I blog gluten-free

Wednesday, October 29, 2014

People First-With Some Apologies to Emily Post and Mrs. Beaton

How do you introduce your friends?
"Oh, Janet, I'd like you to meet Jen. She is a kleptomaniac who also likes croquet and the music of Gilbert and Sullivan. Klepto-Jen, this is Janet, who once ran for the "Puppies to End World Hunger" campaign, has a rather bad habit of chewing garlic cloves whole, (Oh, have a breath mint, dearie.) and once sold herself to an electrician for $5 and a new lamp, but she does have a heart of gold and hasn't run over any old ladies in about three weeks. Well, you two should have a lot to talk about!"

Descriptive language is important and does paint a vivid picture. I can think of two children playing with a ball outside, or I can think of two sun-kissed children playing with a big, blue and white ball, in a sunny meadow.
Your friend Janet has famously foul breath. Your friend Jen needs to be frisked after a party. Some other details aren't really necessary.

How about the words we use to describe people? Jen and Janet seem more human and fleshed out. But what of Bevis, who likes to conduct music while listening to the radio, usually brandishing a large zucchini. One probably would not call Bevis "The Great Zucchini in concert!" One would probably say, "I'd like you to meet Bevis." Now, let's use "the Great Zucchini" one more time. "How is the champagne, Margaret? Oh, fabulous! Margaret, I have someone here that you'll be delighted to meet. Margaret, this is Gangrenic Bevis." (Bevis has gangrene, you see. He's a big hit at parties.)

Cocktail parties would be particularly awkward and frustrating if those with health conditions or rather interesting lifestyles were introduced and discussed rather than, or in a way that their actual fun quirks. (It's also really bad etiquette to (A)Ask someone what they think of a person, to inform them, "Oh. Really? Well, Frank doesn't seem to have a real personality, and always plays parts. Plus, he's really a liar. Haven't you noticed?" or (B) to do this while smiling in Frank's face and bathing him in empty flattery.)
So, let's say you have a friend with a medical condition.
"This is Josie. She has epilepsy."
"This is epileptic Josie. She seems to like that a lot more than 'Spazzy Josie.'."
Which of these is correct? Neither, really. One is not their medical condition. One might use certain adjectives when asking for certain accommodations, but condition-first language aids in dehumanizing ourselves. When this happens, we are left a shell of ourselves.

Here's a fantastic idea: "This is Abigail. Abigail, this is Josie. Abigail, why don't you tell Josie about your collection of pornographic post cards from the 19th century?"
Another no-no:
Person A:"Hello, Felix! How are you?"
Felix: "Hi...I..."
Person B: "Gail! Let me tell you what Robbie (Felix's older sibling) is doing! Oh, Henry too? Oh those guys." (By now, Felix is either standing stock still with a face changing between white, pink, red, and purple, or quietly going outside.) Tip: Sotto-voce insert an inappropriate comment. With luck, they'll have to recover from the shock. Don't be TOO filthy.
Gail: "Felix! How are you?"
Felix: "Gail! Hi! Well, I just started/ have been..."
Person B: inserts embarrassing details and rather well-disguised put downs.
Felix, my friend, there is no escape here. Smile and be polite. But try to say "Excuse me. But I'm Felix, I think." And you probably should have a wine. May I recommend a lovely Reisling called "Relax"?

Tuesday, October 14, 2014

The Holy Purple Pumpkin of Antioch

The yearly Purple Pumpkin Project is an effort to spread awareness about epilepsy. Epilepsy affects 1-in-200 adults, and can be caused by many factors. In this world, there's emphasis on breast cancer awareness, a worthy cause, but surrounded by charlatans and pushed to the exclusion of anything else, including dangerous mens' health issues such as prostate cancer.

This is a pink-washed world: Giant pink buckets of the Colonel's best, drill bits for fracking (Seriously, Susan G. Komen?!), scarves, hair supplies, coffee mugs and toasters. I'm holding out for a purple dildo that plays "Stand and Deliver" and says "Save the brains!" for no other reason than this:That still wouldn't be the worst or most inappropriate piece of awareness merchandise.

We really don't need a purple-wash, per se. What we need is this: a fun and fantastic way to show where our hearts are and can lead to discussions that can save lives. I've found that neurologists hold back necessary information and use scare tactics.

For news and information in fighting against epilepsy, please visit:
The Epilepsy Foundation.
For a list of more links or if you're outside of the US, please visit: Epilepsy Information Resources- I need to do some updating, and if you know of anything, please let me know!

The first step in fighting: You may already feel anxious, fearful or dehumanized by your illness and by medical professionals who NEED TO DO BETTER. Your doctors need education every bit as much as you do. You are not insane. You are fighting an illness that affects your brain. You have done NOTHING wrong. You are not alone. Keep going.
"First shalt thou take out the Holy Pin. Then shalt thou count to three, no more, no less. Three shall be the number thou shalt count, and the number of the counting shall be three. Four shalt thou not count, neither count thou two, excepting that thou then proceed to three. Five is right out. Once the number three, being the third number, be reached, then lobbest thou thy Holy Hand Grenade of Antioch towards thy foe, who, being naughty in My sight, shall snuff it"

Monday, October 6, 2014

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!

Tuesday, September 16, 2014

State of the Beth?

*Note: I have reached 7 months free of tonic clonics, one month free of the smaller episodes.
On the whole, I'm doing fantastically in that department. *Crossing fingers!)

We all like to think that we can do it all. I enjoy that feeling of accomplishment from not having to say "Help me!" and doing first, asking questions later.
(There are those who say it's easier to apologize than ask for permission, I'd say they're right...too right. I am working very hard to stop that tendency, actually. I'll see how it goes!)
I managed to teach myself a terrible lesson, going by the cues I got from those around me. Well-meaning, but ultimately, fearful- in that I let their voices become part of my internal narrative and shook with fear at nice people who said "Oh, let me help!" (With what? I've only cooked for myself and others about a thousand times!)
Don't take over unless I ask you to.
Teach me something I can do that is useful and keeps me out of trouble.

I learned that those who went nuts insisting that I do things by myself had a point- I'd feel very good.
Then they'd ask who helped me with the project I'd worked so hard on.
Or they'd insist on "helping" me with simple tasks I'm already good at... making tea, filling a coffee pot. Look, if you see me with a 5 gallon jug of water, feel free to help. Except on spectacularly shaky days, a 12 cup carafe is not going to be too much trouble.
I hate the lists- "Ask Josie if she can help you! What do you mean you don't want to borrow milk from Jenny?" and more.
I really detest doing something, being proud, and being asked who helped me.
Or actually asking for help and getting asked why I told the person I asked anything instead of struggling. I hate that far more.

But I have had to come to the conclusion that the last 11 years since my head met a sidewalk,  did leave a mark on me:
*My hand control varies. I am nearly out of coffee cups, have gone through about 1/3 of a set of 16 drinking glasses. My white shirts are not so white anymore... I might as well give them a coffee bath or tea-dyeing, or even a tie-dye! And the gross (144) bandages I bought? Gone.
*My AEDs messed up my eye sight so that close work requires both my reading glasses and my contacts.
*I'm ultra thirsty all the time... I also have to keep both saline and fluids in balance.
*I used to make small wooden toys... jelly bean/ gumball machines, a little jigsaw puzzle... without it being tough. I'm hoping to repair a gumball machine I made at 14- clean it up, make a new plug for the hole at top that the candy is poured into. It needs a wide cap with threading for a secure seal. Take care of the signs of being packed away for years. Maybe stain it a pretty, bright color.
*Sewing is something I can do, But I've struggled at cross stitch.

I sometimes do have to acknowledge what I can't do anymore, figure out what I want back, What is feasible?

First and foremost though: I am not a rug to walk on and while being polite-even coldly polite- is fine, I need to say, without guilt, "Look, you can't do this."
I'm attempting with everything not to apologize... make it mean something, like when I say no, another word I struggled with (the opposite way) So far I'm still awkwardly replacing it with "Suck it" in conversations with friends.
But, I'm absorbing a few nutrients now. I've got a lot of fish to fry, as it were... projects, the need for escape.
I also have to stand up for me. No more letting myself be dragged, to have my happy moods changed into something else. No more letting people talk over me. It's upsetting and embarrassing, and I will have my say!
I will quit doing my malfunctioning robot: Intend something else, short circuit, head swivels around by a thread, sparks shoot out and I'm guaranteed to say something that, if not intentionally so, strikes people wrong, but can also be the words I've thought about saying while people shouted over me and told me that I had to speak this way, no that, and couldn't use my hands, (Impossible), insisted I translate all conversations with deaf people (Uh, no. That's private.) And sometimes it gets unleashed on the wrong person. Or it's entirely innocent and yet... phrased very badly. That's among my many tasks.

Friday, August 29, 2014

Howard Lovecraft and the Three Kingdoms: Update

Update! The beautifully-appointed hardback set of "Howard Lovecraft and the Three Kingdoms" is so close to Arcana's goal! Let's give it a little boost! Thanks to community support, and word of "mouth" the fund has gone up 40+% in a week!

Introduce the glory and weirdery of Lovecraft's world to your children, grandchildren, nieces, nephews... To YOURSELF! And do it with a classy, SO-appropòs- leather-bound volume (and maybe even candlelight!)

To support the effort to introduce such beauty, please visit Howard Lovecraft and the Three Kingdoms KickStarter and watch the video!

Thursday, August 21, 2014

Howard Lovecraft and the Three Kingdoms

A project very near and dear to my heart: Making the charming and beautiful HP Lovecraft prequel graphic novels about young Howard Lovecraft and his loyal pet and friend, Spot more accessible to the masses AND showcasing them in a format that best suits them: Leather binding! The wonderful and imaginative writer, Mr. Bruce Brown, and the fantastic folks at Arcana are making many (weird) dreams a reality, as AT LAST! The missing middle of the Howard Lovecraft trilogy, "Howard Lovecraft and the Undersea Kingdom" will be available.
Please take the time to watch the video at Kickstarter, and help honor the innovative HP Lovecraft for his birthday.
KickStarter Campaign: Howard Lovecraft and the Three Kingdoms Hardback Graphic Novel