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Thursday, January 15, 2015

Fear Itself

"I'm scared of only one thing: Fear itself. And spiders."_Phill Jupitus
  As a caretaker, you must be careful of the messages you give off in your quest to help your loved one. The conscious messages are simpler. But it's a sad fact that love and fears for safety can accidentally put your loved one (I don't want to keep using "loved one"; it feels very impersonal, but not nearly as impersonal as "The patient".)
in a bubble.

Some people are easily changed, very sensitive.
Some thrive on being a little terrified, such as when you were a child watching the Wizard of Oz. 
From flying monkeys to the Wicked Witch of the West, it's both an absolute delight and scary. That scary was part of the fun.

Nothing upsets me more than when something I'm sensitive about is harped on.
"That cop was watching you, behave" is a nasty, evil threat, even if your motivation is not nasty or evil. And, behaving can be a liability. If the "bad behavior" is a medical problem, I urge you to rethink your position on acceptable behavior. 
It's imperative.
No, it isn't fun to lose track of things, to take a nice meandering stroll because the car is usually right there! To have people harping on that wandering, or standing in a public restroom in a daze with your pants half zipped is a weird thing to do and could have potential, dangerous legal consequences. Which is NOT, NOT, NOT, NOT, I reiterate... NOT... their fault. If they are incapable of controlling themselves, have injured themselves, you as a care giver are supposed to do something. Say it with me: "I am an advocate. I am here to help my friend/ family member. If they cannot speak, I must."
As for "They were staring!" 9/10 of the time, "Hey, did your parents teach you manners?!" can suffice. If someone is doing more than staring and adding to fear, "What are you looking at?" can be used. NOTE: I don't normally advocate being rude.
If you cannot get over your own prejudices, then you must make way for more appropriate caregivers.
Please go over action plans, codes, safety procedures. Understand that both of you will occasionally frustrate the other. But... you are there to make life that much easier to live. To thrive. To heal. You are not there to moralize.

In my humble opinion, the scariest phrase by far "Isn't that too difficult?"
Please: patients- its ok to say, "Screw you! YES, I can!"

Sunday, January 11, 2015

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."

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.

Friday, January 9, 2015

A Walk on the Lighter Side

At times I've taken some REALLY serious turns.
I'm always delighted to plump for a worthy app, book, project, etc.

To this end- FANFARE!

I also delight in sci-fi, graphic novels, time travel, ancient civilizations, dead languages... er, this could take a while.

So... without further ado:

Light reading! I was sent for a 4 month, 4-round loop with a brain infection caused by chronic sinusitis. You can no longer make grilled cheese on my head, and while I need to repair things that uhh... broke... before I recouped, being stuck sitting still gave me time to find new methods of entertainment.

1)For almost a year, I've enjoyed a webcomic called 2d goggles, or, the thrilling adventures of Lovelace & Babbage.
We have the brilliant Lady Ada Lovelace, who, before her death at an early age, wrote footnotes that make me look brief!- in a treatise by the complex and equally brilliant Charles Babbage. In the alternate universe of 2d Goggles, we have
Tortured and brilliant Lady Lovelace, in her fabulous trousers, with a pipe, a racing form, and a struggle not to give into her poetic genetics of "Mad, bad, and dangerous to know" Lord Byron.
We have the fabulously adorable and naive, music-hating and goofy, brilliant Charles Babbage, who responded to Alfred, Lord Tennyson's "Every minute dies a man, every minute one is born," by dabbling in poetry himself:(He was also heard to say "I'd be a poet if I were blind," among other mysterious statements.

In your otherwise beautiful poem "The Vision of Sin" there is a verse which reads – "Every moment dies a man, Every moment one is born." It must be manifest that if this were true, the population of the world would be at a standstill. In truth, the rate of birth is slightly in excess of that of death.

I would suggest that in the next edition of your poem you have it read – "Every moment dies a man, Every moment 1 1/16 is born."

The actual figure is so long I cannot get it onto a line, but I believe the figure 1 1/16 will be sufficiently accurate for poetry. 

I am, Sir, yours, etc., 

Charles Babbage

Le sigh. Be still my heart!
Together, with an analytical engine, punchycards, cats, Queen Victoria, and a servant called Minion, they solve crime!

Lovelace and Babbage are making their debut in a beautiful book, called,  The Thrilling Adventures of... Lovelace and Babbage! Out April 21, 2015.

2) Richard III was found under a parking lot in 2012, by loyal scientists from the Richardian Society, dedicated to clearing his name.
The Richard III In the 21st Century books ask, "What if Richard III was rescued at the moment of his death in the Battle of Bosworth Field, and brought to 21st Century America? Verily, hijinks ensue!

Book 1: This Time
Book 2: Loyalty Binds Me

Happy New Year! Here's to light, and laughter like champagne bubbles. Na zadrovie!