning. See also trees... I have a tendency to be a tree hugger, partially because I'm trying to avoid walking into it unaware.) is "Do you like cucumbers?" 
It's quite a lovely, pickle-y, cucumbery conundrum. 
3)Sleepier and a lot less cooperative. I never like to say the word, "can't"- my father treated it worse than swearing. I might find myself sounding like a kid who doesn't want to do their multiplication tables... irritating myself in the process.
  (I was taught to be a nice young lady--- sometimes, avoiding that can be good for me! But heavens, I was taught to be stubborn, too!)
4)Confusion of the sort that leads to tears and apologies.
5)I kind of end up wondering, "Why would these people want to be around Fitsy* McGee? 
*Note: "Fit" and associated terms are on a list of unacceptable terms. Then again, so is "epileptic" in the "Person First" nomenclature. This is hard to find in the spur of the moment. The biggest issue is not a love for gallows humor, it's that every day, strange new language seeps in, and the appropriate language ends up being hidden under "You can't say thats" and "Why would you discuss" and "Is there really so much to laugh at? I mean, do you take this seriously, at all?'s".
The answers are:
1)I have to
2)Silence kills
3)Yes. Not if I can help it.  
If I'm going to run in the free air, I'm going to have to leave a few things behind- shame, what people expect me to be, to make them comfortable. Also, this apologizing thing. Sorry, not sorry.
          

 

Party on, Garth!

I've always had a hard time explaining things, for whatever reason. Namely, the fear that I could have a more useful, satisfying discussion about manifest destiny and the philosophy of life itself, and the secrets of the universe, with a brick wall. This is, of course, a positively dreadful way to enter a conversation: "This is going to suck." So I either get really blunt and then it's all sorts of ugly and awkward, or I start accidentally adding so many layers that after a while, I'm frustrated and feel like screaming!, and absolutely nothing gets done. Let's see if I can explain epilepsy in a way that I would use talking to friends. There is... And 30 seconds after I wondered about what in hades this ad was for, it came to me...selling Mini Coopers... an ad where two guys are crossing the desert. They're hot, sticky, sunburned, dying of thirst, and come across loud music and a festive atmosphere, and P Diddy himself. One guy wants to stay and party, the other is quite sure it's a cruel trick, even after it becomes apparent that P Diddy and his friends apparently decided that the Sahara was the perfect place for a bash. That's... Kind of what it's like on a bad day. You're crawling in the blazing hot sand, and have passed about five beautiful angels, all holding a golden thimble of the freshest, purest water, from the most beautiful artisanal well on earth. You go to them, tug on the hems of their tunics, to no avail. Some don't want to be touched, lest you spoil them. Some disappear completely, leaving mocking laughter. Some transform into strange demonic hell beasts and tell you that you're not worth anything. But you keep on. And what to your wondering, tear-swollen, sandy eyes doth appear? A group of Mini convertibles, and music, and all the water and food you could ever want... Take, eat, drink, you will be sated, a soft pillow will cradle your head. And P Diddy is there. And he's beckoning. But there's these two guys ahead of you, looking in on these same delights, and fighting over whether it's a mirage, a mean trick. somedays, you manage to crawl as fast as your bruised and abraded elbows will let you, right past them. And it is paradise, even though you're tired, so tired. Everyone is kind and lets you rest until you can party on, Garth*! On bad days, the very bad ones, the two idiots in front of you turn on you and attack you for daring to believe. How dare you? You're going to die just the same, you idiot! They were right about you! You're wrong and unnatural, and even if it was real, "they'd" know, and no one would want you around. That's... That's the best explanation I can come up with. I'm aware that it's probably as clear as mud in a champagne flute. *For younger readers, 1) Hi, kids! Do your chores. 2)Wayne's World is not in the same category as Citizen Kane, or Gone With the Wind. It's something special, and it should be watched and enjoyed by everyone, at least once. :)

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!

Of Codes,Corgettes, Rhutebaga, and Hodor: Safe Words

During seizures of either variety, the focal partial seizures in which, my goodness, communication might be possible, varying from "I'm thirsty" to "Get away from me!" and what appears to be a homage to the Exorcist... I can get really sweary and weird indeed!- but will be more unclear than usual and apologizing like the dickens...
and tonic- clonics, which I am thrilled to say I neither miss fondly or unfondly, but have been a stranger to for quite a while. Knock on wood!

I made a deal to wear a Medic-Alert bracelet and maintain updated information to maintain freedom. Especially important as I'd like New York to see the back of me very soon.

I also decided, after some time in which episodes had me trying to communicate, but unable to, that I needed safe words.
Not that kind of safe word. That's a mystery to all but I, the pertinent party, and maybe a coffee pot, which isn't talking.

Corgette: The British word, from the French, for the green vegetable known to us by the Italian, zucchini. The image in my head now, tired, a little weaker, and having to go slow- but communing, in Franciscan terms, with Brother Snowflake and Sister Slush, is of a gift to ones' prom date, a shiny, waxy green vegetable tied demurely to a wrist or pinned onto cleavage. Corgette as code, means:
"Help! Ambulance! No police."

Rhutebaga:
An intrinsically funny word to me, and one I wouldn't normally use outside of this context. "I am sick, but stable. I need help with food/ fill in need here." This one is difficult because pride tends to get in my way and I hope to change that. 

Hodor. Hodor, Hodor, Hodor. Hodor. Hodor!!! Ahem. From Game of Thrones, a large, mostly mute man who can utter only his own name to express a variety of emotions.
"Hodor" would be texted, if I am unable to speak and need help (meaning a phone call would be silly and I need someone to check me and perhaps talk to medical personnel when I cannot. Or reassure family.)
 The rest would be done in person; iPhones have an emergency button on the number pad for the lock code, and a medical ID app, which will be linked to if one presses "Emergency".
"I am unable to speak. I am sick and need help." 

*I might be over complicating, so I am considering running tests of the system. With disclaimer:
"This is a test of the Corgette, Rhutebaga and Hodor System. This is only a test. If this were an actual emergency..." With a link to that nice loud annoying noise people adore on a given Friday sitting around watching whatever they're watching.

Epilepsy Unveiled and Song of the Magdalene, Your Year End Recommendations

A very special post for Epilepsy Unveiled.


Epilepsy Unveiled is a site dedicated to seizures, care taking, psychosis, and brain injuries,  -and surgery- among other things. 

A brand new book as come out, with the eponymous title of Epilepsy Unveiled. 
The last chapter is a letter written by the hero, one Charley. Charley discusses, among other things, what it's like to have an aura and a seizure. Far more poetic than many.

 For example, I tend to describe them in profanity, not excluding French profanity. I like a word such as "Merde!" as it can be understood in any language! 

I recommend Epilepsy Unveiled to patients and caregivers.

The site has other helpful topics, such as choosing surgery, on making goals, postictal psychosis- a distressing time, as you've been sick, and already had to stand outside yourself, and now, for example, if someone pops bubble gum, you're inclined to slug them.
(DO NOT SLUG PEOPLE.)

Please do check out Epilepsy Unveiled (Book, Amazon link.)

Now, if you're a fan of historical fiction, rather than partial memoir, I also recommend Song of the Magdalene.

Be blessed and joyful... here's to 2015! Na zadrowie! 

Scarf by: Dezeen Dot Com, Alchemy silk scarf by Cristian Zununaga

Second-Hand Anxieties

If you have an illness of any kind, making yourself an island is a bad thing to do. There's a hierarchy of needs consisting of companionship, food, and more physical appetites.

I consider myself a piss-poor patient. I get grumbly and irritatable if I'm not able to do things for myself. Even when healthy, those who seemingly doubt that I can boil water for pasta, remember to make a cup of tea (and I have a particular ritual for that: Quality tea, a tea kettle, and long steeping times.), or indulge in solo activities. Life is a risk. You can die in a bathtub, (Having had an episode in one, I realize that this is no hollow, trite fear.), or you can die doing something worthwhile. Or, Live. 

If you care for an independently-minded person with any one of a number of chronic illnesses, some of which can lead to increased anxiety or depression, then your job is this:
1)Teach them NOT to fear. That you can be trusted. That they can come to you.
2)Understand that sometimes, laughter is the only thing they have at that moment. Gallows humor exists because we are meant to fight for survival, to rail against death. Do not go gently into that good night. Rail, kick, scream. Laugh.
 3)It's one thing to care. When we love others, we might worry. But casting doubt on others, giving them lists longer than their arm span is wide, of everything that can go wrong, feeding them that heaping spoonful of fear, shoulds, and despair, is a horrific thing to do.
4)If you care for someone who has not had an easy time of it, feeding their own fears, before they can face them down, will cause them to pull away. And for very good reason. People need not be reminded about:
A:What a former spouse may or may not like
B:A list of things they dealt with, with said former spouse/ other partner/ fill-in-blank-here.
C:Piling on new anxieties for fun. This may or may not cause nightmares where innocent people are transformed into monsters.
5)For God's sake: I beg of you, don't answer for people. Don't talk every way but to.

Maybe... maybe you should simply remind them, indulge, and honor them for this: "Just be you." Remind them of the things that make them wonderful. Be compassionate about episodes, about nightmares, about injuries.

Do NOT, I repeat, NOT allow the person to hear you ask "Why did you have to do that at the store? You ruined my day!" Feeding guilt and fear does nothing to help anyone. The first step is to try to unlearn that fear and help them so they can be confident. A normal conversation should not  sound like a sarcastic reiteration of "Stand By Me".
What if you're out hiking alone and have a seizure?
(What if the mountains should crumble into the sea?) 
Have the person make and show you plans, medical information for wallets, ID tags if necessary. Not often will law enforcement pay proper attention to tags, to my discomfort, but you need to be there if your diabetic needs sugar and is hassled for being drunk. The same might go for your epileptic, wandering confused, emotional, and panicked by not being able to control themselves. If they cannot speak, YOU must be calm. YOU must learn to speak for them in this instance. (The only time I'd approve of such behavior. I know how I like my cocoa/coffee/tea. I know what I'm doing. But if I am unable to function and need medical care, and have no voice, then you must use my pre-planned words.) This means planning. You all need to sit down and discuss "If X happens, then you need to do Y". All should be written down, signed and agreed to.

Remember that a smile, a nice dinner, love... can make a big difference. Sometimes, you have to say, "I understand that you weren't quite with it. I'm not mad."
I think caregivers as well as patients can benefit from seeing a counselor. Some caregivers neglect themselves. This will make frustration even more likely, and far worse than it should be. Frustration is part and parcel of the experience, but it can be too much and cause a person to react differently, to show anger they previously had no idea they felt. Toxic behavior is just that. It poisons everyone.

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!

Lovis Tacitus

Mama's Got a Brand New Bag

New opportunities have arisen. Now adding to my teaching gig, I've added features writer, designer, and brand manager at Epiphanies Magazine to my bag. Because of a death in the family, and because I don't want to make myself sick and screw up four months without a tonic clonic seizure- or make my smaller staring spells, which I'm trying to correct, worse, I'm attempting to take it easy, ask for help when I need it. I've managed to learn HTML coding, studied up on RSS on the train to visit friends, (I'm thinking I'm meant to write a travalogue, but I'm still recouping... travel is never never a good time to learn about a death, sudden or not.) and did off-season Latin homework for my courses, in which I cannot converse vebally, unless I'm asking a question, accidentally slipping into it, doing a translation, or catching bits of Spanish or Italian (I did manage to translate a short conversation from a British show that sounded more like, "How long can we keep this up?" "Well, with my liberal arts degree...") but hold a solid 96% in class work. I'm ensuring that I celebrate the good, too. And look forward to more of it.

As brand manager, I know getting the design as simple and memorable as possible is the best way. I had one particular design I liked, but it ended up being too much blank space, so I took the basics and simplified, after asking select people to take a look for me.

I also tried my hand at an app for Epiphanies' social media presence, and learned how to build the basic template for those. Thankfully, Como did the QR code, although that should be a cinch to learn.
Below: A QR code for the Epiphanies app, a lazy 2 hours in the making. Compared with learning Wordpress, HTML, attempting RSS, and some odd dreams from this endeavor, this was a lazy chunk of time!
I will be looking around and improving as time goes on, and am grateful for the responsibility.

On Triggers, On Remedies, and All That Jazz

The first answer for many people when asked, "What are your triggers?"- when it comes to epilepsy, that is, is stress. While a full blown- episode might not develop, a tendency to do a blank-stared wander about (if I'm getting lost, I mean to do so purposely!)
-might develop. It's always funny- in fact, hilarious- later!
I guess I've learned this: my humor is odd and is very healthy!

Still going strong... No tonic-clonics for 12 weeks now. The minis can go... preferably somewhere in the deep south with a rather hot and arid climate!- and the "I can't brain" moments where every action is done like an automaton... I can look dear friends in the eye, have no freaking clue who they are, but do something like wave or smile because part of me says, "This is expected, act normal and no one will notice." It's a lie!


But I got myself together... and will pray for no repeats of that particular move... in the meantime, time for quiet, for comfort foods, for happy music.

I also enjoyed a wonderful and glorious performance by Cecile McLorin Salvant at Albright-Knox Art Gallery, and was delighted, stunned, and taken aback. And stress melted away. I can over- think another day! (Or, work on NOT doing so!)

With jazz, with scatting and a free, open, lyrics and flourishes, I can sit back and let myself get caught up... and no one worries if I'm enraptured, transfixed, or swaying. :-)

Note: at Saturday's concert, the ultimate line in "If This Isn't Love..." was, "if this isn't love... I'll kiss your ass!"

Thank you, to a dear friend for taking me, her children not liking jazz (You poor loves!) and 2 sets of people having to pass tickets on! I'll take it as a Godsend.

As for ass KICKING, it's my turn. I'm beating this, and sorting out! To... a state where I'm not worried about, "Oh, gosh, something's going wrong..."
Time for joy!
Cecile McLorin- Salvant: If This Isn't Love...

Purple Day, or, Save the Brains!

You might see some purple banners unfurled, ribbons dusted off. Why? Isn't Epilepsy Awareness Month November? Yes.

Why am I once again playing with purple? 

-1) because I have a lot to celebrate! As of last Friday, I'm 42 days free of tonic-clonics. Because I have goals to reach and it's TIME to get better! 

-2)Because there's so much emphasis on saving the boobs, which ARE, fantastic, but for all the special edition hoodies,coffee pots, panties and Smith&Westons, there is still no mentions made of the males also affected by breast cancer. Do I think epilepsy awareness needs to follow with expensive coffee pots and stand mixers? No. While breast cancer is "sexy", with "Feel your boobs! , "Save the Boobies!"- epilepsy takes a back seat. A 2010 article on funding for research proves saving the Brain nets researchers less than minimum wage per day, most of it going towards medications, which don't work for 20% of the population. This is a huge deficit. 

-3)Because there's still stigma, there's STILL sweeping things under rugs, discomfort, and myths to dispel. And until the day comes where I can buy a limited edition epilepsy awareness dildo, or a hoodie at Sears that says, "Save the Braaaaaaaaiiiiiiins", I'm fighting for my brains and my boobies.

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

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