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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!

Sunday, December 28, 2014

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.

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

Saturday, November 29, 2014

Challenges and Goodbyes

It's time for the annual "What is needed/ what needs to go" reviews. I always love a good challenge.

At this point, I'm free from a series of partials that I am firmly of the opinion, also turned me into an obnoxious, overemotional, twat. I'm probably not quite free of giving myself a good smack. I never really believed in out of body experiences before. It's a really weird and freakish experience to wander, to sleep everywhere but your bed, to look on and ask, "Holy shit, what the hell is THIS? Who ARE you? Get out of there, that's my body, and I'm using it, thank you very much." I think I'm still doing that to an extent.
I've been jumpier than a jumping bean on acid (Yes. I know it's insect larvae in a seed pod. I like the simile.)

While the time has come to say, "No, fusker. I don't like being dragged and shoved around. I don't like the fact that I was dragged into a grocery store on the day before Thanksgiving again. Especially when last time, you actually shoved me into the candy display. I've never really been that interested in having Reece's peanut butter cups that close to my tuchus. I really hate that you shouted, "How can you be so clumsy?!" I'm aware that this year, my stepfather/ something or other of 19 years went to the great VFW Fishfry in the Sky. I neither enjoy nor appreciate being the punching bag for this nor the person who is apparently answering for Mom's will. I'd assume that is for her to follow through. And discussion should take place... with HER. I am not,  cannot be responsible for her behaving like a grownup. My responsibility is ME. And I am upset that I have had to deal with others' issues and have not been able to be appropriate or myself, forever trying to stave off criticism or a smack."

You can feasibly say: 1) I've let myself get gotten at. 2)I need to be assertive, not aggressive. I found it irritating and frustrating when a friend both told me things I already knew AND told me to give into anger. Among other confusing statements, I've become disoriented. 3)I need to get me back. The me who delights in the fact that everything is funny eventually. The me who enjoys warped humor. The me that loves freedom... to choose, to run free. To learn from, even if I don't agree.
People that make me feel uncomfortable due to inappropriate touching or needing to comment on personal choice-hair style, that I need to eat this or that, do this or that, don't understand why I'd dislike certain situations or types of touching... need to go. My eyebrows, the formation of my skeleton, if I prefer to do this or that, is really my business, and feeling uncomfortable about it is wrong.

I also need to remember that the next 4 weeks is explicitly set up to set light to the darkest part of the year and in two weeks, the week of joy is coming up. What good is it to be sad over how I'm not this, I'm not that? Sure, I hope to rectify a lot of things. To recoup from illness and injuries. But I absolutely have to set aside that which does not help me.

As for freedom, of my own... I think I need to leave NY by spring 2016, and ensure better health care, better employment, better education. A place where I have control over wall colors, myself, what I believe, what I do, where I go. I have to help BETH.

While I fully enjoy helping others, I know when I've been kept in the dark too long. I won't be accepting "Let me take care of yous" it's creepy and has some weird overtones. And I hate being in debt to anyone. I have a tendency to want to nurture; there ends up being a weird Frau Boucher style creepiness if I think, "I'm not doing enough." This has to go. Being nurtured is fine. But I think I should start with me.

Tuesday, November 18, 2014

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.

Thursday, November 6, 2014

A Time to be Human

It's frustrating, frightening, and horrible when you can somewhat stand outside of yourself, daring, begging, and fighting for control. For understanding. An old prayer generally associated with St. Francis asks: "... Let me seek not to be understood, but to understand." Sometimes, interests and protection need to be on a human, not saintly level. I have not done so well lately. My emotions need Depends. I cannot help others until I help and heal myself.

I have problems hearing-made worse lately with a slew of technical issues and a sinus infection that refused to die. I am, however, acutely sensitive to tears, anger, or what I think is anger. Panic does nothing for me, but send me into a spiral.
I cannot handle the pseudobulbar affect ad (for awareness) as the actors are very loud and over the top. If I am freaked out, I react very weirdly. I cannot assume others understand. I can't force them. But I MUST stand for me, and my freedom. I will be pushed and pulled, scared and shocked absolutely silly. But I have to push on. I have things to face. And I know, somewhere are walls to strip down and paint a fresh blue, stars, and life. So ... while I am unable to change the facts of a cold summer night 11 years ago, I can fight my demons now.

While I shared the ad about two posts ago, I cannot watch it. This discussion is long but done calmly.