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Tuesday, May 5, 2015

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.




Friday, May 1, 2015

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.

Monday, April 27, 2015

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...

Thursday, April 23, 2015

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.

Wednesday, April 22, 2015

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...

Sunday, April 12, 2015

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

Saturday, April 11, 2015

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...'