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.

Attitudes and Tips: the Short Version

There's  strange attitude that comes along with illnesses:
1) Be afraid! RUNAWAY! Everything is scary. Ack!
2) Be a little angel... Seriously. Think of Delores Umbridge from Harry Potter. Not the evil thing- that sickeningly sweet attitude. Ack. It makes my teeth hurt.
Coincidentally, the Latin words for pain or grief is dolôr or dolour. 
Ick. I'm not your angel, sweetie. I misbehave, I get downright cranky. I can do a marvelous impression of a rabid tiger with an ear infection.
3) You don't get to be impolite. Please, thank you's. It's ok - there are off days. Don't let people treat you like crap for them.
This is where it's fine to say, "dude. You're behaving like a dick."
 And finally:
4)Look at how far we've come.

This is a favorite (and perhaps mildly disgusting) article on the blood of gladiators being used as a treatment for epilepsy.
I do believe that this falls under the category of "sympathetic magic":
I did like the idea of sleeping with a strong man. That I occasionally see a Roman breast plate and uh, swoon, is not relevant here.

Rouge Classicism- Roman vampires!!

Speaking of "we've come a long way, baby"-

Remedies for epilepsy have also included:

• Eating the heart of a black donkey outside under a full moon. No cooking method specified; I'm going to assume that it's in the style of Kevin Costner in Dances With Wolves after the deer hunt. 
• Gladiator blood.
• Sleeping with a strong man. None of these are as interesting as Pliny the Elder's recipes for incontinence. 

• People are finally getting that forcing open a mouth that's clenched tightly and forcing objects into the mouth to avoid swallowing the tongue- seriously, try it. It's impossible- is a terrible idea. 

What I'm saying is:  we've come far. 

While the epilepsy research gets less than a penny per hour, new tools are appearing. New attitudes. With them, why not change what we expect from patients? No more running away from everything. 

The holidays are coming. 

Strobey Halloween parties are over. But blinky lights are OUT there. Be aware, be safe, and keep sunglasses ready. Photo sensitivity doesn't affect everyone. Nor does it bother any two people the same way. 

But holiday stress is a danger. 

I don't like using these words anymore- (self care) they've been hijacked by a really... Odd crowd. 

But take care of yourself,  and sit if you can, take up exercises you can do indoors. Exercise can be fantastic. For both preventing illness, and recovery from illness. So can sitting and resting when you need it. And nutrition. Make sure you eat properly. 

Happy holidays! 

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.
          

 

Can Music Cure What Ails Ya?

... It's worth a shot.

Section I:Get up, get out. 
 IA:The Ramones: Blitzkrieg Bop 
  Insert your own syntax here = )
Hey, ho! Let's go! Hey! Ho! Let's go! = )
 IB: The Gorrillaz: Feel Good, Inc. It gets your fingers snapping and lets you prep for a lousy day.
IC:Barleyjuice: Pour That Whiskey
In the drinkin' song tradition, makes you move, gets you smiling.
ID: Salt 'n' Pepper: Push It
Oh, yeah... = )   


Section II: Moves Your Butt:
 II A:LL Cool J: Mama Said, 'Knock You Out'. Gets your fighting spirit moving. 
II B: The Young Dubliners: Tell Me Ma: "She is courting 1, 2, 3..." tap those tootsies. Another classic drinkin' song.  
II C: Toni Basil, Mickey.
It takes you by the heart and it takes you by the hand. 
II D: Tony Bennett and Lady Ga Ga: "Lady Is a Tramp" 
The classics are classics for a reason. 

Section III: The Covers
IIIA: Weird Al- "Ricky" It's adorable and works fantastically with the original
IIIB: The History Teachers.  Almost everything. (There's some that just don't work for me... it's at 2 out of about 100. So they have a 98% success rate with me.)
Their take on Catherine the Great is based on Poker Face and makes you move.  
 I also adore their take on Beowulf, based on 99 Luftballoons by Nena and contains actual vintage Scandinavian texts.  (It also soothes the gaping wound left behind by the season finale of Vikings on the History Channel.)
 

What's the Dealio?

Late research has shown that music can help lessen the severity of seizures. Woot! Is it a particular type? Like, should I make an entire list of classical pieces (Pieces, mind, not songs, because heaven forfend that one should call music by such plebeian terms.) Well, pick your poison. Which puts you into a fighty mood and gets you moving? Which calms you? We have: Exhibit A: A classic "PIECE" as brought to you by PBS, your fourth grade music teacher, Camille Saint-Säens, and Disney's Fantasia:
 Exhibit B: Autobots, rock out! Classic metal. There's a theme here.

 For me, it's both. (My musical flavors are quite a mixture!)
 And exercise can help with episodes. Please try to ensure hydration and at least 3 good meals. Protein and fats do my body good. Lots of protein. Be careful of carbs, but you'll need to ensure all is balanced. I try to get 43 grams of protein daily. I also tend to survive on hummus mixed into a lot of foods, not just with my beloved cucumbers. Start slow. More on this as it develops. What else helps me? I keep a set of these: the sound is fantastic and the ear thingies are adjustable. Only $15 and well worth every penny. Note on link: I got mine on sale at Office Max.

Skull Candy Ink'd 2 Earbuds 

If traveling, eat well, drink up. Don't be afraid to bother the airline and ask about policies. Reserve a wheel chair just in case, even if you never use it. Be cautious, be gentle with yourself, but it needn't be more of a chore to travel for you than it is for anyone else. Half the fun is getting there, they say (God, I hope not!) Ask about policies, what emergency medications are available, about training. Fill out a card for the TSA, wear medical alert jewelry. I have a heart charm bracelet and a wallet card. They will likely look for, and let you keep on a medical alert bracelet, over a necklace.

Now, dating? That's another tale, but you shouldn't have to be different from most. Yup, you'll be carting around serious meds, and no grapefruit breakfasts for you! (No Earl Grey tea, either, which kind of sucked.) Some people won't get it. Some will. Keep going. My thanks to those who've seen me go down and still are there for me. And who cheer me on... I've got a few more hurdles to go over. 

Holy Toxic Green Sewer Sludge, Batman!

I get scared when people congratulate me or say I did well. That if you show some people, they're going to ask who did it FOR me. I did really well on this thing for class... A stupid little thing that apparently, almost no one puts effort into. I'm embarrassed... It wasn't that much work. So I threw it away. When people ask my opinion or for help for things and call me a nice young lady, it's scary. "Please don't look at me. I'm not here." Like, father buying flowers for his daughter... Picks me out PROBABLY because I was the only person NEAR the bloody flowers and saw that I was interested and comparing things. I was also surprised to find that 1) Mums aren't always a ghastly dark brown/ orange color. They have light colored ones. My family seems fond of dark colors and I find them really overwhelming. I liked the white, pink, and purple ones a lot. The toxic sludge green ones, though... I was surprised to see how many decor ideas involved them; they look like boogers on a stick. (The other name of my imaginary heavy metal band, if Demonic Splurge is taken.) 2)That being asked to help, offering help, and even suggesting: "does your daughter like all sorts of flowers? There's really cool cacti outside that doesn't cost very much" is bad, and somehow I sinned. Is "there's cacti outside" some sort of sexual slang I don't know about? All I did was try to help some poor dude who knows nothing about girly things buy a stupid present for his daughter (I was the only person there, until my mother showed up from somewhere else in the store. I am never letting her make me go shopping after our weekly dinner out EVER AGAIN. Dinner, appointment, home. She will never "help" me again.) I didn't know that I was being bad and proud. I thought I was helping. Then I had to explain what "cacti" is to my mother (I know she's smarter than that! That horrible creepy woman who appeared one day like a Mexican night induced fart in the night and refuses to dissipate, really gets into every crevice of her mind and she won't show the person that actually tries and thinks!) and wonder what she THOUGHT I meant. I had to actually draw her a damn diagram! She is insisting that I never say that I want to speak for myself again. I intend to keep filling her head, because now, it's personal.

Neurons and Fortissimo, and Adagio... Oh, My!

Music and neurology:
Do they go together like a horse and carriage?

I was fascinated, some time last year, by the image of a man undergoing brain surgery while playing the banjo (it sounds like a House plot point... in fact, I think they did something similar with a piano keyboard and a "savant"- someone who might not be able to be trusted to tie their own shoes or to go across the street, but can play music that would make Calliope, the muse, cry in joy.)
This man is not a savant, but his music is beautiful. Last night, Youtube threw me a recommendation that made my ears perk up: (It's opera, which is on the other end of the scale, musically, but my rather eccentric music lists tend to throw folk, opera and metal at me as a matter of course.) Stephen Fry, and his cohost on QI, which I recommend for everyone, meet for opera, and to discuss music and the nervous system with a group of varying neurologists. Davies is known to PLAY the part of the childlike, charming idiot (A part also played to perfection by Fry's 30+ year colleague, Hugh Laurie prior to his American debut. It's what makes House a bit... disturbing and weird for me.) This is a definite front, despite Davies looking a lot like a sweet, curly puppy. His reaction to opera is innocent, wide eyed, and you can definitely see his reactions. What does music do to us? What does music do FOR us? I think everyone's experience is going to be different... this is really obvious, but my spine might tingle hearing "Danse Macabre", while someone else might think, "Yeah, yeah, dancing skeletons, yawn, we had to watch this in 4th grade." (I saw one version with dancers in sheer browns and greens... very beautiful. You have the motif where it's very soft and sweet, and Death's violin isn't playing a creepy dance, but accompaniment to love.)Your spine might find Metallica partnering with the San Francisco Symphony Orchestra to be tingle inducing. (It IS interesting, I'll admit, but it was in the sell out stage. ) What makes you move, what makes you close your eyes in joy? Does it heal your mind and body?

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. :)

Freedom and Conflicted Minds

I've always hated the phrase, "guilty pleasure". If you feel guilty, it's not all that pleasurable, is it? These are my favorite "Get off your butt and walk it off" songs for those times when I'm feeling far more cranky and cantankerous than I'd like. I'm not really a lady who snaps, "Get off my lawn!" and when I have done, it's caused more hilarity than I was happy with! I have always loved history. It's important, especially since we tend to paint over it and those whose memory should be damned,acquire a gloss that they don't deserve, while others, like Richard III, known in his own time, as a fair man who actually tried to make the law fairer, and whose courtship of his wife sounds like it should be the next great historical soap opera on the BBC- has been changed into a monster. So, anyway, imagine my delight when I realized that I could dance to it! And this pastiche of Hollaback Girl is rather catchy. While it's a lot of fun, it brings me to this- something's been bugging me for a few days, and I feel terrible for ending on a dark note. In this time of ours, where "If you are not X you are Y", "If you don't support this, you are that", and middle of the road gets you run right over, look back to the 80's, a time of promises, lies, recessions, assassination attempts, neon colors, big shoulders, and big hair. And honor your life and your freedom. Don't take it. You are a solution. It's not a zero sum game. And if you use your love of freedom to beat down others, then you are practicing what you preach against. You can change that. You are not your politics, remember. Others' choices in their beliefs are none of your business. Yours are none of theirs. But, let's end on a light note-eesh. That crap- not the rainbow flags v. confederate flags, not the Supreme Court decision- it's that... now, our government can firmly control even more peoples' private lives, if you must have my opinion- but while that is terrible, love in all forms is not. Let there be more. But don't sit there and take it. Fight. The plague on our land is more people controlling others, in holding out false freedom, and snaring people into Matrix-like traps. Quit just sitting there like a frog on a log- ribbit as loudly as you can. Use your voice. It might be all you have.

More Eclectic than an Eclectic Eel

Workout playlists:

It's a quickie search.
And you do get a lot of ideas.

Some things are must haves... Iron Man, by Black Sabbath: heck yes. But dear God, as much as I like to work off the stress and get the stress off, Harlem Shake? Harlem Shake? Hey, shake your money maker like the rent is due tomorrow, to your heart's content. But there has got to be something better.

The lists, for the most part, say the same stuff.
A little Eye of the Tiger being the largest common denominator.

Some people like rap, others metal. (Some people drink Pepsi, some people drink Coke*...)  I'm... a bit more of an eclectic eel. 

1)Ebooks: The Book on Tape workout method.
There are a few pitfalls for me here.

A: The narrator intones solemnly, "For a perfect blini..."
B: It's John Cleese reading the Screwtape Letters, which is fantastic, breathtaking, thrilling... but I just can't quite use it as sweat it out material.

2)Pharell's Happy: I hadn't heard the song until May. This past May. Don't ask how I managed to avoid this and yet quickly, and to my horror, realize that there's an extended cut of "Let It Go".
Unfortunately, I was exposed to two hours of it. That's quite enough.
3)Sorry, T-Swift. You don't do much for me. Go do you, but I need to shake you off.

I'm busily compiling and editing. My list will be rather unique: there's education- (A song about the plague set to Gwen Stephani's Hollaback Girl with the strangely catchy, "Oooh, fleas on rats" refrain.) there's loud (Smells Like Teen Spirit? I can dig it). But my feet need to move, and somehow, I feel like I'm missing a lot.
My thanks to Cake, et.al, for getting me moving and letting me sweat it out.

So... I guess... I'm doing my thing... and definitely have a way to get myself focused. Progress, progress. But I need to move and I need music that isn't the same ol/ same 'ol.

Shake it, Shake it, Shake it!

Strange advice coming from me. ^^^ ⤴️ ^^^

The Bliss Out Bottle, the calming jar, the "I need to keep my hands busy and don't have a nice alliterative name" container.

Find a bottle or jar with a sturdy, leak proof top. You can use a Mason jar, but glass is not good for children.  A full jar will also be heavier.

1) Empty bottle.
2) Remove label and left over adhesive. If you don't have goo gone, olive oil spray works- as an adhesive getteroffer, great, as cooking aid... Yech! Wipe clean and dry.
3) Fill with 1/2 cup to 1 cup of hot water (PLEASE SUPERVISE CHILDREN!!!!)
4)Add glitter glue.
5)Add tubes of glitter. The trick is a free fall and suspension, provided by the glue.
6)Fill bottle to top with hot water.
7)Superglue cap.
8)Let cool.

Shake ’er up, baby!
Also: a Smart Water bottle makes a pretty cool looking free weight. For biceps curls and obliques exercises. $1 at local dollar store.

My Three Headed Bat Baby and I

I don't like feeling...
I don't like being told what to do. (Well, maybe not ENTIRELY true, but that's between me and the coffee pot, as it were.)  Of late, I've had... A little more than a week to myself. For the month. No one's fault... I enjoyed time with friends and family. May is a month when I need to be out and not thinking. (Not stinkin' thinkin', anyway.)

 I'd like the pleasure of hating my apartment. I don't like it, but I feel oddly affectionate towards it. Sort of like when I would see News of the World on the magazine racks... God, I miss that horrid paper- with the garish 40-point headline: "Camilla Parker-Bowles gives birth to three-headed bat baby!" 
And I'd look at the terrible image and smile to myself. Maybe it was the baby's six jug ears and rather surprised expression. "You're so ugly, you're cute!" A small part of me would croon.

Where was I going? Before I decided to wax poetic on a terrible "newspaper"?

But I took on too much, in the middle of a reaction to a new dose of an AED, around Mother's Day, and with situations I know more about than I should.

I can concentrate again. Somewhat.
Here and there I have a face palm moment and have to remind myself that I promised not to face palm until I saw stars.

The walking is helping. I have to use parking lots... Thankfully, there's quite a lot of interconnected lots around here.
The dancing helps. It's not pretty, but it's effective and I don't indulge what ifs. 
And that's what it's all about, Charlie Brown.

You, and Me, and a Mutant Named Toots

Epilepsy...
Strange moments we'll never remember in this life or the next. Strange moments we'll remember, and not fondly. Then there's those unexpected bursts of sunshine. Support from strange places. The dark, gallows humor that develops. The very silly humor that develops. At the beginning, I took the myriad doctors' appointments with seriousness. I'd never snark at a doctor- heavens no!
  Or remark, in a very serious, dramatic tone, to the EEG tech, "And now, the mummification procedure commences". I wouldn't have been ready in 2004. The snarker in 2015 who has a giggle when looking out the window during a very long wait, and spies a lit up sign at a nut factory next door, and lo and behold, it reads, "Nuts are our business."- I wouldn't have gotten it, then. I wasn't ready. I was serious. I was 21 and wanted to go outside and play and this weirdo with the fake Texas accent telling me that I couldn't marry or have children, and later, more... Well, for a little while, I took him seriously. I became depressed. I did things I shouldn't. But gained as well as I lost. I thought I was a bad, worthless, person who was hard to love. I had been injured, I hurt, and rather than helping, I was getting lectured and frightened out of my wits! And that doesn't help with episodes.

But ah, the good! The good outnumbers the bad. I learned to speak up for myself. I learned not to let others make my medical decisions for me. I learned to walk out when treated like I was less than crap. How dare I be sad, scared and frustrated? Be a good girl, we know best!

Realizing that I'm capable. That I do have a mouth on me and know how to use it. That I've survived and bumped up against things some would find too difficult. That opening my mouth and replying "Watch me!" When the dreaded words, "You can't" came along. (I might have been accidentally inspired by former PM of Canada, Pierre Trudeau. I'll be pirouetting behind a beloved figure of state next. Beth, be careful on the stairs, there's a knob at the end--- ooh!)

I felt like a mutant. As in, X-Men. 

I  asked how I thought I was a mutant,some time last year. I thought about it. It's not much.

• Can, in a pinch, substitute as a space heater
• It can hurt like Hades, but I have survived things people think are impossible. And I came out, snarking. 
• I present as a mystery to friends and family. I realize now, it must not be too terribly difficult to love me, attitude problem and all.

Hair and nails grow at a tremendous rate. Not this tremendous, mind.

There's a longer list.

I sometimes have trouble feeling like a human, let alone a lady, but I work at it.
Do I have any magical words of wisdom? Ohh... Toughie. Let me steal from a friend and try, "Don't be sad, be awesome." Yep. I think that works.

From Allegorically Speaking- Thanks! :)

I made my own mutant (just for fun), and, while I think less is more when it comes down to eye makeup, I'm not indifferent to this look. I call this mutant, Toots. Pronounced like a 1940s detective flick.
She's a lady, and she's fiery. She's--- ME! And I am awesome and never allowed to forget it.
One more word of wisdom: (or phrase) You're awesome. Yeah, you. Now, go forth and do that thing.

Tips and Tricks : Wherein Beth Loses Her Girly Girl Card

Safety & epilepsy. "Lil' Mizz Independence" was meant to be mean, but I thanked the person. I AM stubborn, I'm an absolutely awful patient. I like doing things MY way. This could just be what 32 years has taught me. But, basic tips. Even if you're a stubborn 'un, like me, it will do you good to remember: Check bathroom lighting. Showering in the dark is very bad. I almost drowned in the shower in the LIGHT. REPLACE early and often. The Chicago Lighting System™. I like the GE Reveal® bulbs- energy saving and with blue light instead of that weird yellow. Use a microwave if you feel too sick. Don't fall asleep making rice on the stove. If you feel something coming, eat, but use the evil microwave.

We are NOT saying, "HK is evil." HK is lovely. This just doesn't capture her at her best. Courtesy Sanrio®& Hello Kitty Hell

For more tips, please see: Living Independently with Epilepsy, Epilepsy Foundation, Pennsylvania

• Slip proof bath mats that don't easily fold up, and are easy to wash in the wash machine
• Extra light bulbs. Always. 
• Surround yourself with what calms you. If it works, work it. In my case, slowing down, and laying back to watch a projector turtle and/ or octopus- I call my pair Toby and Octavius, respectively, project tiny stars on the ceiling is a big help. I also have a giraffe named George that plays white noise or tiny, chirpy jungle animals for 25 minutes along with a gentle bongo drum. And I have a 32 year old stuffed skunk named Flower that gives me warm fuzzy memories. 
• Meditation. Even if you're not going full-yogi, taking a minute to breathe can help a lot. 
• But it's ok not to be apologetic if you're cut off. It's ok to be timid when testing the big, weird world, but you have to delve deep for your fire. Your reasons. And fight if you must. Don't be a mouse. Feel free to say that's not ok, and don't worry about breathing that away.

Remember that, among other things, stress is horrible for everyone. Don't worry about what other people say. You do what works for you. If it works, work it, baby. It's not what John, Ringo and Paul can do... Or George. It's what you're doing. You.

Daisy, Daisy...

Technology:
We like it, we love it, we loathe it.
I can, if I so choose, reach anyone in 2 seconds, instead of waiting for a week, maximum, for my beloved paper letter to arrive.

Since Stanley Kubrick's 2001: A Space Odyssey, and perhaps even before- see the original Stepford Wives- the terrors that can be unleashed by technology becoming too human, or taking over humanity, have steeped in our brains.

I have a bad habit of apologizing. Oh, I've tried to cover. "Suck it" works like a charm, provided you ease into it. On the first sibilant symbol of "Sorry" grin and say, "S...suck it."

It's not just to humans- I've offered apologies to: A cat who just stared at me like, "Lady, I make people clean up when I spit up a hair ball, and I make them feel like THEY coughed it up. I don't care.", the fridge, my sofa, the dog whom I thought was upset because I was upset- and he probably was, but he was remarkably forgiving about it.

So... back to technology.
It was a "normal" day. I did my thing, y'know. While getting dressed, I walked into the dresser. Because of course I did. It was remarkably stoic. I apologized anyway, because, one does, you know?
I had no idea that the last iOS update had tweaked a setting on my iPhone. Making it so that, when charging, Siri was active and lying in wait.
I had apologized to the dresser. This was dumb in and of itself. But I was not expecting to hear a plummy, disembodied voice say, "It's ok, Beth, we can still be friends." I suppose that the new neighbors above my head now probably know me as "The Screamer". I know them as what sounds like 15 sets of feet wearing clogs.

Well, I guess, if it helps, I have been frightened out of my wits. That should teach me.

Daisy, Daisy, give me your answer, do...

Viva La Brains!

Another walk on the lighter side.

It's well-known that I love brains and skulls.
That I'm a proponent of cherishing, honoring and saving them, and finding cures for what ails them.

Let's walk on the light side. Let's honor and cherish that pink, wrinkly little organ that allows us to move, eat and love. To contemplate the mysteries of the universe. To decide. :-)

Dearest Brain, I love you so much. You frustrate me, but only on occasion.
Love, Beth

Keep being weird. I <3 you, so. ~B.

So, if we are honoring our brains, how do we do it properly?
Increasing the amount per hour for epilepsy research would be lovely. At present, epilepsy research is not very cost effective, making roughly, -2¢/ hour. Epilepsy Day at Disney Land- November 5th! will donate $5 of each $90 ticket to the cause. That's not enough, surely? Can we do better? Don't we have to? Why is breast cancer- and their advertising leaves out the MEN who also are at risk for and acquire breast cancer- getting the bulk of the money? And for what? More greasy pink buckets at KFC? More pink toasters? What are we paying for, exactly?!

Start small, start simple, I guess. Rest when you need to. Eat well. Treat yourself. Don't just take it when people treat epilepsy like you just said that you didn't like their new haircut or wanted to blow something up. Speak up for yourself. Start with your body, your brain. Love your quirks. Love yourself. Practice what you preach. :-)

And... remember what Grandma always said and use a dang coaster. <3. These won't donate to research, but you'll make Grandma happy!
Thanks to Nerdist and Think Geek for the brain specimen coasters.

In Loving Honor of the Anniversary of the Founding of Rome

The great-great-great-to infinity granddaddy of the infamous "Royal We". In which, "We comb our hair," "We put on lipstick" "We proclaim..." You Caesar, me centurion, he nurse.. er... wait...

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

Up in the Stars...

For a dear friend:
May the cosmos resonate with the sound of Ozzie. It hurts to lose you and your kindness here on this earth... You, who hated anyone being mean to, or hurting, another living soul. You, who have been, too many times. And never took. At the risk of this turning into  "Mandy"...
You're out of pain now. You see your mom and your brother. No more worries, no more pain.

I keep thinking of the Little Prince for you... And it's appropriate in many ways. We could stand to face the world woth wide eyes, with hope, like children again. With simple generosity. You've taught me a lot, and I'll relish your company, and Ozzie Osborne, and think of you.
Goodnight, Jamie.
Rest awhile. Thank you, for love and your gentle nature. I'll grieve not to see you here, laughing and rocking out, like a boss.

'When you look up at the sky at night, since I'll be living on one of them, since I'll be laughing on one of them, for you it'll be as if all the stars are laughing. You'll have stars that can laugh!'

And he laughed again.

'And when you're consoled (everyone eventually is consoled), you'll be glad you've known me. You'll always be my friend. You'll feel like laughing with me. And you'll open your window sometimes just for the fun of it...And your friends will be amazed to see you laughing while you're looking up at the sky. Then you'll tell them, "Yes, it's the stars; they always make me laugh!" And they'll think you're crazy. It'll be a nasty trick I played on you...'

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!