Dear Crisis Intervention of Houston (Carbon Copy to the White House)

Source: JEZEBEL

Crisis Intervention of Houston is proud to be part of a new effort to help save lives through a partnership with the National Suicide Prevention Line Network (NSPL) and the White House.

In January 2009, the Obama Administration initiated a process for the public to voice concerns directly to the White House via email. This resulted in an outpouring of emails from thousands of individuals whose concerns ranged from financial and food assistance, to medical insurance. Some of the individuals who contacted the White House expressed thoughts or threats of suicide. 

In response to the influx of calls, the White House asked NSPL to provide follow-up calls to individuals identified as potentially suicidal. As the Region 6 Center for the National Suicide Prevention Line, Crisis Intervention of Houston is providing follow- up telephone calls, emails or mail to potentially suicidal individuals identified to be living in Houston or the surrounding area. 

Crisis Intervention of Houston is assisting in this effort by contacting these individuals and conducting a suicide risk assessment which requires some detective work and lots of patience. CIH's work is part of a progress report made by NSPL to the White House every week. 

We are proud to partner with NSPL and the White House as we continue to reach out to people in crisis and provide the kind of support that saves lives.

This may be the most humiliating post I've ever had to write.  But I do have to write it.  It is one of those truth-telling days.  The sun is out.  I conquered my phone phobia and called my Mom.  (Yes, I know, it is more of a Mom-Calling Phobia than an actual fear of the technology.)

I do need to say, in defense of any jerkiness in writing, or thought, that my left leg, hip, and lower back, are all conniving against the composition of this post.  There is screaming -- rhythmic, short bursts, nothing arduously continual -- involved, as the Spaz Attacks laugh in the face of 40 mg of Baclofen, 8 mg of Tizanidine, and a Kroger Diet Ginger Ale.

I am a true fan of President Obama, and of many of his policies.  We could do a rundown, but if you're a Dear and Dedicated Reader of this obscure and odd blog, that would be the height of boredom.

Yes, I am trying to avoid what needs saying.

I write the President, and with excessive frequency.  Possibly with excessive openness, perhaps with insufficient deference.  Weirdo that I am, I consider him a friend, especially in the middle of the night when the pain is winning and all of Marlinspike Hall snores in blissful slumber, from the few country mice in our myriad cellars and crags whistling midst dreams of artisinal cheddar wheels, to the Holy Abbot Truffatore, hiding from the heavy duties of his office at the Cistercian monastery, our closest neighbor, snoring with blessed abandon.  If I listen hard enough, sometimes even the muffled snuffling of the Crack Whore napping alongside the whispering waters of the moat reach my hyper-vigilant ears.

What better time to write the President of the United States?

Maybe it was the letter where I chastised the university system that studiously underemploys its many "adjunct," "visiting," and "assistant/associate" professors, denying them not just the oft-discussed tenure but the rarely referred to basic benefits of employment -- a living wage, access to health care, that kind of piddly stuff.

Yes, I bet it was THAT letter that did it, that put me on The List.  I probably said something like: I have deferred my plans for suicide because my brother Lumpy, the Professor, was diagnosed with an evil cancer, already metastasized, the bastard, dastardly enemy!  He had not had enough funds to purchase insurance prior to President Obama and Friends' pushing through the Affordable Care Act and setting up the MarketPlace.  So, by the time he had affordable health care... no thanks to the university for whom he'd labored like a slave for over 25 years... his first doctor's visit came with the ominous pronouncements of "tumors, masses, MRIs, referrals to oncologists." Just months before, he'd made his first ever visit to an ER, only to be treated as a drug-seeker, and told he probably had a rotator cuff injury.  Right.  Make that Metastatic Renal Cell Carcinoma.

So, it was probably that letter that set off the "suicide" risk alarm button in the White House Reading Room, where every letter to the President is closely perused.

Though it might have been any of the letters that tried to explain the frustrations of a "rare" or "orphaned" disease like CRPS, and the idiocy those of us with it are forced to confront in an often futile effort to get help.  I might have used the old chesnut of CRPS being known as "The Suicide Disease."

In any event, the dread telephone rang this morning, after the second night of Screaming Ninnies and ineffective 100 mcg Fentanyl patches, Percocets, Baclofen, and ibuprofen.  The ultimate proof of failure, and pain's triumph?  It bust down the gates of music -- It ran through Ben Harper, The Decembrists, Bonnie Raitt, Eric Clapton, The Band, Townes Van Zandt, Frank Sinatra, various timeless chorales, even knocking Nina Simone off her intimate stage.  Even the spunky Brett Dennen had his red locks blowing in the wake of the pain's wind. Damien Rice was left standing, but barely -- more of a stagger than a stalwart stance.

So I answered a call from a caller I did not recognize.

It was the Crisis Intervention Of Houston (Inc.) calling "on behalf of the White House."

No coffee in my system, but three cats attached to head, right hip, and square upon my chest, I thought, "Well, of course.  Who else would be calling this fine Sunday morning but some suicide prevention hotline on behalf of my friends in the Barack Obama Administration?"

The very nice person on the other end of the connection wanted to make sure I "had access to all the resources" I need.  Beyond a loaded gun, I assured her resources were to be had aplenty here in Tête de Hergé.

No, I managed to set aside morbid humor and reality just long enough to be completely mortified that my finely tuned letters to the President had set in motion, not the rectification of health care and employment injustices impacting human life, itself, but, rather, a concern that I really meant to perform DIY amputations after consuming scads of methadone washed down with the best of a single malt scotch.

So, a sincere statement of thanks to that wonderful woman who made that cold call, and appreciation to the Obama Letter Reader who put me on the Suicide Watch List.

Suicide is part of the daily routine when you live with this much unrelieved pain and disability for this long, and the only assurance doctors can supply is that the future will be the same, or worse. When you don't sleep nearly enough, especially in consecutive minutes.  When "hope" is a construct, and you spend way too much time comforting those you'd hoped might comfort you.  When your financial resources are destroyed, and your career made a laughing stock of a memory.  When you cannot even hold someone else's hand because it feels like an attack with Sand Paper Set Ablaze.  When you cannot talk about any of these things due to the fatigue of those few still around, trying to help.

And when the person upon whom you have dumped the most, with whom you have shared every detail of the journey turns out to be so damned ill, and so ill-treated?  To someone as weak as I am, lacking the stern moral fiber of my ancestors, suicide seems quite the viable option, and so is considered, daily.

But thank you, Crisis Intervention of Houston, and White House staffers, for caring enough to put me on The List.

Imagine the impact if you bypassed those such as me and called some of the suicidal veterans returned from multiple deployments?  Last I checked, 22 veterans a day kill themselves.  They don't endlessly whine, they don't "blog" it, but maybe they write their Commander-in-Chief now and then.

Like I said, this is the most humiliating post ever, and yet, in the intent of all parties is a desire to "do good," and to stop, or slow, the bad.

Dear President Obama...

© 2015 L. Ryan

For Baba: Made New

i am brimming with new posts, some very funny, some of scien-tific/istic ilk, some so personal as to succeed as universal.  more than a few are essays that would make montaigne sniff a dusty dead man's egotistical sniff.  so long as he does not sneeze, we're okay.

the post below was originally published on 3 december 2013.

i did not know, on 3 december 2013, that my brother grader boob, now better known as "lumpy," was very ill with cancer.  he had only the soupçon of the beginning of a barely nascent suspicion. he was then suddenly a very grumpy lumpy grader boob, and could not seem to get his bearings, seemed perpetually under that pathetic fallacy of the weather.

he pushed me to reconnect with our stepmother.  this man who now will not connect with anyone! he had that frustratingly perfect impulse -- outward.  i did not remember that he was the impetus, that he was the sweating, grunting worker plying the splintering board that leveraged the boulder... that was me (the boulder, if i lost you).

a gift.

i have two brothers, so similar, so different.  they give gifts like maniacal gift givers, crazy-assed coo-coo givers, scented personal shoppers in the virtual world we now share and the vague shadow of a long gone world. we all meet in the lobby in my dreams -- that dream lobby that morphs into a music room of bean bags and comfy mattresses and vinyl, into softball fields, hot sidewalks, the backseats of cars, tiny basketball courts, much like the end of a concrete driveway crowned with a backboard and a hoop.  always, there is music.  gifts.

there are things i remember clearly.  these things may not be true.

i remember the both of them, evil in their older age. i was in [very baggy] diapers.  you know, i have always been remarkably slim in the hips.  anyway, i am crawling, vaguely bothered by the drag factor of these very baggy diapers. i want it clear that they were not messy diapers, just not well fitted to my slim hips. i fear that soon i will renew the experience this unfortunate fitting difficulty, but we're not there yet, oh no, not just yet. yes, right, so... there i am, in ankara, turkey, exercising my cute little tush off.  i presume i am in a dining room because the trajectory of my efforts seem to end under the carved legs of our famous dining table.  the one i inherited and finally destroyed just before fred and i became squatters here at marlinspike hall.  it had, by then, been painted white and the cushions were of a scary yellow plastic -- that was stepmom baba's treatment, to make it match her "breakfast nook" concept.  that table must have seemed an albatross around her thin neck -- highly stylized, obviously "foreign" and not conducive to her admittedly matchy-matchy decorative ways.

oh, that woman could decorate!

ya, so, my two good-for-nothing siblings are egging me on, making great use of that linguistic "come hither" known as intonation ascendante by my later french linguistic professors.

"c'mon, you droopy-drawered excuse for a baby sister, c'mon!" and so they dangled a cup of something in front of my cherubic visage, luring me closer to the little fort made of table legs.

when i finally made it, drooling as only such a diva can drool, the chant became, "c'mon, take a sniff of this!  you're gonna love it!  c'mon, would we lead you astray, hmm?"  reaching the cup, smiling like the innocent baby i was and always would be, i took a dedicated whiff.

it was ammonia.
my first, but hardly last, loss of brain cells.

okay, so there's that in the negative column for those two.  i could add grader boob/lumpy almost taking my head off with a powerful warm-up swing with a solid wood baseball bat... but that was an accident.  so was the time that one of them (no recollection which of 'em did the deed) threw a dart in my arm.  see, there was a wooden fence.  they were on the "inside" -- picture a poor man's courtyard
-- innocently playing darts.  i was on the "outside," oblivious, and made the turn inward, stepping directly in front of the dart board just as a projectile was released.

big whoop -- a tetanus shot. still!  still!

other than that, it's been nothing but gifts, gifts, gifts -- from the both of them.  in return, i've given them terrible gifts, as in, stuff that i think they should want. lumpy/grader boob has also received more than his share of "things that a person very ill with cancer needs." they are, i know, piled high, box upon box, almost reaching heaven, unopened, and possibly tripped over.

i blush to think of the olde english curses that may be heaped upon my head every time lumpy grader boob sees or sidesteps my gift pile. an auditory heap on the head is detectable only to those who attain nirvana. i'm about two-fifths of the way to enlightenment, to having those individual desires and suffering go... away. so for now, he curses into the void, he pisses into the wind.

the gifts left to give may be few, but they're the best, the saddest, the silliest, the happiest, the most meaningless.  there's no suitable box, which is good, as i lack the dexterity to pack.  thank god for teleflora and the saints be praised that godiva chocolate delivers.

there is still music. there will always be music.
and, somehow, harder to explain, animals.
words. rhythms. winds. rivers. oceans.

yeah, so i wanted to make an effort to write something today.  anything.  and seeing this from exactly a year ago, and thinking of baba, the nickname given our stepmother by her baby brother, frankie something-or-other...

...thinking of how this dream of the beach house, and her ending her days there, painted toes dug in the sand, a silly hat keeping off the harmful sun, a book and a drink at hand... or having coffee on a front porch that leads your eye into an infinity of water, of sky...

well, once upon a time, pretty much just as lumpy was having his fears of terrible illness confirmed, baba required emergency surgery. she experienced a mental decline, as old people often do when wrenched from their familiar environments, particularly those that offer infinities of sky, of water. she lost much weight, developed bedsores.  a trial run was made back at the cottage but it was untenable. back she went into that euphemistic hell called "rehab," while her daughter, my stepsister, did the research and the calling, vetting of the scary, sad work of placing your parent in as great a place as you can find and they can afford.

she's a bit of a pushy person, this stepsister, but she will tell you, probably, to kiss her grits if you requested that she cut if the fuck out.  it is, she thinks, the only way to get things done. if a bit of the truth falls by the wayside, if someone else's wussy sensitivities become obstacles instead of whimsical happy hour stories, well, a bass track will start in the background and soon sweet baby james will be screeching something about Well, I'm a steamroller, baby, I'm bound to roll all over you-u-u.

the thing is, she's sweet, too. extremely nice. i'd try to relate to the goings-on of her life but -- jeez, i'm clueless. probably it's punishment for my natural reticence, because hell's bells! if i think something, it's going to be a secret from the entire blessèd world. no way are you going to weasel a thought or scuzzily judgmental opinion out of this tête!

she doesn't trust me. how could she?  she does not know me, nor care to.  do you know what it's like to ask someone several times for their address and not be answered?  that's me:  the bedridden psycho-killer, drooling in droopy diapers, ready to show your zombie-self a little zombie "mercy." and yes, that's me, who doesn't get the message the first two times!  it makes the moment of realization ("oh, this is actually all bullshit!") that much more embarrassing!

until, until, until --  in my effort to force friendship, force relationship, i betrayed lumpy, and hurt, very likely, his polite elder sibling, the unsullied wise one. it involves a letter that NO ONE forced me to write but which fed my desire to control and dictate.

it was about -- bleck! ick!  yuck! -- wills, as in last, as in testaments.
and the stepsister i am trying to make look villainous? she's not. she's careful, and she's smart to be that way. she and i, we will journey on, learning.

i'm sorry, rolling one, o winged pigweed, for sending you a copy of that letter. i cannot say "sorry" to the lumpy one, because there is not enough space there, even for that one word.

the ace i have in the hole? ["ace in the hole": This term comes from the game of stud poker, in which one or more cards are turned face down, or “in the hole,” as bets are placed.] i have the weightless gift of a greeting and good wishes from our elder brother-unit, safely tucked there where i safely tuck things. (hey! what is this? a "tell all"?  i don't THINK so.)  it's a greeting with good wishes and a memory from him to baba.  i've not delivered them yet, dear brother. but the time is now, apparently, because a bunch of well-dressed, colorful, handsome and beautiful strangers holler about "'tis the season" from the blaring idiot box.

i can already tell you that she will be happy, this ancient dancing woman who has almost worked her way back up to a hundred pounds.

we have traversed the seasons and are not where we started.  the orbit is a bit skewed but still an awesome testimony to arcs, gravity, and the-way-of-things. i choose to admire what the universe managed to keep within reach, and to thank it for what i can still see, and everything that i can remember... or imagine remembering.

i want to thank lumpy for taking this picture of our collective beach, from the vantage point of baba's former and forever front yard.  the stepsister-unit would kill me, but i continue to give baba hope that she can get back there.  i use a line that i used on myself when that older, wiser brother-unit, something of a photographer himself, was missing to me -- i have dusted the old line off for dearest baba, made a few verb tense adjustments:

"mom, maybe you'll go home in the spring..." then we talk... about the dangers, about her dog, about her cute hunky man neighbors, about the fears... and then we talk.

to completely ruin the mood, i have to reference the beginning of last year's post.  un-freaking-canny! in all my recent travails -- in case you can't keep track, i'm losing the use of my hands -- i never once remembered fracturing my left hand. not once.  never mentioned it to my new doctors. of course, this time it started in the right hand... oh, never mind!  it's just kinda creepy.

mwa ha ha!

hey, dear readers, especially you dear siblings (and associates -- i know who logs on, for nothing is secret in marlinspike hall) -- thank you for letting me wade far enough into the gentle waves to get my ankles wet.

because -- gasp! -- the days are long gone when lumpy grader boob and i swam far far out, way past the pier, where there was just the sounds of undulating ocean and wind on the water.  we'd float on our backs and play battleship. then just float, saying nothing.  eventually, in big brother fashion, he'd suggest i go back in, that he'd watch to make sure i didn't get eaten by a shark. then i'd sit on the porch with the binoculars, making sure that he made it in, too. he'd stay out there a long time.

be good to one another.

used without permission, this photo was taken by the inimitable grader boob

if you will kindly refer to an earlier post, titled -- with such gentility -- "i flushed the toilet," it will partially explain my latest round of stealing posts from other -- better but still "other" -- sources.  you know that it is never for lack of something to say.

sure, it's usually the same something, but i'm broadening my vocabulary and massaging the play-dough twixt the ears for the malleable fiction of neuroplasticity.  i'm trying.  but when i so famously flushed the toilet, i fractured my left wrist/radius and somehow also developed ulnar nerve palsy. CRPS has a weirdness not often discussed, as one tires of sounding insane, which is its perverse preference for symmetry.  i have developed the same symptoms, minus the palsy, in my right hand, which is completely uninjured.

in some other words, typing is a bitch.  be that as it may, this blog post needs writing.

since my "family," meaning the clan in its traditional form, has begun the unwieldy process of reconstituting its early semantic glory, a sontag metaphor-for of chipped and crackled bits of anachronistic mosaic tile, these full-blood, half-blood, and no-blood relations... are dropping by this blog in decline.

most of you are used to having kin.  i'm out of practice.  let's put it as it is:  i have to consult the dictionary to untie the knots of meaning behind cousin, nephew, niece, and sometimes, even aunt, uncle.  i tend to cling to the memory of loving people, whether it was me they loved, or not, and their anthropological kinship designation fell into the garbage heap of my wayside long ago.

there is an equal and opposite reaction of attraction for and [obliquely] toward the relations who hate me, whom i disturb, a new phenomenon born just within the last few months.  here is a very true truth upon which you can rely:  beware new "friendships" of the familial sort who quickly and with nary a bead of sweat clinging to their upper lips (or eyelids -- since my eye surgeries, my eyelids betray more emotion than your run-of-the-mill rosy cheek, and not by blinking but by their creepy dampness) speak of love, and declare it for you as a lifelong yearning, based on your fledgling, chubby, pigeon-toed stunted five year old self.

do not trust anyone who tosses the love card with the wily acumen of a lifelong gin rummy pro, thanks to many hot, humid, buggy southern summer nights under bare bulbs, cards smartly slapping on real oil table cloths, red checks marred by cigarette burns, the buzz of mosquitoes broken by a smoker's cackle:  "gin!" the good ones, the best, are self-effacing, and languidly caress the discard, take it as their own... and knock. they utter "love" the same way.

yes, so i'm feverish, in severe and unrelenting pain, spasming like a done-for flopping fish, glaring as best a fish can with one eye on a rotting pier, and dealing with keeping home a center for holiday cheer with a broken wrist.  i cooked some overly herbed fish last night.  that's my only clue as to the intrusion of the fish into my tight, linear narrative.

it was an excess of tarragon perfume at fault -- i mixed it with lemon pepper, a pretty strong flavor in itself, and holmes himself wouldn't have deduced its presence, so overdone was the tarragon.

i'm in love with tarragon.

and this one, most recent sample of rosemary.  more perfume.  i like a slight artistic char on my rosemary. it served as counterpoint to wonderfully roasted vegetables -- and those vegetables with sufficient sugar content achieved that perfection of combined char and caramelization.

if i rummaged in the remains of my work ethic, i could eke out clever comparisons about perfumed fish and relatives i cannot recall ever meeting but who have "loved" me since i was but a near microscopic translucent guppy.

okay, for those relatives not in the evil category of easy love, for those who, without forethought, closed our first conversation in over 23 years -- telephonic, of course -- with a natural, casual "love ya," and who began what we decided to designate as "the breaking of the ice" with joyous laughter that cannot be feigned...

for such people, in this instance my step-mother margaret, about whom i thought during every one of the days making up those 23 long years -- when cogent, of course -- i owe more than a little bit of an explanation.

or maybe not.  somehow, it doesn't feel evasive to have picked up the fiendish phone and chatted and laughed for eight minutes without giving a single detail of my life.  we both have followed the other by means both imaginative and wheedling.  well, okay, nothing so very dramatic -- we made discomfiting use of one of my full-blooded brothers, the famed "grader boob."  lately, he's been getting a bit disgruntled serving as middle man, and in a wildly uncivilized move, simultaneously released home phone numbers to all interested parties.  he may have called me a "cowardly girly-girl," and mocked my telephone phobia (it's real!) with a professorial version of "nah-nah nah nah nah": "derr-i-da-da dah dah dah dah."  he should keep well in mind that i serve as his gate-keeper for the nefarious side of our family tree.  these are people with little sense of our cultured culturing of boundaries and who constantly threaten to appear on one's doorstep, unannounced, uninvited.

but in this instance he did well, grader boob.  "pick up the phone, damn it. what are ya, anyway, a freaking emotional misfit"?

well, yes.

margaret said something that made my heart stop, just a quick phrase but that wasn't a throw-away. she hoped i'd come visit her, there at the beach cottage where so much happiness happened, and tragedy, too. it's a touchstone of a place.

i talked over her, i think.  i said the same sentence three times, a pitiful diversion for such a smart old lady who had just extended herself -- the cottage is her sacred place, was the center of her childhood family, a tradition of sand, sun, storm, paperbacks, boiled shrimp, and happy hours.  it is also where she found my father curled up dead on the couch, and into her atlantic ocean did she cast his ashes. and i did not even acknowledge the graciousness of her invitation back into that space.

margaret, i'm basically bedridden, except when i take my breakthrough pain meds and antispasmodics, then i foist myself upon my limited world, and perform with aplomb what now defines me:  my ADLs, my activities of daily living.  basic hygiene, dressing myself, cooking.  i always think of you as i attempt to clean house -- our homes never looked lived in, they were so uncluttered and clean.  your standards became my standards, and when fred looks at me askance as i pry off the knobs to our gas burners so as to soak them clean of non-existent oil splatters and to clean the spotless enamel underneath... i always laugh and say, "but what would my mom say if i didn't do it right?" and to myself i imagine how living at the beach must have both complicated that aesthetic and simplified it, beautifully.

i miss tea and melba toast with you, a wonderful reason to come home from high school. i remember, at the oddest times, the afternoon we went sailing in a thunderstorm.

my standards have fallen.  i am not physically able to do all the things i "ought." it shouldn't plague me, yet it does.

i can walk for very short distances and lately risk falls when i "step out." and i flash on the day in washington, d.c. when you finally explained to my dad that i despised being grabbed by the elbow and told to "step out." i talk to myself -- hey, we all do, to some extent --and sometimes i hear chastisement from my his lips through mine -- "straighten up and fly right," that sort of thing. there are moments of hysteria, too.  i tried to teach fred that "it only costs ten percent more to go first class." fred didn't buy it, and, let's face it, it was one of dad's less successful aphorisms.

i have lupus, which led to something called avascular necrosis [AVN] or osteonecrosis, which led, in turn to adrenal insufficiency (and a few scary instances of adrenal failure).  but what has me beat, mom, is something called CRPS.  a lot of folks still call it RSD.  i'm coming up on my 12th year anniversary with CRPS.  it's made me pretty much unrecognizable and you'd be shocked.  mostly, it's a central nervous system degenerative disease but it shows itself -- when you have it as long and as all over as i do -- by what it does to your arms and legs.  in my case, naturally, it also does a number on my face!  in actuality, despite the skin, blood vessel, and bone damage, the havoc it loosens on the brain in terms of spasticity and neuropathic pain testifies to how monstrous it can be.

the only honest "cure" for AVN is to replace the joints destroyed by the lack of blood supply.  so i'm close to being bionic!  unfortunately, somewhere along that journey, my prosthetic joints picked up bacteria which slowly grew, and being the leftist that you always knew i would be, the little buggers formed communes that secrete a kind of antibiotic-proof material... so i finally declared "uncle" at the end of last year.  it's spreading from one piece of hardware to another, these socialist "biofilm communities."  so that adds to the discomfort of dealing with CRPS, as there are daily fevers and the general nonsense that goes with chronic bone infection -- osteomyelitis.  i ultimately lost my left shoulder, and to be honest?  i'm ready to give up the right one, it hurts that much.

however, mom, i have a great internist who tells me, when i hit the more grating notes of whining about pain:  "this, too, shall pass." i used to curse him under my breath, now i repeat his belief as if it were my guiding light, a mantra.

you've likely had enough.  i know i have.  a few more things, then i'm going to bed.

i don't know that you'd like fred, at first, but he would grow on you.  i've been with him for precisely as long as i have been absent from you.  he's gentle, intelligent, but struggling -- right now with the possibility that his hearing loss is due to an acoutic neuroma.  he's scared.  i need to think of your example, again, and make him my priority.

i'm never going to see you again, i don't think.  won't be for lack of wanting, i can tell you that.  i'm embarrassed and ashamed about so much -- but also secure in who i am, what i became, the life i've lived, getting things right with a gratifying increase in frequency!

you once tried to help me by listing my "accomplishments," and were shocked when i thought you were mocking me.  you were not, of course.  you were trying to build up my sense of worth, my pride.  but i was right, too, because even in that very low moment, i knew that awards, scholarships, and degrees were not important.

but they did allow me to work at what i loved.  everyone always points to dad's mom, to nana, as the source of the "teaching" bug, but let's say that you honed my technique.

when it rained while we vacationed at the cottage, we'd go to what had to be the only pharmacy in town, and get to buy a paperback.  with such nonchalance, you steered a stubborn reader to the fruits of childhood. one year, it was harriet the spy, another, it was jane eyre.  [of course, we still have to discuss the year you took a razor blade to "offensive" passages in one of my christmas wish list books! "too adult," you said,]

my best teaching came when i managed, through sleuthing and careful planning, to allow a struggling student to find the piece of writing, a print of a painting, a translation, a song that would lead them into the "français." they had to find it but i had to learn their need, and supply its want.

it's what you tried to do for me, so faithfully.

thank you. [and good night!  i am going to imagine the sound of the surf...]  stay warm, stay safe.

© 2013 L. Ryan

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

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.

Harrumph.

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

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

As the fog dissipates

I've been putting off blogging, though each day, lately, has proffered plenty of blog-fodder!  My head is not screwed on correctly, my memory is pretty faulty.  The people, animals, things, and activities that normally are my nominal saviors have fallen down on the job.  Or wised up!

Housekeeping:  The brave Ethan Hallmark died a few days ago.  You already know about the effervescent Brayden Martin.  His mom Maranda, brother Mason, grandmother Robin are blessed with the support of many friends, family, and memories.  Maranda's many off-the-cuff phone vids of a giggling Brayden, which, quite frankly, were starting to drive me crazy, now show themselves each as little jewels, shining, shining.  She did a great job raising that child and simply mowed down any circumstance that even hinted of getting in the way.

We were going to give Brayden one of my spare power chairs (that's right! my riches know no end!) and were even trying to make some adjustments and improvements, because he was a little boy, and, well, I am not.

Sven got out the Marlinspike Hall Treasury of Blowtorches and reconfigured the mind-boggling cloverleaf pattern on the underbelly of the chair.  Bianca Castafiore offered free picks of fabrics from her costuming collection that has clothed thousands of operatic divas over the years.  When she saw me with a glue gun and her precious Christian Lacroix courtisan costume (Hey! It was in the pile she said I could use!) -- she manhandled me.  Pins in her mouth, pinking shears, and microsurgical instruments strewn about, she cursed me, though I couldn't quite tell to what I was being condemned, or in what language. I heard some gutturals -- she may have gone Germanic on me.

Finally, spewing pins everywhere, she hollered -- and yes, Milanese operatic divas can and do "holler" -- "Retired Educator, you bilious brain fart! Brayden loves ORANGE and THIS is a wheelchair, hardly conducive to being covered in crinoline and skin-irritating brocades. What is wrong with you?  Go look in the mirror. You have "crétine" tattooed on your forehead..."

A courtisan costume designed by Christian Lacroix for the SF Opera's , "The Capulets and The Montagues,"
at the SF Opera's costume shop on Thursday, Aug. 23, 2012 in San Francisco, Calif.
Photo: Russell Yip, The Chronicle / SF

Well, in the end, it was beautiful and no one would ever notice our judicious use of duct tape.  I tried to ignore Captain Haddock's remark that it looked like a jeepney.

But something we'll cave in and call "circumstances" intervened, and our jeepney-opera inspired reinvention of a power chair ended up with a local woman who "needed me one of those," and we were glad it went to be of use for someone.

Brayden on wheels.  Laughing Brayden. That's mostly what Maranda showed us.  Well, there was courageous Brayden, miserable and steroid-cheeked, but still giving a thumbs-up, and laughing on command.  Such bravery in a kid gets its own reward, and so I am, guiltily, happy for him.

Ethan. I worried about Ethan, not in any specific Ethan-way, but in a general why-do-these-kids-have-to-be-so-god-damned-perfect way. Whenever he was presented in normalcy, and this young man had a lot of rugged, good other young men who visited daily, that's when I connected with Ethan.  As anti-hunting as I am, it was thrilling to see him "bag a buck" a little over a week before he died.

And I have no right to knock the ways in which people survive, and survive in horrid circumstances. My own circumstances lead me to find comfort in beauty, less and less in books, paintings, movies, and the quieter stories of derring-do, more and more in the actual eyes of actual people. Okay, okay, I'm also in awe of people who do the darnedest things.  I'm thinking of the Infectious Disease PA -- one funny and smart Ava Cooper -- who had a burning desire to see the underside of my Accursèd Right Foot.  Now, this could have been accomplished in several ways, most of which would have been painful, as the Accursèd Right Foot has taken on life in its own inimitable, separatist way.

Did I mention PA Cooper's outfit?  No?  Well, she reminded me of me, some mumblemumble years ago as I trekked about Berkeley and walked from UC-B to San Francisco, over the Golden Gate, and into Marin.  In other words, she was cute.  Black leggings and a striped tunic, happy to be alive. I think she had sparkles on her shoes, not sure.

So she lays down on the freaking floor of this exam room in the Infectious Disease Clinic, her left ear on the pristine floor, black hair cascading over the antiseptic tile, and peers at the butt ugly sole of mine foot.

I mean, doggone, woman, I'd be glad to prop this useless appendage on that green plastic chair over there... or you could lay down on top of god-knows-what bacterial Soup of the Day!

But it just confirmed my gut knowledge that ID specialists are unique and special, in other ways beyond their quirky, nerdy science.  Same goes for the guy we call "Sherlock," Dr. Phillip Brachman. The man cracks me up.  He does me the honor of taking whatever I say at its value.  Last time I saw him, I was sobbing, rocking, in misery.  I felt, however, that he needed to know I was listening and capable, even with snot running down my face and badly applied eye makeup smeared in avant garde fashion into a hairline fade.

"I only cry when I spike a fever or feel really rotten but it doesn't mean that I'm not HERE."

Only a good doctor would address that with a slight nod and continue his Sherlockian machinations with computer and pharmacists online and on the phone.  He does not remember the day that I decided he was the cat's meow.  It was way back at the beginning of the Lose-A-Shoulder-To-A-Biofilm-Infection saga.  Maybe 2007 or 2008.  I was in the hospital and for some reason, in isolation (musta been one of those MRSA scares), and had the deep need to exit my bed and get into my wheelchair.

Isolation rooms are often neglected rooms.  Things are brought in that can't then just be taken out, without a hullaballou of cleaning.  So my bed was surrounded by every bit of equipment imaginable, from IVACs to bedside commodes (3 for some reason that I don't even want to know...) and extra bedside tables.  It was a sea of redundant medical schtuff.

I managed to climb over the rails, not pull out any i.v.s or detach monitoring devices, keep the foley catheter intact (though I forgot to nab the drainage bag, still hooked on the bedrail) and shove a path to the wheelchair.  It's *possible* that I was febrile and hallucinating.

Once ensconced in my chair, I surveyed the room and burst into... you guessed it... tears!  There was no where to go, no direction to point my joy stick, that was not blocked by redundant medical schtuff. And look!  My foley bag is over there, and I am over here!

The door to my isolation room pops open, and Dr. Brachman's head pivots about, figuring I must be in there somewhere.

He sees me trapped in the corner, surrounded by beeping machines, poop contraptions, and mobile tables with immovable wheels.  Dr. Brachman (formerly "Infectious Disease Dood") never wore protective gear.  No bright yellow paper suits for that guy, and rarely even any gloves.  :Lots of handwashing, though.

Anyway, even at that point in my experiences -- I was almost medically virginal -- I already knew that doctors don't "do" stuff.  They leave that for "someone." Someone in Internal Medicine. Someone in Radiology. Someone in Ortho, in Pain Management.  In this case, I would expect an even less elucidated "someone," like a lowly nurse, or the even more lowly patient care technician. But Dr. Brachman crowed something like, "Let's get you out of there."

In super hero fashion, he tossed equipment to the left, to the right, out the window, shoved stuff into the bathroom, and soon cleared a path...

So that I could humbly go back to bed.

The story doesn't tell well.  But it does mark the moment when I knew this guy was kind, smart, and funny as hell.

I don't want to lose you in this swirl of time traveling tale-telling.  Fast forward to... September 10, 2014.  I THINK that was the day.  It was referenced above as the weepy, snotty-nosed visit to Dr. B, after lo, these many years.  I saw him, was in unbelievable pain, so unbelievable that I'm not even going to throw adjectives at it.  He wanted several things.  A biopsy.  He actually went and dragged a dermatologist into the room ("She was wandering around the halls.").  He had, with a straight face, assured me that I did not want him wielding a knife or any pointy instruments. The dermatologist laughed at the both of us and did the standard, "I wouldn't touch that with a 10-foot pole" routine, and made dire threats about what would happen if the skin broke or were breached -- "It will never heal."

Pshaw!

Next he wanted to use a new antibiotic, administered intravenously, but only once a week.  It was the new gorillacillen: Dalvance (dalbavancin).  No matter that it wasn't in my insurance carrier's formulary and that getting it to the nearest infusion center would require calling out the National Guard. Oblivious to the fact that while he was an established Super Hero, the rest of the organization was peopled by mere hard-working humans.  "We'll work out the details.  I am trying to make things as easy as possible on you." Be still my heart!

Finally, he wanted an MRI. I tried to squash that idea, knowing how much orthopedic hardware is buried in my corrupt flesh, but he muttered something about "the radiologists will figure something out." This after everyone and their brother (and their sister) had wanted MRIs for the past 5 years but were denied, every time!

And Lo! (the Angel of the Lord), if his nurse didn't come sprinting out to the very carpeted waiting room, where I was gently waking a dangerously tired and grumpy Fred. "Your MRI is this afternoon!"

She handed us the order as well as the address of the place (far, far away), complete with a map. I don't know if I blogged about the rest of the day -- it had the makings of concretizing any loose PTSD symptoms Fred and I had managed to scrape off our souls.  The directions turned out to be to a Dental Urgent Care facility, located in the boondocks of a half-occupied strip mall.  A missed photographic opportunity, for sure, was the look on the ultra-plucked, hyper-blushed "fresh" country face of the 19 year old dental receptionist's face.

Me, red-eyed and sweaty, with a leg that looked like Mt. Vesuvius about to make history:  I'm guessing that you guys don't do MRIs here.

Bug-eyed receptionist:  No, ma'am.

There followed the saga of how phones don't help ya much when your call swirls at 28 mph in the perpetual vortex of "Customer Service Representatives are busy helping other customers.  Please continue to hold. Your call is very important to us.  For faster service, try logging on to KP.org!"

Have I been less than kind lately when speaking of Dear Fred?  Yes, I have, even if only in my very cranky, confused brain.  The man told me, not terribly politely, to "shut up, just shut up," and grabbed the sheath of helpful paperwork out of my right claw.  We were, of course, late now for the bleeping MRI.

Fred managed to do the following:  figure out where the nurse had intended to send us; close his eyes and retrace our meandering path to the strip mall, and (after opening those beautiful eyes again) drove us to a neutral point on the map now in his head.  And then, gasp!  He stopped and asked one of the indigenous  population where "X bleeping road might be." He was given landmarks, the only one which either of us remembered being a "Waffle House."

Yes, of course, we got there.  I forked over a $350 co-pay, and the lady said I was lucky because some poor soul had coded in the MRI suite and "they're still working on him, so they're behind anyway!" Hooray!

Anyway, we got it done, but the rest of the week was difficult due to my leg not appreciating hours on the road, and so on, and such froth.  The new antibiotic was all set up for Friday, then cancelled Friday morning.  I ended up in the ER/ED again, admitted again, and Plan C, D, or E was implemented.  Got a PICC line inserted and was started on Daptomycin.  Home nursing was set up.

Doctor Brachman went on vacation that Thursday, bless his bones.  Several nurses suggested that he might be autistic.  At my protestations, they'd say, "O! You like him.  Well, he's very talented at what he does.  People say he's a genius." Wily, crafty nurses.

Things began to go swimmingly.  The next four days saw slow improvement, and Fred easily fell back into the PICC line routine, and with good humor.  I was able to briefly stop observing my own navel lint, and consider the lives of people I love.  Somewhere in the middle of all that, Brayden died, Ethan was suddenly on hospice, Kate McRae suffered her third brain cancer relapse, my Lumpy Brother began radiation (complete with his own stories of clusterf*cks), my Amazing Stepsister continued to amaze in her care of our declining stepmom.  Even the stepmom amazed, as she unveiled the "dark side" of her personality, yelling at sweet Lumpkins, "Why aren't you here helping me?" That must have felt like (yet another) punch in the stomach for sweet Grader Boob. Anyway, I caught up on almost everyone's misery, finding strength in these beautiful people suffering so much more that I ever had or will.  They were still laughing through the tears, and I was tired of being snot-faced, so I did some cosmic chuckling.

Then we hit the next Wednesday.  You probably won't believe this.  We had an 8 am appointment with the Pain Management folks, a good thing as I had pain in need of management!  We also had found -- on the revered KP.org website -- and printed out the directions to this fifth new facility. Fred read them over, I double checked addresses, it looked easy as a deep dish cherry pie.

They were woefully wrong. Particularly the direction which had us turn left off the interstate exit, when the facility was about a half mile... to the right.  Easily a dozen roads bore the same moniker but swapped designations -- road, street, circle, parkway, lane, path-to-hell.  Fred didn't yell or snap quite so much, having witnessed my careful preparations up in the Computer Turret -- and getting up to the Turret in my condition was no easy feet.  Feat.

Again, the indigenous peoples of Jonesboro rose to the occasion, and our sanity-saving landmark this time was a "Steak and Ale."

I know!  I did not think there were any Steak and Ales left in existence, not that I'd ever frequented one.  Before Fred, and even ten years into Fred Time, I was a vegetarian.  If I had more red blood cells, I'd be going back to it.

So we got there... my leg now throbbing and growing, CRPS going nuts from more car stress.  Ruby the Honda CRV is a true babe, but when Fred is in NASCAR mode, she's not the smoothest babe on the road.

They refused to see me.  I begged, finally, waving about the KP.org directions, squealing nonsense about how "It wasn't our fault... y'all fucked us again!"  That got me a short visit with the local Nurse Ratchet.  She actually looked at the directions, shook her head, disappeared for 10 minutes, during which time a humming, blank-faced Fred went in search of coffee but only found grape-flavored vitamin water -- and then she returned and said, gruffly:  "Okay, she'll see you."

There's more, but I want to get to the following Monday, somehow.  The rest of Wednesday the 17th we shall cover with the gauzy curtain of faulty memory.  Thursday, Friday, and most of Saturday were lost to me -- big ass fatigue and a CRPS tantrum, fever, the right hand a lost claw. The last half of Saturday, I perked up.  For some reason, the infection in my leg seemed to be localizing again, kind of going back to its original look of a lone volcano in the middle of the top of my red and purple foot.  By Monday morning, I was pretty sure the thang was gonna blow.  "Good thing," thought I, "that Super Home Health Nurse Cindy is scheduled to come change my PICC dressing and draw labs. She can tell me if it's gonna blow -- and what the heck to do if it does!"

Poor Fred had been up all night, hitting the hay at sunrise.  So I decided to get up and toodle around the Manor, doing very small tasks and tending to very small animals (the Captain's husbandry interests in miniature species shows no sign of flagging... and then, of course, there are the three cats).  I let up whenever the volcano rumbled, but needed to be up to let down the drawbridge and pry open the mock and heavy Florence Baptistery doors to let the good nurse in.

Cindy is the first health care worker I've ever felt comfortable with in my home (Hey, we may be squatters, but we love Tête de Hergé and the Haddock ancestral testament to wild imperial-and-material-ism!).

And she was about to put on a show of ingenuity.

As I finally sidled up to the fanschy-panschy hospital bed in my Road Warrior wheelchair, and finally maneuvered mine arse onto its thin mattress, my piece o'shit right leg gently knocked the laptop precariously perched on the leg of the bedside table.  I watched, in what seemed like slomo, as it tipped gently onto the top of that piece o'shit foot, the high point of which, Mount Vesuvius, appeared to be its desired end point.

Yelling, yelling, whining, etcetera. Nurse Cindy rescues foot, only to find red thick and very pussy lava flowing underneath the electronics.  As if of one mind, we both said:

"We need to get a culture sample of that!"

Nurse Cindy became Nurse MacGyver.  She helped me haul the rest of me into bed, then sprinted to her car, and around the vast Marlinspike Hall in search of sterile implements.  In the end, with sterile gauze, she sucked up some of the "sample," placed it in a sterile vacutainer, and wrapped the whole kit-and-caboodle inside a sterile glove, then raced off to deliver it to a lab.

(The lab refused it.)
(But Nurse Cindy of Coram showed her worth that day!)

She also showed us how Fred now needed to, in as highly "clean," if not "sterile" conditions, change the bandage on the still-leaking foot, 3 times a day.  The first time he did it, I tried not to scream at Poor Fred as he donned gloves, removed the nasty, bloody wrappings, then SCRATCHED HIS NOSE.  In a well-modulated voice, I reiterated the instructions about what his hands were supposed to touch, and not touch, mostly for his sweet protection.  All I got was a "Did I really scratch my nose? I don't think so." Then he scratched his ear.

Fast forward to Wednesday, fast becoming my day of woe. September 24, 2014.  The day that went off without a hitch!  We knew where our appointment was, there was little traffic, we were even early!  And then I met the funny and smart PA Ava Cooper, the woman who plopped on the floor just to gaze at the sole of my foot.

I failed to mention that, thanks to Nurse Cindy MacGyver's instructions on wet bandaging, we had kept the volcano flowing... so that PA Ava Cooper could take a culture sample using the boring old typical tools of her trade! She acknowledged that the foot and lower leg were once again crappy looking (I forget the medical terms).  Another week of intravenous Dapto was ordered.  And we were back at the drawbridge a mere hour-and-a-half after departure.

The other thing I failed to mention was that late yesterday, a message came to me that there was a test result.  We weren't exactly expecting anything to grow, given the Dapto and all, but damned if something did not show itself:  serratia marcescens, or as I like to call it, "S. Macarena." It's been labelled a "secondary" infection, and so, in secondary fashion, a second antibiotic has been added. Blame is assigned to immunosuppression.

The new antibiotic makes me fart.

There are worse things, and these productions are near odorless, although annoying.  Dobby, for one, is not amused. Buddy and Marmy look alarmed, gaze about, sniff, and then go back to sleep.

I'm very vague now, depressed over my hand, though I snagged an appointment for October 7 for an OT "treat and evaluate, make new splint" session.  I also gave up on the arseholes in Neurology, the Doctors Huddleston and Wilensky, and am going to give Dr. Cole a shot at not hurting, and possibly, helping me.  Though I think it's too late for this hand.  But maybe she can take on the new neck jerks, head jerks, visual anomalies, and the everlovin' leg conniption fits from CRPS.  Pain is, as the kids say, ridiculous.

There's also so much going on in our world, on this Earth, that has me fascinated, terrified, and full of crazed opinions.  I want to blog about Syria, Saudi Arabia, Iran, Iraq, Israel, Algeria, France, the U.K. (and Scotland!), not to mention all the home grown idiocy this republic is producing, the degradation of politics, the apparent impossibility of holding office and holding on to one's ethics at the same time... I also want to make some kickass cat videos.

And I want to comfort Maranda, but cannot, don't know her well enough, don't speak the same language, no way I could!

But I can leave you with this recent photo of Ethan Hallmark, a remarkable cancer patient, and its young victim, but also a cool and ordinary kid.  As the fog dissipates, smiles and damp eyes gather in the wake.  You can read Ethan's story, as faithfully recorded by his Mom, at CaringBridge, HERE

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Maranda loving on Brayden... and vice-versa!

© 2013 L. Ryan