Wednesday, October 29, 2014

Burning CDs

I'm not Buddhist today.  Tomorrow?  Who knows!

Sometimes it's really grand, a thigh-thumping grand, that suffering is life, or life suffering, in case, in translation, the equivalency we accord "is" does not hold true in the original declaration.

Did you think I was going to bore you with YouTube music videos forever?  Actually, there was considerable suppression of the more relevant music being blasted around these parts.  Some fool had me listening to Gaelic and I had a brief -- roughly 20 minute -- rough descent into Andrea Bocelli. There was flirtation with Tindersticks, a lot of lip-synching to Nina Simone, and altars built to Jerry Garcia and these Days of the Dead.

Yes, I was burning CDs, an act I'm new to and that is probably already outdated.  If so, don't kill my buzz.

It's ominous, assembling music for someone important.

You have intent, you cannot escape having intent, and yet you wish to appear to have no purpose leap through the chords, scream through the lyrics.

This is how I feel about this song.
But how will he feel about this song?

The only solution is Suppression of Intent -- and in that brief period of relief from one's self, to go with your gut, and never look back.  You pick a song, you burn it, you move on.

After the items are mailed, there's time for second-guessing to kick in.

Like... what was I thinking, leading off with this?  I mean, I used to be a huge John Prine fan until, late one night, sipping on a sloe gin fizz, I got tired of the facile.

Surely you've noticed?  I veer from the facile, abhor that which is easy, and run (toes pointed!) from observations, no matter how astute, that don't show all their work.

But he gives a good concert, and I'm fond of him, and of the days when we all giggled about getting high.

So when my brother "Lumpy" [still a Grader Boob, as he still insists on haunting a classroom, despite an advanced and evil cancer] gets these CDs, I am sure he'll think something like... "I shoulda spent more time with that kid... Meant to pass on the music that my brother passed on to me, but this sister is clearly, sad to say, low brow."

Or maybe he'll laugh, as these songs are meant to pass the driving time as he flies from campus or apartment to chemotherapy or radiation, a 6' 4" man with considerable skeletal pain, folded to fit into the passenger side of a Mini-Cooper.

I let my intent fly free at the end of the process.  I closed with Nico's cover of the great "I'll Keep It With Mine."

In case you can't tell, it's a heartfelt offer on my part -- to those whom I wish I could rock to sleep in my funky spastic arms, murmuring lies, meaning every one of them as a noble truth.

"It's gonna be all right, sweet one, it's gonna be all right."

You will search, babe
At any cost
But how long, babe
Can you search for what’s not lost?
Everybody will help you
Some people are very kind
But if I can save you any time
Come on, give it to me
I’ll keep it with mine

I can’t help it
If you might think I’m odd
If I say I’m not loving you for what you are
But for what you’re not
Everybody will help you
Discover what you set out to find
But if I can save you any time
Come on, give it to me
I’ll keep it with mine

The train leaves
At half past ten
But it’ll be back tomorrow
Same time again
The conductor he’s weary
He’s still stuck on the line
But if I can save you any time
Come on, give it to me
I’ll keep it with mine

-- Bob Dylan

Of course, another pisser in this whole process is the low brow fear of being derivative.  How many times, in how many ways, has Lumpy the Grader Boob sent me our favorite tune, such that I could not now send it back to him?

But, here it is again, for us.

© 2013 L. Ryan

requisite "harold and maude" quote, understood.

© 2013 L. Ryan

Tuesday, October 28, 2014

"A hot stake is better than a cold chop."

I fear I'll die from complications, complications due to things that I've left undone
That all my debts will be left unpaid, feel like a cripple without a cane
I'm like a jack of all trades who’s a master of none

Then there's my father he's always looking on the bright side
Saying things like “Son life just ain’t that hard”
He is the grand optimist, I am the world’s poor pessimist
You give him burdens sometimes and he will escape unscarred

I guess I take after my mother, I guess I take after my mother

But I used to be quite resilient, gained no strength from counting the beads on a rosary
And now the wound has begun to turn, another lesson that has gone unlearned
But this is not a cry for pity or for sympathy

I guess I take after my mother, I guess I take after my mother
I guess I take after my mother, I guess I take after my mother

Monday, October 27, 2014

Violeta Parra::Gracias a la vida::Mercedes Sosa

Gracias a la vida, que me ha dado tanto. .
Me dió dos luceros, que cuando los abro.
Perfecto distingo lo negro del blanco
Y en el alto cielo su fondo estrellado,
Y en las multitudes                                    
 el hombre que yo amo.                            
Gracias a la vida, que me ha dado tanto.
Me ha dado el oído que en todo su ancho
Graba noche y día grillos y canarios
Martillos, turbinas, ladrillos, chubascos
Y la voz tan tierna de mi bien amado.
Gracias a la vida, que me ha dado tanto.
Me ha dado el sonido y el abecedario.
Con él las palabras que pienso y declaro,
“Madre,” “amigo,”hermano,” y luz alumbrando“  
La ruta del alma del que estoy amando.
Gracias a la vida, que me ha dado tanto.
Me ha dado la marcha de mis pies cansados.
Con ellos anduve ciudades y charcos,
Valles y desiertos, montañas y llanos,
Y la casa tuya, tu calle y tu patio.            
Gracias a la vida, que me ha dado tanto.
Me dió el corazón, que agita su marco.
Cuando miro el fruto del cerebro humano,
Cuando miro al bueno tan lejos del malo.
Cuando miro el fondo de tus ojos claros.
Gracias a la vida, que me ha dado tanto.
Me ha dado la risa, me ha dado el llanto.
Así yo distingo dicha de quebranto,
Los dos materiales que forman mi canto,
Y el canto de ustedes que es el mismo canto.
Y el canto de todos que es mi propio canto

-- Violeta Parra

Did Ya Not Know? "When you awake you will remember everything..."

Ole told me, I'm a fool
So I walked on down the road a mile
Went to the house that brings a smile
Sat upon my grandpa's knee
And what do you think he said to me?

When you awake you will remember everything
You will be hangin' on a string from your...
When you believe, you will relieve the only soul
That you were born with to grow old and never know

Ole showed me the fork in the road
You can take to the left or go straight to the right,
Use your days and save your nights
Be careful where you step, and watch what ya eat,
Sleep with a light and you got it beat

When you awake you will remember everything
You will be hangin' on a string from your...
When you believe, you will relieve the only soul
That you were born with to grow old and never know

Ole warned me, it's a mean old world,
The street don't greet ya, yes, it's true
But what am I supposed to do
Read the writing on the wall
I heard it when I was very small

When you awake you will remember everything
You will be hangin' on a string from your...
When you believe, you will relieve the only soul
That you were born with to grow old and never know

Wash my hands in lye water
I got a date with the Captain's daughter
You can go and tell your brother
We sure gonna love one another all night
You may be right and you might be wrong
I ain't gonna worry all day long
Snow's gonna come and the frost gonna bite
My old car froze up last night
Ain't no reason to hang my head
I could wake up in the mornin' dead
And if I thought it would do any good
I'd stand on the rock where Moses stood...

let james take us home...

This land is a lovely green, it reminds me of my own home.
Such children I've seldom seen, even in my own home.
The sky is so bright and clean, just like my home.
Kind people as have ever been, won't you take me back to my own home?

Jump up behind me, my love, jump up behind me.
Old Dan can bear us both, jump up behind me.
We follow this road till we reach the sea, jump up behind me.
We'll catch the tide and set Dan free, jump up behind me.

I've been in this world awhile and I've seen a lot of country.
Many days and many miles, all various and sundry.
I've had my way and I've had my fun and I've had my chance to run free,
burning hot beneath the sun, freezing cold and wintry.

Jump up behind me, my love, jump up behind me.
Old Danny can carry us both, jump up behind me.
We follow this road till we reach the sea, jump up behind me.
We'll catch the tide and set old Dan free, jump up behind me.

I know now, only one thing matters in these day.
One thing, true love, love and love alone, true love.

Came out of a dream last night, thought I was back in my old home.
Mom and Dad were both still alive and the babies not yet born, no.
Felt like a festival and it felt like a Christmas morning,
felt the darkness fall away even as the world was turning on,
I mean even as the world was turning on. La la la la la, la la la la. I say.
Jump up behind me, my love, jump up behind me.
Follow the road to the western sea...

T-Bone Calls It...

They call it stormy Monday, but Tuesday's just as bad
They call it stormy Monday, but Tuesday's just as bad
Wednesday's worse, and Thursday's also sad

Yes the eagle flies on Friday, and Saturday I go out to play
Eagle flies on Friday, and Saturday I go out to play
Sunday I go to church, then I kneel down and pray

Lord have mercy, Lord have mercy on me
Lord have mercy, my heart's in misery
Crazy about my baby, yes, send her back to me

Sunday, October 26, 2014

Ethan Hallmark's Documentary -- His Second Story

You, Sweet Cutie-Pie Readers, get enough of my solemnity and negative tendencies.

For those of you sure of your faith, or at least not resentful of it, here is a real gift, announced by Ethan Hallmark's Mom Rachel on her CaringBridge journal:

Matt and I cannot believe the time is here for Ethan's beautiful documentary to be available for everyone to see. There will be a premiere in our hometown tomorrow (visit the Ethan Film Launch page on Facebook for info). The film will be made available to everyone this Tuesday on the I Am Second site ( Please join us as we pray for Ethan's story to continuously be used for God's glory. Pray that it will encourage many who are suffering through their own trials and afflictions
It's been a month since Ethan died.  I still treasure him as a normal kid, over and beyond his extraordinary manifestations of belief and trust in God.  I love the way he was a big brother, the way he enjoyed his friends, his love of fishing (hypocrite that I am, his other hunting never thrilled me), and, yes, the inspiring way he conducted himself along the way.  I confess to wanting to hear stories of him acting like a frustrated, pissed off kid now and then, but that's not the narrative being offered and perhaps he never was that kid.

Please check out his documentary:

© 2013 L. Ryan

Saturday, October 25, 2014

we have escaped the grand intent

it's obscenely beautiful here today.

please pause and put out peaceful, loving vibes on behalf of my brother, known in these pages, variously, as grader boob, lumpy, and the cantankerous english professor.  sometimes he's grouped with his elder sibling as a "brother-unit," a term never meant to diminish the role but to leave it wide open for fresh meanings.

i don't think he is dying today, or even tomorrow, but i have felt the push and pull of things change this week, felt the unmistakable beginnings of descent.

then there's what he's allowed himself to allow -- falls, brain scans, a fatigue beyond imagining.

mostly, though, there's the fact that he set me a task.  busy work that he knew would thrill me. burn him a couple more CDs, as the first one was such a hit that they listened to it on the drives to the cancer institute, singing along.

the truth will out, though, and it became clear that it is his friend, the driver of the mini cooper into which he folds his very tall frame for the torturous trips, who is really grooving to my musical production.

but i'm easy and also scared, so i will spend the rest of the day rabidly doing my teacher's bidding. he was schooled in good music by the best, and he gifted me with what he knew, and i have tried to retain those lessons, enriched with the accretions of my life.

i don't blame god, or blame anyone, or feel let down by some amiable universal source. there is comfort in our anonymity, in the finite space and energy we occupy, consume, produce.

i hope he lives out the year, having heard him reference christmas plans, but now there is elision in the discourse, and palpable entropy in the hurricane's whorl.

my brother-units are precious to me, but i know my preciosity means nothing, that we mean nothing, and that there is great beauty and comfort in that.

we have escaped the grand intent.

oh, sweet grader boob.
oh, lumpy.

© 2013 L. Ryan

Procustean Science: Re-Gifting IVIG

Part of me doesn't even want to post this, as it is recycled material from the famous or infamous -- I cannot decide, discern -- Andreas Goebel, forever presenting IVIG as a silver bullet for CRPS.  That's okay, I have seen good things come from focused scientists.

But it seems to me, the layperson with a dangerous small bit of knowledge, that repackaging a theory every few years in the pretty wrapping paper of a new context eventually makes the re-gifting exercise less one of diverse generosity and more one of desperately searching for a respectable vehicle.

In his most recent reincarnation of IVIG as cure all, Dr.Goebel blithely tosses on the rubbish heap the notion of trauma/injury/physical insult as an inciting event in CRPS.  There has always been a caveat to that observation -- that many cannot recall an inciting event, that many cases of "spread" (Dear God, please give us a better and more accurate word!) occur without trauma, large or small, and so on.

Still, I'd wager that most of "us"experience onset, instances of "spread," and, according to most reports I've read of people in remission coming out of that remission, after some sort of inciting injury/insult/trauma.  Call me crazy... (I'll give you a few moments.) -- Call me crazy, but trimming a disease profile so it better fits in the box you're wrapping this year... doesn't make me all a-dither about what's under the Christmas tree.

It makes me want to gift you with "Procrustes" as a middle name.  Andreas Procrustes Goebel.

Dr. Goebel presents himself in the following way on various websites that deal with disease and (all) encompassing theories of immunology and auto-immune scenarios

I am a senior lecturer in pain medicine at the University of Liverpool, and an honorary consultant in pain medicine at the Walton Centre NHS Trust, both in Liverpool in the United Kingdom. After receiving my medical and doctoral degrees from the University of Würzburg in Germany, I trained in anaesthesia and pain medicine first in Germany, then at the Oxford School of Anaesthesia in the United Kingdom.  This was followed by further specialized pain training at University College London Hospitals, and interventional training in Notwill, Switzerland.  I completed a 2-year fellowship in post-trauma immunology at Harvard Medical School in Boston. My main professional interest is with the role of the immune system in chronic pain, and immune modulating drug treatments for unexplained chronic pain conditions. I have a particular interest in a condition called ‘Complex Regional Pain Syndrome’ (CRPS).
I am a fellow of the Royal College of Anesthaesthetists, a member of the British and German Pain Societies and the International Association for the Study of Pain, and founding member of the CRPS network UK.

All of my bitchiness about the window dressing aside, Dr. Goebel was kind enough to answer an email inquiring about any IVIG/immunotherapy ("immune modulating drug treatments for UNEXPLAINED chronic pain conditions"/CAPS mine, all mine) research being done in the U.S., as he is centered in the UK:
This is all experimental at the moment. The only US group which I am aware of, who is trying immune treatments relatively systematically, is the Philadelphia group. You might wish to inquire with Dr. Lopez: and inquire. 
I have not inquired, as my experience with the staff at Drexel University's Neurology Department has been abysmal, and that's adding a dose of "sweetness and light" to the assessment.*

Well, time to rein myself in and give you the latest Dr. Andreas Procrustes Goebel's  Bento Box for a treatment that may well have tremendous merit, despite how it may be overblown in its marketing hype. This is much easier to take than past incarnations, being constrained by the format of a clinical trial.

Low-dose intravenous immunoglobulin treatment for complex regional pain syndrome (LIPS): study protocol for a randomized controlled trial

Longstanding complex regional pain syndrome (CRPS) is refractory to treatment with established analgesic drugs in most cases, and for many patients, alternative pain treatment approaches, such as with neuromodulation devices or rehabilitation methods, also do not work. The development of novel, effective treatment technologies is, therefore, important.

There are preliminary data suggesting that low-dose immunoglobulin treatment may significantly reduce pain from longstanding CRPS. 

Methods: LIPS is a multicentre (United Kingdom), double-blind, randomised parallel group, placebo-controlled trial, designed to evaluate the efficacy, safety, and tolerability of intravenous immunoglobulin (IVIg) 0.5 g/kg plus standard treatment, versus matched placebo plus standard treatment in 108 patients with longstanding complex regional pain syndrome. Participants with moderate or severeCRPS of between 1 and 5 years duration will be randomly allocated to receive IVIg 0.5 g/kg (IntratectTM 50 g/l solution for infusion) or matching placebo administered day 1 and day 22 after randomisation, followed by two optional doses of open-label medication on day 43 after randomisation and on day 64 after randomisation.

The primary outcome is the patients'pain intensity in the IVIG group compared with the placebo group, between 6 and 42 days after randomisation. The primary trial objective is to confirm the efficacy and confidently determine the effect size of the IVIG treatment technology in this group of patients.Trial registration: ISRCTN42179756 (Registered 28 June 13).

Author: Andreas Goebel, Nicholas Shenker, Nick Padfield, Karim Shoukrey, Candida McCabe, Mick Serpell, Mark Sanders, Caroline Murphy, Amaka Ejibe, Holly Milligan, Joanna Kelly, Gareth Ambler

Remember Dr. Schwartzman of Drexel University fame?  I was so excited at the thought of being Philly bound, and getting to see one of the world's best in the field of CRPS.  It did not work out, mostly because the rarefied air around experts makes them incapable of understanding the limitations of their own impossible schedules!  That's why they have experienced gate-keepers, usually older women with cigarette-ravaged voices and an attitude.  The gate-keepers get to tell all the patients to whom the expert has offered the moon that the moon is made of cheese. 

© 2013 L. Ryan

Saturday, October 18, 2014

Yoga will help, as will Tai Chi, Qigong. And Twister.

Hello, Beloved Readers, and welcome, those of you new to Marlinspike Hall, ancestral manor home of the Haddock clan, and one of the premier architectural creations of [the] Tête de Hergé.  Within the Tête de Hergé, we are located to the west of the famed Lone Alp.  Locally, we're neighbors to labs and farms dedicated to the smaller cutting edges of animal husbandry -- miniaturists, they are -- and to a Cistercian monastery also, we are neighbors, offering secret shelter to its beleaguered abbot and opportunities for Christian fun and pagan insights to successive classes of postulants, novices, and the occasional weary long-professed.  The Crack Whore has taken up residence hereabouts, as well, bringing a much needed diversity to our slightly stuffy country lanes -- she's quite nice and we hope she'll one day join the, er, um, "Haddock Family Enterprises Addiction Center."


I had hoped for an easy Saturday evening entry, bringing you all up to date on the fascinating goings on -- a belated, some might say, series of disciplined protests and legislative appeals by Marlinspike Hall's genetically indentured Domestic Staff, designed to implement parity of wages and benefits among the various genetically pure (not engineered, please understand, but guarded by careful counseling and occasional forced sterilizations) families and houses.  I've tried several times to explain the Haddock forefathers and foremothers intentions in creating the various lineages of servitude, their happy, happy intent, but always I fall short.

Meant to create harmonious groups of highly specialized happy, happy families, guaranteed work, shelter, and provisions of unusual opulance, what could go wrong?  The Domestic Staff family dedicated for several centuries, for example, to the care of Caravaggios, would never stray from advanced studies of varnishes, dwarves, gilt, and twisted royalties -- until young Rodrigo stumbled upon a stray copy of The Order of Things (the world does have its ways), turned gay, and began an avant-garde fashion internship in Rome dedicated to exotic black leathers and turtlenecks.

Genetic anomalies, evolution, the Hand of God, whatever one invokes as Author of Change, occurred in every family meant to remain pristine in its work, its intent, its happy, happy happiness.  There are rumors of the Haddock penchant for miniatures leading astray some of the less scrupulous Haddocks, more attracted to scientific shortcuts  -- or, opines a growly Captain Archibald, some "disgruntled employee, led astray by outsiders, and... Rodrigo." Note that he never questions what nefarious influences converged upon The Manor when, as a young explorer and navigator, he discovered and exploited the Worm Hole Marina in the Moat surrounding Marlinspike Hall!

Ah, well.  Enough of our Labor Troubles.

Back to the Crack Whore.  She's perfectly made for the Haddock Family Enterprises Addiction Center.  The origins of the Center are humble and tied in to our system of genetically indentured Domestic Staffing.  I wrote it this way, once, when times were financially tough and the Captain had been inexplicably missing for longer than was usual:

...we scrape the underpinnings of the more modern furniture, mostly reproductions, in The Manor's public vending areas and grateful that the miniature families on the domestic staff willingly sift the silty bottom of the moat for spare change.  We split the haul, fifty-fifty, because square is square. 
You'd be amazed at the number of people who think that throwing things into the moat is an acceptable romantic substitution for tossing pennies into a well or euros in the Trevi fountain.  Of course, given that we sometimes attract a crowd heavily into the religious life, here more for our next door neighbors, The Cistercians, or equally heavy into heroin, hoping to score an inpatient bed at the posh Haddock Family Enterprises Addiction Center, headquartered in our barn -- we don't always come away rich in cast off coinage.  
I didn't want to confuse you with haphazard detail, but most of those who drop by the Haddock homestead are also somehow related to the carnival, and are, in fact, often carnies.  Fred thinks its because we exude some sort of Rabelaisian exuberance, that we are, in short, relentlessly robust.  Fred obviously knows nothing of my time spent weeping and the suggestion that that might be one of the chief occupations of his boudoir would shame him.  
Fred likes the more complicated explanations.  Me?  I'm all about Occam's Razor.  We attract addicted Catholic carnies because the Haddock Corporation opened a detox/rehab and decided to headquarter it in our barn, next to its tantalizing rope structures (connecting to the Manor proper via the Computer Turret), which fairly sings to those with gymnastic training, which is most everyone.  Oh, right, and we are smack dab next to Abbot Truffatore's Internet Office Supply Center, cleverly disguised as a rather ancient monastery. 
Ah, well.  Let's just say that our former silly Saturday night pot luck neighborhood suppers have become polarized affairs, whole long tables divided by potato salad recipes and biotechnology ideologies.

Within it all, Fred, Bianca Castafiore -- the Milanese Nightingale -- and her accumulation of friends and paramours, lately a troubling va-et-vient between Sven Feingold, Keeper of the Maze, and his son, something of a Rodrigo, Cabana Boy... Well, anyway, within our slightly fictional environs, we thrive, we fail, and we survive, happy, happy, happily enough.

I, the Retired Educator, the Prof-de-Rien, am required by Universal Laws (which I am, you may be sure, constantly appealing) to dip my fugly purple toes into your reality on an almost daily basis, am primarily sad.

Which is a vast improvement!  Remember the many stories of being sad and in pain?  Sad and disappointed?  Sad and confused?  Sad and desperate?  Sad and half-way liking it, as it requires so little of one's self, if you allow it an "and," a depressing companion of some sort.

But leave sadness unpaired, and pure -- and it's not a bad thing.  Pain, disappointment, confusion, desperation, self-pity: these are the demons with which you don't want to live or die.  Each a separate, winnable fight, and sometimes not so much a battle as a shrugging-off.

I am sad at the suffering of those I love and know;  I am sad at the suffering of those I love and will never know.  I am less and less sad for myself, suffering through each day, thoughts and dreams more and more taken over, like some rippling silver pensieve for the excesses of those I love, by what is happening to dear Lumpy, the Mother-Units, the dear brother of the West, tumbling, tumbling all.

The tumblers and the tumbling include many others, the past beloveds, which we all know last forever, and the tumblers and the tumbling are often as hilarious and sweet as they are fast and tragic.
It's as much a prolonged fit of the giggles in a pew on a long ago Sunday as it is an image of concentric infoldings of nausea and confused effort.

But I try now, in the public eye, to smile, and to ask my serious things by wrapping them in filmy rustling tissue papers and raffia.

I do miss the organic pig farmer from across the way.  She wasn't a Crack Whore, quite, but maybe that to which a Crack Whore might aspire.  She first made her way into the blog, officially, at least, in January 2013, about which we reminisced in January of this year:

Do you remember our neighbor, the Organic Pig Farmer?  With pure poetry, I introduced her here exactly one year ago: 
In other local soap opera news, we are never at a dramatic loss these days thanks to the vocal stylings of CrackHead Lady Across The Way, who turns out to be a very well-known organic pig farmer.  She steals the limelight with soliloquies to her Ugg boots and curious crowds gather -- mid-morning and again at midnight -- to watch her use the muddy pits of the hog lot as an exfoliating (yet wonderfully moisturizing) body wash. 
Even then, something told me that trouble was afoot, and I swear I hold no prejudices against muddy crackhead exhibitionists.  Plus, bacon is "the" ingredient in haute cuisine, and we were thrilled to have such luscious pigs so close by, flavor on cloven hooves.  On her clear days, we were working with her and our resident geneticists on creating a tasty pig that ruminated -- which we figured would have burst open a world of consumers hungry for bacon, even if they wanted to be snooty and call it pancetta, which is hog, excuse me, pork belly cured with salt and peppered with peppercorns, fennel, nutmeg, and what have you. In Italy. 
But making a ruminant of a single-stomached pig was proving more than our animal husbandry and genetic experts were able to accomplish within a single season, and capturing the attention of the crack whore organic pig farmer, genius though she was, was nigh unto impossible.  The Jewish people shall not know -- with hearts' free of oppressive judgment -- bacon in 2013.  Don't believe the fast talker who tells you its easy to increase salivation, thereby increasing the microflora necessary to the decomposition of cud, or that making a pig's teeth incessantly grow to accomodate all that chewing, is easy.  That person is a ruminatory fool.  In any event, we'll miss her, and the promise of bacon. 
[....] She was evicted about two months ago. 

Well, I suppose SOMETHING in this blog post needed writing.  What exactly, I cannot say.  Perhaps I will throw myself on your mercy, Dear Readers, new and old, to discern what it might be.  Beware science?  Beware genetics and its environments?  Love your neighbor?  Be your brothers' keeper, but accept and respect their keeping rules.

Yoga will help, as will Tai Chi, Qigong. And Twister.

SUN LU TANG (Sun Tai Chi Chuan)
Uploaded on Jan 30, 2008

Martial Arts Therapy

© 2013 L. Ryan

Thursday, October 16, 2014

Nighty-night, all.

Between both hands, I've an aggregate of 4.5 usable fingers.  Three on the left, and the remainder of 1.5 on the right.

The 4.5 that are vacationing are trying to contract, are cold, a little bit painful, and extremely sensitive to contact with any thing or even moving air.  Just like in those golden days of yore when CRPS was present but unknown to me by any acronym.

Yesterday was frustrating, in that I felt compelled to clean our small portion of The Manor, which entailed much dropping of things.  However, I also discovered that vacuuming covers a multitude of sins, such as screaming, nonsensical cursing, and loud imaginary conversations with the Malignant Authors of My Condition.  It was also a great success in that I did not wrap the vacuum cord around any of my wheelchair wheels, a very embarrassing event on those exceedingly rare occasions when it does happen.

I'm going to bed as soon as this bit of nothing gets posted -- because tomorrow is Thursday!

We have to be at the Lone Alp Medical Chalet at 9 AM in order to see a neurologist.  Not a problem for most, it's pure dread at Marlinspike Hall, as Fred and I have been pulling Night Shifts.  We trot off to sleep when most of the Domestic Staff and Wandering Cistercians are just hitting their stride. Even the Crack Whore maintains a rigid adherence to office hours proscribed by circadian rhythm.

After enduring the condescension of the neurologist who cooed at me, telephonically, "Ms. Profderien, I want you to know that I believe your pain is real," we head back to the Western Wildlands of Tête de Hergé and meet up with the Occupational Therapist.

As Brother Lumpy's famous bedtime stories used to go -- "Meanwhile, back at the ranch..." -- Brother Lumpy will have his final radiation treatment tomorrow.  Maybe not final, as in "ever," but final as in "for this portion of the season." It has had a beneficial effect in that his pain level in the shoulder region, at least, is down to a "4." However, he's had horrible problems with nausea and vomiting, so the prayer there is that the end of radiation brings a lighter gastrointestinal load and even more pain relief.

And Thursday sees StepMom Boom-Boom Baba will be facing her worst fear and be transferred to a lovely Assisted Living Facility in the same town as her daughter and her fearless partner.  The dream of living out her life at the ocean-side cottage is over -- but she's blessed to have the resources to be well cared for and live near her daughter.  Boom-Boom Baba will remember that her daughter loves her to pieces in a few days.  In the meantime, should you live in the coastal Carolina region and are approached by a fiery-eyed 85 pound former ballerina in her mid-80s?  Run for your life, because she is very angry.

As for the biological true bloods of the family, meaning those birds of a feather flocked in the more mountainous regions, I guess their Thursday will be of the run-of-the-mill sort.  My half-sister will fleece someone of either money or sympathy -- if it's a great Thursday, maybe both!  Her son, my quarter-nephew (wish I'd paid more attention in Dr. B's anthropology classes on kinship charts), will battle his illnesses and combat his life challenges with aplomb and panache and other fancy words for Kid Courage.  My biological Mom will travel in and out of dementia, visiting with her deceased husband while cleverly hiding from him her recent marriage to Bill O'Reilly.  She so sweetly and unselfconsciously told me she loved me last week that I was quite taken with the idea and have rolled her words around my brain so much that I almost believe this unanchored assertion.

I've an aunt and uncle there, too, who seem lovely -- delightful, even, and I hope their Thursday is uneventful, peaceful.  Oh, and there's my buddy John, and his lovely Mom, my sister-in-law. Which posits a half-brother, but I am not sure he really exists.

Then there's that guy out west, whom everyone swears they love.  Myself, included.  Smooches galore to ya, and oh, how I wish you were here. You have a beautiful day, SweetCheeks!

Nighty-night, all.

© 2013 L. Ryan

Thursday, October 9, 2014

It's important, so do it.

Quick, note the day and time:  I'm having a productive day.  Two loads of laundry, the weekly refilling of the med box, several psychological evaluations of the Feline Triumvirate, orientation of several new Marlinspike Hall Manor Gift Shoppe volunteers, coffee -- perfectly strong and I did not pour boiling water in my lap in its making!

Sure, there were errors, flukes, lots of pills on the floor, and the Gift Shoppe may be in retail peril, but there is an abundance of clean covers, ranging from light and kind to tender skin to heavy and cold repellent. None of the cats aberrant behaviors have improved but we have lowered alert levels to DefCon 2, hoping that we can continue to deescalate tensions and avoid Buddy killing Marmy, or Marmy shifting from clawing defense mode to slashing aggression.  Most of all, we would like Dobby to retain some fur, as when the little guy is stressed, he releases all of his hairy hairs, usually on my clean clothes.  And, if we put all our desires out there, well, we'd like him to shut up, as well. He's the Town Crier of our world and, honest to God, it sounds like a nonstop tirade of a lisped "Oyez, Oyez, Oyez!"

Ahem.  Yes, I'm having a day!

My right foot is probably as small as it's ever been in the past 12 years. If you ignore its purple and frigid state, well, hell, it almost looks like a doggone foot!

The claw phenomenon is, indeed, spreading to two fingers on my left hand, but rather than cry over that (we now cry for an hour when the lights go out at day's end), I am forcing that hand to do extra duties.  I suppose someone without CRPS would call the doctor.  I have been taught not to, trained better than a seal.  Oh, how to stave off the urge to balance a beach ball on my nose?

I am daring to see another Kaiser Permanente neurologist next Thursday.  Yesterday, if you had dared to ask, I'd have told you it was a hoop to be leaped through, or thrown through (by the neurologist, or Fred, perhaps... maybe even Lumpy, if he could work up the strength).  Today, I've decided to focus on researching these sudden and completely un-freaking-expected changes in my upper extremities.  Research as only I can.  I have awesome research powers, friends, and they, coupled with unerring insight, rarely lose me in a corn field.

Don't know where that came from, that whole "lose me in a corn field" thing, but I like it. So it stays.

So next Thursday, yes, we slough off the history of Kaiser Permanente's abysmal neurology department (though I hear that EAST of the Lone Alp, they have better staffing) and we politely make the focus saving my hand function.  The OT kept concentrating on the pain of it, not hearing my oft-repeated: "I can handle the pain... what I cannot handle is losing the use of my hands."

It's easier to focus on the amorphous and try to score points for ass-kissing empathy, sympathy, compassion rather than brainstorm with me how I am going to toilet myself, wash, and manipulate forks, knives, knobs, buttons, cats, Fred, paperwork, pens, computers, car doors, seat belts, coffee cups, telephones, and pills, pills, pills!

Much better to wheedle: "It must hurt a lot.  Does it hurt a lot?"

Button my shirt, bitch!
Dice the Holy Trinity of onion, bell pepper, and celery.  Or the required base to a magnificent, fragrant stir fry:  ginger, garlic, and several optional thirds -- onion, chilies... none of that to be confused with the saucing options.  Don't get excited, Therapist, about a perceived ease to the saucing, because the saucing involves mixing, and the opening of many tiny bottles, and the outpouring -- precise outpouring -- of fish sauce and sesame oil and the many variants of soy and chili and sweet/sour viscous liquids.
I had trouble washing my face last night and dropped my toothbrush in the toilet.

But that was last night, and the OT was Tuesday, and won't be seen again until a few hours after the neurologist next week!

I've a firm grip on this day, still.

Part of that vise-like hold has been enabled by merely turning off all the phones and watching a few episodes of what I call a soap opera, but Fred insists is a "drama series." Yay for solutions, because they're solutions!

Clearly, giving my brain, such as it is, and these hands, such as they are, access to a keyboard has not been conducive to what pop stars like Dr. Phil might call "self talk." Dr. Phil is a marketing genius and a professional fraud.  I know the difference between what I type and what I actually feel.


Time to finish my chores, turn the phones back on, be an encouragement to Fred and the hulking, skulking cats.  The genetically indentured Domestic Staff Executive Committee has requested a meeting with the Haddock Labor Relations Board, and judging by the steely glint in a few eyes, there are more issues than territorial disputes and genetic engineering snafus on the table. I think, I am guessing, I assume... that they want a bump in salary, an expansion of benefits, and some minimization of their essential serfdom.

I could be wrong.

Last night, when I turned off the lamp beside this godawful hospital bed, after I threw the stupid washcloth gripped by my right claw all of three feet (after a full wind-up and high kick), before I picked the 90-minute "sleep" music option (which started with dear Simone's "Go to Hell"), I spent an hour crying.  I didn't time it, the hour is a guess.

All I could see was Lumpy's sweet face, his eyes gone deeper than deep seems possible, and dark, much darker than seems fair.  I don't see the two lumps he says are there -- in his skull, one on the left hairline and the other at the base of his jaw.  Granted the jaw is disfigured and I can actually see it, but I like to pretend that I don't, and that his well-trimmed beard just has an inexplicable scruffy area.

To me, he is beautiful, handsome.  And, damn it, other worldly.

Can I convince you, you who are as mortal as he is, that he does not deserve death, that the world needs him, that nothing will ever be the same when he dies?  That a whole generation of mediocre writers will not have the touchstone of his classroom f-bombs and hilarious illustrations of rhetorical fallacies by the citation of the authority of South Park and The Simpsons?  They won't learn the crucial life lesson, the crucible of working life, that he models when explaining, over and over: "I grade what you put in front of me."

You haven't seen him mime gold medal winning Olympic ski jumpers.  He's a little over 6' 4" and could launch himself off the icy ramp, and extend his upper body, straight as a rail, over his legs until his slightly Roman nose seemed (and therefore, was) mere inches from his skis.

A Normal Hill specialist, his split leg landings, with arms making delicate ballast adjustments, would be the envy of any world class orchestral conductor.  The arms part, not the leg part. Unless we're talking some sort of weirdly energetic orchestra conductor, or perhaps an afflicted one, suffering from neurological tics, Parkinson's, or Tourette Syndrome aggravated by the brass section, probably the tenor trombones.

So tears turned into giggles in the dark.  And each cat came by, politely following their peculiar rules of Buddy first, Marmy second, and -- everpresent, very somber -- little Dobby.  Dobby never leaves me when I cry, though he may position himself so as to be unseen.  On the top edge of the pillow, perched on the corner of the bedside table, alertly upright between my feet.  He didn't learn the "don't stare" lesson in kittenhood, so he stares, and mewls softly.

Like I said, the hour was just a guess.  I also visited with some other beloveds, before relaxing my mind into the recurring memory of me, seated on Lumpy's shoulders as he walked, slowly, from the shallow end of our swimming pool to the deep end.  Yes, that put him under water for about a third of the journey, but never did he hasten the pace, break the rhythm.  Sometimes the tipsy Happy Hour boozers at poolside noticed, sometimes they did not, but it was something to behold.

Well, I just promised Fred, The Castafiore, Sven and his son, Cabana Boy, a healthy dinner of roasted organic vegetables and some sort of fish.

A chance to wield knives and cavort with a very hot oven!  Now, THAT is what I call Occupational Therapy. No co-pay and a delicious pay off at the task's end.

Readers?  Love the ones you're with, and find ways to transmit, send, convey, and give away the love you have for those not within your wily grasp.  It's important, so do it.

© 2013 L. Ryan

Wednesday, October 8, 2014

The Me They're Expecting

More CRPS hilarity.

I had my "evaluate and treat" first appointment with outpatient Occupational Therapy yesterday. Why?

Darling Readers, you really must follow along.  This blog is nothing if not one long complaint, studded with humorous illustrative anecdotes, spiced and spruced by the esoteric contributions of life in Marlinspike Hall, ancestral home of the Haddock family, and all situated in the Tête de Hergé (primarily the region west of the Lone Alp).

I've been dumped into the outpatient therapy division of Kaiser Permanente's HMO because about a week before my foot and leg decided to develop cellulitis, I woke one morning to find my right hand had turned into a claw.

Not to bore the More Dedicated Readers, here's the situation, upper-body-wise.  My left hand is functional but weak.  Mostly it is a great hand, friendly, compliant. However, the left arm ascends into sartrean nothingness, as I lack a shoulder joint on that side.  This limits the range of motion, and definitely any comfortable range of motion, in the arm, and the reach of the hand. Try washing the right side of your body with a left hand that won't reach your right arm.  It's hilarious.  It can function well within the confines of its reach, and can and does go beyond, usually incurring plenty of pain as a result, but immense satisfaction should my desired action succeed.

What comes to mind is the most recent valiant performance of that left side -- tossing what turned out to be a horribly excessive amount of kosher salt into a delicate one-pot wonder.

Ah, I stray.

The right shoulder is a prosthetic but only minimally painful, due to the ministrations of the most wonderful orthopedic surgeon on Earth.  I tend to forget the elbow reconstruction of some six or seven years ago -- also an excellent job, though the hardware is beginning to shift.

Shifting hardware.  Now that's a sensation.

I've had radial and ulnar palsies in that right hand in the past, and each time they just went away, like in a fairy tale.

The current claw has only gotten worse.

And was of minimal concern to every doctor, nurse, and housekeeping staffer I encountered, until a very sweet and knowledgeable OT made me a very personal splint while in the hospital.  She pegged it as CRPS, completely neurological, and one of those things that "just happens" with CRPS.

You go to bed with a functional hand and wake with a claw.

So the only advice was "wear the splint 2 hours on, 2 hours off, and sleep with a rolled up washcloth in the vise grip of your lobster-like appendage." Oh, and go see an outpatient OT.

The news yesterday was the same.

After I mentioned that my goal was a return to normal function, and to not hear that nasty phrase: "This is your new normal."

Five minutes into the evaluation, my goals were reiterated by the therapist, in spades, leading with: "It looks like this is your new normal.  Our goal is to keep it from getting worse..."

It went on and on.  She knew her stuff but was into reinventing the wheel, which would be fine, were that of benefit to me.  Lots of manipulation of both hands via various tests.

With the result that my pinky and ring finger on the LEFT hand are now curling, curling inward and responding with snarling and snarky pain when I insist that they function correctly.

Yesterday was Lumpy's birthday and so one call, made while he was out, consisted of me singing the requisite tune to his answering machine (yes, an answering machine), while the second call consisted of him pumping me for info about me.  The little I got from my dear brother was that he barely made it through Monday's classes, that the radiation has done nothing for his pain, and that he ended up buying the medication that his oncologist, pharmacist, nurses, and insurance helpmates could not manage to have correctly approved, filled, and paid for in over a month.

We shared a moment of tired awe.

He's brilliantly brave, struggling to make his voice vibrant long enough to get through the birthday calls.  No mention of my gift, so that was a bust.  I suck at gift-giving, so there's no harm, no foul.  I just wish that this year, of all years, I might have gotten it right.

I don't think I can lose him.

Totally different sort of despair than losing hands, losing a precious friend, mentor, sibling. He still needs to teach me how to snap my fingers correctly, and how to spit.  I want to play one more game of hide-and-seek, where I hide for hours, and emerge to find that he left for baseball practice hours ago. Malted milk balls galore, water polo for hours, musicology 101, and half-court tennis matches. Agreement that there will always be a need and a coziness in literary history, no matter the lit crit trends.

Figuring the day had not slashed at me quite enough, I made other calls -- the call to Lumpy having been desired, just unexpectedly... hard.  I checked in with the Sister-Unit, who was, of course, in a bookstore.  The conversation acquired that whispering-in-a-library quality and bored her, apparently, as I got a sudden "gotta go, hang in there, and stay tuned!"

It could be that she was busy.  Maybe she found an interesting book, or met up with a beloved fellow bookworm. Her birthday is day after tomorrow.

She and Lumpy are step-siblings, born three days apart.  My brother was born in London, my stepsister in North Carolina.  Occasionally, my stepmom and those two would mess with school registrars' minds.

"Twins?" they would hesitantly suggest.

Stepmom would lay out the geographies of their births, as her son and daughter, clearly fraternal as heck if twins, stood looking twinly.  Then she'd deliver the coup de grâce:

"Longest three days of my life."

Anyway.  Sister-Unit relayed that stepmom had fallen, but was okay, and that her momentous day -- a move into Assisted Living -- was penciled in for next Thursday. Stepmom, all 85 pounds of her, has turned into a striking viper at the mention of it.  The gift of short term memory loss at least shortens the period of hissing and tongue-flicking, but no one envies Sister-Unit and her Studly Partner their task next week.

It is sad, but the heart hardens over what must be.
Or mine has.
What a terrible admission.

Lastly, I called the BioMom Unit. Everything in me wanted to scream at her that her son was being laid low by vicious cancer and that I resented being born, but instead we talked, at length and with considerable comedy, about how her dead husband is cheating on her -- but only with pregnant women.  He was an Ob/Gyn. She was a hoot.

Usually, I try to gently reorient her.

Not yesterday.  Within her concocted world, she made perfect sense.  So I reminded her how much her husband loved her, and she rested easily in that.

I cannot slough off more work on Fred, with the feeble excuse of having no hands.  This cannot be my "new normal."

I've been thinking of dear Lumpy all day -- office hours, two classes, radiation, and an infusion of chemotherapy.

Convinced that my new normal reeks of my continued uselessness.

Time for the splint!  Time to check on The Fredster. Time to extract the "poor me" from other sentient beings' beings. If they ever do want or need me, this is not the me they're expecting.

as it was in the beginning... now the thumb is a quivering
quibbling digit.  all praise the mighty index finger!

© 2013 L. Ryan

Leave it in odd places

Print it.

Gift it or leave it in odd places:  train, bus, and airport terminals; tucked inside holiday greeting cards; between cans of diced tomato at your favorite grocery; mixed in with deposit slips at the brick-and-mortar bank; sell it as a raffle ticket; slip past the Secret Service and place it in the center of the presidential podium.

Give it to nurses, patient care technicians, doctors, dentists, physician assistants, occupational and physical therapists, medical office managers, receptionists (both friendly and reptilian), and insurance reps.

I laminated a few for our traffic-stopping crack whore to hand out as Public Service Announcements. She's nothing if not civic minded.

[Recently, Fred thought she'd been injured, as she was doing a crotch-clutch as if she were in pain. She was still resolutely completing her complex routine of concentric circles, but with only one hand a-wavin' in the air. Things were looking lopsided.

Sweet Fred: "Can I call 911 for you? Do you need help?"

Young woman's vibrant response:  "No, s'okay. I'm a crack whore."

Fred, kinda speechless: "Uh. Okay! Give a holler if you change your mind."

Me, to Fred:  "'Give a holler if you change your mind...' -- Really? Oy." ]

Anyway.  This CRPS IASP blurb of a short-cut may soon be out of date, but it's the best thing I've seen in a long while, precise enough to pierce the filmy, bored eyes of the code-obsessed, mentally billing Kaiser Permanente hospitalist who is pretending to listen to your medical history.

Which reminds me.

I've been in and out of so many medical facilities since mid-August that the experiences blur. But there are moments that won't go away.  Like the encounter with an Emergency Department Physician's Assistant at Northside Hospital.

Their goal and need is to get patients to focus on what, specifically, brought them to the ER/ED that day.  

I was there because the infection in my foot and leg was out of control.  Easy enough.

But incredibly complicated, because -- while *I* am focused, the health care professional is usually a CRPS virgin -- the PA is sidetracked by the bruising, welts, swelling, discoloration, and temperature of my arms and legs.  They actually think this is something that maybe I overlooked, forgot to mention, or, being as dumb as a rock, have confused with this ridiculous story about cellulitis and infection.

She grabs my legs, pokes my feet, engenders my wrath and raises my pain level for hours.  No longer listening to me, she says aloud, "This is not normal... The foot is cold, there's no infection... Why is this so painful?" All the while, I am repeating:

"I have CRPS in all four limbs.  You may know it as RSD, which is outdated and scientifically flawed, both as a name and a concept, but hey -- who cares, so long as you stop rubbing your gloved hands up and down my incredibly goddamned painful limbs, you stupid cow." 

She pretends to listen, says "uh-huh, uh-huh," and then says, "What's wrong with your arms, what is wrong with your right hand?" I give an alternate version of the CRPS speech.

"Uh-huh.  Uh-huh.  CRPS, in all limbs.  Got it." 

While continuing to poke and press into swollen tissues and asking how and why they are so discolored and how long has the blood supply to my legs been compromised?  ("Because that's the nature of CRPS and the blood flow is actually very good.")


I'm plastered to the ceiling, my legs and arms in spasm after this cow-handling.  Fred must have sensed impending verbal warfare and shoots me a look, a don't-do-it look.

As she is washing her hands, her back to us, I reiterate that distinctions must be made between the reason I am there -- cellulitis and needed intravenous antibuotics -- and the underlying constant of CRPS, which can confuse the picture.  I confess that the pain has me beat and request pain meds. This is a rarity, for me to ask for pain meds in any ER/ED. But it was... rough, and now intolerable, thanks to another vicious HMO exam.

Out it came.

"Do you know what CRPS is?" I asked, in an aggressive, angry tone -- meaning quietly, slowly.


NOPE.  The casual arrogance of a NOPE?  Really?  I mean, really?

"Do you want to tell me what it is?" 

"Nope.  Go look it up, educate yourself.  Which is what you should have done before you set foot in here.  The exam you just did?  It was pointless, since you were uninformed about the underlying chronic condition before you.  Had you known what CRPS is, your exam might have yielded useful information.  As it is, you've succeeded in sending me into a pain spiral while you get to waltz out of this cubicle and plug into some outdated summary article about RSD..." 

"I was not TRYING to hurt you, Madame Retired Educator. We are here to HELP you.  There is no need to be rude to me." 

Then I got it from Fred.

But I ask you -- when is enough, enough?  How many times, when I am sick, even very sick, do I have to face these lying medicos who feign knowledge and who do HURT me?  I so love the person who says, "I'm not familiar with CRPS, though I've heard of RSD. What do I need to know?" It's a sign of intelligence, and defuses my anxiety on the spot.  There was one drop dead gorgeous ER physician (and I cannot recall what he looked like, as his looks were not what was so darned good-looking) who said something close to that, while purposefully crossing his arms across his chest in the universal stance that reassures: "I am not going to touch you without your permission,"

Fred, learning that I was to be admitted, departed for Marlinspike Hall and Manor duties that never end.  He was still emitting that parental I'm-so-disappointed-in-you vibe, so his departure was fine with me.

When next I saw the Northside Hospital ER/ED PA, she announced that she was arranging my fast track admission "upstairs," and that they would start the antibiotics before I even left her department.

I apologized for having been rude.

She said, "Well, I am glad you apologized.  I know that you don't feel well and we don't always behave our best when we're hurting." 

I could have knocked her into next week.

What I needed was our beloved crack whore, whirling and twirling, one hand holding her crotch, the other offering the obsequious PA a laminated version of the IASP diagnostic criteria for CRPS.

So here you go... Print it out... Spread the word... Do good, not evil... and never, ever be "rude." 

And yes, I meant my apology but also adhere to the wisdom of Mary Chapin Carpenter:
"Forgiveness doesn't come with a debt." 

For the best understanding, I'd love to hand over the document below to the medico about to commit neurological rape, but I can attest to stunted attention spans.  No one reimburses for reading time.
But perhaps you could print out a few copies on a nice sandpaper... and leave them there where 
toilet tissue may run into short supply,