Friday, April 24, 2015

Cynthia Penaskovic had time to think about it

Shamelessly lifted from the RSDSA Weekly News You Can Use -- full of overtly more cheerful fun announcements 'n all, but I stole this one for its serendipitous conjunction with the RSDSA  International Research Consortium.  Science, good science, is where it's at.  Cynthia Penaskovic had time to think about it.

The Cynthia Penaskovic Memorial Fund

Pain is a more terrible lord of mankind than even death himself. - Albert Schweitzer.

Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it "one of the worse cases of widespread RSDS they had even seen."
Joan Penaskovic, Cynthia's sister spoke of her subsequent "solitary life spent creating exquisite beaded art which she often donated, until she could no longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need."  Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.

Joan Penaskovic and Veronica Meyers, Cynthia's mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would "serve as a lightning rod for CRPS/CRPS Research Only so that "no one would ever suffer the way I did.'  The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.

Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.

Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, "Do not let Cynthia's suffering be in vain. It was her last wish to help drive funding for Research and with your help we can cure RSDS/CRPS. Donate now."
  1. Everett Koop, former Surgeon General of the United States cautioned us that the treatments of today cannot be the treatments of tomorrow." Consider that the National Institutes of Health only invests less than one percent of research dollars into pain research. It is up to us.
To donate to The Cynthia Penaskovic Memorial Fund, visit and give generously in Cynthia's memory (make sure that you write in memory of Cynthia in the box on PayPal's second page) or in the memo line of your check.  Thank you for your generosity.

© 2015 L. Ryan

Thursday, April 23, 2015

Loudon Wainwright III -- "Bill of Goods"

for today, the joke, the truth, spewn from loudon,'
and in spite of the spittle undeniability?
i believe.

fred and i admire his basic truth telling about men;
his drilling down, despite his sadness, into the truth of women;
can all that truth end only in weeping eyes,
the need for lies?

Everything will be alright,Remember when you thought that?I sold you that bill of goods,Remember when you bought that?
Everything will be alright,Remember when you thought that?I sold you that bill of goods,Remember when you bought that? 
Everything will be alright

Couldn't make the effort
You couldn't talk the chit-chat
At the dinner table you looked tired
The soft candle light couldn't hide that.

Your perfume petered out.
There was a whiff from your nicked armpit
When the real you wafted through
And your deodorant

Couldn't stop it.
There was a fire in your building.
They still don't know what caused it.
But all your clothes and shoes burned up,

When it spread to your closet.
You had on your see-through night gown,
Not quite completely naked.
You refused the fire chief,

When he offered you the blanket.
Everything will be alright,
Remember when you thought that?
I sold you that bill of goods,

Remember when you bought that?
Common knowledge has it,
Easy never does it.
We gave each other such a hard time,

It sure was fun or was it an adventure or disaster,
Kinda sweet or sorta sour,
Nothing's that important
When it takes more than half an hour.

And if you're gonna catch it,
Pray that day that they can cure it
And the procedure is painless,
So somehow we'll all endure it.

And if there's surgery it's plastic
And entirely cosmetic,
So the new you is near perfect
For some so unatheletic.

Everything will be alright,
Remember when you thought that?
I sold you that bill of goods,
Remember when you bought that?

Everything will be alright,
Remember when you thought that?
I sold you that bill of goods,
Remember when you bought that?

Everything will be alright.

Published on Mar 27, 2015 by Own private I dunno
From "The Best of Mountain Stage Volume 1" (1991

© 2015 L. Ryan

"Only Noah was left, and those with him in the ark."

                                               Uploaded to YouTube by Jeff Romanovitch

Although credit is often given to Cash for this song, it was originally recorded by Loudon Wainwright III in 1973 for his own album, Attempted Mustache.

There once was a man who just couldn't cry
He hadn't cried for years and for years
Napalmed babies and the movie love story
For instance, could not produce tears
As a child he had cried as all children will
Then at some point his tear ducts ran dry
He grew to be a man, the feces hit the fan
Things got bad, but he couldn't cry
His dog was run over, his wife up and left him
And after that he got sacked from his job
Lost his arm in the war, was laughed at by a whore
Ah, but sill not a sniffle or sob
His novel was refused, his movie was panned
And his big Broadway show was a flop
He got sent off to jail; you guessed it, no bail
Oh, but still not a dribble or drop
In jail he was beaten, bullied and buggered
And made to make license plates
Water and bread was all he was fed
But not once did a tear stain his face
Doctors were called in, scientists, too
Theologians were last and practically least
They all agreed sure enough; this was sure no cream puff
But in fact an insensitive beast
He was removed from jail and placed in a place
For the insensitive and the insane
He played lots of chess and made lots of friends
And he wept every time it would rain
Once it rained forty days and it rained forty nights
And he cried and he cried and he cried and he cried
On the forty-first day, he passed away
He just dehydrated and died
Well, he went up to heaven, located his dog
Not only that, but he rejoined his arm
Down below, all the critics, they took it all back
Cancer robbed the whore of her charm

His ex-wife died of stretch marks, his ex-employer went broke
The theologians were finally found out
Right down to the ground, that old jail house burned down
The earth suffered perpetual drought


New International Version

1The Lord then said to Noah, “Go into the ark, you and your whole family, because I have found you righteous in this generation. 2Take with you seven pairs of every kind of clean animal, a male and its mate, and one pair of every kind of unclean animal, a male and its mate, 3and also seven pairs of every kind of bird, male and female, to keep their various kinds alive throughout the earth. 4Seven days from now I will send rain on the earth for forty days and forty nights, and I will wipe from the face of the earth every living creature I have made.”

5And Noah did all that the Lord commanded him.

6Noah was six hundred years old when the floodwaters came on the earth. 7And Noah and his sons and his wife and his sons’ wives entered the ark to escape the waters of the flood. 8Pairs of clean and unclean animals, of birds and of all creatures that move along the ground, 9male and female, came to Noah and entered the ark, as God had commanded Noah. 10And after the seven days the floodwaters came on the earth.

11In the six hundredth year of Noah’s life, on the seventeenth day of the second month—on that day all the springs of the great deep burst forth, and the floodgates of the heavens were opened. 12And rain fell on the earth forty days and forty nights.

13On that very day Noah and his sons, Shem, Ham and Japheth, together with his wife and the wives of his three sons, entered the ark. 14They had with them every wild animal according to its kind, all livestock according to their kinds, every creature that moves along the ground according to its kind and every bird according to its kind, everything with wings. 15Pairs of all creatures that have the breath of life in them came to Noah and entered the ark. 16The animals going in were male and female of every living thing, as God had commanded Noah. Then the Lord shut him in.

17For forty days the flood kept coming on the earth, and as the waters increased they lifted the ark high above the earth. 18The waters rose and increased greatly on the earth, and the ark floated on the surface of the water. 19They rose greatly on the earth, and all the high mountains under the entire heavens were covered. 20The waters rose and covered the mountains to a depth of more than fifteen cubits.a b21Every living thing that moved on land perished—birds, livestock, wild animals, all the creatures that swarm over the earth, and all mankind. 22Everything on dry land that had the breath of life in its nostrils died. 23Every living thing on the face of the earth was wiped out; people and animals and the creatures that move along the ground and the birds were wiped from the earth. Only Noah was left, and those with him in the ark.

24The waters flooded the earth for a hundred and fifty days.

Bereshit (parsha)

Bereshit (parsha)

From Wikipedia, the free encyclopedia

The first chapter of Genesis written on an egg in the Israel Museum
BereshitBereishitBereishisB'reshithBeresheet, or Bereishees (בְּרֵאשִׁית — Hebrew for "in beginning,” the first word in the parashah) is the first weekly Torah portion (פָּרָשָׁהparashah) in the annual Jewish cycle of Torah reading. The parashah consists ofGenesis 1:1–6:8. The parashah is made up of 7,235 Hebrew letters, 1,931 Hebrew words, and 146 verses, and can occupy about 241 lines in a Torah Scroll (סֵפֶר תּוֹרָהSefer Torah).[1]
Jews read it on the first Sabbath after Simchat Torah, generally in October or, rarely, in late September.[2] Jews also read the beginning part of the parashah, Genesis 1:1–2:3, as the second Torah reading for Simchat Torah, after reading the last parts of the book of Deuteronomy, Parashah V'Zot HaBerachah.
In the parashah, God creates the world, and Adam and Eve. They eat fruit that God had forbidden them, and God expels them from theGarden of Eden. One of their sons, Cain, becomes the first murderer, killing his brother Abel out of jealousy. Adam and Eve have other children, whose descendants populate the Earth, but each generation becomes more and more degenerate until God, despairing, decides to destroy humanity. Only one man, Noah, finds God’s favor.

© 2015 L. Ryan

Pre-Politics:CRIME STOPPERS EPISODE #8,939,247 or Life on the Other Side of the Drawbridge

TIMELY REPOST, and remembering how to conduct real political business among real common folk, who rarely hang the day in a coffee shop... and, as I take a breath to fight hypoxia, it is always good to remember Tante Louise.


As it was a hazy, lazy day and we were in a hazy, lazy frame of mind, La Bonne et Belle Bianca Castafiore organized a hay ride. Sometimes we have to blow this Joint, Manor that it is, and get out amongst the Common Folk.

So Fred gave up dredging the algae bloom that has beset The Moat. The bazillions of pigmented cells have decided to be red, of course, in honor of our politics. We can't, despite the well-worn furrow in our collective brow (Get it? What a rapier wit.), figure how we overnourished this vast body of water. It's not like we have fertilizer run off from "the fields" -- not us! No, we three believe in extending the fallowed nature of The Back Forty to the Entire Property. Honest to God! Hommage to Captain Haddock's Ancestral Holdings Upon Which We Squat! We've not been tossing the phosphorus around all willy-nilly. The Schmitzia hiscockiana, "small, red, and rare," must have an unusual generative source.

As I said, we pulled Fred from the waterworks, and I put aside the last-minute grading from Fall Semester 1992 (Discuss: Lucky and Pozzo, Gay or Gay?). The Feline Four got all doodied-up, which involved straw hats, berets, and breath mints. After much to-do, I was convinced to brush and puff Marmy's tail, curl Uncle Kitty Big Balls' whiskers on the left side of his face (inexplicably, they droop a good 2 inches below the whiskers on the right), trim Sammy's nails -- he suffers from terrible split ends -- and repeatedly reassure Dobby that he would not miss dinner or any substantive snacking.

You've seen nothing until you see The Castafiore decked out in her HayRide Outfit. Think, if you are able, of a sexed-up Little Orphan Annie, although I believe she might have been going for more of a decadent Shirley Temple. Think spandex, think Pepto-Bismol pink. Think ringlets, think peroxide blonde.

Resist the urge to gouge your eyes... it will pass.

We finally made it out to the beautiful, winding country roads in the environs.

We finished the afternoon in town because we needed to pick up a few items at the supermarché, those things that we get in bulk. Having a wagon handy is a rarity. Finally, we are stocked up on my 6.80388 kg containers of lowfat plain yogurt. I like to have at least four of those babies available for midnight-to-4 am snacks, as well as for yogurt emergencies.
Bianca got her bulk mineral make-up supplies:

Matte Mineral Foundation
Mineral Resurfacing Veil (Fred and I chipped in for a few extra vats)
Mineral Eye Shadows (mattes, satins, and pure pigments)
Mineral Blush and Bronzers
Glo Mineral Luminosity Face Powder (Fred and I snuck almost all of it *off* the wagon)
Natural Lip Gloss
Wholesale Kabuki Brushes (to promote that "natural" look she's famed for)

The 12 kegs of Matte Mineral Foundation, alone, tipped the wagon, so we made sure their weight was evenly distributed in a kind of Stone Henge arrangement.

We stopped for ice cream and "parked" in the shade of an elm on a nearby neighborhood road. We were, without doubt, an odd sight, a bit of chaotic rustica mucking up ordered suburbia.

Entertainment happened along within minutes. We would have killed for a video camera. A quick sketch artist, even.

A bedraggled man in his 50s, a fierce look of determination on his face, struggled by us, trying to push a HUGE widescreen television, attached to some kind of -- equally HUGE -- console, down the road. Once upon a time, it must have had tiny, tiny wheels on it.

He stopped in front of a large house, just down from the corner. It dawned on him -- you could see the lightbulb light up over his hatted head -- that he just could not push this thing all the way to wherever he was going. So he left it and went running down the street. He ducked in between two cottages and shortly thereafter he came back with a shopping cart.

Yes, he had the bright idea that he was going to put this HUGE TV/console inside this TINY shopping cart.

We were having hysterics but we also were dividing into camps -- Pro-Dood-Stealing-The-Big-Screen-TV-With-BigAss-Console versus the ever-predictable Anti-Theft Sermonizers. Sympathies shifted back and forth, with each HayRider adopting, however briefly, a fierce law-and-order stance at least once.

The Four Felines are notorious for preferring risky fun to straightlaced behavior. Go figure.

Anyway, it was like watching a cartoon character have a really bad idea -- the coyote ordering Acme products in the vain attempt to blow the roadrunner to smithereens. One cartoon balloon after another popped up over this Dear Dood's head.

By the way, it was over 95 degrees out there on the mean streets of suburban Tête de Hergé. This was one *dedicated* audio-visualphile, working without a net, working without a clue.

Finally, we regained our habitual sobriety and Fred whipped out his cellphone to call the Tête de Hergé version of 911. In Europe, the emergency phone number is often 112. Here, in our very unique area of Tête de Hergé, it often suffices to call up Tante Louise -- who is a story in and of herself.

We could see neighbors begin to peek out their windows , and a couple of people came out for an unobstructed view of the action, iced sweet-tea in hand, watching the man's progress.
This was what passed for free entertainment on that slow, hot day.

While Fred is chatting up Tante Louise, who on her end is directing all the CentDouze law enforcement, I gave a shriek. Our guy, former treasurer of his high school AV Club, manages to tip the mammoth TV over, after failing to get it safely lodged in the cart [surprise!].

He stands under his thought balloon, scratching his itchy head, while the cart slowly gathers steam and proceeds to roll down the hill. I could not calm myself and gave up trying -- hooting and hollering like the Hayride Hayseed that I am.

Apparently, by then, *everyone* in the neighborhood was watching and had called Tante Louise, who promptly put *everyone* on hold and poured herself a finger or two, so as to better survive the Crime Wave.

Back at the epicenter of the action, Our Guy sprints (about 400 meters, a straight shot out of the starting blocks) and recovers the recalcitrant cart. He drags it up the incline, back to its proper position next to the humongous television. {Il prend donc une petite pause} -- and we on the wagon break out the aftermeal mints and diaper wipes. Always bring a bin of diaper wipes on your hayrides. In these days of green, you might consider Seventh Generation's "only non-chlorine bleached cloth baby wipes."

After the short break in the action, during which Bedraggled Dood perched birdlike on the curb, a timely, helpful soul came slowly driving by (just the first of the rubberneckers) and decided to stop and assist AV-Man in the orderly theft of this TV and console. Together, they managed to *balance* the thing across the cart. The Good Samaritan got back in his truck -- in a confused sort of rush -- and drove away, shaking his head, making odd gestures in the air, talking to himself, apparently realizing -- too late -- that Our Guy was not all there and that he, a Good Samaritan, was now complicit as one-half of a crime wave.

He must have noticed the ronronnement of multiple conversations with Tante Louise, the cell phones everywhere, and concluded that exiting the scene before the cops' arrival was the better part of valor.

As previously noted, the street had a pretty serious incline going on.

We watched SumDood as he first began a fast-paced walk, then broke into an uneven trot, and finally was flat out running like a man chasing Usain Bolt. He managed to keep at least a pinky on the shopping cart, which, honoring the laws of momentum, gathered up its mass and velocity and sped downhill.

We were really sad when he finally flew out of sight.
The cops came pretty quickly and the last we heard, they were trying to match up the HUGE now-wrecked TV set with its heartbroken owners.

We turned the wagon around and began the trek back to Marlinspike Hall, not at all anxious to face the worries that doubtless were waiting for us: the red swarm of algae and the many holes left to chink in the medieval wing (and in some outbuildings -- the more ancient of the gazebos, for example).

Audio-Visual Man, wherever you are tonight, God bless.

© 2015 L. Ryan

Wednesday, April 22, 2015

Facebook Idiots

Did you happen to see this gorgeous, titillating photograph of the Dalai and dear Desmond?  I found it on my top secret Facebook page, designed to keep tabs on both a wonderful group of far flung friends (most some version of academic cowgirl rabid independents on real horses, whipping up actual lemon bars, and ALL doing secret good work) and a mixture of beloved long lost relatives and non-beloved long lost relatives.

If you don't touch that sentence and just throw a little mindfulness at it, or  --  you will understand the need for my top secrecy on idiot Facebook.  I won't be troubled with the "idiot" label, either.

You can call me stoopid, even.

But moving beyond the "friends," try to find the vast Facebook-wide compendium of comments on this bit of visual pedophilia and moral putrification. The collection of "dark karma" sucks the eyes out your ear canals, but it only hurts an everlasting second.

Back to the JOY!

His Holiness the Dalai Lama and Archbishop Desmond Tutu exchange greetings on the Archbishop's arrival at Kangra Airport at the start of a seven day visit to collaborate on a book on joy in Dharamsala, HP, India on April 18, 2015. (Photo by Tenzin Choejor/OHHDL)

© 2015 L. Ryan

“[C]ompassion fatigue”: Staff ‘too stretched’ to help veterans

From THE AUSTRALIAN -- APRIL 23, 2015 12:00AM

WA Chief Reporter

Former Afghanistan Digger Sean Milne says he has been let down
 by the Department of Veteran Affairs.
Picture: Colin Murty
Source: News Corp Australia

As Australians gather in Gallipoli to celebrate the centenary of the, a veterans’ support group says thousands of the nation’s recently returned ­soldiers are increasingly desperate and suicidal because the Dep­artment of Veterans’ Affairs is ­severely understaffed.
Arthur Ventham, who runs a support service in Perth’s northern suburbs, said whenever he called the DVA on behalf of an injured veteran he was told that each dele­gate had at least 150-200 case files on their desks.
“They just don’t have the staff to cope with the influx of (compensation) claims,” he said. “As of today, there are thousands of Iraq and Afghanistan veterans who are living in their cars, under bridges and in the bush because they cannot get the help that they need to turn their lives around.”
One badly injured Afghanistan veteran, Sean Milne, told The Australian the DVA had treated him “like dirt” since he returned to Perth two years ago.
“They don’t care — they would prefer I commit suicide,” he said. “That would be easier for them.”
Mr Milne’s psychologist, Josh Hawes, who was deployed to Afghan­istan with the SAS, said his client’s mental health had been ­exacerbated by his poor treatment by DVA officers, who were swamped with claims and had “compassion fatigue”.
Mr Milne, who trained Afghan soldiers, broke his neck and injured his shoulder in an accident near Kandahar in February 2013.
He now suffers from complex regional pain syndrome, which his occupational therapist has diagnosed as a level of pain worse than amputation or childbirth.
Mr Milne can never work again and is restricted in all basic activities of daily life. He has severe muscular spasms that result in regular falls. “It’s like getting tasered,” he said of the spasms.
Mr Milne, who was discharged from the army last year, said he was still waiting for a full-body assess­ment of his injuries that he claims should have been done a year ago. Until then, he cannot ­access a Gold Card, which would cover his mounting medical and dental bills.
Mr Milne said the DVA had not yet accepted that his injuries were permanent and it had an attitude of not believing what veterans say. “They want to disprove you,” he said.
Mr Ventham, who runs the Northern Suburbs Veterans Support Centre, said Mr Milne’s case was the one of the worst he had seen.
“He is a military hero who has suffered unspeakable injustices in trying to gain recognition for his injuries,” he said.
A DVA spokesman said he could not comment on Mr Milne’s case.
[Please read the rest of Mr. Burrell's article's HERE.]

Friday, April 17, 2015

A Year Ago Today

We lost García Márquez a year ago. This photo, still causing me to grin back, commemorates the famous result of his run-in with that thug Vargas Llosa. But yes, among the other things Gabo taught the non-illustrious readers in my family:

"Cease, cows, life is short."

“Cease, cows, life is short.”
― One Hundred Years of Solitude

© 2015 L. Ryan

I Disappoint the Maine Coon, Keeper of The Manor

Would that we were laughing.

The home health aide who has been with me for about a week has fallen in love with Buddy the Outrageously Large Maine Coon (Forever Kittenette) -- click on the link and you'll see the fun of those days not so long ago,  before hospital beds 'n such, when filling the pill container for the week meant watching Buddy get distracted by Little Dobby and... crinkly paper.  Anyway, she calls him her "dog," and he actually sits and makes obscene google eyes at her, even pulling off these quasi-sexual winks and head dips.

It feels an outrageous interruption to request a bedpan in the middle of their trysts.

In the rest of the feline world, Dobby continues to run for his life, with panache -- tail up, ears back, eyes aglow.

Buddy and Dobby, both, as well as Marmy Fluffy Butt, have avoided being drugged, and all three report happy lives, though feel underfed.

Buddy and his Loving Home Health Aide missed each other today, however, part of why our laughter was hypothetical, part of why he was on High Alert until just moments ago.  He may be part dog, this wonderful Maine Coon, just as we have genetically determined that Little Dobster is approximately 90% angel and 10% House Elf.  (Marmy Fluffy Butt defies scientific quantification.)

No one notified us that Loving Home Health Aide was going to be out, and so the key tucked under the drawbridge secret hiding spot nearest Marlinspike Hall's Bronze Entrance Doors went unused as Scary Home Aide banged her way in, waking the dead and those of us toying with that estate.

Fred had been up Doing Duty until dawn.  Loving Home Health Aide had the habit of letting herself in, having a few moments of private google eyes with "the dog," checking on me, then  making the most delicious rye toast and coffee you've ever enjoyed.  Fred could sleep in peace. Even I could drift off, if that odd occurrence came about.

This morning?  Fred slipped; Fred slid. Fred let in Scary Home Aide, asked me if I was "okay with everything," then fell back into what evolved into snoozy restlessness.

And Buddy, who would, even being a fearless pooch, normally hide in the presence of strangers, took up a big-eyed, large-chested stance on... my chest, peering into my eyes with huge question marks. "Defendor of The Manor, really?"

Scary Home Aide did nothing overtly Scary. She simply did what she wanted.  Heading into the closest medieval kitchen to "wash up" the the coffee cup and the plate I had dirtied, I heard no running water, no squishing feet (hard to do in a medieval kitchen!) and I measured the passing of over 20 minutes.

The bed bath was as if a novelty, and not to me, for whom it still is, but for her, for whom it is supposed to be a regular task.

But the things that led to the later need to call my go-to-guy good doctor due to ethereal blood pressure? A knife that would chill your blood. The cooptation of a big old box of my medications -- another unearthly amount of time spent alone with a box that needed only to be set down in my former office, left there, left ALONE there, deposited there in drug solitude -- oh, you get it?!  Weirdly, the thing the flattened my neurons was the repeated retiring to the Sitting Room, out of sight, "to read my book."

Loving Home Health Aide took time off, too.  There is not endless activity, fun, toe-twirling to be had in caring for a gimp in pain with the basic of human needs. She also has a slight affinity for cooking shows -- the spicier sort of profiles -- and, sigh, mistaking me for one of those educators who mistook her students for her own children.  I can talk that talk, and have my parenting opinions, but tend to respect parents over educators in that regard. So she mistakes Buddy for a dog, me for a parent, and I make the perennial mistake of hoping a hiree is a friend.  We may all be in the right, though there is some certainty in the Maine Coon remaining a cat and me resting childless.

However, Loving Home Health Aide sits by the hospital bed, comfortable in a rocking chair, and making use of an ottoman if she (or Buddy) chooses.  Respectful of Fred and how much of this whole endeavor aims to reduce noise and increase his potential for rest, she stays nearby, you know, where she is needed?

So what is wrong with me that I could not just say any of the dozens of assertive things to Scary Home Aide that would have rectified the maladaptive situation?  One was that she made it known pretty quickly how close by she resided. Two is that I am something of a wimp around certain sorts, even when I am paying their meager salary.  I also kept thinking dumb stuff like, "You're a dumb gimp and this just exemplifies that."

Buddy kept singing into my ears that Loving Home Health Aide would have called Fred first thing and kicked her to the curb... and we all could have used our litter boxes and bedpans, had kibble and practiced winking and giggling.

I love the way Dobby keeps hanging in there. "Here I am, back here!
The older one, wiser! Halloooo!"

© 2015 L. Ryan

Wednesday, April 15, 2015

The Wide Skirt

Some deaths, passings, going "bye-bye" -- the bigger saying "helloooo!" -- I sometimes imagine the first truly cleansing rush of Universal Wind (imagine an Infomercial Exfoliator's Honest Finest: not to take off your fine skin, but to smooth it, finally, as one fine sand paper, no edges, woo hoo!

Sometimes I think of the sweetest, kindest waters to the face's corners as they meet, say, ancient, worked, twirled, and twisted, twined -- for God, karma, and ant forefoot's sake, all -- to become in one non-magical wash, The Shade.

If I take a few days, it's nice not to have to explain all that.

When Joe Cocker died, I'm sure you barely recall my visceral cry, meaning: "Damn it, I never got to writhe with him and do the inexplicable struggle to turn out the light and impart only his meaning to the rocking mic, his roll to the music," and so it was this, from the gut, lazy,
no. no. no!
that really crept out and was over.

I sat and stared at the NYTimes Breaking News Alert about the death of Günter Grass, possibly thinking from, of, and in my favorite depth: nothing.

The New York Times


BREAKING NEWSMonday, April 13, 2015 6:57 AM EDT
Günter Grass, German Novelist and Social Critic, Dies at 87

No, I'm thinking of us,
huddled in a field.

Me, on an L-shaped, huge porch in the Philippines, needing a place in all that hugeness -- rice paddies, stepped-mountains, purple skies, incoming afternoon rains, my house -- to disappear.

[Oh, I violate all sorts of things by offering you a tripartite .pdf access... but HERE ]

Because all that mattered were the stories of progeniture, passed through asylums 
and carnies, 
hot potatoes and grandmothers. 

All that mattered was:

The Wide Skirt

uploaded to YouTube by KineticProse

Less of a creep-out-and-gone than not boogying down-and-out with Joe Cocker?  
That Rothko may have painted for Grass.  

I had my moments, my many moments, of weakness, these past few days, none of which can I slough upon Günter Grass, but it did bring half a grin and enough of something to the other side of my rough and discolored face, longing for wind and water to remember what most of us do. 

And it is not this weaker of the color-blocks, no matter how much more Bunny might have reprieved a nation by penning a title to the back, bringing the faraway cost to a less chilly 41 million, and a more imaginable, alterable brilliance to their own rooms.

"Sotheby’s Offering a Rothko Once Owned by Bunny Mellon"

© 2015 L. Ryan

Pray for Jessie Claire! Do What You Do So Well For Jessie Claire!

Oh, Dear Ones, I've been raising Cain.. cane...?  I've been making noise over the Duke Blue Devils, over my inability to stand up from this wicked hospital bed, to get to the persnickety bathroom, over our failure to make it on time to the doctors' blessed appointments, over our equal failures to get the felines to obey the feline rules of the feline household! Did I hear that they're pulling Blue Blue Bell Ice Cream?

Well, forget all our usual silly stuff.  This one night, let's even lay gently aside Grader Boob the Lumpy One, though we'll take turns, okay?  Code words: "Beloved Grump." Night?  Oh, however long,  All right, I CAN do that pray unceasingly thang, and cover Beloved Grump, always.  Just gimme a doggone minute.

There is a young girl who needs our prayers, our good thoughts, our best intentions, our most wonderful of wonderfuls, and if you carry such things with you as a matter of course, then give her your matter of course.If you know karma is what is, if you have been so blessed as to know what is, then go to it, my peaceful friend!

You're familiar, if you're familiar with this blog, with parental blogs guesting here who detail the serious health problems of their children in that marvelous format created for them, mostly to share news with family and friends, CaringBridge, you know it has spread as an interwebs' phenomenon, not always, in my opinion, in a healthy way, but mostly, for sure!  And behind the scenes, no doubt, CaringBridge is on the the ball.

Allow me to introduce Jessie Claire's mom's Robin. First a bee-yoo-tee-fuu-ool picture of Miss Jessie Claire, from the outside, showing an attitude that beats all: the love of another creature, freely given, gently offered.

And timely, too! Happy Easter (a little late)!
And here are some excerpts from Jessie's mom Robin who keeps an honest but upbeat, faithful to God, faithful to herself, faithful to her daughter -- faithful to so much I am often in awe.  If you take the time to read her journaling, through the years, you don't see much change in the faithfulness -- hence, the awe. But if you know the bravery in her honesty, in her writing the doctors' opinions, the many tests results.  I applaud her juxtapositions, done, I'm sure, with the help of many prayers, foot stomps -- whatever goes for a good Bianca Castafiore's aria in her home!*  (please see below, the very below)

By Robin Henson Jul 2, 2014 11:02am

MRA of Jessie Claire's brain showing Moyamoya Disease impacting  middle cerebral arteries. [Lisa's Edit: The x-ray is unedited, unchanged, as is it's interpretation. There is no way.]  Blood flow is white from contrast.  From the center and "branching" right is healthy blood flow.   From the center and "branching" left there is no blood flow. The cerebral artery is closed.
MRA of Jessie Claire's brain showing Moyamoya Disease impacting middle cerebral arteries. Blood flow is white from contrast. From the center and "branching" right is healthy blood flow. From the center and "branching" left there is no blood flow. The cerebral artery is closed.

Prayers Please
By Robin Henson — 23 hours ago

Before providing Jessie Claire's medical update, Jessie Claire wanted me to share this:    Last week Jessie Claire went to visit her Daddy at work.  She put on his "Deputy Director" badge and went into Senate Chambers at the State Capitol. Seeing the Senators vote on bills was educational, but that wasn't what made the day so special for her.  Jessie Claire was treated like a princess.  The Lt. Governor and several Senator's asked Jessie Claire if they could have their picture made with her, gave her gifts, and a quick tour of the chamber.  I was touched by all the people who said they have been praying for her.  Jessie Claire was quick to thank a few of these gentlemen for supporting childhood cancer and she bragged that she is a Rally Kid (Rally for Childhood Cancer).  

Recently, Jessie Claire has had lots of Easter fun starting with a Spring Fling at her old school, Brighton.  However, she has not felt great in days.  Every time we have been out of the house for 2 two 3 hours, Jessie Claire gets in the car, tells me to get her home because she is tired and does not feel good.  Friday morning, Jessie Claire's left leg was numb (classic TIA (mini stroke) symptom).  Something I forgot to mention last week is that I recently learned that Jessie Claire has been having TIA's (mini strokes) for quite some time.

Tomorrow morning, Jessie Claire is having an MRI for Brain Tumors.  The Boston doctor has added additional testing to check blood flow.  This test will help determine how quickly she needs the next brain surgery which will be done at Boston Children's Hospital.

Some people told me that thought the second surgery I mentioned last week was on the left side of the brain.  Although the left side has arteries narrowing, the urgency is with the right side of the brain.  For those who are new, Jessie Claire's right middle cerebral artery is completely closed.  In March of last year, Jessie Claire had brain surgery to try and create a new source of blood flow to the right side of the brain.  We were told the surgery was needed or she would have a stroke.  Now, a year later, we just learned that the surgery did not work.

So, please continue to pray that God continues to protect Jessie Claire and she does not have a stroke. Please pray for wisdom with the doctors.  Please pray that the the brain tumors are stable.  And please pray that next steps are determined and administered quickly.

Thanks for all of your prayers.  Please share Caringbridge with anyone you know who prays. (Confession from Editor Lisa: This was when I felt compelled to write this funky post.)

[Me again, moi, who swore to minimal interruptions to Robin's perfected texts. Here is a journal entry I missed in what seems between day before yesterday and today, and as Southerners tend to, well, shout out: "Well, butter my buns and call me a biscuit!"]

Preliminary Glance
By Robin Henson — Mar 20, 2015 6:15pm

First, Jessie Claire wants to say "I have a soar-soar throat (from breathing tube) but I'm feeling better and spending the afternoon with my Nana".  I am going to take a minute to brag.  Yesterday was a very long day with some delays, but as always, Jessie Claire handled it beautifully with lots of praises from the nurses.

Yesterday we were told something that we are still trying to process...   but first we are praising God that the "preliminary glance looks good" and there is more blood flow than last year.  I asked lots of questions including "Is there enough blood flow to prevent a stroke? Any additional narrowing of arteries?  Are there any signs that Jessie Claire has had TIA's (mini-strokes)?"  Understandably, he has to "comb through the pictures" before he can answer these questions.  This is all we know for now.

Yesterday one of the doctors told me that he does not think Jessie Claire has Moyamoya.  He gave a good argument on how he came to this conclusion.  He believes Jessie Claire has neuro vasculopothy.  I read a couple of abstracts from medical journals to try and learn what this even means but decided that was a bad idea.

Yesterday was the first time I have ever heard the term "neuro vasculopathy".  However, less than 24 hours earlier, I made arrangements for a pediatric neuro-vascular surgeon and two other doctor's on his team, to review all of Jessie Claire's scans.  This doctor is the Director of the world largest and best Pediatric Neurovascular and Moyamoya Clininc.  They are located at Boston's Children's Hospital.    
This has been a year full of fear, devestation, prayer, praises, miracles, and JOY!  As always when we are confused,scared and nothing makes sense, God has gone before us to direct the path best needed for Jessie Claire-- His Path!

*"Ah! Je ris de me voir si belle en ce miroir!" -- Gounod, Faust

© 2015 L. Ryan

Sunday, April 12, 2015

to Jessie Claire... to Robin

Young ladies, I apologize!  Your blog post is coming. It was promised on April 9, and I ache to break my promises.

"Stuff" has intervened, but "stuff" cannot win out every day.

I have a wonderful aide who is going to ease much of my frazzle tomorrow.  It is clearly a requirement that one write of Miss Jessie Claire using the wise guidance of her mom Robin's high standards.

And, well, coughcough, there's my own undeniable provenance that has to be a tad toned down but still discernible.

So let this serve as a placecard for the promised celebratory post of the beautiful girl, protected, explained, and our prayers guided by her faith-driven mom.

I'm gonna say: TOMORROW!

And in the meantime, dear family, the good readers here, even if not yet knowing exactly why, know that they are with you, sensing the need, waiting for the details but trusting in the interim.


The "elle est belle la seine la seine elle est belle" magic show

© 2015 L. Ryan