Just Sound, Just Noise

ARCHANGEL SAMAEL

While in ICU in February, I hallucinated pretty much nonstop, with a full soundtrack for the rich visual tapestry I wove, ostensibly to force a measure of sense into a nonsensical situation.  The problem actually began back in January, a few days after the first surgery in this series [of what I pray to be three!].

Initially, the issue was confined to my ears and my hearing;  There were no outside actors, no severe yellows or oranges, no vest-wearing flight attendants in lieu of breezy, unconcerned nurses.  Just sound, just noise.

The talented infectious disease folk determined then that Vancomycin was the culprit, given its reputation for ototoxicity.  Also, and I'd forgotten this, I'd had the same reaction before.

What is it like, auditory hallucination?  For me, the bizarre results stem from the meshing of tinnitus and distortion -- with the major push toward insanity coming from hyperacusis.  It translated into the sound of a Paul Revere copper-bottomed kettle in the early moments of its first, hesitant whistle.  It adopted the hushed wheeze of a pneumatic door, closing. [As a gimp in a wheelchair, I have intimate knowledge of AutomaticCautionDoors -- the name meant to be crowed without a breath, but with concupiscence, since I love AutomaticCautionDoors, and I wants me one.]

There was never any confusion about whether I heard things in the world [kettles and doors] or the utterances of people.  The weirdest detail of all this weirdness was that people never spoke with autonomy.  No, they echoed -- they echoed what I said or the verbiage spilling from the television.  When visible, they expressed themselves normally and I perceived them normally.

For example, nurse Juanda [a wonderful clinician, a delightful person] might stand at the foot of my bed, explaining the steps of giving a blood transfusion.  I see her as she is;  I hear what she says, and only what she says, except for the sonorous background of whish:whish and spiky-squeal:spiky-squeal.  The door to my room is closed, a state I try desperately to maintain, for it keeps out the subjects, and objects, too, of my auditory hyperacuity.

Juanda, unfortunately, is one of the worst when it comes to flying out the door and leaving it wide open, leaving my mouth in a Big-O of Oh-No, for now I am subject to the whims of noise in the hall and at the nursing station.

So, although now absent, Juanda's garbled talking to her colleagues mixes with whish:whish and spiky-squeal:spiky-squeal.  Alone in my room, sliding around in that ridiculous bed, I mutter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

And I promptly hear Juanda (sometimes also a chorus of cohorts) repeat, in singsong style, with laughter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

There was often another effect, one that is even more challenging to describe.  Maybe you will understand... a sound warp?  No?  How about the wah wah wah of Charlie Brown's teacher?  Better?  Okay, well, take that effect and imagine her wah wah wah as a small portion of my echo -- imagine "damn it, Juanda" in wah wah wah form, but really, really LOUD, and only on one side of your head.  It was confined to my right ear area... and I say "area" because, honest to God, it seemed to come mostly from my jaw.

[Why not be honest?  I sound like a total nut already!]

While it was reassuring to be told that I'd not descended into some snake pit of mental illness, I was scared by the warning that these changes might be permanent.  I became an instant introvert, sucking a bit on my lower lip, and humming.  The cure for Eerie Echos was to simply say nothing, a cure wholeheartedly supported by a weary Fred, who looked on the verge of collapse, and whose body visibly jerked whenever I barked, "Did you hear that?"

They switched antibiotics and the weirdness disappeared.

The experience in February? You, Dear Readers, will be the first to hear about it -- although I did offer a sanitized version to a couple of people.  As caretakers, doctors, and nurses have regaled me with stories of "how [I] almost died," I've been able to piece together the "real" events behind what I hallucinated, with the resultant conviction that reality does not matter.

Here's what happened [and you may debate "happened" within the familiar decor of your own brain]:

There were four angels trying to save my life.  Heavy blocks of concrete, each block bound with orange plastic ties, were attached to my arms and legs.  I was caught in a mesh of girders, spikes, construction-themed stuff, and by caught, I mean, impaled, conjoined, pierced, smushed.

There was, however, no pain.

After a day or so of struggle, the five of us concluded there was no good outcome available, that I would have to die.  It was imperative, however, that my body be set free of the blocks, the shards, the spikes, the nails and bolts and beams.

The four angels said I must be flailed, alive.  The four angels said that I must then be deboned, alive.  [Yes, I am aware of the easy resonances of these torturous words with the state of my health, with my orthopedic prospects, even -- I am warned about the possible outcome of a flail arm, for instance.]

They handled the flailing.
But I was in charge of my own deboning, my own disarticulation.

There was music, lovely music, and interludes during which we all slept.  They kept me comfortable, floating in the air, in fact, by the soft, soaring music that originated in those angel minds.

"Why do you insist on speaking?  Talk to us as we talk to you."

Every now and then, filtered through my hallucination, came the words of the doctors and nurses trying to help me:  "What are you doing?  What are you trying to do?"  Mostly I heard them during the many frazzled, failed attempts to remove the heavy weights from my arms and legs, to understand how they were strapped to me, so that, through some blueprint or other, I could unstrap them.  And throw them.  I remember wanting to throw them.

There was some incidental, ridiculous drama, involving a radioactive blast.  You know, the usual.

The thing was... I wouldn't die.  The four angels were distraught.  I must also have been pretty depleted, psychically, because the story devolved in stark fashion at this point.  That's right, there were firearms and my head was the designated target.

Wusses, the angels.  They said their goodbyes (promising me sight of the Face of God as a reward for the chutzpah displayed in all that flailing and dissection), passed the gun back and forth, talked a good bit about some soap opera, and then concluded that they couldn't do it.

Yes, the hallucination must have been breaking down at that point, because, in addition to hearing the woes of soap opera characters, I had this reported conversation with one of the "intensivists":

Intensivist:  Why are you waving your hand?
Me:  I'm trying to help.
Intensivist:  Help who?  Do what?
Me:  Help them.  Help them shoot me in the head.

My logic was impeccable.  The angels were seated, of course, out in the hall, in shabby collapsible chairs, looking for all the world like almost drunk fishermen in the muddy low water of a local lake.  Maybe the sun was in their eyes.  Maybe they were tired -- some of them had had to leave during the night to tend to other near calamities -- and their vision, as a result, was not so sharp.  So I put my hand behind my head and wiggled my fingers with joy and abandon, hoping that would relieve the angst of having to aim.  Just blow away the jittery appendage dancing behind my curly hair, and all would be well.

The next thing I knew, my eyes opened, and an intensive care cubicle emerged, neat as a pin, full of beeps and alarms, cream colors, and green, with a window looking out on a brick wall.

I said, out loud:  "I got to meet the angels, die, and live, too?  Wow."

I remained crazy for a few more hours, but it was a fun crazy.  One of the cooler angels had promised, should the Face of God thing not work out, some quiet and a pickleback.  That's right, a shot of Jameson's chased by a fine pickle juice, all wrapped up in a plush silence.

whish:whish
spiky-squeal:spiky-squeal

whish:whish
spiky-squeal:spiky-squeal

The various theories?  I had a raging infection -- a large pocket of infectious goo had gone undetected during January's surgery -- a high fever, dehydration, out of control CRPS, jerkjerkspasmspasm, all served up by two falls on the cold, hard bathroom floor.

My favorite part of the fairy tale?  Because the hospitalist could not be bothered with the list of meds in records dating from all of two weeks prior, because she didn't decipher the careful etching on my MedAlert necklace (particularly the notation of adrenal insufficiency), because no one consulted the medication list in my wallet (nor the CD-ROM of my medical history, one of the benefits of frequenting MDVIP), I went without stress dose corticosteroids, methadone, Cymbalta, and other pharmaceuticals whose abrupt withdrawal cause... hallucination.  Among other things.

I've spared you, and myself, Dear Reader, with this abridged account of the goings-on.  There was nary a mention of how I emerged from those flailing and deboning sessions convinced that I had but one eye, and no nose.  That my surgeon had shortened my feet.

When they transferred me to a regular room, I was convinced that we were rolling through scenes from a Cirque du Soleil performance.  Oil paintings of hospital founders and benefactors winked and nodded as we passed.  Workers clad in pink and blue scrubs did quick little dance steps, dipping their chins and eyes in the demure pleasure of movement.

And when the glass of water and leftover iced tea from a missed lunch turned out to be only water and tea, not Jameson's, and not pickle juice, I was able to smile.

It comes off as sounding like profundity, implying great meaning, these stupid little stories.  People worry to hear the strange details, not understanding that clues from the environment played as much a starring role as the weirdness of my psyche.  The way I choose to see it, my brain's job is to make sense of things.  Increasingly, the means by which to do this are in short supply.

the momentous visit to the famed clinic at the renowned institute

I meant to try and blog the details of Thursday's momentous visit to the famed clinic at the renowned institute... but I had my well-known reaction of collapsing afterward.  Indeed, Fred and I were still good for nothing yesterday, and it is early in this day yet.  He's gotten up and gone back to bed several times already.

We were invested body and soul in that visit.

Wednesday night, having trouble relaxing, finding sleep impossible, I went on the prowl for an old online friend from four or five years ago.  Matt has CRPS and is a brainiac, as he understands the intricacies of neurochemistry, pharmacology, physiology and all that schtuff -- plus he has that admirable attribute of being a calm fellow. 

Calm, but even so, obsessive. To his attractive equanimity, I was a pressure-valve release.  He could laugh as I intuited my way through hard science and discussed politics and cats in the same breath as dystonia and neurogenic skin ulcers. 

I went off into my own obsession as the infection in my bones insisted on Star Status, Center Stage, requiring that I be RingMaster of that Three Ring Circus.  Plus, my Hawaiian-shirted neurologist continued to harp on the necessity of not getting involved with online CRPS "communities." He worries that people in so much pain will simply suck the life and hope out of each other...   I've seen that happen, and worse.  I cringe when a "RSDer" decides to reveal all to some poor newcomer to the disease, coloring what might be opportunities as wastes of time and introducing the concept of "The Monster."   One day, I'll try to put together something cogent about "CRPS, The Monster."

Although he wears sandals in December, my neurologist is right.  What sense does it make, when pain and disability are busy limiting the scope of your life, to align yourself with people in the same plight, or worse?  It's like desiring to see farther and clearer by adding a filter of smeared vaseline to your lenses...

Odd that an optical analogy presents itself to my mind.

I was truly suffering with my eyes, also, on Wednesday night.  The new drops, Combigan, are kicking my booty.  Who knew (apparently, lots of people, just not moi) that eyedrops could wreck a person so?  Within minutes of using them, my energy level drops from Pathetic to Abysmal, and I want nothing more than to assume the fetal position for a few hours, in between spurts of horizontal vertigo that have me attempting to latch on to air. 

Of course, coloring all that wordy perception is the simple complication of hypoglycemia.  My relationship with blood sugar is perplexing, and is the only thing that I totally rely on my doctor to decipher -- because it stopped making sense to me years ago.  I don't technically have diabetes, but I have diabetes.  As in, my blood sugars are high due to corticosteroids, and then pushed higher by infection.  Not even insulin will bring it down some days -- prednisone and pus-y bones can do that.  However, when I take a round of antibiotics that knock the infection/inflammation back a bit, I have to remember to also cut back on the long-acting insulin formulation that I take twice a day -- or I might drift off in a deadly haze of plummeting blood sugars.

And drift off I have, several times now.  Thanks to violent shivering, I do manage to claw my way back to consciousness, and -- eventually -- to the realization that I need glucose, NOW.  An additional personal oddity?  In this state, I usually launch into some complicated preparation that will require a good hour of studious cooking before a single bite is at hand.  Yes, I will walk by a ready stash of hard candy, ignore the thirsty, stylized come-ons of the orange juice in the fridge, and proceed to whip up a batch of, say, onion bahji -- the traditional hypoglycemic rescue food. 

All of which to say that I was a bleeping mess come Thursday -- thoroughly dispirited, hypoglycemic, eyes inflamed and, honestly, pretty dim, too.  (I don't know how, exactly, but a blood pressure that rang in at a robust 200/110 probably contributed to my feeling a tad strange.)

Despite having spent a good portion of the past three years hanging out in waiting rooms and infusion centers overlooking the same street we were seeking, we got lost.  Fred needed to curse and bang the wheel, so that brief foray into uncharted territory was good for him.  Not so much for me, perhaps, although we had no clue at that moment that my various inner pressures nearing meltdown numbers... be they high, be they low!

It turns out that my cocky conclusion of having been to this clinic before was wrong.  That is a good "wrong," for a change.  My experience at the prior joint, back in 2004, while not horrendous, was not something I was anxious to repeat.

The famed clinic is actually located on the esteemed ground floor of the world-renowned hospital, whose purpose is specializing in "medical treatment, research and rehabilitation for people with spinal cord injury or brain injury."  As you enter the main building, you pass a statue, bronze, I think.  It's of a young man in a wheelchair, testing the heft of a javelin that he holds in his right hand, while his left steadies the rim of a wheel.

That sculpture bothered me.  While trying to find a picture of it to share here, I encountered others who seemed to share my discomfiture.  One person, trying really hard to name the problem, posited that there was too much of a disconnect in a modern athlete as occupant of a clearly modern and sleek chair -- for the rendition to be in bronze.  I give that critic an "A" for effort!

The problem with the damn thing is having to face it straight away, first thing, on your first entry to the joint, on your first day, you know?

Me, I have issues with the whole "exceptional people" commandment that drives many attitudes about disabled people, sick people, "disadvantaged" people, whatever the hell... And when I confess that, I can read the internal memos as they're being written up and posted.

Notice:  This woman is a lazy ingrate.

Imagine, though, that you come here knowing nothing, unprepared.  Do you think:  "Wow!  Though paraplegic, I can still become a worldclass track and field athelete!  Cool wheels!" Or do you think:  "What the fuck doe this have to do with me?  And who dressed that gimp?"

Representation is fraught with issues, is all I'm saying.

So we are directed to take a right, then a left.  As we turn into the waiting area for the Pain Clinic, we pass their Multiple Sclerosis Clinic.  There's a clinic for everything -- Seating and Wheelchair Clinic, Brain Injury Rehab, Spinal Injury Rehab, Swallowing Disorders Clinic, Urology Services.

Most everyone, except the outpatients, sports a smile and oozes that kind of kindness peculiar to hardwon equanimity.  The inpatients are almost cocky in their competence, popping wheelies and doing handstands, breaking into song and dance with the slightest provocation.  We outpatients, though, we know we have to go back out there, out past the Javelin Dude, beyond all that cozy exceptionalism back into "Meh"-Land.

I have it so easy.

There was a harried woman ahead of me in the line to sign in -- she sported that well-known short haircut of the busy woman.  Once upon a time a stylish bob, now stringy and tired, the tips of her blunt cut swing down to cover her cheeks as she corrects an address and provides a new identification number for her son's insurance.  He is tall and rangy, a stick figure painstakingly shackled to the full frame of his high tech chair, controlled by breaths puffed into a straw.  The angle of his head to his neck, and all that to the line of his shoulders make him look like an incomplete assembly.  Like maybe there are some pieces missing that are stashed in his backpack.  But no one stopped to reattach his head to his neck or to correct the impossible angle of his left knee, wrongly twisting away from the descending bones of his lower leg.  And why do these creatures always seem to be staring at the ceiling, and drooling?

They called his name before his Mom was done fixing all the forms, which had the effect of making her spill the contents of her fanny-pack, her hands shaking, as she tried to make off with the Sign In pen, to the consternation of the Sign In Nazi.  Her son blew a righteous puff and sped past her to the waiting nurse and the inner sanctum of The Clinic, Mom eventually bobbing and weaving in his wake.

I thought of all that went into just getting there.  Of how carefully she had organized her fanny-pack, of how painstakingly she had cleaned him, changed him, shaved and dressed him, done his respiratory toilet, all the while murmuring lists, questions, and magic words for the doctors who would breeze in, breeze out.  I thought of how tired she must be.  I did not dare think of him in terms of words, at all.  When I tried, I got a great big noisy nothing.

They wanted urine so they could do a toxicology screen but I was not able to pee enough.  I had purposely not taken any Lasix that morning, not wanting to have to go to the bathroom while we were out!  Despite my good faith offering, the nurse gave me a calculating glare.  I told her I'd try again when I was leaving... but I forgot.  I don't think it will matter as I was not there trying to score a script -- No, I was there trying to score some Special K, and intravenously, too!

I lie -- the nurses were all wonderful, and very kind.  They make the visit as easy as is possible, even those aspects involving paperwork and insurance contact.  Never have I experienced such confident, blithe assertions that there would be "no problems with the insurance, just leave it to us!" My jaw kept hitting the floor...

Asked whether I needed help putting on a gown, I allowed as to how that wouldn't be necessary because I wouldn't be disrobing.

Not even a flicker of annoyance on their part!  They knew then that my vital signs were not cooperating and that my smile involved not just ill-suppressed joy but also gritted teeth.  Plus, the purplish-black legs were a dead giveaway.

Suddenly afraid that by refusing the gown I would be labelled, I offered to do it if the doctor really insisted... but in lieu of his insistence, I got the doctor himself, not bothered and going straight to work.  My records had been faxed, my Go-To Guy had authored a personal plea, and I made sure to reach for his hand and establish a firm character.  Unfortunately, I also yelled "ow!"

It only took about 20 minutes for him to size me up, even less for me to figure him out.  There were two nurses present, one his assistant, the other from the infusion center where the ketamine is meted out.  As usual, worries centered on the unresolved bone/joint infections and my overall crappiness.  I felt my hope dying and tried to fix a polite expression on my face and think of nothing much...

Then he was saying, "Let's give it a shot."

Blink.  Blink.  Blink?

Excuse me.  Excuse me?

"The only thing is... you have to be realistic." So he did his Five Minutes On Realistic... and I sat there grinning like a fool.

I missed almost everything he said and had to ask the nurses to stay when he left and fill me in!  They were extraordinary, offering tips for my first experience with subanesthetic ketamine.  Normally, the doctor "consents" patients in the clinic before they come for the infusions.  He had refused to do that with me, requiring that an i.v. catheter be successfully placed before he'd go through that process.  In fact, most of his concern seemed to be about i.v. access, to the extent that he insisted I get a permanent port if I decided to continue after the first infusion.  ("If"!)  He would go into more detail about dose and scheduling options if I actually have some pain relief from the first infusion.  ("If"!)

You see, I have not entertained even a moment's doubt that this was going to work. 

That's right -- I can write about geeks and disabled people missing parts, demeaning this, demeaning that, but don't get between me and a chance.

In my opinion, this is the very first chance I've had to beat CRPS.  The first in almost 10 years of incessant pain and ever-increasing disability.  Ten years of profound depression, loss of career and colleagues, the amazing and magical disappearance of both family and friends, the suffocation of any and all vestiges of intimacy... well, you get the Pathetic Picture.  If you don't get it, I refer you to almost any week's worth of posts in this blog.

There followed some nit-picky detail work, including a trip to the pharmacy and some scouting of the area to smooth out the wrinkles of our next visit.

I was giddy with happiness;  Fred was shocked, taken aback.  He did not think they would admit me to the program.  Not to worry, though, I wore him down with the persistence of my joy!

Back in the day -- you know, code for when I used illegal drugs but still managed to excel in almost every endeavor -- I did not much mess with strong hallucinogens.  Fred has been evil, enjoying my anxious wriggling as he regales me with tales of giant insects patrolling the walls, mandibles clicking...

Yesterday, just as I was regaining my balance and telling myself I'd probably not hallucinate at all, not one bit, nary a millisecond... When I hit upon a woman's facebook page wherein she shares her experiences with this treatment.  At the hands of the same doctor, at the same rehab hospital.

Oh my God, oh my God, oh my God!  It involved her becoming an avenging angel styled after a character from the movie Avatar, green bubbles, and vomiting.  Lots of vomiting.



Please pray for my sorry hallucinating ass come next Monday, March 14!  Pray, especially, that if I am doomed to become some movie personnage, that I not dip into my cache of Mad Max obsessions.  Aunty Entity might just claw her way out as soon as we hit the 100 milligram mark of that special, special K. Or Mighty Wez...