September 21 — International Day of Peace a.k.a. Cut Tony’s Spinal Cord Open And Give Him a Shunt For That Syringomyelia Thing Day

waiting room

3 a.m. — Yes, 3 a.m.. For whatever reason surgery is best done before dawn like fishing and surfing.  Unfortunately a quadriplegic doesn’t just open the eyes, throw on some sweats and get out on the road with commuter cup of coffee in hand.  No, I open my eyes, catheterize, stretch, throw on some sweats, get in the chair and go… commuter cup of coffee not in hand.  One hour minimum.  2 1/2 hours eyes open to go on an average day.  So, yeah, I may get up before you, but no doubt when I’m at last ready to roll up to that pink box of a baker’s dozen, you’ll have beaten me to the best donuts.

4:15 a.m. — Thirsty, hungry (you know the presurgery drill) and on the 405 heading to Santa Monica.  Oil refineries actually look kind of cool in the dark.  Come to think of it, most of that part of the 405 looks better in the dark.  I must be slightly nervous because I have the chills.  Hadn’t noticed signs of nervousness until that moment.  No… seriously.

5 a.m. — Check-in at UCLA Medical Center.  “We have private rooms available for a little extra charge.  Would you like one?”, the woman asks as she takes down all my presurgery information; name, insurance numbers, power of attorney.  A vision of the humongous, wheezing carp man flashes before my eyes.  “Absolutely”, I say.  “What box do I check?”.

5:20 a.m. — Surgery is a group hug.  Or at least that’s how it seems, as a group of about 15 of us are led on a winding Wonka-esque tour through hallways and eventually into an elevator by a cheerful nurse/guide/Oompa-Loompa.  “We’re newlyweds.”, the cute girl says to me, crammed into the corner hugging her husband.  “Really?”, I say. “Well, I hope this isn’t your honeymoon”.  Next stop: the surgical on deck circle.

5:45 a.m. — After hearing more details about my skiing addiction and yoga-style stretch routine, the surgeons reconvene and decide to move the surgery down a couple of vertebrates.  I wasn’t privy to the meeting, but I’m told it looked like a football huddle over MRIs.  Medical X’s and O’s. I’m impressed that such a major shift in surgical plans could be done so last-minute. I’m tapped and ready for the drugs.

6 a.m. — Begin the begin.  Here we go!  As we enter the elevator to head to the operating room, I feel myself start to fade midconversation with the anesthesiologist.  I close my eyes… you know, just for a second and then…

12 p.m. or so — I blink and I wonder if we’re ready to do surgery yet.  Truthfully, this elevator ride is a bit of a blur, but I remember feeling talkative, happy and as my good friend said, “mellow (as in high)”.  That said, it really felt like I had just blinked — that six hours condensed into a nanosecond.  I’m still trying to wrap my head around this one, but I did have surgery… that much I know.

Approaching the break

Because I had some complications during my surgery or because, well, it’s standard procedure after something as invasive as this (leaking issues, I assume), they wanted me to spend at least one night on a monitored floor.  Which — even in my postsurgical three hours of sleep haze — struck me as something that wouldn’t be working out out in my favor.

Don’t get me wrong, I was all for the monitored floor if the docs felt it was necessary.  It’s just that the incessantly loud beeping of my 91-year-old roommate’s machines going off, every minute on the minute, whenever his heart rate went above a certain level was nothing short of a cruel joke.  I was exhausted, and between the pain, my upright position and the noise, I was finding it difficult to see the benefits of being monitored.  And this was only the early afternoon.

Sleep — despite all the chemicals bivouacked in my bloodstream — did not come.  And as the hours passed, and the absurdity of the situation seemed to grow, so did a certain challenge — how long would my uber patience last before reaching its breaking point?  In my favor, I had my beautiful, loving family and good friends to keep me company and to squeeze my Dilaudid Pez dispenser pump whenever the pain began to tip the scales, but at my disadvantage, were the hospital machinations themselves.

At 1:30 a.m, after having just slept for only an hour and a half, I was awoken from my Ambien stupor by the “Lift Team” wanting to transfer me to the special bed I was supposed to be in when I arrived in the room 13 1/2 hours prior.  Not quite all the way in my head yet, but alert enough to recognize the “Lift Team” (emblazoned on the chest of their navy blue polos) had no idea what type of surgery I’d just had — nor any understanding of my disability, let alone any clue as to what my doctor’s orders were — I, my sisters and my buddy John (more forthright and animated than I’ve ever seen him before), took it upon ourselves to “educate” the “Lift Team” on the proper way to transfer a post-spinal surgery quadriplegic from one bed to another.  30 minutes later I was safely wide-awake in my new bed ready to tackle the rest of the morning’s obstacles.

As for my roommate, I don’t think he was faring any better than I (you know, aside from the fact that he was to be able to sleep soundly through his machine’s call to arms), and quite frankly, as far as hospital roommates go, he wasn’t that bad.  In fact, I felt sorry for him.  The nurses, save one (Jing, the caffeine infused hummingbird assigned to our room), for whatever reason, treated him as some sort of demanding nuisance — which he wasn’t.  And any minor request he had, say, like, needing water or having to pee, was greeted with a crackly, impatient “yes, what do you want?”  over the intercom.

When around 4:15 a.m. he had to catheterize (I had a foley in, thank Jesus), the charge nurse — not the softness cotton ball in the bag — arrived, kit in hand, and stepped behind his curtain with officious purpose, I foretold doom.  Not a minute later, screams of pain and what I can only assume where expletives in Japanese, began filling the room and spilling out into the hallway.

“You wanted to have this done, Mr. Nakamura”, she said firmly,  “Now, please relax.  It’s not that bad”.

Okay, I’m going to interrupt things here for a second to drop a little clinical/physiological science on what’s happening behind Mr. Nakamura’s curtain for those of you out there who might be uninitiated or unfamiliar with the joys of catheterization.  Basically what’s going on is this; a sterile, “flexible” silicon/rubber catheter tube — most likely larger in diameter than the urethra — is being inserted into Mr. Nakamura’s penis, pushed up through the sphincter muscle (essentially, a closed door) and into his bladder to drain the urine.  This, I might add, under most any circumstance, is not a comfortable procedure.  I myself do it 4 times a day, but then I can’t feel any pain below my level of injury (which includes my Johnson)… Mr. Nakamura apparently can.

Now hearing the cries of pain, hummingbird nurse came darting into the room and ducked behind the curtain to see what was happening.

“You need to use more lubricant than that”.  She exclaimed.  “That’s not enough.”

“WTF?  Not enough lubricant?  Who are these people?”, I thought, wincing in solidarity.  I couldn’t believe my ears.

When the charge nurse finished with Mr. Nakamura and started to head out the door, she stopped, turned, and with a perturbed look on her face and box of urine in her hands, looked at my sisters, my friend and I and said — as if she’d just seen us together for the first time that shift; “This isn’t a lobby.  Only one person is allowed in here at a time.”

Now I say, “as if she’d just seen us together for the first time”, because she’d been in and out of the room twice already — once to take my vitals and another to take Mr. Nakamura’s, and neither time did she have a problem with our numbers.  And why should she?  My posse was quiet, respectful and above all out-of-the-way.  And not only that, they were my advocates and my company during my miserable sleeplessness phase, i.e. the 24 hours previous.  In fact, given the advocacy done by my sisters on Mr. Nakamura’s behalf, I’d say if you took a poll of the two paying residents of the room, the results would be unanimous in favor of keeping things how they were.

Don’t get me wrong, I completely understood where the sudden need to enforce the rules was coming from — she did after all just get an embarrassing lesson in the medical benefits of appropriate lubrication where a human orifice is concerned — but that’s exactly why we chose not to pay attention to her request… it came from a place not of necessity and logic, but rather out of personal frustration.  And truthfully, except for at that moment, I don’t think she really cared one way or the other.

Is that where it is?

I consider myself a very patient person — super monklike, really, if you want to get right down to it.  And that’s true.  If being a quadriplegic has taught me anything, it’s taught me that very little in my life happens the moment I want it to.  I rely on other people for just about everything, and at the very least, that means I’m subject to somebody else’s timing — however that manifests itself.  For the most part this is cool and presents me with challenges that are eternally rewarding, but there are times, say like when I’ve barely slept in over 24 hours, eaten nothing but ice chips in that same amount of time, have 23 staples in my back and am one good solid body shake away from being a Dilaudid and anesthesia fizz, that I realize I might be less than super monklike after all.

At around 11 a.m., after serving my requisite time in the monitored room, and apparently having been “rehabilitated”, a hospital representative/”care specialist” (also emblazoned on the chest of her navy blue polo) gave me clearance to move to my private room on the orthopedic wing, where they would better be able to meet my needs as a post spinal surgery “guest”.

“So they’re moving me now, yeah?”, I asked the “care specialist”, itching to be heading somewhere where I could actually get some sleep.

“Well…”, she started to say.

Uh-oh.  Here it comes.

“We’ll need to get these IVs unhooked and drain your bag, and call somebody to take you over, but that shouldn’t take very long”.  She continued.

“Cool.” I said.  But wait, didn’t she say “shouldn’t… shouldn’t take very long?”  She did.

“So we’re talking, like, 10 minutes or so, yeah?”, I asked.

“Something like that.”  She said dismissively, closing her clipboard and getting up to leave.

“Because I really need to sleep… seriously.”

“Don’t Worry, someone will be in shortly.”  She said, then disappeared from sight.

But despite her semi-placating reassurances and use of the words shouldn’t and shortly (which under normal circumstances — outside of this room — wouldn’t be ambiguous) I managed to maintain — albeit with a bit of extra effort on my part — a curious but steadfast optimism that I would indeed be moving — as she said — shortly.

At 12 o’clock, however — after many attempts at trying to hail somebody to take care of the two very simple things that needed to be taken care of in order for me to move — my optimism had waned (or should I say disappeared completely) and I began to notice a transformation taking place within me that wasn’t altogether recognizable… irritation, delirium and impatience.  Even if somebody came at exactly that moment, I knew I wouldn’t be able to sleep for at least another hour, as they would need to check my incision, change the dressing and do the whole vital thing on the other floor.  So for me, each tick of the clock represented another hour before I would get to sleep.

By 12:30 p.m. I was fast approaching my breaking point and seriously feared I would lose my shit if something didn’t happen soon.  Fortunately for me — and, I suppose everyone around me — a guy from the “moving team” showed up with a bounce in his step, an attitude to match and orders to whisk me away to slumberland.

“Ready to go, man?”  He asked.

“Yeah, like you can’t possibly know.”  I said.  “But –”

He looked at the cornucopia of bags hanging from the IV drug mobile beside me and said, “I can’t take you with these IVs like this, man — there’s no pole on the bed”.

“I know.  And they also need to drain my bag.  We’ve been trying to get someone in here for the last hour and a half to do it, but no one comes”.

“I’ll see what I can do”.  He said, and took off to wherever one would go to find staff that doesn’t want to be found.

When he returned some 10 minutes later, he was alone.  Not surprisingly, but I wanted to believe he’d have more cachet than we did wearing the hospital’s khaki dockers and blue polo shirt homage to Southwest Airlines.

“No luck, huh?”  I said, knowingly, trying not to show my sarcasm and frustration, but wanting to be real enough to connect with someone official who could rally behind my cause.

He surveyed the faces in the room — mine in particular — and like a dog or a bee who can sense fear, he recognized our impending defeat.  “I’ll try again in a couple of minutes, don’t worry.  In the meantime I’ll see if I can get a pole or this bed, man.”

“Dude,”  I said, stopping him before he could reach the door.  “Don’t leave me.  Seriously.  You’re the first person I’ve seen who wants to get me out of here.  If you get a page or something and have to go somewhere else in the hospital, and then get another one, it might be an hour or two before I see you again… and I don’t think I’m going to make it that long.  Seriously.”

He stepped back toward the bed, put his hand on the edge, smiled and said.  “Don’t worry, man… I’ve got your back”. And then stepped out of the room to look for an IV pole.

20 minutes later I was at last being wheeled down sun lit hallways by my new friend to my new room.  With each click of the wheels on the polished linoleum floor, the near coup d’état Godzilla-like anxiety that threatened to bring down this UCLA Hospital, all its satellites, Santa Monica and Tokyo was being replaced by a more benevolent Gandhi like peace.  And while I hands-down prefer my normal peace and love equilibrium to the unpredictable reptilian one, it was interesting get so close to — what I can only assume — was my tail swinging, firebreathing breaking point.

Like I said, I consider myself a patient person and so to get to where I was — not by just one thing, but an accumulation of enough little things (or large, as the case may be) lined up in the right order  — was a bit of a trick from the get go and one not likely to be repeated (knock on wood).  Even still, it’s nice to find out that whatever the circumstances might be, I’m going to have to be pushed pretty far out into the stratosphere before I’m going to want to take out Tokyo… or a local hospital.

In the end, what I’ve really hoped to set up in my protracted description of this “viscerally challenging” first day and a half  — and truthfully I can only recall about 70% of it, the other 30% is lost in a chemical blackbox somewhere in a anesthesia and its byproducts fog — is that in no small way I made it through it all because of the supportive people around me.

Despite the seemingly full frontal assault of indifference by some (knowing full well that the “institution” had something to do with this), it was dwarfed by the overwhelming concern and loving engagement of others — from the highly professional medical team that performed my surgery, to the kid who stuck around to move me to my other room, to the hundreds of folks who sent their prayers, words of support and good vibes my way before, during and after the surgery, and to the endlessly — and I do mean endlessly — mind blowing commitment and love of my friends and family who left their homes and lives not only to advocate for me, but to just be with me.

And when all is said and done — and especially after seeing the above photo — I’d walk through hellfire and back to experience that.

Big mahalos all, I couldn’t have done it without you.


4 comments on “syringomyelia: a love story ch. 2

  • “one good solid body shake away from being a Dilaudid and anesthesia fizz” – Dude, can I use that? What a stellar image!

    I’ve been looking forward to hearing the story of this procedure. I sure didn’t expect the flashbacks to stupid & ignorant charge nurses, callous aides, specially-trained transfer techs ripping stitches and leaving limbs behind, and on and on … Gad. Think I need a Valium! I had sweating nightmares about getting shanghaied back into nursing for 8 years, which is how long I was a nurse in the first place.

    I’m glad things turned out okay. Now stay out of hospitals in future — they ain’t healthy! 😉

  • I have been eagerly anticipating your post, and you did not disappoint. I read this with a smile on my face (as you intended) despite the fact that it centered around your physical, emotional and mental turmoil. Certainly I have been known to take pleasure from another’s misfortune–that trait seems deeply ingrained in the human psyche–but I think I would overdose if I ever allowed myself to fully internalize all that you’ve been through!

    Your story does confirm my growing understanding of my fellow humans: we are inadequate, and we have two choices: either work as a team to overcome individual inadequacies through collective effort, or individually try to hide, deny and ignore our inadequacies, much to the detriment of those around us. Your entourage worked as a team for your benefit (and theirs–your happiness is their happiness). Many of the individuals that you encountered live by the philosophy that while there may be no “I” in “Team,” there certainly is “me,” so therefore it is all about me.

    I hope you are on the mend.

  • As always, I loved your story. It made me reminisce about my surgery and the trials that were brought before me. You and I went through a lot of similar things with our surgeries. The first 48 hours of my hospital stay had some similarities that had me laughing and reminded me that even world class hospitals aren’t perfect. What hit home was when you asked your Docs if you could ski this winter(which is a really cool addiction BTW) and everyone laughed at you. I recall going to my three month checkup in Seattle and asking if I could get back to work. Since I do full lifts and transfers, I was laughed at too. My father and my docs looked at me like I was spirited but crazy. Hey,I felt good enough, why not? I was told that because they had to cut through my multifidus between S-1 and S-5 that I needed to work on my core before I could go back to work. I love being an attendant, it’s a huge part of my spiritual core. I had to get back to that, but it took me 6 months longer than I wanted it to. Two years later, I’m back on my feet working, doing transfers again, working out with my dog and working my way back into finishing up my education.

    All of that just to say this, be patient!!! Take your time healing, physical therapy truly is going to be key for you, I think it may help your left arm too. The cool thing about a really good PT is how in touch they are with the human body and how the mind and spirit align with that. You are truly one of the healthiest people I know in those categories and I know you’re going to be just fine. I don’t blame you for wanting to get back to the good old routine, just don’t over do it, you’ll be abusing your temple.

    I’m glad to hear you’re doing well and on the mend.

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