Saturday, April 7, 2012

this wild urge to have a parade

Technically, this is a repost.  In its first incarnation, it was called "Aesthetics of Catastrophe." 
I needed some evidence, tonight, that I really had tried.  You know?  That I went the distance, even beyond -- kept running, dolt that I can be, past the finish line!  This post commemorates the end of CRPS treatment, the end of the subanesthetic ketamine infusions last year, and it goes to the head of the line today.  

I did try.  

Didn't I?

Etymology of catastrophe:
1530s, "reversal of what is expected" (especially a fatal turning point in a drama), from L. catastropha, from Gk. katastrophe "an overturning; a sudden end," from katastrephein "to overturn, turn down, trample on; to come to an end," from kata "down" + strephein "turn" (see strophe). Extension to "sudden disaster" is first recorded 1748.

[Wikipedia] From Ancient Greek καταστροφή (katastrophē) from καταστρέφω (katastrephō, I overturn) from κατά (kata, down, against) + στρέφω (strephō, I turn)

Perhaps I miss the point.

I have two appointments today at the "catastrophic care hospital" where I received Ketamine infusions in an effort to conquer some of the pain inherent in CRPS.  There are many people being helped by this treatment there, most with some sort of neuropathic pain following brain or spinal injury or one of the chronic progressive neurological diseases -- but also many folks in the end stage of cancer, stroke patients, amputees with "phantom" pain.

It's a stalwart, funky bunch, with an alternative sense of style, a different notion of bling. 

"I like your cane" -- something I hear a lot.  I ditched the utilitarian bronze standard issue for one that is a screaming mess of blue flowers and leafy, leafy greens.

"Where'd you get those shoes?" -- and, oh dear God, if you have neuropathic pain in your feet -- presuming you have feet -- the Shoe Issue is never far from your thoughts.  I only wear shoes when I have to, like during a visit to the catastrophic care hospital, or for a quick waltz in the middle of a nasty parking lot strewn with bits of broken glass and bullet casings -- by the light (not the dark but the light) of the silvery moon (not the sun but the moon).


I loved shoes, loved wearing them, loved Italian leather, loved my legs.  A Top Ten Moment in my young life?  Waiting for a tennis court, feeling myself perused, turning in curiosity in the direction of the stare (always turn in the direction of the stare), meeting a handsome, frank face, hearing:  "Damn.  You've got nice legs for a white girl..."  The shoe?  A Stan Smith, I believe.

Now, of course, I cannot wear a proper shoe and only own one pair of foot-covering, an Old Friend brand "slipper" that literally folds on, with the Gimp's Favorite Aid, Velcro.  It is lined with shearling, the toe is open, the sole is flat, the size huge.  Over the course of the last nine years, I've slowly thrown out my shoe collection and added inevitably earth-toned, garment-dyed, loose-fitting organic cotton clothing, born of no discernible style, and often involving drawstrings instead of pesky zippers or buttons. 

Who owns just one pair of shoes?  (If you're about to deliver a sermon that includes references to very poor and/or saintly persons, I hope you choke on it.) 

Anyway, I dole out the fashion advice, extending my flowery cane for inspection, modelling my fancy footwear, and I covet, in my turn, their superior wheelchair, or the personal assistant carrying all their excess stuff, filling out their forms.

A person in pain, surrounded by other people in pain, will zero in on anyone who projects a measure of physical comfort, and deconstruct his circumstances, examine her measures and countermeasures, desperate to take away something worth a try. 

One day soon I need to record the bizarre scene we witnessed in the pharmacy, where the Gimps gather prior to Ketamine treatments in order to get the "dollar special," a ten-milligram Valium that is supposed to help with spasticity.  {Snort}  I can tell you exactly what happened, but what the scene requires is beyond my aptitude for description.  A young woman, about 25 years old, was ensconced in the most intricate power chair I've ever seen.  Do you know what I mean if I say:  "She had too much chair"?  Too much for her body -- thin but wiry, with good muscle tone, the all of her nestled in what must have been a herd's worth of fleece.  Her face blank, her eyes flashing angry, she was in good control of her upper body, and something made me remember her as in control of her legs as well.  No, maybe all I knew was that she wasn't a quad.  Memory, schmemory.

She was abusing her chair, abusing those of us near her chair, and was being so curt with the pharmacy clerk that some sort of implosion seemed imminent.  Head Pharmacy Dood glowered down upon her from his place on high, under glass.

Using the joy stick on a power wheelchair becomes completely intuitive within minutes of first use, and most are now quite sensitive and require only a light touch.  She was doing zero to 4 mph in jerky lines and semi-circles, those eyes grim and sucking the giddy joy out of the rest of us sickly excuses for deformity. 

As waiting was the name of the game, most of us powered down and stared at CNN, ubiquitous CNN, or read the headlines in The Chronicle, comparing them to the ubiquitous USAToday piled underneath the local option.  But scoping out the media became impossible as The Chair Abuser hit her stride.

In an alcove near the check-out counter were several carts ready to be taken out into the larger store, priced, and displayed.  It was an interesting mix of sterling silver jewelry, gift vases, and zippered-and-velcroed nylon contraptions meant to accessorize our wheeled conveyances -- in a vast color array that extended from teal to hunter green. 

The Crazy Lady decided that was where she and her oversized, tricked-out behemoth needed to be.  It was doable -- I could have done it -- but I've a hesitant, cautious hand when out in public.  Hell, I file a flight plan with my cerebral authorities when venturing my handy dandy Invacare into tight spaces.  I use hand signals, I organize committees before undertaking a three-point turn. 

She barrelled ahead, weaving, almost taking out an able-bodied adolescent, who squeaked as he leapt aside, all floppy.  She rammed the first cart.  The domino effect ensued.  Clearly enjoying her role as Mayhem, she grabbed a few pieces of jewelry, blithely dropped them, rocked her chair forward, rocked her chair back, ran over the jewelry -- the flat, tread-lined pieces of sterling transformed into embedded bling in the institutional gray carpet. 

At least five of us stumbled through sentences that died out with our mutual verb choice:  Does she need help, do you think?  She needs help, should we help, how can we help, oh, God, she needs help-p-p-p.

Okay, so I might have tossed in a gratuitous, Damn, but she scares me...

She was moving at a speed far beyond our half-hearted verbiage.  Instead of a controlled centrifugal turn to escape the alcove -- where most everything was now on the floor, and trampled -- she rammed, slammed, smushed and smashed the chair controls as far as each could go in every direction and dimension, she twirled and whirled (but no dervish, she!), and while a part of me wanted to cheer, most of me wanted to cry.

A display -- lip balms, gums, Swarovski crystal-encrusted earring-and-necklace sets, and an odd tray of Original Fruit Skittles --  fell victim to her frantic exit.  I say frantic, but there was no frenzy in her, in the her, proper. 

I thought, "She's evil," but I said, "She's new to this, she's angry, and she has too much chair!"  The Ketamine Crew responded with sage nods, with murmurs;  The pharmacy clerk sighed and began passing around the Valium.

Yeah, so.  One day, I will tell you all about it.  Okay, so it was transparent;  It was like being hit across the face with a big, stinky fish posing as a big, stinky metaphor.

I've visited this hospital at least weekly since March.  There are a few things that bother me immensely about the place, but that might have to do with issues more properly situated between my ears.  Most of the time, once the pharmacy trip was done, the forms signed, when Fred and I were just hanging out, waiting to be taken back and assigned a bed -- we were humbled to be sharing air with all those wise-cracking, sweet-hearted heros.

While the hospital is an absolute marvel of technologies and innovation, someone somewhere gets perverse pleasure in manipulating the décor.  Who knows, maybe it's the latest in Occupational Therapy.

The Pain Institute itself is a sudden offshoot from one of the hospital's central corridors.  Well, one of the hospital's many central corridors.  Lost in one of the area's numerous parking structures (think parking deck, but perverted and amplified by Feng Shui for the Disabled), I managed to get close to a bird's eye view of the complex, and while, yes, it's linear, it's also the victim of haphazard planning, possibly by someone trained young on squat little green and red Monopoly houses and hotels. 

You know what I mean -- you get on an elevator and already you've the choice to exit via the front or the back folding accordion door, with options for switching to various color-coded floors that have life-altering and destination-screwing walkways, breezeways, or "bridges." There is also a tunnel connecting the Catastrophic Hospital with another award-winning, world-class (i miss ross perot) hospital of the regular variety -- though I tend to think that catastrophe is as catastrophe does, but hey, that's just me.
The tunnel also serves as a conduit to some of the larger satellite clinics and prominant private practices located across one of this city's busiest and most famous streets.  Fred and I are very familiar with the tunnel, having many times crossed under the street to get from the regular, non-catastrophic hospital to my Infectious Disease Doc's place.  Ah, the joyous hours there -- trying to get PICC lines to work and cozying up to piggybacks of vancomycin. 

We never tunnelled our way, though, to the catastrophic hospital.  You know, that place that is the subject of this blog post.  Damn, but I run a tight ship.

So anyway, once you've found the Pain Institute within all that mess, you're likely to feel some vague anxiety just by the look of the waiting area.  The layout is linear clutter that screams impermanence.  We theorize that the Institute staff plays with the seating arrangements much in the way some families rearrange their Christmas crèche. [Fred enjoys recreating Stonehenge designs;  He also likes to use alternative characters -- We always have at least one Winnie-the-Pooh Nativity somewhere in The Manor, having bought up a warehouse of Disney knock-off figurines a few decades back -- a shrewd investment,  let me tell you!  Tigger, Rabbit, and Owl make great Magi, while in other poses they can repeat as Shepherds.  Eeyore is a fabulous herd animal or camel, and even once served as Joseph. The dozens of honey pots have dozens of uses, structural as well as thematic.  Piglet, of course, is the Christ Child, with Kanga as Mary.]

You'd think that this institutional waiting room would be limited by the number of its individual elements of design:  two very long sofas, three wingback chairs, and what must be the leftover seating from a dozen or so discontinued dining room sets.  We've shown up for morning appointments, sipping coffee midst sofas placed back to back.  We've then left, had lunch, and returned for an afternoon meeting -- iced tea at the ready -- to find those same sofas separated and holding up opposite walls. The next week, there might be only one couch, and from a completely different design line. We finally figured out that the Institute Design Elves swap the furniture with other clinics that also extend from the catastrophic hospital's main corridors -- "Look!  The Pain Institute's Llama Hide Sectional Loveseat is dressing up things over at the Multiple Sclerosis Clinic!  I think they swapped it out for those sleek, stackable Lego Original Dining Chairs we had stashed by the water fountain.  Shoulda nailed those suckers down..."

I'm tempted to tell some ugly truths about the Temporal Lobe Dysfunction Subcortical Mini WalkIn Clinic, especially what those Klüver-Bucy Syndrome wankers* try and pull.  They may act all meek and mild, but that doesn't mean they don't wanna have intercourse with the sexier pieces of the Pain Institute's furniture or suck on our doctors' elbows (Dr. BlinkALot found that out the hard way when he tried to retrieve the Pain Institute's antique coffee urn.  He claims one of the patients winked at the departing carafe, grinned and said, "Best lay of my life and I didn't even get her name...").  Some lobes just don't take well to being divided.

The truly weird aspect to the Institute's wait area?  Someone tried to make the Institute adhere to a nautical theme, complete with rope-wrapped portholes as mirrors, a series of nonfunctional barometers,and the requisite oars -- jauntily crossed and mounted on the betadine-splashed, sand-colored wallpaper like those giant wooden forks and spoons handcarved by angry artisans with food issues. (Why are there never giant wooden knives?)  As every interior decorator worth his salt knows, strategically placed sails can hide a multitude of sins. Therefore, the Pain Institute has spinnakers;  It has jennies;  It has proper jibs. And, of course, what are you going to do with perpendicular horizontal spars but put up the square rig for which they practically scream?

There's a bronze plaque honoring the design firm responsible for the Pain Institute's décor -- I assume they mean the permanent décor, that part of things that is nailed or glued in place, impervious to Parkinson's Posse and those Fearless Souls in the Diaphragm Pacing Stimulation Outpatient Clinic.  The award must be based on Superior Oddity.  It's not like "Ahoy, Matey" leitmotifs run rampant through this place, catastrophe's home in the urban heart of a huge city.

I'd say roughly 60% of the outpatients bring their own chairs which makes for some interesting traffic issues.  It's tough to figure out whether a seemingly random grouping of wheelchaired people are waiting in a line or whether we all just ran out of battery power in random proximity to one another. 

No one comes alone.  We all have "caretakers" -- hired, borrowed, or trapped into it by circumstances of love, hate, guilt, whatever.

I can be brought mentally and emotionally quite low by the mere thought of that waiting area.

But self-pity and fear go out the window, or the porthole, really quickly when my attention turns to the hallway traffic traipsing, limping, and rolling by.

Most of the inpatients are so young, and so terribly injured and altered.  Think about it... who has the most chance of being catastrophically injured?  The young and adventurous, the young and stupid, the young and talented -- the young. 

It's humbling, and my rate of bitching and moaning drops to new lows after every visit, however briefly.  I wonder whether it's a change that merits permanence.  I am not sure.

You see families whose lives and histories were altered in the course of a second.  There are almost always trim women chattering away, nimble and tan, walking self-consciously behind their children, who lead these strange parades with walkers, splints, manual chairs, power chairs, crutches -- forearm, underarm, strutters, platforms. Blunt therapists amble alongside, offering advice but not help, providing the will and the wherewithal until the patient can supply his own, her own.  Fathers and brothers are more rare, usually bring up the rear, are pale, and blink a lot. 

A couple of the parades we've watched have been of young families, and then the grace of little kids kisses the whole affair.  No one told them the Parade Rules.  Spunky toddlers cannot remember to stay behind the behemoth wheelchair, not to climb on Daddy's lap, not to hitch a ride on the walker frame, not to laugh, not to be selfish.  Children are anathema for sanctimony.

I don't mean to make it sound like every patient one sees is a rad skateboarder or that the families are all impossibly optimistic units devoid of realism.  But there is a difference, hard as it is to describe, between people whose brains and spines were injured while engaged in sport, or driving a car, and the large group representing stroke, chronic/progressive neurological disease, amputees, and brain injury folk.

And many people journey essentially alone.

When I think of the patients who have yet to have a parade, and who might never have one, it becomes too much.  There is, for example, a "pre-rehab" program for those patients who are "minimally conscious." 

Yeah, so... So this is the blog post that I started on Tuesday, before heading over for my two appointments, and this is the blog post that I finally finished this morning, three days later.  In between, I have raged, cried, embarrassed myself, embarrassed others, jerked, spasmed, and hurt.  I mopped, swept, cooked, made lists, did laundry, read two books, groomed cats, and then raged-cried-embarrassed-myself-and-others-jerked-spasmed-and-hurt some more.

I was a total ass during the first appointment, and even though I apologized promptly, it was a tantrum that needed to happen, just so I could get over myself.  The second appointment was a breeze, as my nurse was one of the Ketamine Crew who was pulling clinic duty that day, and the doctor failed to show up, sending his PA instead, whom I much prefer.  Both of those women could probably finish my many sentences with close to perfect accuracy, and better spelling.

One "hugged my neck" upon hearing that my experience there was ending, the other blinked a lot.  I was encouraged to call every few months to see if there might be a drug trial or a new therapy in place or in the proverbial pipeline.

It didn't feel like a failure (whereas it had, earlier, at the first appointment).  I was incredibly lucky to have the opportunity to try -- to try again and again, past the point most medicos would consider sensible.  That said, I am very sad, and tired.  A little confused.  None of which was unexpected, really.

What I didn't expect was to miss the place, to dream of the maze of corridors and peculiarly specialized alcoves, each peopled by peculiarly specialized men and women. 

I sure didn't expect to spend so much time eyeballing Marlinspike Hall's layout, making my various routes around The Manor more wheelchair friendly, learning to not hate my adaptive equipment.

I definitely did not expect this wild urge to have a parade.

* [Courtesy of The Urban Dictionary] WANKER:

ONE:  While "to wank" means "to masturbate", the term "wanker" is seldom if ever used in British slang to denote "one who wanks". It is quite wrong to infer from somebody's being a wanker that they in fact wank (and vice versa), but of course, fair to assume they do in any case. Herein lies the genius of the insult: if you call someone a wanker, it's probably true, but only literally.

I suppose it all originates from our repressed Victorian sexualities, from back when everybody thought they were the only ones to suffer the secret shame of being an actual wanker.

Most children these days learn the word "wanker" long before they learn its literal meaning.

You're such a wanker.
Oh gosh! How did you know?

He lost both of his hands in a childhood kiting accident.
What a wanker!

TWO:  George W Bush.
Wankers can't be trusted with their own dicks let alone anyone elses.

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