Fred's Day

A repost from Memorial Day weekend 2011. Familiar themes and stories that 

can always bear repeating, and the times beg remembrance.

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Raise your hand if you think Fred should win some sort of award for putting up with me. {hand::in::air}

He's a total stud.  Despite wrenching the good heck out of his lower back, he's mowed the Lower Top Forty, resurfaced the Simulated Wimbledon courts with fresh sod and made Topiary Master Works out of the boxwood hedges.  He even chased wayward cattle back through the cavernous hole in the rock wall, back over to the Monastery side of the apple orchard -- where he found Abbot Truffatore, bald pate a-dripping and a-shining, down on the scarred and knobby knees that perfectly bisect his bowed legs, working alongside Father Tom and The Tomettes, The Penitent Cohorts -- all of them scrubbing the Red, Red Rose Garden flagstones with toothbrushes.  Again.  Those Crazy Cistercians.  (It about kills me.  There's clearly a great story there, but The Boys weren't talking, insisting instead on the discipline of reverent silence -- The Kill Joys! And since Fred was more interested in wandering bovine than in what might've so humbled the Hoity-Toitier of The Brotherhood, that leaves me and my investigative reporting skills.  I'm on it!)

Even before finding Truffatore on his knobby knees, Fred and I have suspected something was amiss over in the Monastery-Down-The-Road.  They've yet to submit an application for a booth at the upcoming ManorFest, and -- tic toc -- time is winding down! The Abbot has only sought weekend refuge in Marlinspike Hall once thus far this year and that was, understandably, to avoid having to say all those celebratory guitar masses of Bin Laden's death.  He wasn't so much his usual trembling skein of misfiring nerve fibers as he was just plain old weary.  Guitar masses will do that to you.

Some are saying that the security of their biggest income draw (and center of their worshiping lives) -- The Holy Foreskin -- has been compromised.  Rumors abound that keeping it in a domed pastry tray was an idea born for trouble -- on the basis of humidity alone.  On the up side of things, Father Clem's doing well in therapy and nothing not meant to burn has gone up in flames for over 8 months.

Anyway... as soon as we decipher the Monastery's Mystery, you'll know.

Hey... It's Memorial Day weekend, and while for some of you lazy gits that means decorating the graves of the Confederate Dead, for me, it's French Open Time!  Yeah, yeah, yeah, died to protect my freedoms, way of life, whatever... but oh-h-h-h, wouldya look at that down-the-line backhand?!

No offense to Novak Djokovic, good citizen of Belgrade, but I need for him to step aside -- just for this tourney.  Given his early draw, that may happen.  (At least, it may in the sense of "On any given day..." -- a phrase that I never thought would recur so frequently in this godforsaken blog!) Yes, but given how incredibly hot he's been playing?  He may need to be brought low by a pinky blister that obligingly morphs into a pseudo necrotizing fasciitis.   I'm just sayin', Lord.  This was meant to be all about Nadal, not some clown who has managed to string together a mere 37 wins in a row...

And Borg, of course.  (Bjorn remains the only subject of sports photography ever to have graced one of my bedroom walls.  Legs, people, we are talking legs... and face... and scruffy little beard... Hmmm, I think a short Pause of Adulation is in order.  I once tried Borg's incredibly high tension on one of my own wood rackets -- let's just say that neither my shoulders nor my legs were able to exert any control over that action.  80 pounds of *ping* is hard to manage.  Remember that!)

I love tradition.  And Roland Garros, to me, should be Nadal's Place.  2009?  What about it?  Clearly, an aberration.  That was the year the lad was so confused about clothing.  Droopy drawers, muscle shirts, none of it exactly suitable to his body type.  (Maybe it was just the pants:  His butt was clearly too big for his pants;  He wasn't comfortable, and I squirmed on his behalf.) 

Everyone was confused.  New York Magazine noted that it was also the "year in which Federer's look tipped over into full-blown prissy self-parody." 

I don't have the energy to go there.  I am not a Federer Fan.

Today was the last day of qualifying.  Play begins Sunday.

I need the distraction.  Best form of pain relief there is, distraction.  I needed distraction yesterday!  That's when Fred really earned my gratitude, renewed my respect.  Never mind the chore of navigating the absentminded sort of traffic we get here in Tête de Hergé (très décédé, d'ailleurs), never mind his aching back -- he also had to listen to me fret, then had to sit in one of the more uncomfortable waiting rooms of our connaissance, and tolerate my tears.

I had a 1:30 appointment with the pain management dood at the world renowned catastrophic hospital for brain and spinal cord injury.  You know, the place with that weird statue out front -- a bronze of a kid in a wheelchair hoisting a javelin.  When we rolled past it at 4:30, on our way out, my eyes could barely focus.

I gotta say, though, that my opinion of Local Talent rose quite a bit throughout the afternoon.  Except, perhaps, my opinion of the absentminded drivers.  We kept encountering people who did not appear to be even conscious, much less alert.

I've only met with this doctor, in an official "appointment" kind of setting, once before -- the day I went a-begging for inclusion in their subanesthetic ketamine infusion program.  He gifted me with hope that day, and he gave that gift some renewal yesterday. 

To quickly review, I had two courses of infusions, for a total of six treatments.  They never really did anything and I've been pretty depressed about that.  Toward the end of the second round, I emailed Dr. Schwartzman, you'll remember, and found out more about the protocol in use at his Philadelphia clinic.  He was kind enough to issue an invitation for evaluation, with the added incentive of offering an "expedited appointment," as his schedule is full until 2013.  The invitation was not to show up and be treated, pronto presto, but to undergo evaluation.  The ketamine treatment would be deferred until... later.  Another trip, followed by other trips, as there are required "boosters."

I was excited and felt like maybe all doors were not closed to me, after all.  I can be so stupid.

My doc yesterday conducted his clinic according to a brilliant master plan.  As they escorted me down the hall and past all of the examining rooms, my head was swiveling to the left and right, and when ushered through the door to the Ketamine Room, I began stammering "No-o-o! I'm not here for Ketamine today!" They laughed and stashed me behind Curtain #4.  The doctor scooted between "rooms" on one of those dreadful rolling chairs.  The bad thing, and to me, a very bad thing, was that you could hear everyone's business.

[It was instructive, though, to actually get to hear a couple of drug-seeker spiels.  The stomach turns at the blithe story deliveries -- "Could you write a prescription for my husband?"  "Can you believe it?  I spilled a whole bottle of pills in the toilet!"  And always, there were specific suggestions of "[y]ou know what might work better?"]

I thought, Hmm, I can do that... With a twist!  So when he got to me, I pitched the idea of giving Ketamine another shot, but by a protocol as close to Schwartzman's as possible.  Then I sat back and waited to be laughed at, or condescended to, or whatever.

He was so nice, so amenable, so cool about it.  And I was left wondering whether it had always been just that easy -- people waiting for me to ask for what I want, people waiting for me to lead instead of follow?

Beginning June 13 and ending June 23, we've scheduled six infusions, all of them to be at least 200 milligrams.  In Philly, it would be ten infusions in twelve days.  Here, I'll get six in ten -- the most that they can fit in.  I am very, very grateful.

Other stuff -- he wants an endocrinology consult (adrenal failure, avascular necrosis, diabetes, Hashimoto's, Cushing's, and what not...) at one of the med schools, and also I'm to take a refresher course in biofeedback.
Like the first time we met, he pushed, and pushed hard, for me to give Prialt a try.  I was hoping that just refusing implantation of a pump would settle the issue (my way!) but then he came up with doing a couple of injections right into the intrathecal space as a sort of trial.  I told him I'd think about it... That's the best I can do.  If anyone out there can share some *positive* experiences with the Snail Juice, please do!

He could have made a longer list -- I'd do it all just to have this last shot with Ketamine treatment -- under a more rigorous protocol.  He did say something about my shoulders, something about bringing some "resolution" to that "issue."   Noted, but with a bit of an eye roll.  Like I haven't been trying for three years now.  Like they aren't killing me...

Speaking of killing me, he then engaged in dubious tactics that were responsible for the aforementioned tears.  I believe the conversation went something like this:

Him:  So... what will you do if the ketamine continues to fail, if there is nothing left to try?
Me:  {cleverly avoiding the question} That's why giving it another go is so important to me.  This is probably my last chance.
Him:  So... do you have a plan in mind for how to kill yourself?

Holy Mother of God, that was unfair.  Fred opined that it was a "Sixty Minutes" interview tactic -- you know, the one where they shift gears so fast that the engine falls out of the auto body... 

I was so pissed off at the question that I did the only logical thing and burst into tears.  I mumblemumbled something, don't remember what exactly, except for the inimitible "whose life is it anyway?" that fairly exploded from between my lips.

I probably told him that yes, I did indeed have a plan, didn't everyone? I might have mentioned that I consider suicide every single day, and have for several years.

For me, the day pretty much ended at that moment.  I would have liked it to, anyway.  Lots of paperwork ensued, and some creative scheduling.  Fred was pretty much not on my mind until I finally made it out the door and into that sucky waiting room (the clinic is held in the middle of this "catastrophic" hospital, so the waiting room feels very exposed and its furniture... unfriendly).  There he sat, head bent over his book.  The smile on his face when I finally showed up was precious.  So much so that I promptly dumped the contents of my purse onto the floor, because, of course, having him bend down to pick it all up for me was really a plot to work his cold, stiff back muscles.

He gave me permission to cry, and so I found myself laughing.  He reviewed the "60 Minutes" technique with me again, and had me howling.  Traffic was stop-and-go, even on the freeway, but we never seemed to get stuck.  We made up reasons for the Existence of Endocrinologists.  Without me mentioning my DIRE NEED, he pulled into the local Yogurt Emporium so that I wouldn't be bereft of the fermentation necessary to five months straight of oral antibiotics.

And the boy bought himself a nice bottle of wine, too!  (Don't your Yogurt Emporiums sell wine?)  He didn't get his usual buttery Chardonnay but a Gewurztraminer and Riesling blend instead. 

That was Fred's day (with me stuck smack dab in the middle of it).  A prize, an award, a hefty stipend, the man deserves something.

3 years ago today: Subanesthetic Ketamine Infusion #2

originally published 3/22/2011 -- republished to honor fred


I'm pretty blue, pretty exhausted.  Can't think of a reason why yesterday's treatment should be behind either of those states, but heck... who knows?

They upped the dose to 90 mg and infused it in about 2.5 hours.  It was not pleasant but I apparently did a good job hiding that from Fred.  The nurse somehow knew I wasn't having the time of my life, and gave me a pep talk at discharge about how finding the right dose takes time and then several treatments at that dose, or higher.  Monique, her name was Monique.

Without saying much, she said a lot.  Like how this may be pissing into the wind because I am starting so long after onset.  Nine years.  Nine years.  Nine years of this.

She wouldn't use the port (that's right -- after all we went through to get it in before the second infusion -- the doctor having said he would refuse to treat me if I showed up without one...) because it was so new, the site very... raw.  It's swollen, bruised, and just not healed at the "edges."  I could see Fred eating his outrage before bending to his book.

Instead of sitting by my side, he sat in the wheelchair at the foot of the guerny, so as to stay out of the way of the nurse and tech, who do vital signs frequently -- like every 15 minutes.  He was beautiful to behold, at least in my tripping mind -- standing out against the bleak fluorescence of the hallway, a silhouette I've come to love, a faithfulness I surely do not merit.

I remember crying. My legs spasming, relentless.  The i.v. tubing, the blood pressure cuff, the oxygen monitor --each thing assumed terrible proportions just by tapping against my skin, each tap scathingly painful. I remember thinking that so long as I didn't open my eyes, I'd be fine.  That's probably why Fred thought all was well, thought I was sleeping through it.  Not so.  Not even close.

I asked for my purse there toward the end.  I had wanted to take a clip of the statue in front of the hospital.  Instead, while completely out of my mind on ketamine, I took a video of the ceiling in my cubicle, the curtains surrounding my cubicle, the empty hall near my cubicle, and...

...the most comforting of comforts, perched in the wheelchair there at the end of everything, my sentinel, my guard -- the best argument, the best reason I know for opening the eyes...

Next week, an even higher dose.  Then, the following Monday, an assessment and decisions.



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The Aesthetics of Catastrophe, reprise

The Aesthetics of Catastrophe
(first version appeared in april 2012)


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).

Sorry.

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 story.  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 wat! er 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 "piece"  that I started on Tuesday, before heading over for my two appointments, and this is what 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.


© 2013 L. Ryan

"Testimonials don't lie," and Other Lying Lies

For those people who keep contacting me in hopes of converting me to being a believer in the "testimonial" method of explaining the miracle of CALMARE / Scrambler Therapy for CRPS, I would like to share with you the type of "testimonial" video that does, but still only to a degree, have an impact on me.

This is Dr. Anthony Kirkpatrick, director of the only CRPS / RSD research center in the world so uniquely dedicated (The Reflex Sympathetic Dystrophy Treatment Center and Research Institute in Tampa, Florida) and his post 3-day continuous subanesthetic ketamine treatment interview with a patient with longstanding CRPS as well as sciatic nerve injury.

Subanesthetic ketamine treatments did not work for me, but I do not then go out and give negative "testimonial" diatribes about it.  I understand the science behind it, and knew going in that my protocol was not the optimum one (I couldn't reach the desired dose; I was fighting a very active osteomyelitis; I was going through a period of severe spasticity; plus, success in longterm sufferers is harder to achieve).

My insurance covered the treatments, something they won't do for CALMARE.  I did outpatient treatments, roughly 3-4 times a week.  At the end of this several month-long effort, we attempted to approximate Dr. Schwartzman's famed protocol, which he was kind enough to send me.  I even weaned myself off of methadone and percocet -- fast and by myself (not the recommended way, but I wanted to afford myself every chance of success, and Dr. Schwartzman wants all those glial cell endings available for reprogramming!).

My point is that the CALMARE snake oil pitches are vague and full of, frankly, nonsensical statements. Compare this video by Dr. Kirkpatrick with what is offered by Dr. D'Amato.  Then try and tell me, as a recent reader did in a comment, that "Testimonials don't lie."*  Puh-leeze.


3-Day Ketamine Treatment for Complex Regional Pain Syndrome
uploaded to YouTube by dockirkpatrick

VS.

Calmar Pain Relief Therapy - Nancy's Testimonial
uploaded to YouTube by CalmarPainReliefcpr·

*****     ***     *****     ***     *****     ***    *****     ***     *****     ***     ***** 

* Kelly Ann Sipes (Phillips) said...Actually Bianca, there is evidence that supports the Calmare/ST, and the workings of the "non pain" signals that are emmitted from the machine replacing the "painful" nerve signals(which is CRPS). All of this nerve pain and mis information of signals to the brain then trigger the autonomic response and wind up leading to the swelling and color changes, hair/nail growth and microvascular issues that cause the osteopenia. My daughter had the severe color changes and dystonia and when she was hooked up, after he found the correct placement of the leads and the correct "non pain signals", her color returned to normal and her toes are starting to become less dystonic. I have been in the medical profession for over 20 years and have never witnessed anything like it before.
There is no cure to CRPS only treatment and all the other therapies are for the most part invasive, have side effects and for our situation did not work. The blocks, the ketamine, the SCS, the medications....The negative far outweighted the slight amount of relief if any that she would get. You need to get to the root of the problem and that is the nerve pain and how the brain is "mis-interpreting" these terrible signals and causing the myriad of other issues. Dr. D has 2 books of testimonials of before and after treatment and gets permission from his patients to record their progress. He has had some patients that were bad, they looked as if they were going to loose a limb. It is hard to discount that 90% of his patients have improvement. That is a huge number, and scientific research or not clinical trials or not it is a moot point. It works. Testimonials don't lie. Not everyone will respond but 9/10 are not bad odds. I would reconsider and look into it. And before you go and bash someone and call people names and accuse them of something that they are not guilty of you should have your "research" done and done correctly. It would be ashame if someone was to base their treatment choices on your lack of personal experience.
Best of luck. [emphasis mine]

          *****     ***     *****     ***     *****     ***    *****     ***     *****     ***     *****


This is where I am supposed to blithely slough off a remark like... "different strokes for different folks" or even, I dunno, "beauty is in the eye of the beholder." Or "a TENS unit by any other name would smell as fishy."

Instead, I think I'll post this cool graphic I stole from Daily Kos yesterday. I knew I'd want to use it one day but didn't think I'd be prodded to do so this soon!

© 2013 L. Ryan

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).

Sorry.

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.

Philly Bound?

I rarely send out an email loaded with blind copies, mostly due to the divergent nature of my group of friends and family.  This morning, though, was a wonderful exception. 

Hi --

This is a group email. I wanted to update everyone on the latest. An opportunity has come my way that I am excited to pursue.

Dr. Robert Schwartzman is one of the few true experts on CRPS/RSD in the world. He was the first to follow strict research protocols in the administration of the so-called Ketamine “coma cure,” pursuing this in Germany with great success. Dr. Anthony Kirkpatrick has a similar program in Mexico. Several years ago, they began investigating subanesthetic (i.e., non-coma) Ketamine infusions, and this option has become available at a short list of places throughout the United States. However, not every site employs the same protocols for administration of subanesthetic Ketamine, so it is sort of a mixed bag in terms of success.

I was lucky enough to find a location offering the treatment here in Tête de Hergé. Unfortunately, the protocol being used there is more conducive for treating other types of severe, intractable pain. It seems that CRPS responds best to what amounts to a blitzkrieg – [outpatient]10 days straight at a fairly high dose with follow-up “boosters," or [inpatient] 5 days continuous infusions, also at a high dose. The program at the X Center here is limited by funds, space, and staffing, and currently can only offer the treatment 3 days a week in short sessions.

After 6 infusions, spaced over a couple of months, I had no improvement. I wrote Dr. Schwartzman two weeks ago, asking what could be done to optimize the impact of the infusions. He wrote back with some explanation of the protocol he believes most effective, and invited me to see him in Philadelphia, where he is Chair of the Neurology Department at Drexel University College of Medicine. But it turned out that he has over a 2-year waiting list of patients, so I curbed my enthusiasm and began to scope out other options – for example, there is a Ketamine program at the Hospital for Special Surgery in New York City.

Then, yesterday afternoon, I got an email from Dr. Schwartzman’s Clinical Nurse Specialist, Ms. D, offering me an “expedited appointment.” It’s been a good while since I have cried for happiness.

Ms. D added: “He would also welcome your physician and/or the staff at x Institute to come to his RSD pain clinic any Monday to observe and discuss treatment protocols.”

There are still substantial problems and variables to address, beginning with any “exclusion criteria” they may employ at Drexel, and the logistics of getting there [$$$]. Even so, it would be worth going simply for the evaluation, I think.

Clearly, I am not quite done with what the X Center is offering and will see the doctor there soon.

[Click HERE for a short bio of Dr. Schwartzman.]

I have not been the most reliable communicator these past few months and hope everyone can forgive me. Of course, some of you are likely sick to death of hearing from me, and to those folks, I can only say “Thank you for your forbearance.” If anyone has any great ideas on how to get this done, please write. (Would you like to go with me?!) And if EVERYONE would think good and encouraging thoughts, I’d appreciate it!

Best wishes to one and all --

(Bianca; Eljay; Prof -- and other assorted noms de plume)

chum: bin laden's burial at sea

it's tomorrow and i am reading what i wrote here yesterday.  you'd never know it, but ketamine doesn't really leave you stupid -- just tired and nauseated, with a killer headache.  still, i see the skeleton of a very good post in the detritus below;  i see, especially, a riff on the anthropology of religion, maybe even working in some fascinating schematics, and a kinship chart of the house of saud -- so full of divisive half-siblings and probable liaisons with al rashid that a new symbology will need to be established... enough, at least, to flesh out its ties to bin laden and the gnarled knobbies of the syrian branches of the family tree.

i loves me some kinship charts.

you might be shocked to learn that after majoring, briefly, in premed, then nursing, and, of course, biology, i ended up getting a degree or two in french, with a minor in... cultural anthropology.  it was kind of a toss up as an undergrad which field to honor with my intellectual staying power -- anthropology or foreign languages and literatures.  honest to god, if the anthropology department had been up to speed in the theory of that era (all the theory courses were taught by the same pasty-white, overweight, besotted-by-his-glory-days philanderer), if it had offered more than one introductory course in primatology -- well, then, clearly, i'd have become an accountant.

no, i've not forgotten why i wrote this post.  have you?

i feel enormously alone in the resurgence and depth of my anger over the bush/cheney war waged in iraq, the assinine way we conducted ourselves in afghanistan, and the evident complicity of pakistan in everything from protecting terrorists to fred's ingrown toenail.

it is this anger that distinguishes today from yesterday, this anger that tarnishes the shine in my voice as i sing along with the radio play of lee greenwood's corny and facile god bless the u.s.a.
-- where at least I know I'm free! -- spliced now with president obama's announcement on sunday night of osama bin laden's death.

he was "buried" at sea.  i wonder if anyone involved in this special ops mission anticipated the fascination that would be triggered by this detail.

anyway, this is what it prompted me to produce yesterday -- a half-assed search for foundational doctrine that might make the dumping of a body off of an aircraft carrier consistent with islamic tradition and law.  part of me was, and is, still, so full of blood lust and hatred for osama bin laden that the notion of him as deep sea chum is oddly satisfying.  the fact that this decision also deprives followers of al qaeda of an actual spot to visit and fan the flames of martyrdom?  well, that's just chum gravy.

*****     *****     *****     *****     *****     *****     *****

i'm fresh from my sixth ketamine infusion, a whole 2.5 hours away from what proved to be a weepy experience.  that's right.  i cried through the whole thing.  (or so they say.)  these same people claim that u.s. special forces killed osama bin laden yesterday, then dumped his body at sea, calling that in line with "islamic tradition." right.  he sleeps with the fishes, right next to muhammad.

trust wikipedia to actually have an entry, subdivided by religions, on burial at sea:

Islam:  The sacred texts of Islam prefer burial on land, "so deep that its smell does not come out and the beasts of prey do not dig it out". However, if a person dies at sea and it is not possible to bring the body back to land before decay, burial at sea is allowed. A weight is tied to the feet of the body, and the body is lowered into the water. This would preferably occur in an area where the remains are not immediately eaten by scavengers. Also, if an enemy may dig up the grave to mutilate the body, it is also allowed to bury the deceased at sea to avoid mutilation.[3]

i fell in love with the foot-noted reference at the end, there -- it turns out to be the stuff we actually wanted to begin with -- actual islamic law on burial.  odd, but in situations where i am completely clueless, like this one, it doesn't seem ghoulish to learn as much as possible.  or maybe that's the ketamine talking (and its metabolites!  don't forget the metabolites!).

Copied below please find:  Islamic Laws according to the Fatawa of Ayatullah al Uzama Syed Ali al-Husaini Seestani -- the English Version of Taudhihul Masae'l, translated by the World Federation of KSI Muslim Communities.

Rules About Burial of the Dead Body


620. It is obligatory to bury a dead body in the ground, so deep that its smell does not come out and the beasts of prey do not dig it out, and, if there is a danger of such beasts digging it out then the grave should be made solid with bricks, etc.


621. If it is not possible to bury a dead body in the ground, it may be kept in a vault or a coffin, instead.


622. The dead body should be laid in the grave on its right side so that the face remains towards the Qibla.


623. If a person dies on a ship and if there is no fear of the decay of the dead body and if there is no problem in retaining it for sometime on the ship, it should be kept on it and buried in the ground after reaching the land. Otherwise, after giving Ghusl, Hunut, Kafan and Namaz-e-Mayyit it should be lowered into the sea in a vessel of clay or with a weight tied to its feet. And as far as possible it should not be lowered at a point where it is eaten up immediately by the sea predators.


624. If it is feared that an enemy may dig up the grave and exhume the dead body and amputate its ears or nose or other limbs, it should be lowered into sea, if possible, as stated in the foregoing rule.


625. The expenses of lowering the dead body into the sea, or making the grave solid on the ground can be deducted from the estate of the deceased, if necessary.


626. If a non-Muslim woman dies with a dead child, or soulless foetus in her womb, and if the father is a Muslim then the woman should be laid in the grave on her left side with her back towards Qibla, so that the face of the child is towards Qibla.


627. It is not permitted to bury a Muslim in the graveyard of the non-Muslims, nor to bury a non-Muslim in the graveyard of the Muslims.


628. It is also not permissible to bury the dead body of a Muslim at a place which is disrespectful, like places where garbage is thrown.


629. It is not permissible to bury a dead body in a usurped place nor in a place which is dedicated for purposes other than burial (e.g. in a Masjid).


630. It is not permissible to dig up a grave for the purpose of burying another dead body in it, unless one is sure that the grave is very old and the former body has been totally disintegrated.


631. Anything which is separated from the dead body (even its hair, nail or tooth) should be buried along with it. And if any part of the body, including hair, nails or teeth are found after the body has been buried, they should be buried at a separate place, as per obligatory precaution. And it is Mustahab that nails and teeth cut off or extracted during lifetime are also buried.


632. If a person dies in a well and it is not possible to take him out, the well should be sealed, and the well should be treated as his grave.


633. If a child dies in its mother's womb and its remaining in the womb is dangerous for the mother, it should be brought out in the easiest possible way. If it becomes inevitable to cut it into pieces there is no objection in doing so. It is, however, better that if the husband of the woman is skilled in surgery the dead body of the child should be taken out by him, and failing that, the job should be performed by a skilled woman. And if that is not available, a skilled surgeon who is the mahram (one with whom marriage cannot be contracted) of the woman should do it. And if even that is not available a skilled man who is not mahram (one with whom marriage can be contracted) should remove the dead child. And if even such a person is not available the dead body can be brought out by any unskilled person.


634. If a woman dies and there is a living child in her womb, it should be brought out in the safest possible way, even if there be no hope for the child's survival. The body of the mother should then be sewn up.


Mustahab Acts of Dafn
635. It is Mustahab that the depth of the grave should be approximately equal to the size of an average person and the dead body be buried in the nearest graveyard, except when the graveyard which is situated farther is better due to some reasons, like if pious persons are buried there or people go there in large number for Fateha.


It is also recommended that the coffin is placed on the ground a few yards away from the grave and then taken to the grave by halting three times briefly. It should be placed on the ground every time and then lifted before finally it is lowered into the grave at the 4th time. And if the dead body is of a male, it should be placed on the ground at the 3rd time in such a manner that its head should be towards the lower side of the grave and at the 4th time it should be lowered into the grave from the side of its head. And if the dead body is of a female it should be placed on the ground at the 3rd time towards the Qibla and should be lowered into the grave sidewise and a cloth should be spread over the grave while lowering it. It is also Mustahab that the dead body should be taken out of the coffin and lowered into the grave very gently, and the prescribed supplications should be recited before and during burying the dead body; and after the dead body has been lowered into the niche, the ties of its shroud should be unfastened and its cheek should be placed on earth, and an earthen pillow should be done up under its head and some unbacked bricks or lumps of clay should be placed behind its back so that the dead body may not return flat on its back. Before closing the niche, the person reciting the talqin should hold with his right hand the right shoulder of the dead body and should place his left hand tightly on its left shoulder and take his mouth near its ear and shaking its shoulders should say thrice: Isma' ifham ya .......here the name of the dead person and his father should be called. For example, if the name of the dead person is Muhammad and his father's name 'Ali it should be said thrice: Isma 'ifham ya Muhammad bin 'Ali. And then he should say: Hal anta 'alal 'ahdil lazi farqtana 'alayhi min shahadati an la ilaha illal lahu wahdahu la sharika lah wa anna Muhammadan sallal lahu 'alayhi wa Alihi 'abduhu wa Rasuluhu wa sayyidun nabiyyina wa khatamul mursalina wa anna 'Aliyyan Amirul mu'minina wa sayyidul wasiyyina wa imamu nif tarazallahu ta'tahu 'alal 'alamina wa annal Hasana wal Husayna wa 'Aliyyabnal Husayni wa Muhammadabna 'Aliyyin wa Ja'farabna Muhammadin wa Musabna Ja'farin wa 'Aliyyabna Musa wa Muhammadabna'Aliyyin wa 'Aliyyabna Muhammadin wal Hasanabna 'Aliyyin wal Qa'imal hujjatal Mahdi salawatullahi 'alayhim a'i'mmatul mu'minina wa hujajullahi'alal khalqi ajma'ina wa a'immatuka a'immatu hudan abrar ya ........(here the name of the dead person and his father should be called) and then the following words should be said: Iza atakal malakanil muqarraabani Rasulayni min 'indillahi tabaraka wa ta'ala wa sa'alaka 'an Rabbika wa 'an Nabiyyika wa 'an dinika wa 'an Kitabika wa 'an Qiblatika wa 'an A'immatika fala takhaf wa la tahzan wa'qul fi jawabi hima, Allahu Rabbi wa Muhammadun sallal lahu 'alayhi wa Alihi nabiyyi wal Islamu dini wal Qur'anu kitabi wal Ka'batu Qiblati wa Amirul mu'minina 'Aliyybnu Abi Talib imami wal Hasanubnu 'Aliyyi nil Mujtaba imami wal Husaynubnu 'Aliyyi nish-shahidu bi-Karbala imami wa 'Aliyyun Zaynul 'Abidina imami wa Muhammadu nil Baqiru imami wa Ja'faru nis Sadiqu imami wa Musal Kazimu imami wa 'Aliyyu-nir Riza imami wa Muhammadu nil Jawadu imami wa 'Aliyyu nil Hadi imami wal Hasanul 'askari imami wal Hujjatul muntazar imami ha ula'i salawatullahi 'alayhim ajma'in A'i'mmati wa sadati wa qadati wa shufa-a'i bihim atawalla wa min a'daihim atabarra'u fid dunya wal akhirati thumma i'lam ya ....... here the name of the dead person and his father should be called and thereafter it should be said: Annal laha tabaraka wa ta'ala ni'mar-Rabb wa anna Muhammadan sallal lahu 'alayhi wa Alihi ni'mar Rasul wa anna 'Aliyyabna Abi Talib wa awladahul ma'suminal A'i'mmatal ithna 'asharah ni'mal A'i'mmah wa anna ma ja'a bihi Muhammadun sallal lahu 'alayhi wa Alihi haqqun wa annal mawta haqqun wa suwala munkarin wa nakirin fil qabri haqqun wal ba'tha haqqun wan nushura haqqun wassirata haqqun wal mizana haqqun wa tatayiral kutubi haqqun wa annal jannata haqqun wan-nara haqqun wa annas sa'ata a'tiyatun la rayba fiha wa annallaha yab'athu man fil qubur. Then the following words should be said: Afahimta ya .... (here the name of the dead person should be called) and thereafter the following should be said: Thabbatakallahu bil qawlith thabit wa hadakallahu ila siratim mustaqim 'arrafallahu baynaka wa bayna awliya'ika fi mustaqarrim min rahmatih. Then the following words should be uttered: Alla humma jafil arza 'an jambayhi vas'ad biruhihi ilayka wa laqqihi minka burhana Alla humma 'afwaka 'afwaka.


636. It is recommended that the person who lowers the dead body in the grave should be Pak, bare-headed and bare-footed and he should climb out of the grave from the feet side. Moreover, persons, other than the near relatives of the deceased, should put the dust into the grave with the back side of their hands and recite the following: Inna lillahi wa innailayhi raji'un. If the dead person is a woman, her mahram and in the absence of a mahram her kinsmen should lower her in the grave.


637. It is Mustahab that the grave be square or rectangular in shape and its height equal to four fingers' span. A sign should be fixed on it for the purpose of identification and water should be poured on it, and then those present should place their hands on the grave parting their fingers and thrusting them into earth. Then recite Surah al-Qadr 7 times and pray for the forgiveness of the departed soul and say: Alla humma jafil arza 'an jam bayhi wa as'idilayka ruhahu wa laqqihi minka rizwana wa askin qabrahu min rahmatika ma tughneehi bihi 'an rahmati man siwaka.


638. It is Mustahab that when the persons who attended the funeral have departed, the guardian of the dead person or the person whom the guardian grants permission should recite the prescribed supplications for the dead person.


639. It is Mustahab that after the burial, the bereaved family is consoled, praying for their well being. However, if the condolence is given long after the event, and if it serves to refresh the sorrowful memories, then it should be avoided.


It is Mustahab that food be sent to the members of the family of the deceased for 3 days. It is, however, Makrooh to take meal with them in their homes.


640. It is also Mustahab that a person should observe patience on the death of his near ones, especially on the death of his son, and, whenever the memory of the departed soul crosses his mind, he should say: Inna lillahi wa inna ilayhi raji'un and should recite the holy Qur'an for the sake of the departed. A man should visit the graves of his parents and pray there for the blessings of Allah for himself and should make the grave solid so that it may not be easily ruined.


641. As a matter of precaution, one should refrain from scratching one's face or body, or uprooting one's hair to display the grief. However, slapping one's head or face is permitted.


642. It is not permissible to tear one's clothes on the death of anyone except on the death of one's father and brother, though the recommended precaution is that one should not tear one's clothes on their death also.


643. If a wife mourning the death of a husband scratches her face causing blood to come out, or pulls her hair, she should, on the basis of recommended precaution, set a slave free, or feed ten poor, or provide them dress. And the same applies when a man tears his clothes on the death of his wife or son.


644. The recommended precaution is that while weeping over the death of any person one's voice should not be very loud.


Namaz-e-Wahshat (Prayers to be offered for the departed soul on the night of burial)
645. It is befitting that on the first night after the burial of a dead person, two Raka'ats of wahshat prayers be offered for it. The method of offering this prayers is as follows:







646. Wahshat prayers can be offered in the night following the burial of the dead body at any time, but it is better to offer it in the early hours of the night after 'Isha prayers.


647. If it is proposed to transfer the dead body to some other town or its burial is delayed owing to some reason, the wahshat prayers should be deferred till the first night of its burial.


Exhumation
648. It is haraam to open the grave of a Muslim even if it belongs to a child or an insane person. However, there is no objection in doing so if the dead body has decayed and turned into dust.


649. Digging up or destroying the graves of the descendants of Imams, the martyrs, the Ulama and the pious persons is Haraam, even if they are very old, because it amounts to desecration.


650. Digging up the grave is allowed in the following cases:
--When the dead body has been buried in an usurped land and the owner of the land is not willing to let it remain there.
--When the Kafan of the dead body or any other thing buried with it had been usurped and the owner of the thing in question is not willing to let it remain in the grave. Similarly, if anything belonging to the heirs has been buried along with the deceased and the heirs are not willing to let it remain in the grave. However, if the dead person had made a will that a certain supplication or the holy Qur'an or a ring be buried along with his dead body, and if that will is valid, then the grave cannot be opened up to bring those articles out. There are certain situations when the exhuming is not permitted even if the land, the Kafan or the articles buried with the corpse are Ghasbi. But there is no room for details here.
--When opening the grave does not amount to disrespect of the dead person, and it transpires that he was buried without Ghusl or Kafan, or the Ghusl was void, or he was not given Kafan according to religious rules, or was not laid in the grave facing the Qibla.
--When it is necessary to inspect the body of the dead person to establish a right which is more important than exhumation.
--When the dead body of a Muslim has been buried at a place which is against sanctity, like, when it has been buried in the graveyard of non-Muslim or at a place of garbage.
--When the grave is opened up for a legal purpose which is more important than exhumation. For example, when it is proposed to take out a living child from the womb of a buried woman.
--When it is feared that a wild beast would tear up the corpse or it will be carried away by flood or exhumed by the enemy.
--When the deceased has willed that his body be transferred to sacred places before burial, and if it was intentionally or forgetfully buried elsewhere, then the body can be exhumed, provided that doing so does not result in any disrespect to the deceased.

i appreciate this foundational explanation of things, even with pickled brain cells, stinging red eyes, hugely swollen legs, feet, arms, and hands, a fever born, no doubt, from internal combustion.  even with a raw, infected incision, and a portacath that barely works -- that won't deliver any blood but will, with sassy sweet talk, accept ingoing things. 

a cat is sitting on my head, kneading, "making muffins."  another cat is safely tucked under my chin. 

there is a marmy-fluffy-butt type cat patrolling the banks of the murky moat waters beneath the drawbridge -- raised now, for we are maintaining heightened security here at marlinspike hall, deep, deep in the tête de hergé (très décédé, d'ailleurs).

making chum of bin laden may have repercussions.

In the first Raka'at, after reciting Surah al-Hamd, Ayatul Kursi should be recited once and in the second Raka'at, Surah al-Qadr should be recited 10 times after Surah-al-Hamd; and after saying the Salam the following supplication should be recited: Alla humma salli 'ala Muhammadin wa Ali Muhammad wab'ath thawabaha ila qabri ......(here the name of the dead person and his father's name should be mentioned).