Tuesday, November 25, 2014

CRPS: Recent Articles

The blog has fallen by the wayside, and for those cruising for recent CRPS articles, either scientific and research-oriented or of the consciousness-raising sort, my apologies.  Months and matching colors are done to death these days, but for what it is worth, the color for CRPS / RSD is orange, and the month is November.

I've been wearing a neutral palette but Fred has a collection of orange tees, so he's been representing
-- he just did not know it.  He also has a collection of butt-ugly kelly green tees representing a fine local elementary school.  They had a surplus supply on sale outside the gymnasium where we cast our recent ineffectual ballots.

Luckily, Fred has an impeccable sense of style and has been able to mute the blaring, screaming, Munchesque insanity of his well-constructed cotton raiments, able to bring stinging tears to the eye, by careful pairings.  The unexpected tweed, a vest, studied distressing.

Oranges, yellows, and greens are the precise seasonal colors I was warned to avoid as I grew into a sallow-skinned woman, flirting with the stylishness of permanent jaundice.  I remember my stepmom going through some rabid phase that led to women breathlessly inquiring of one another:  "Have you had your colors done?" When shopping, small color wheels could be surreptitiously consulted -- along with carefully constructed portfolios of looks from foreign fashion magazines, including hair styles and colors meant to best complement, say, a round faced, frizzy-headed, heavy-lidded, thick-browed thin woman in the late stages of liver failure, who could benefit from a chin implant and another half-inch of nose.

Okie-dokie, then!

Here are some recent CRPS / RSD articles, most meant to inspire and just get the word out of the existence of this soul-sucking disorder.

Some of you have wondered how I am doing.
I am doing badly and have given up trying.
I am also inspired by the bravery of those who never cease their efforts to inspire others -- inspired during those brief breaks from the disgust that colors everything... orange.

They picked orange because the iconic red had been snagged by HIV / AIDS but needed something to make folks think of fire, burning, heat -- since one of the favorite, oft-repeated descriptions CRPSers toss off in studied blitheness is to urge the poor soul who dared wonder aloud what CRPS must feel like, since it looks so darned enticing, is " imagine your hand/foot/leg/arm was doused in gasoline, lit on fire, and then kept that way..."

There are other popular versions, some of which have the burning gasoline coursing endlessly through veins, arteries, and capillaries, many quoting the McGill Pain Scale, in which CRPS / RSD is usually represented by "causalgia."   It's confusing, but the disorder used to be divided into "Reflex Sympathetic Dystrophy" and "Causalgia,"  now represented by "Complex Regional Pain Syndrome," Type 1 (the former RSD) and Type 2 (the former causalgia).  Sadly, some medicos don't stress the distinction, but there is one, or several. The cocktail party version is that Type 1 lacks an evidentiary nerve lesion and Type 2 presents with a documented lesion or nerve injury. After the second smoked salmon hors-d' oeuvre, the crib-noters will wave a savory cracker about and say something like: "But it makes no difference, because the treatments, such as they are {snicker::snicker}, are the same." Untrue, but there is usually some party-goer anxious to talk football.

Ah, the McGill Pain Scale.  Here it is, and the spiel that goes with:

This must be an updated version.  I'm glad, because explaining how I have causalgia in my right leg and left arm, but reflex sympathetic dystrophy in my left leg and right arm? It's a buzz kill, for sure. Don't get me started on my new diagnoses of ulnar nerve palsy and bilateral carpal tunnel entrapment... or the CRPS in the lower part of my face.  That, in party terms, could carry us through the canapés and a light dessert wine.

The bottom line?  In the orangy month of November, when sufferers of CRPS, that ancient degenerative neurological disease without a cure or a decent treatment dance around the graying trunks of Fall's stark trees,  Saying "constant, unrelenting pain" does not have the panache of the more restrained and easily extrapolated experience of being injected with burning fossil fuels.  Then try explaining the concept of "spread," and the addition of spasm/dystonia.

Drunk in the cracked vinyl bench back seat of the cab, loving the old oily scent of cigarettes and a mélange of good and bad perfumes and hair products, wondering which home the cabbie has chosen for destination, my mind wanders to that weird and wonderful time in Montréal... home to McGill and the famous scale, as well as to a summer "collecting" joual for a linguistics prof, and eating every version of trout known to the Canadian chef.

Now, as for those articles, here are a choice few, with excerpts:


CRPS involves a malfunction of the nervous system that causes pain (often diffuse, intense and unrelenting) and related sensory abnormalities). Dysautonomia means dysregulation of the autonomic nervous system (ANS). The ANS controls involuntary bodily synergies between the sympathetic and parasympathetic nervous symptoms. Necessary involuntary functions include things like heartbeat, breathing, digestion, and body temperature regulation. Studies have also linked the nervous system to the immune system, suggesting a possible correlation between ANS and autoimmune disorders. 
In dysautonomia, the ANS does not respond to stimuli appropriately, either the parasympathetic or sympathetic nervous system can be hyporesponsive or hyperresponsive, often heightened by physiologic and psychologic stress. In those with mitochondrial dysautonomia, mitochondrial dysfunction is believed to cause the dysautonomia. 
Since mitochondria provides a source of energy for cells, fatigue related diseases are common among mitochondrial myopathies. Nerve cells in the brain and muscles require significant energy and are depleted with mitochondrial malfunction.

Chronic pain isn’t all in the brain,
which is good news for sufferers
Complex Regional Pain Syndrome (CRPS), one of the most severe body pains, can occur after injury to a limb. The injury preceding the condition may be small, sometimes a bee sting. Large parts of the limb become excruciatingly painful and virtually untouchable – even a draft of air may be difficult to bear.
As with other chronic pains, many of us experts have been assuming the main problem for these patients is in the brain. But it recently emerged that the blood of patients with this condition carries specific immune substances, termed “autoantibodies”. These substances can probably cause pain by binding to peripheral tissues, prompting sensory nerves to misfire – although the exact pathway is not understood. Misfiring of sensory nerves results in a state where the central nervous system, including the brain, has become “wound up”.
In CRPS, peripheral nerves may thus play a role comparable to electronic transistors: with very low abnormal peripheral input generated by the autoantibodies, the nerves steer a massive central abnormality. Without trauma these newly discovered antibodies are probable harmless; the trauma-induced inflammation is required to render them harmful.
In fact, these antibodies may only be present for a limited time, during a “window of vulnerability”, in sufficiently high concentration to cause harm after trauma; the same trauma sustained either earlier or later may not trigger CRPS. The good news is that there are treatment methods, originally established for the treatment of other diseases designed to reduce or remove auto-antibodies, which can now been tried.

Fort Washington man with rare pain syndrome seeks relief from nine years of anguish

Move forward a few years: the RSD/CRPS, now plaguing Justin, inspired the Brown family to seek extreme measures in pursuit of a cure. In 2009, they flew to Monterrey, Mexico, to the Hospital San Jose Tec de Monterrey, where Justin underwent an experimental treatment, allowing doctors to induce a ketamine coma, essentially powering down his brain for five days.
“Basically, what it did for five days was shut down [his] nervous system,” Joan says, “almost like rebooting a computer, and then bringing him out of the coma, thus trying to reboot his nervous system so it stops sending the [pain] messages.”
Waking up from the coma was difficult, Justin says. He experienced hallucinations and a sort of mental jetlag; Joan and Rick had to repeatedly remind him who he was and where he’s from. They showed him old family photos to help reorient him.
“It was a horrific experience,” Joan says, “for him, for all of us. He went through the coma and came out of it and then he was doing better,” things seemed to be looking up.
But then another of many misfortunes struck him
“He got the swine flu in the hospital in Mexico,” Joan says, adding that an illness as serious as the swine flu typically wreaks havoc on someone suffering from RSD/CRPS, taking the victim’s already excruciating pain and amplifying it. The swine flu and the subsequent months of recovery “pretty much wiped out everything that the coma had done for him.”
It was back to square one. After six months — during which the family was living in of the hospital, sleeping on couches and air mattresses — it became clear that there was no fix for the RSD/CRPS in Mexico. The family headed home, and over time, weathered a number of other medical travails, including Justin’s fight with pneumonia and the removal of his gall bladder.

By now, Justin has endured nearly a decade of hell, to the point that even sleep is a source of terror and exhaustion for him. With a third of his life given over to unending pain, Justin says he now suffers from Post-Traumatic Stress Disorder; at night, the terrors overtake him.
Integrating Biofeedback into Pediatric Pain Programs Brings Opportunities and Obstacles

Children experiencing pain from conditions ranging from asthma to trauma can benefit from the use of biofeedback. A new focus on interdisciplinary medical care is integrating biofeedback with other forms of care. As health professionals collaborate for optimal patient care and outcomes, both advantages and disadvantages appear for biofeedback clinicians. 
In this issue of Biofeedback, an article explores the integration of biofeedback within the larger treatment of pediatric pain. Biofeedback services in pediatric pain are described and three case studies illustrate issues that arise in interprofessional care. Biofeedback can play an effective role in combination with other therapies, although it can be difficult to isolate its influence as one part of a medical treatment plan. 
An integrated inpatient pediatric pain program has been designed in one clinic to treat children with chronic conditions, including complex regional pain syndrome, daily headache, and fibromyalgia. A typical program involves 3 weeks of treatment, in both individual and group settings, and incorporates biofeedback along with rehabilitation therapies, behavioral health services, medical subspecialty care, alternative therapies, and school. Biofeedback enhances the teaching of self-regulation skills and motor control. This program has shown clinically significant changes in the lives of patients. 
A hospital outpatient pain program treats pediatric headache, post-concussion syndrome, and chronic pain. A pediatric neurologist evaluates the patient's medical needs and develops a treatment plan. This can include biofeedback, physiotherapy, occupational therapy, social work, and psychology. Patients learn to control breathing, heart rate variability, and temperature as stress recovery techniques to help them cope with or avoid pain. 
For biofeedback clinicians, this team approach to care increases access to the patient, raises the consistency of therapy, and allows more immediate impact--knowledge gained from a biofeedback session can be incorporated into a physical therapy session the same day. Ongoing communication among team members can ensure that biofeedback supports the larger, unified aims of the program. 
Integration also poses obstacles, including scheduling a patient around multiple providers, difficulties offering individualized biofeedback treatment protocols, and issues of reimbursement. However, the development of interprofessional care teams provides the opportunity to expand and strengthen the field of psychophysiology and biofeedback.

© 2013 L. Ryan

Monday, November 24, 2014

"We see no reason / Why gunpowder treason / Should ever be forgot!"

Michael Brown, 9 August 2014, Ferguson, Missouri

“Behind this mask there is more than just flesh. Beneath this mask there is an idea... and ideas are bulletproof.” 
― Alan Moore, V for Vendetta

“Because while the truncheon may be used in lieu of conversation, words will always retain their power. Words offer the means to meaning, and for those who will listen, the enunciation of truth. And the truth is, there is something terribly wrong with this country, isn't there? Cruelty and injustice, intolerance and oppression. And where once you had the freedom to object, to think and speak as you saw fit, you now have censors and systems of surveillance coercing your conformity and soliciting your submission. How did this happen? Who's to blame? Well certainly there are those more responsible than others, and they will be held accountable, but again truth be told, if you're looking for the guilty, you need only look into a mirror. I know why you did it. I know you were afraid. Who wouldn't be? War, terror, disease. There were a myriad of problems which conspired to corrupt your reason and rob you of your common sense. ” 
― Alan Moore, V for Vendetta

Remember, remember the fifth of November, 
Gunpowder treason and plot. 
We see no reason 
Why gunpowder treason 
Should ever be forgot! 

Wednesday, November 12, 2014

Neil Young: Thrasher

Neil Young has said "Thrasher" references Crosby, Stills, and Nash, and the turbulence of the 70s. All I know is that it's fine writing, and that it elicits those sudden, firm, knowing nods when the music hits a chord.

They were hiding behind hay bales, 
They were planting in the full moon 
They had given all they had for something new 
But the light of day was on them, 
They could see the thrashers coming 
And the water shone like diamonds in the dew. 

And I was just getting up, hit the road before it's light 
Trying to catch an hour on the sun 
When I saw those thrashers rolling by, 
Looking more than two lanes wide 
I was feelin' like my day had just begun. 

Where the eagle glides ascending 
There's an ancient river bending 
Down the timeless gorge of changes 
Where sleeplessness awaits 
I searched out my companions, 
Who were lost in crystal canyons 
When the aimless blade of science 
Slashed the pearly gates. 

It was then I knew I'd had enough, 
Burned my credit card for fuel 
Headed out to where the pavement turns to sand 
With a one-way ticket to the land of truth 
And my suitcase in my hand 
How I lost my friends I still don't understand. 

They had the best selection, 
They were poisoned with protection 
There was nothing that they needed, 
Nothing left to find 
They were lost in rock formations 
Or became park bench mutations 
On the sidewalks and in the stations 
They were waiting, waiting. 

So I got bored and left them there, 
They were just deadweight to me 
Better down the road without that load 
Brings back the time when I was eight or nine 
I was watchin' my mama's T.V., 
It was that great Grand Canyon rescue episode. 

Where the vulture glides descending 
On an asphalt highway bending 
Thru libraries and museums, galaxies and stars 
Down the windy halls of friendship 
To the rose clipped by the bullwhip 
The motel of lost companions 
Waits with heated pool and bar. 

But me I'm not stopping there, 
Got my own row left to hoe 
Just another line in the field of time 
When the thrashers comes, I'll be stuck in the sun 
Like the dinosaurs in shrines 
But I'll know the time has come 
To give what's mine.

© 2013 L. Ryan

Tuesday, November 11, 2014

Five Dollars an Hour

I've got the Neil Young of "Harvest" and "Comes a Time" in my head, impossible tasks at hand, and late night coffee on the way.  There's a heartfelt post waiting for the courage of a button-push that likely won't come.  In a majorly disappointing show of personal weakness, I've allowed people who toss around the word "love" and "God" as the predictable preface to condemning me to those warmer climes of fire and brimstone into my space, even into the holy interstices.  More personal weakness -- I fed the "love/God" Trolls.  These Trolls are already overweight, either in body, in malice, or in avarice, so I did at least limit their kibbly treats to low cal, tartar control, high protein pork products.

What has their "love" and public references to "God"schtuff taught me?  Well, there is the reminder that stress is terrible for CRPS, and derails my neverending efforts to control soma with psyche. It might be better put to say this instead of alluding to "control": Nothing can squelch my ardent desire for soma and psyche to so ardently entwine as to fog the view from these formerly sparkling big baby browns.

Actually, the glaucoma meds have these neat side effects!  No, not the itchy, redness and blurry vision, you jokers!  The double ring of beautiful greens that now surround my previously ordinary iris of backroad mud.

If you've never indulged, indulge -- take a look at your iris in a hand mirror.  It's a thing of beauty, no matter if brown, blue, or some exotic blend.  There are feathers in there, and light.  Infinity. The iris of a living eye puts the most masterful kaleidoscope to shame.

This will sound morbid, and for the longest time the memories were used in morbid fashion against me by that previously mentioned actor, psyche, but if you ever are with a being as life leaves his body, keep talking, and keep watching the eyes.  They are always beautiful and they always fade, sucked inward, subsumed, gone, at the moment of true death.  Keep looking as long as the situation allows, for the iris remains beautiful, and a marker, worth remembering.

In any event, maybe I just wanted the distraction of Trolls -- they're easy; they're stupid; they feed that misguided sense of "mission." Anything to avoid thinking about whom and what matters.

I don't think I've published this poetic effort before.  Don't much care because it brought me joy and back into contact with, as just stated, that which matters.

It was written "for" an unimportant poetry contest about three years ago. There was a time when my brother Bob ("shrink, tunors, shrink!"), my stepsister, and I were, all three, of "babysitter" age. Our dad was in Vietnam and, sad to say, that was the happiest year of our lives. The street we lived on -- off base, in civilian freedom for the first time ever -- was full of fun, young families. A big need for babysitters!

My sister and I earned a fair amount of spending money as run-of-the-mill, adequate sitters, but you know who everyone really wanted? Bob! Six foot four, a pony tail, and a kid magnet. The softball games he organized after dinner were the stuff of legends. A fielding position for everyone in the neighborhood, a turn at bat that always produced a play, if not a run. Sudden new rules!

He would pick up toddlers, carry them over his head and run them around the "bases" -- a telephone pole, the fender on The Rabbi's station wagon, the Smith's holly bush, and all the way to someone's front door home. He cooked, he cleaned, wore everyone out (clientele or not), and even groomed pets. I used to stay awake, waiting for him to come home and turn his evening into a bedtime story. I remember falling asleep to the soft cadence of "Meanwhile, back at the ranch..."


Five Dollars an Hour

My brother Bob was the most popular sitter,

the Vicar of Fitzgerald Street,

as baseball runners coasted home, zig-

zag tagged lamp posts, car bumper bases,

magic places, all, triumphant!

Hitters held their crouch,

proud of his boast of "way to watch

the ball, there, buckaroo!," suburban

cowboys and girls, night's gloam

softened even in Baghdad, believing

beloved and loving because of his six

foot four, pony-tailed dominion

over locusts and Pentecost.

The birds, most house sparrows, moved

stumbling, criss-cross clawed and closer

to his soft "hey, batter,

hey, batter" banter poise of noise,

to roost and erase the day's

gateposts, attacks, door

posts, counterattacks, lacy graces,

and atlases with their gridded ghosts.

Because Bob was big and strong, scooping

gurgle-bubble babies, carried directly

from danger straight into fun [aloft! the roosting

birds approved with rustles!], to dunk them

in bathtubs and sinks, have them dreaming,

scrub-dub, of outrageous happy endings

to farflung bedtime stories

begun before tater tots,

strumming guitars through broccoli

-- "the giant's shrub" -- and after asking,

"Are the pets all fed?" -- it was off

to bed, exhausted, safe, fear quashed,

memories of catching, hitting, chasing

balls, and phrases of soft praise.

Monsters and thieves ran fast away

when Brother Bob flew front doors open:

Dismayed and afraid -- though a few came to stay,

reformed by joshing scoffing and the fun

of washing cookie sheets and tossing

foil wrap in the trash, "Three pointers!"

But then they'd loiter, unsure, until by his pied

piping, terror's buffer, they slipped, too,

far from suffering, ushered, sliding into dreams'

home plate, like cloud cover, while he surveyed

the kitchen, stowed the butter,

and swept the floor. Big-handed

tender, he was the favorite, too,

for brand new babies, newer-than-new

preemies, who soaked the august promise

of sun, chrome fenders, and one-

day line drives from his slender fingers.

I would wait at home to hear the tales

of naughty boys and bawdy daughters,

dogs that nipped and cats that scratched,

or -- giving up all that -- I would

wait at home for my turn, my viewing,

my comfort at his comfort, my turn

at his standing tall, the flash of

his "I know you" smile,

his "What are you doing up, kid?"

My beloved own once-in-a-while,

never bitter sitter...

© 2013 L. Ryan

VETERANS DAY REPOST: In Honor of Lieutenant Colonel "Wild Bill" [USAF]

originally posted 3 July 2012


Oh! I have slipped the surly bonds of Earth
And danced the skies on laughter-silvered wings;
Sunward I've climbed, and joined the tumbling mirth
Of sun-split clouds, — and done a hundred things
You have not dreamed of — wheeled and soared and swung
High in the sunlit silence. Hov'ring there,
I've chased the shouting wind along, and flung
My eager craft through footless halls of air. . . .

Up, up the long, delirious burning blue
I've topped the wind-swept heights with easy grace
Where never lark, or ever eagle flew —
And, while with silent, lifting mind I've trod
The high untrespassed sanctity of space,
Put out my hand, and touched the face of God.
— John Gillespie Magee, Jr

[reposted from July 3, 2012]

My father died last night, apparently, and all I can think of, at the moment is the first line of Camus' L'Etranger, one of his greatest, but beyond absurd in my situation.  And so, of course.

I cannot get hold of an actual obituary but I assume that my blood relatives wouldn't lie to me about a thing like that.  But I've been wrong before, and it's a crazy bunch.

So -- for him, the pilot, I offer "High Flight," which I believe was posted here just recently, for some eerie reason.

What's eerier?  A few nights back, I dreamt that the man gave me his watch.  It was not a Rolex.  Not even a Timex.  Just bulky and silver, with lots of do-dads on it.  That was it.  The extent of my dream profundity.

I had to go to the Infectious Disease doc's place in spite of the colonel's death, and it turned out my temp was a bit over 101 and that my blood work from last week sucked.  They drew blood cultures, stared at my staring eyes, and sent me home.  I'm screwed -- normally, I don't answer the phone.  Now, because of the colonel and the ensuing phone-yappers, I will also have to deal with the medicos who love to telecommunicate.  In short, the infection seems to be beating the crap out of the antibiotic.  "The one antibiotic we have left," El Infectious Disease Doodaloo reminded me.  He's a sweet guy.  One day, I'd like to sit out at a café, and I know the one I want, very Tuileries, very Café Renard, and have a beer with him.

One night, my father picked me up from a late baby-sitting job. I was in high school.  We lived sort of out in the boonies, on a lake, and he was an avid amateur astronomer.  There was a meteor shower.

We set up lawn chairs and watched the shooting stars.

When men walked on the moon, he and my brother-unit Grader Boob successfully convinced me that I could see the men through our backyard telescope.  They had me giving excited descriptions of all their lunar activity.  Have we discussed my gullibility much here on the blog?

I hope for him -- the after-death is flying, flying, flying... occasionally flipping his plane to smoothly bisect the space between silos and chimneys... a claim of his I always believed, mostly because I saw some other Fly Boys laugh and nod, ascots never askew.  Fighter pilots are grace-blessed nuts.

My thoughts are with his beloved wife, Margaret, his daughter Kathryn, and her son, his grandson, Brian. His sister Nancy, too, and brother Jim. Mostly, though, I am thinking of Tumbleweed and Grader Boob, his Good Sons.  

He's to be buried, I guess, tomorrow, Sunday, at 3 PM, with military honors.  I  guess that means an honor guard, a presented flag, salutes.  Were I there, I'd raise a scotch, and remember stars like bullets, his caring for his own aging mother and father, his love for a certain cock-a-poo, and the bevy of air evac nursing personnel who loved to scream out "Heyyyy, Wild Bill," whenever they scooted by in a jeep.  He flew many a mission, low over Cambodia, no lights, to rescue the wounded and bring them to Clark for medical treatment.  He also dropped a lot of bombs, and deforested with Agent Orange.  He lost, I was told, two barracks of men in a bizarrely successful nighttime shelling at Phan Rang.  He liked the album Sounds of Silence by Simon and Garfunkel.

But then, too, he adored Herb Alpert.

Sunday, November 9, 2014

Just wow: "Lay Lady Lay," Keith Jarrett Trio

I long to see you in the morning light
I long to reach for you in the night
Stay, lady, stay, stay while the night is still ahead

© 2013 L. Ryan

Saturday, November 8, 2014

An Email to Lumpy Becomes Today's Post

Early on, you asked how I kept from "becoming [my] disease." By now, you know that I did not have such success, and that the Exceptional People who do manage to project a persona of oblivion to true suffering are large suppurating pustules in need of drainage. They are Uncle Festers.

I divert.  Early on that meant a Frenchified tendency toward organized divertissements, especially if they shed light on how to become an Exceptional Person.  Later, and now, I devolved and now have a laser focus on diversion as entertainment, minutiae, and above all else, the tracing of how I got from Point A to Point Z during the course of a difficult stretch of time. 

I divert, via this process of provenance, during whatever I consider my "day time." 

During the remaining night time, I engage in diversion via memory exercises and listening intently to music.  I try to remember the details of every house, apartment, and room that I have lived in. Even reconstructing the formal nature of the previous three days' worth of waking provenance and the greater fun of Activities of Daily Living, in precise order and with as much sensory recall as may be mustered. Which clothes went in the washer? How many fake sugar packets sweetened my bedtime yogurt? Did Fred wake with Albert Einstein hair or was he more of a Helmet Head? Marmy frequently stumps the process, as I lose patience with her, and emotional fuck-ups upset the beautiful precision of recollection.

That's a good time, in the night, to switch to music. In perfect bookends to the day, Marmy fucks that up, too, as removing the earbuds from my ears and rerouting my attention to soothing her in the dark, listening to her odd "ack-ack" complaints until she purrs and settles her angular little body into whatever part of me hurts the worse -- as doing these things make immersion into song impossible. 

Sweet girl that she is, however, she knows there follows the only sleep I will get.

Let me show you the provenance adventure undertaken in the past hour, when I realized that more pain medication would not do the trick and that I was not physically able to conjure up another fish stew, made magic by the chaste use of tarragon and smoky hot paprika, as well as by the creation of eggplant croutons, nuggets of crunchy splendor.

I needed a new batch of books to read and am set on the idea of finally learning something about 20th century English and American novels.  The rich gift of 20th century American poetry still blesses me.

Casting about for guidance in choosing what great modern literature to read, and sensing that it's not a subject about which you can spare a rat's ass worth of interest right now, I hit upon the James Tail Black Memorial Prize.  Begun in 1919, it's a perfect source. The shortlisting is done by English graduate students at the University of Edinburgh in Scotland, and the final selection is made by "the" Professor of English Literature. No muss, no fuss, and not much money.

They do fiction and memoirs/biographies, but added a drama category out of the blue in 2012.

My first choice will be Padgett Powell's You & Me, simply because I was all set to purchase his first splash, Edisto.  

Everything in my writing, conversation, feeling, and thinking now derives from an obsession with provenance, and this obsession keeps me mostly sane. "How did I/you/the country/humanity get here from the last time I noticed myself/you/the country/humanity back over there?"  My provenance compulsion is limited in scope because it is easy enough to get lost in short leaps whereas the grand sweep of a linked history never comes successfully to fruition. The diseased body has too many occasions to insert itself into the narrative.

Tonight, I happened upon a NYTimes' article on Padgett Powell after stumbling over a strangely literate sports blog while reading around -- like a slut, really -- about something that might be called "extreme running," a lifestyle structured around events such as a "100-mile ultra marathon in the Wasatch mountains in Utah." In the middle of a well written paragraph about training, there was this mention of Powell, and a hyperlink to the Times review.

It seemed destined that I should take an oblique reference to a fairly famous USAmerican Southern writer as a serious recommendation, given the serious erudition of this blogger.  He does not, himself, live the life of running barefoot in the desert through long hot and cold nights.  No, he trains to serve his best friend, Louis, as an official "pacer" in the aforementioned 100-mile ultra marathon. Competitors are not allowed a pacer until mile 39, and are a much sought after team element, as it is hard to run in the dark alone, or to do the vertical challenges which apparently are mentally crushing there at the end of the race.

I now have many questions about pacers and ultrarunners. These questions will lead to other things, and tracking the provenance of whatever tomorrow's end goal after my first session of diversion will be rich fodder and helpful in transforming pain and self-pity into something else.  For instance, there is a haughtiness in the currently abstract and abrupt assertion that pacers, or even support teams, are not needed for 50k events. These people are clearly sneering at me, daring me to ask "but, why?" 

So in searching for finger holds and toe grips on the frustratingly vertical wall of this sport, I discovered a Southern writer to read, one Padgett Powell. In doing the always energizing down and dirty rapid strip down of the author, meaning a visit to Wikipedia, there it was, a mention of  the James Tail Black Memorial Prize, and Scotland.

And my eyes have given out, and my stomach hurts, and Marmy has tuned in to the night time.  My MP3 player is fully charged and lowfat plain yogurt yodels mine name from the fridge.  Fred is hunkered down in front of his desktop, and, besides, we said "good night, sleep well" hours ago.

Thus ends this bit of performance writing, undertaken by unearthing the provenance of one of your disarming, deflecting remarks, playing to my cloying ego: "I've always wondered how you kept from becoming your disease." 

I take that back.  It was a moment of sincerity on your part, which is why I've been relentlessly honest and boring in the performance of my answer.

I love you, as a good mother would tell her child, "to the moon and back." I am no one's mother, certainly not yours, but the phrase is apt.

Will let you know how it goes with You and Me or Edisto.  I am still able to read about an hour a day for pure pleasure, so long as there is yogurt.

Your sister

© 2013 L. Ryan

Friday, November 7, 2014

"If I Should Fall Behind," Bruce Springsteen and the E Street Band

Bruce Springsteen and the E Street Band - If I Should Fall Behind 
at Civic Center in Hartford, CT on May 8/2000.

We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walking a hand should slip free
I'll wait for you
And should I fall behind
Wait for me

We swore we'd travel darlin' side by side
We'd help each other stay in stride
But each lover's steps fall so differently
But I'll wait for you
And if I should fall behind
Wait for me

Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let's make our steps clear that the other may see
And I'll wait for you
If I should fall behind
Wait for me

Now there's a beautiful river in the valley ahead
There 'neath the oak's bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I'll wait for you
And should I fall behind
Wait for me
Darlin' I'll wait for you
Should I fall behind
Wait for me

© 2013 L. Ryan

Wednesday, November 5, 2014

*Possible* Lead in the Lindsey Baum Case

Lindsey Baum, 2009

An Aberdeen, Washington, man who worked for a non-profit that assisted children, “The Gregorian Group," has been arrested "on suspicion of multiple child rapes and molestations."

Gregory Brian Johnson will also be investigated for any ties to the disappearance of Lindsey Baum, last seen in nearby McCleary in June 2009.  She would now be sixteen. Gregory Johnson lived in McCleary at the time Lindsey went missing.

The following information comes from KIROTV.com:

MONTESANO, Wash. — Gregory Brian Johnson, 48, who heads an Aberdeen nonprofit organization that works with children, has been arrested on suspicion of multiple child rapes and molestations.
On Tuesday, the Grays Harbor County Sheriff’s Office told KIRO 7 it will investigate whether Johnson could have had anything to do with the 2009 disappearance of Lindsey Baum, who lived in nearby McCleary.
A department spokesman said that’s standard practice whenever someone in Grays Harbor County is suspected of abusing young girls.
Johnson was arrested on Halloween after a now-23-year-old woman told Aberdeen police that Johnson had repeatedly raped and molested her from the time she was 9 years old.  Sgt. Art Laur said the woman agreed to wear a recording device and got Johnson to admit “to some of the statements she told us about what happened to her.”
The woman's 11-year-old half-brother also told police Johnson molested him from the time he was 4.
While the Grays Harbor County Sheriff’s Office investigates a possible connection to the Baum case, Aberdeen police are investigating whether Johnson may have abused any of the children he came in contact with through his nonprofit organization.  “The Gregorian Group” operated out of a downtown Aberdeen office building and offered young people a place to hang out, and coordinated hiking and camping outings, according to its Facebook page.  That office is now closed.
Johnson remains behind bars at the Grays Harbor County Jail in Montesano.

Although I've not posted about Lindsey lately, I check every week for reliable news on her case, and there has been nothing but the various odd psychic insights and the heartrending prayers for her not to be forgotten.  This is the first solid bit of information in years, and even this is a stretch.  Yet, the feeling has always been that the perpetrator would turn out to be a "local," and a serial violator.

Way back in July 2009, the first post on this blog about missing child Lindsey gave these details, and there has been precious little to add in the five years since:

Around 9:15 pm on June 26, Lindsey J. Baum, an 11-year old from the tiny town of McCleary, Washington, disappeared while walking from a friend's house to her home, only four short blocks away.
She just had an argument with her brother, but most everyone notes that she wasn't storming off mad. She didn't have the accoutrements you'd think of when thinking of a runaway -- no money, no cell phone, no change of clothes.
Some friends set out with her, so she was accompanied for a while before they peeled off to go to their own homes for dinner, or homework, a bath or shower, whatever.
Two of those four blocks are reported to be somewhat industrial -- though we are talking *rural* small town. One block away is access to a major highway.
As any child would be, Lindsey was troubled by her parents' recent divorce. Her father lives in Tennessee... [He served a tour in Iraq shortly after her abduction, and I'm not sure where he lives now.  Lindsey's mother and brother have relocated but remain near McCleary.]

Lindsey, as depicted through "age progression" technology

To read all posts concerning Lindsey Baum published on this blog, click HERE.

© 2013 L. Ryan

Tuesday, November 4, 2014

From the Coalition to Stop Gun Violence

Blatantly stolen from the Facebook page for the 

Just a few of the reasons people shot each other last month:

I ordered some food at a restaurant. When the cashier told me the price, I got upset. So I shot her repeatedly. 

My boyfriend brought a shotgun home and told me I needed to learn how to use it. So I shot him.

After Dad died, I wanted his tractor. My brother wanted it too, so I shot him in the head.http://www.baynews9.com/content/news/baynews9/news/article.html/content/news/articles/cfn/2014/10/29/sumter_deputies_man_.html

I signed a contract to restore this guy's old truck, but when I told him it was going to cost more than I had estimated, he said he wouldn't pay. So I shot him.

I was playing "gun tag" with a three-year-old child. He was pointing his toy gun at me, so I pointed my real, loaded handgun at him. I didn't really intend to shoot him, but I was drunk and I got carried away with the game.

The gun I bought for protection didn't protect my home from being burglarized. When I saw that I had been robbed, I had a temper tantrum in my front yard. My 13-year-old neighbor saw me and started laughing, so I pulled my gun and shot him nine times. http://posttrib.suntimes.com/news/30636740-418/police-enraged-gary-resident-guns-down-neighbor-boy-13.html#.VFVw4L7SyS3

I was racing radio-controlled cars with another man. We got into an argument about who won the race, so I shot at him.

I like to play with my loaded gun while I watch The Walking Dead. I got a little fidgety while I was engrossed in the show and unintentionally shot my little brother to death.

I was asleep and my cousin started jumping on my bed to wake me up, so I shot him to death.

My friend jokingly slapped me in the face, so I jokingly shot her in the head with a gun I thought was unloaded. (It wasn't.)

At a gathering after a funeral, I asked a woman for her phone number. She said no (she was with her fiancé), so I shot her and five of her family members.

Blatantly stolen from the Facebook page for the 

© 2013 L. Ryan

Family Summer Camp for Pediatric Pain Patients

RSDSA with Mission 

Dear Retired Educator:  

Here At Last: Family Summer Camp for Pediatric Pain Patients -- Free of Charge!!!
We Finally Did It!!!

The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky from July 14 - 17 and is free of charge. It will be a time for families and kids that deal with daily pain to kick up their heels and have fun in a safe, accepting environment!

To learn more about the camp location and what they have to offer, please visit The Center for Courageous Kids website at: http://www.thecenterforcourageouskids.org.

To apply for the pediatric pain family camp, please follow the following steps:

Step One: Complete the Application On-Line By Clicking Here:

Step Two: Print Out the Application, Sign It, Have your Physician Sign It and mail it in to The Center for Courageous Kids.

Other Option: To print out the application and fill it out by hand, click here:

All applications will be processed by The Center for Courageous Kids and campers/families will be accepted based on time of application, lodging requirements, and room availability.

TCAPP, RSDSA, and The US Pain Foundation realize that finances are tight for most families dealing with pediatric pain and transportation to the camp may be difficult. We are all working together to fundraise and provide traveling stipends for those who need them. More will come regarding this in the future. In the meantime, we hope you will use the advance notice to plan accordingly, create personal fundraisers for travel to camp (once again the camp is free), and/or maybe include some travel gift cards on your upcoming holiday wish list.

We anticipate that this will be a great experience and an exciting time for everyone!! Let's have some fun!!! Hope to see you all there!!!

A huge thank you to The Center for Courageous Kids, RSDSA and the US Pain Foundation for helping make TCAPP's dream come true and be able to offer a camp for kids in chronic pain.

RSDSA, TCAPP, & The US Pain Foundation

Be sure to visit the RSDSA website for the latest CRPS/RSD information including new treatment options, valuable resources, upcoming, events, and Support Group in your area.
Click Here to Visit Now!

Contact Information
Jim Broatch
info@rsds.org or 877.662.7737

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This e-Alert was made possible by the contribution of the RSDSA Community.
RSDSA Research makes a difference so can you.

© 2013 L. Ryan