The beautiful thing about writing a personal blog — you know, aside from the obvious personal stuff — is the opportunity to share something useful that might pop up in a Google search (or Bing if you prefer one giant conglomerate over another).  And while that’s certainly true of this posting, it took a little time to figure out how I was going to go about it, i.e. how personal did I want to be?

In the end, however, it was kind of a no-brainer. After many less than stellar searches of my own, it was obvious if I wanted to say something useful about syringomyelia (outside of the clinical definition), then I would need to be specific to my own personal experience as a quadriplegic. Because, ultimately, that’s what would have been most useful for me.  So personal I will be.

The salad days

Up until about four years ago — aside from the whole chronic pressure sore thing (another story for another time, though there’s plenty alluded to it on this site — directly or indirectly) — things healthwise have been pretty stellar. I have a kick-ass immune system and for a C 4-5 quadriplegic — almost 30 years postinjury — I’m in excellent shape. Simply put, I take care of myself.

Still, somewhere around 2005 I started to notice some changes happening in my body, namely sensation loss below my level of injury (in my groin, er, *cough - penis - cough*).  And while the loss was spotty at first — sometimes there, sometimes not — as time wore on it grew more and more consistent, sometimes lasting for months.  Alarmed by the progression, I scheduled an appointment with my doctor and began the process of trying to figure out what was happening to me.

The first thing that was done was to get an MRI, but because my sensation loss seemed so specifically located in my pelvic region, instead of ordering a complete scan of my spine, only one of my lower back and sacrum were taken.  A decision which, as it turns out, was grossly incomplete.  Had I seen a neurologist familiar with spinal cord injuries from the beginning, instead of my physiologist, most likely a complete set of scans would have been ordered and my situation now would be markedly different.  However, that never happened, and regardless, the radiologist at the time did see something he didn’t like, but when a request was made for further, more complete scans, my insurance provider denied it out right as “redundant”.  I was then counseled by my doctor to “keep an eye on things”, and if they seemed as though they were getting worse we could give it another go then.

Fast-forward three years, and while the sensation loss didn’t appear to be spreading to other parts of my body (as far as I could tell, anyway, with my limited sensation), I was beginning to have severe neck pain, the kind of which I hadn’t known since the time of my injury.  Wrongly or rightly — and perhaps some might say consistent with my character — I endured it for almost a year more before finally admitting I needed to see a neurologist or some sort of spine specialist about it.

Around February of 2009, after meeting with spine surgeon Bobby Tay at UCSF, a new set of MRIs revealed, not only a major chaiphosis in my neck, but a condition known as syringomyelia and a massive syrinx that ran from my level of injury at C 4-5 all the way down to the base of my spine, with a syrinx to spinal cord ratio of about 95%.  It was suggested that, given its size, it had been expanding for many years (perhaps as long as 10) and was most likely the cause of both my pelvic sensation loss and my pain.

Admittedly, looking at my MRIs that afternoon, I was both relieved and nervous.  Relieved, because at last I had a diagnosis and an explanation of what was happening to me, and nervous because, well… of two things, really; one, I’m intimately familiar with what happens to a spinal cord when it’s stretched or compressed for an extended period of time — neurons die.  And two, I was told the usual solution to this problem was surgery.

Ouch. 

And while I’m not somebody who dwells on past decisions or has regrets about things I’ve done, I do like to subscribe to the philosophy; do things for the you of today that the you of tomorrow will be thankful for. Because, c’mon, really, the last thing I want the me of tomorrow saying about the me of today is, “Gee, what a f—-n’ dumb ass”.  So, yeah, it was a little difficult not to question what the hell I was thinking for so many years.

But I digress.

So, with my head spinning, I left that initial appointment with these three things:

1. a follow-up appointment with a neurosurgeon.
2. an understanding that my syrinx was probably expanding and therefore causing more damage.
3. a desire to Google syringomyelia.

Be careful what you Google for

One of the first things I discovered about syringomyelia was that it kind of exists in that gray area of medical conditions, where it affects just enough people to draw the attention of the neuroscience community and generate a few websites, but not enough to be considered “sexy” and garner mainstream attention, celebrity spokespersons and research dollars.  All of which could go a long way in advancing the further understanding of the condition and stimulate cutting edge (no pun intended) surgical techniques for treatment.

But as I’ve said on several occasions, and I think it bears repeating here, googling medical conditions is a sketchy prospect.  On the one hand you might find what you’re looking for, but on the other, you might also find what you’re looking for.  The point being, any condition you research is going to have a list of symptoms or facts ranging from the rather benign to the downright scary, and for whatever reason our attention always seems to fall on the scary.  And mine was no exception.  But since I was already dealing with symptoms that were categorically sketchy, the things I found out about syringomyelia — including the above — were less of a shock and more informative, giving me a much more pragmatic viewpoint than I had just hours before when I was looking at my MRIs in the doctors office.

Questions to answers to questions

No doubt, having an exhaustive breakdown of syringomyelia was immensely valuable, but in the end, this information felt somewhat broad.  One of the great things about the websites I visited, however, was that most had forums, and for me this is where my diagnosis got personal and began to take shape.  But unlike most forums out there (cooking, tech, what-have-you), medical forums — 99% of the time — will never be able to give you the exact answer you’re looking for.  And how could they?  Any medical condition one might have is going to come with an infinite array of unique factors that may or may not pertain directly to a clinical diagnosis.  In other words, your mileage may vary. Which is fine, if you understand this going in, otherwise, you may come away with a skewed understanding of your particular situation and a very depressing outlook on your future.  Because, medical forums are about people with problems looking for answers, they’re generally not — in my experience anyway — happy-feely places loaded with success stories.  Which isn’t a bad thing –  there are valuable nuggets of wisdom to be found from other peoples difficult experiences and/or questions, you just need to know how to apply them.

Opinions are like…

True (if you carry that expression out to its natural conclusion). But if I took anything away from my research, it was this; find a neurosurgeon experienced with syringomyelia and get several opinions.  Obvious advice, to be sure, but it’s easier said than done.  As I said above, syringomyelia is not the most common of neurological disorders, and even if it were, it’s not like I attend cocktail parties with neurosurgeons.  No, aside from Dean Chou recommended by UCSF, I had to bite the bullet, tell family and friends of my condition, and ask if they could pass on my situation to their friends and family to see if anyone knew of any good neurosurgeons.   Within two weeks — surprisingly or not so surprisingly — I had six, very well-qualified neurosurgeons to choose from.  From these, I chose to schedule appointments with three; Bruce McCormack at the Neurospine Institute Medical Group, Larry Shuer at Stanford and Langston Holly/Ulrich Batzdorf at UCLA.

From my research, among the more important things I learned before going into these appointments, was that the standard way of dealing with syringomyelia was to insert a shunt into the spinal cord to drain the cerebral spinal fluid (CSF) from the syrinx.  I pretty much knew that, unilaterally, this would be the recommended course of treatment, no matter how much I wanted to hear of some other new technique that would avoid placing this kind of hardware in my spine.  Even still, I had questions; where would the shunt be placed, how long would the surgery be and what would it entail, who would be assisting with the surgery, i.e. a physician’s assistant or another neurosurgeon, how long would I be in the hospital, how long would my recovery be once I was released, and — you know, because one has to have priorities — would I be able to ski again?

But also — and almost equally important — I wanted to get a sense of who would be working with me, i.e. did we gel and what did my intuition tell me about them — understanding full well neurosurgeons aren’t typically the most effervescent crayons in the box. In the end, however, if you’re going to be cutting into my spinal cord, I’d more than likely go with skill over a sparkly countenance, but I’m also wise enough to know you can have both… or you should at least look for it.

Of the four doctors I met with, their experience, opinion on treatment and personalities varied enough to differentiate them from one another.  The first doctor I met with, Dean Chou, suggested two shunts; one directly below my level of injury, and a second lower down, in case the syrinx was segmented.  The shunts would run from my spinal cord and drain into the cavity around my lungs, requiring another incision and procedure from the front.  Bruce McCormack recommended essentially the same thing, however, felt that two shunts were unnecessary due to the fact that syrinxes are rarely segmented.  He also felt that the shunt should drain into the abdomen region rather than around the lungs, a more typical location.  Both Larry Shuer and Langston Holly also recommended single shunts, but unlike the first two doctors both wanted me to have a CT myelogram before they could say anything specific about where the shunt would be placed.  The difference between Shuer and Holly, was that Larry Shuer also suggested that, given the extreme size of my syrinx, an alternative, more experimental procedure, which didn’t involve shunting, might be a possibility — a terminal ventriculostomy.  A suggestion that admittedly piqued my interest.

Personality wise, I felt comfortable with all four of these doctors — somewhat surprising given the aforementioned rep neurosurgeons have. But in the end I narrowed it down to Larry Shuer and Langston Holly, if for no other reason than they both requested more nuanced scans.

[Side note: I met with both Dean Chou and Bruce McCormack at the beginning of 2009 and Larry Shuer and Langston Holly at the end of spring.  At each of the initial two appointments, I asked them if surgery needed to be done immediately — my ski season was just getting under way and I wanted to know if either felt it would be unwise to put things off until it was over.  Both doctors felt the best course of action would be to have surgery as soon as possible, but that given the look of my scans, waiting a few months would probably be fine.  Each issued a caveat, however, saying that while my symptoms didn’t appear to be rapidly changing, a jarring accident could change that — there was really no way of knowing.  So in the end, it came down to risk versus reward; and since I had no idea what would happen during or after any surgery, but I knew I had the ability to ski at that time, the coarse I chose was to ski my brains out that winter/spring and let the consequences be damned. Carpe diem]

To shunt or not to shunt

Truth be told, I was having a difficult time wrapping my head around the whole shunting part of the surgery.  I understood surgery was necessary — that was a no-brainer — if I didn’t do anything things would continue to get worse, and if I had surgery, well, at least I had a chance things would improve.  But shunts — aside from the risk of infection or the fact that they usually need to be replaced at some point due to dislodgment or clogging — seemed so… oh, I don’t know… clumsy.  Which only hammered home how little was known about syringomyelia and the lack of cutting edge surgical techniques in its treatment.  Aside from that, and probably more importantly, I didn’t really see myself as the kind of guy who had hardware inside him — I see myself as a strong, healthy individual and not one who needs artificial parts to function properly.

So what to do? 

No doubt, the option to go with the terminal ventriculostomy, and avoid a shunt altogether, was appealing if for no other reason than that.  But, the caveat with that technique — aside from the surgeon who suggested it had never performed one before (which truthfully wasn’t an issue, given that either way my spinal cord would be cut into) — was the simple fact that it wasn’t done very often. And when it was, the little information I could find, seemed to suggest it was only marginally successful.  Still, the pull in that direction was strong — I really didn’t want a shunt. And besides, it could be argued, given my unique situation, I was the ideal candidate.  But if I was going to roll the dice, and be somewhat of a guinea pig, I wanted to feel confident my reasoning was sound.  Meaning; was I avoiding the shunt because I didn’t see myself as a shunt kind of guy? Or, given my extreme situation, was a terminal ventriculostomy a truly valid option?

Well, after much research, soul-searching, and the advice of a cousin of mine who’s a spine surgeon — I decided to take the more conventional route and go with the shunt.  It wasn’t an easy decision, by any means, but given the risks versus rewards — namely if it didn’t work I’d have to get right back under the knife again — it seemed like the prudent thing to do.  Of course, there was really no way of knowing what would be best, but it was a decision where — regardless of the outcome — I could live with my reasoning.

Yeah, but what about…

When ski season came to a close at the end of April, it was alarmingly clear I needed to get on with scheduling surgery. I had taken several hard spills over the course of the winter and spring, and whether or not it had anything to with my escalating symptoms of more sensation loss and weakness in my left arm (some would suggest it did), things were definitely getting worse and needed to be arrested.

However, here’s the thing; while I was mostly comfortable with my decision about the surgery — even though I had yet to choose a surgeon — what I wasn’t sure about was my postsurgical recovery.  Definitely a concern, if for no other reason than it would help me mentally prepare for what lay ahead.  The doctors said it would be about a month, but their experience was primarily with able-bodied persons — or at the very least, paraplegics — and their abilities and needs were far different from my own.  As a fairly high-level quadriplegic, just getting in and out of bed could be problematic; I have to be lifted, which, under the best of circumstances, stretches my spine — a potential issue after major spinal surgery.  Also, in order to do pressure relief while in my chair, I need to do a bit of a yoga move, where I lean over onto my knees, arms dangling at my side, with my head almost touching my toes to get the full pressure off of my butt — a  serious stretch, which, again, seemed like a potential issue after spinal surgery.

So back to the forums I went, trying to get some sort of sense of what I could expect.  And while I couldn’t find a single quad who’d gone through this type of surgery for me to bounce my questions off of (though they’ve got to be out there), I was able to get in touch with some paras, and what they said differed greatly from the prognosis my doctors gave me.  Eye-opening, to say the least; recovery — based on their anecdotes — was a rather protracted and difficult affair.  And while it wasn’t easy to hear, it was important to wrap my head around, because in the end it would serve to prepare me for either outcome — short and simple or long and challenging.

But obviously it wasn’t the short and simple that concerned me, it was the long and challenging.  And not for the reasons one might think. I’m perfectly fine with physical challenges.  Difficult or otherwise, it’s the story of my life.  But if I’m going to couple a risky surgery, that carries with it a possibility of inflicting more harm than good, with that of a protracted recovery, well, then I better be ready to commit to a new direction in my life.  Which I was (am).  But I’m also all about committing to the present moment. And at that time — despite the growing sensation loss and weakness in my left arm — I felt I was at a crossroads.  In other words, if there was something I wanted to do, I should seize the day and do it, as there were no guarantees after the surgery.

And so for about three days there, I seriously thought about packing up and going to South America or Spain.  I’d never been out of the country before (aside from surf trips into neighboring Baja) and I was perfectly willing to accept any collateral damage that came with putting off surgery in exchange for traveling with the strength and physical mobility I still had.  Don’t get me wrong, I didn’t want to lose any more function — I’m a high enough quad as it is — but like I said, the surgery was risky and came with no guarantees.

In the end, however, I decided to go with getting the surgery and put off my traveling until next year. I felt I had enough information about the recovery and faith in my own stellar health to roll the dice and attempt to arrest the problem where it was.  Sure, others had a tough go of it and, yeah, I was a quadriplegic, but damn if I wasn’t going to be some sort of postsurgical, medical journal worthy, recovery phenomenon.

The first slice

On September 21st, almost 6 months after my diagnosis, I had my surgery at UCLA with neurosurgeons Langston Holly and Ulrich Batzdorf.  Of course, I was out cold for the entire six hours of the procedure, but roughly here’s what went down (or so I’ve been told): In order to facilitate the draining of the syrinx, the surgeons cut into my back between my shoulders, cut through the dura surrounding my spine, removed some bone at T 5-6 to access my spinal cord (a location chosen for its proximity to my level of injury, but far enough away so if the spinal cord was damaged during surgery I wouldn’t lose any mobility function), inserted a 6 inch shunt into my spinal cord, which would drain the CSF into my dura and be reabsorbed back into my body, closed me up and then stapled the whole thing shut with 23 staples. Simple.

All told, I was in the hospital four days, released and spent two more weeks in Palm Desert recovering at my folk’s house before heading back to Berkeley to resume some semblance of my previous life.  As far as the recovery went, I was spot on — there were no medical hiccups and I healed quickly.  Of course, I’ve never had surgery before, so I don’t have anything to compare it to, but I’m going to go out on a limb and say, yeah, I’m some sort of postsurgical, medical journal worthy, recovery phenomenon.

The hospital stay itself, was a bit of a blur — drugs and anesthesia have a way of doing that, I suppose — but that’s probably not a bad thing considering the circumstances. Palm Desert, on the other hand, was an unexpected and memorable gift. I anticipated the benefits of being around family, but I didn’t really consider what that would mean outside of the obvious loving vibes, great food, etc..  The relaxed nature of the desert, the hot weather, not having to worry about making meals (I ate enough seafood to be rung out and used as a mercury source for a large thermometer company), allowed me to work on my only two self assigned jobs of healing and completing the first season of Dexter.

During those two weeks, I was able to get into my chair at least two or three times a day for about an hour at a time, and that was more than sufficient — any longer and my dysreflexia would kick in.  As I said above, I don’t have much experience in these matters, but I’d say if you’ve got a surgery to recover from, you might want to call the Schmiesing’s in Palm Desert.  Because truthfully, I’d say my speedy recovery owes as much to my folks’ unconditional hospitality as it does to the incredible healing abilities of my body.

Home again, home again

On October 6th, two weeks after my surgery, my staples were removed and I was given the green light by my neurosurgeons to head back to Berkeley.  At the appointment, they asked me if I noticed any changes for the better or worse, and I found the question difficult to answer.  All things considered, I felt pretty good, but until I was able to return to my normal life’s activities, I had no frame of reference.  I hadn’t exercised in two weeks, my muscles had atrophied and I was still feeling somewhat dysreflexic.  I didn’t feel any damage had been caused by the surgery, but again, it was difficult to say until things re-equalized — my sensation in general is difficult to pin down and really a matter of nuanced degrees.

My instructions for Berkeley were simple: no skiing (drag city), no pushing for at least two weeks, and then to take it slowly after that, seeing how I felt on a day-to-day basis.  Two weeks on the nose, I was back on the track, trying to pick up where I left off, but it felt as though I hadn’t worked out for about a year.  I was weak — my left arm especially, locking up every third rotation — and the time it usually took me to do a mile and a half, I could only do a mile.  My incision healed magnificently, but the affected areas from the syrinx, not so much, and it became patently obvious this portion of my recovery might take longer than I hoped.

But how much?

That was then, this is now (December 11, second follow-up appointment et al.)

“So when you say subtle changes for the better, what exactly do you mean?”  I asked my doctor.  “Subtle seems kind of vague… like the word may.  Like in a news story; “the bag may have contained heroin.”  Which is true.  But it may have also contained donuts.  So is subtle something I could see?”

The doctor smiled slightly, getting my meaning. “Yes.  There’s a subtle change in the size of the syrinx at the base of your spine and up towards the level of your injury.  It shows up as more definition on the MRI.”

“Cool.  A little better is better than a little worse.  But is it going to drain more?”

“It should. Typically, in cases such as yours, and for reasons we don’t quite understand, the drainage at this early stage is slight, but in the coming months we should see a more substantial decrease in the syrinx’s size.”

“But what about my arm?  It definitely feels weaker than before the surgery.  Especially when I’m on the track pushing, it’s almost like it becomes paralyzed or something.”  I demonstrated my pushing motion.  “Every fourth push or so, I have to stop, wait a second, let it recharge, and then go again.  It’s very frustrating.”

“Well, there’s nothing on the MRI to suggest it’s neurologically related to the syrinx, so perhaps it’s a fatigue issue with your deltoids.  Try drinking some Gatorade a half-hour before you work out and see if that helps.”

“Gatorade?”  I laughed, almost in disbelief.  “You think it’s an electrolyte thing?”

“Perhaps, but it’s all I can suggest at the moment.  Give it a try”.

Okay, so I was expecting something a little more neurological from my neurosurgeon, but okay, Gatorade, I can go with that.  It’s a bit low-fi, but it’s simple enough to put into action.

“So, can I ski this winter?”

Say yes.  Say yes.  Say yes.

“I don’t think that would be a good idea, no.  It’s still too early.”

“What about spring?”.

“Maybe.  Let’s see how the MRIs look in March and we’ll discuss it then.”

I digested that for a second then asked, “And why can’t I ski exactly?”

The entire room burst into laughter; my dad, my good friend and, yes, my neurosurgeon… everyone but I. Clearly my extraordinary healing abilities weren’t appreciated.

“Because you just had major spinal surgery.”  My doctor said, still laughing.  “We usually like people to wait at least a year before doing anything extreme.”

“Yeah, yeah, I know that.  But I mean, what are we afraid is going to happen?”

“The shunt hasn’t had enough time to secure itself and could come loose”.

“Fair enough.”  I said, understanding March still gave me a couple of months to ski out the season.

He paused for a moment, looking me in the eyes, to confirm I understood the gravity of my situation, then asked, “So when in March would you like to schedule your MRI and follow up?”

“The first week.”  I said without hesitation.  “Definitely the first week”.

And there you have it, three months into this whole shunt thing and the doctor’s orders are to drink Gatorade and don’t ski… who would’ve thought (well, the skiing part, yeah, I would’ve thought).  All in all, I have to say, I feel pretty good; the weakness in my left arm is still a major issue and I’m still having some pain in my neck from time to time, but I’m drinking the Gatorade and trying to work my way through it.  Quite honestly, I think there’s more going on than an electrolyte deficiency, but either way, it’s encouraging to know that whatever is happening, it’s not related to the shunt.  Because the fact is, like it or not, I’m now a shunt type of guy.

*Actually, there was a celebrity spokesperson on one of the sites I visited, a hobbit — or should I say Sean Astin — of “Lord of the Rings” and “Rudy” fame.  Not exactly an A-list celebrity, I know, and truthfully I don’t even know if the PSA he did ran anywhere other than the particular website it was on, but he is a celebrity nonetheless, and I’ve got to give him credit for taking the time to do it.  So, yeah, thanks, Sean.

pau.

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

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.

pau.

1980: A reputation, especially a bad one, is a difficult thing to shake. 

When I was first told the second attempt at my neck surgery would take place at Pomona Valley Medical Center (PVMC), I’m not going to lie, I was scared shitless.  I’d never been the place before, but the stories that made their way around the rehab hospital were the stuff of medical nightmares.  In my mind, PVMC was that house in your childhood neighborhood that nobody wanted to go near and was occupied — at best — with a family of cannibals and at worst, well, a family of cannibals with an appetite.  People went in, but they didn’t come out.  Posterior and anterior neck surgery was bad enough, having it done in Satan’s “pick and pull”, only added to my uneasiness.

On the day before the surgery, I was strapped to a gurney, loaded into one of the rehab hospital’s vans and transported down Garey Ave. to the hospital some 15 minutes away.  And while that part of Pomona isn’t exactly the most dogeared chapter in the “Great Views of California” book, it was at least a view and had I been able to see it I would’ve cherished it like it was my last.  Macabre?  Perhaps, but it was something to hold on to — even if it was a view of distracted commuters, carbon monoxide poisoned trees and mini malls.

When we arrived at the hospital, they unloaded me in the parking lot and wheeled me some 10 yards to the emergency room entrance.  Inside, my eyes hesitated to adjust to the dimly lit hallway.  The half covered, long row of fluorescent lights overhead sputtered and blinked and barely illuminated the space with an anemic gray-green hue.  Any hope I had that the hospital’s rumored reputation would be assuaged by a deceptive but comforting ambience or welcoming cadre of sweet nurses was duly crushed in those initial moments.  I now waited to be greeted by a neurosurgeon with dirty hands, a utility belt loaded with dull, antiquated instruments and a bloodstained smock that read, “my other grill is an operating table”.

“Mr. Schmiesing,” he would say between puffs on a cigarette dangling from the corner of his mouth, “A table in the morgue opened up rather unexpectedly and we’d love to get you in for your surgery now if we could.  There’s a bit more light down there and I think we’ll have the anesthesiologist for most of it”

By the time I was checked in and taken to my room, my experience in the place was fast becoming an unspooling ball of confirmed negative expectations.  The room I was assigned to, a six bed set up, was empty except for a grotesquely large fat man in the far corner bed by the window wheezing like a drowning carp.  The lights, as with the entrance to the hospital, struggled to illuminate the space but seemed enigmatically effective at beating back any comforting spectrum of natural light that dared enter the room.

My bed, praise Allah, was by the door, far away from Death’s next fare, but aside from that fortunate spatial arrangement, its elevated side rails, made it look more like a cage than a welcoming alternative to the gurney.  Over the bed, bolted to the head and foot boards, running lengthwise down the center, was a thick steel bar with a dirty metal triangle dangling from it by a steel chain.  Sketchy though it was, the setup wasn’t unfamiliar to me — paraplegics at the rehab hospital used something similar to grab and hoist themselves up into a sitting position — but why it was only over my bed, a quadriplegic with no ability to use it, was a mystery to me and not altogether comforting in regard to what the staff knew about my disability.

“Are we ready to transfer to the bed?”, an orderly asked, unstrapping the belts that kept me secured to the gurney and then rolling me partly on my side while two other orderlies shoved a large plastic transfer board under my back.

“Uh, I guess we are, but –”  I started to say, knowing it wasn’t a question but still wanting to let them know they should go easy with me.  And before I could say anything further, they slid me onto the bed with a bounce and pulled the board out with the same disregard for my comfort as when they shoved it in.

Lying there, staring at the steel bar looming a mere 3 feet from my face, as a nurse hooked the night drainage bag to the side of the bed, covered me, and then pulled the side railings up with a jolting clang, I wanted only one thing; to call the whole thing off and get the hell out of there.

“I don’t want to do this.”  I said to my mom as soon as the nurse left the room.

“I know you don’t.”  My mom answered, sitting down in a chair beside me.  “I know you don’t.”

And just as she was about to reach out to comfort me, there was a strange metallic cracking sound behind my head and the steel bar above me began to fall.  I say began, but began isn’t quite accurate, it simply fell.  And as heavy metal objects often will, it fell with great velocity and intention — coming at me so fast I didn’t even have time to close my eyes.  And then Bam!, 2 inches from my face it stopped with a bed rattling explosion.

Dumbfounded and in shock, I couldn’t say a word.  Somewhere in my adrenaline filled brain neurons were frantically trying to connect the dots as to what the hell just happened and were failing miserably.  Was it a dream? A joke?  Was I dead?  I mean, if avoiding surgery was what I was after, well, death via a crushed skull was one way to go about it.  So did I will it to happen? I didn’t know. Nothing was clicking.

And then I lost it — physically, emotionally, psychologically — that was it.  I was done.  And I began to cry.  From deep within me it came, like vomit; everything, all of it — the fear, the frustration, the doubt — anything I’d pushed below the surface out of necessity, function or pride found its way back to the fore.  It was at once both embarrassing and cathartic, but mostly it was just honest — a pure, visceral truth.  My mom tried to comfort me, and while her touch was reassuring, what I really needed was time.  Because all those neurons, just moments before, that couldn’t find their mark would sort themselves out again, my breathing would return its appropriate autonomic pace, I would be relatively baggage free from my colon to my frontal lobes, and I would once again realize I was in Pomona (or Hell), in a hospital room a mere 24 hours away from anterior and posterior cervical fusion.

Bad blood

That night, needless to say, I didn’t sleep very well.  I laid there with my eyes open for most of it, kept awake by the gurgling breath of the carp in the corner and the fear that the bar — despite the dubious reassurances to the contrary — would once again try to bludgeon me.  But more than this, I was beginning to feel like that guy in the joke who’s asked God to show him some sort of sign while all the while ignoring the lightning that’s striking the ground around him. A fact which, quite frankly, was making it difficult for me to reconcile how things couldn’t get worse… which, of course, they did.

In the morning when they began to prep me for surgery, among other things, they gave me a transfusion of several liters of blood.  Being anemic* — and a quadriplegic — they felt it was the only way to keep my blood pressure up and stable while they did their little cutting/fusion thing on my neck.  But as soon as that blood entered my bloodstream and started to circulate throughout my body, I began to have a reaction to it.  At first, it was just a hot, itchy sensation, but soon after it became something much worse; my hands and face began to swell, hives broke out all over my body, and it was only a matter of time before my esophagus would join in the fun as well.  Seeing what was happening, the nurses stopped the transfusion and quickly injected me with an epinephrine, a steroid or some sort of Benadryl derivative to prevent me from going into anaphylaxis.

“That’s strange.”  One of the nurses said, detaching the connection from my arm.  “I’ve never seen that happen before.”

“Really?”  I thought.  “What a surprise.  Maybe we should consult the PVMC Ouija board to see what to do next”.

“We’ll wash the proteins and see if that works.”  She continued, “That’s usually all we need to do and you should still be ready in time for your surgery “.  And then left the room with the offensive sack of blood.

In the meantime, my head was spinning with disbelief and I wasn’t altogether confident about the “dirty” blood now circulating throughout my body.  I may have been anaphylaxis free, but my skin was still crawling and itching in places I didn’t even think I could feel.  And truth be told, the whole  “washing the proteins” thing seemed to have a faint whiff of bullshit to it and felt like another way of saying, “Oops, my bad.  I’ll go get the good stuff now”, which didn’t exactly boost my comfort level for another go around of transfusions.

But comfortable or not, some twenty minutes later, just as the Raid was starting to work its magic on the insects under my skin, the nurse returned with the newly “laundered” sack of blood and hooked me up for “transfusion take two: the redux”. The difference this time being, the concerned looks of everybody in the room as they waited to see what would happen next — a wait, as it turned out, which wasn’t very long, as the previous symptoms came crawling back with each pump of my heart.

Again, I was immediately detached from the offensive sack of blood, injected with whatever drug they injected me with before and found myself, once again, fat faced and itchy, surrounded by a bunch of perplexed health-care workers collectively uttering phrases such as; “this is so strange”, “I’ve never…” and “I don’t know what’s going on”.

For me, however, it was no longer strange nor perplexing.  As far as I was concerned, PVMC had made its point and with impressive efficacy.  There’s no doubt prejudice and reputation had something to do with it — things were colored by reputation from the beginning — but this haunted hospital stuff, with the sickly fluorescent lights, dying, wheezing fat men, tainted blood and guillotine deathbeds were beyond the pale, and I was more than ready to close the chapter on this living Stephen King novel.

In the end, it made little difference what I or anyone thought or wanted to do.  The fact was, if they couldn’t give me blood then they couldn’t safely do surgery.  And my neurosurgeon, who was not a member of the PVMC staff, didn’t have anything invested in forging ahead regardless.  Even still, the strange circumstances and happenings — and I implore anyone to find their equal that isn’t fiction — were enough to give me pause. At the time it seemed as though there was something malevolent was at work, but looking at it now, I’m not so sure.

For starters, I didn’t have a go through an extremely risky surgery and protracted recovery.  Sure, I would have to wear my halo brace for a few months more, but as miserable as those twice-weekly screw tightening sessions were — and trust me, they were miserable — there wasn’t any risk of death or paralysis (At least not for me, anyway. The doctor who tightened the screws into my skull, well, she ultimately became the source of many homicidal fantasies… but that’s another story).  Also, my friends and family — particularly my mother — were spared an agonizing day of worry, pacing hospital hallways and drinking nasty hospital coffee.  And lastly — and perhaps most importantly — I learned valuable lessons in both the power of reputation as a guide for selecting a hospital and how to use my intuition to recognize unconcealed signs from God.  Both of which came in handy in the years to follow.

So I share with you the above experience because on the 21st of this month I will be having another go at spinal surgery.  And while the circumstances this time are different – the diagnosis is syringomyelia (more on that in the next post), it’s at UCLA not PVMC and, of course, I’m older, wiser and definitely more zen than I was at 16 — that last experience, “valuable” as it was, has made surgery of any kind a difficult thing to wrap my head around.  Oh sure, I’m zen, I’m even a little bit of a buddha, but I’m not exactly looking test those facts.

That said, I’m comfortable with what’s about to happen. I’ve given it a lot of thought, seen several specialists, absorbed my fair share of radiation and I’m now throwing my chips on the table.  What’ll happen, will happen and at this point it’s out of my hands.  Don’t get me wrong, I don’t want to have surgery, but the beauty in this particular situation is that I don’t have a choice — if I don’t have surgery things will progressively get worse, and if I do, well, there’s that possibility as well, but more likely I’ll arrest the situation where it’s at and even possibly improve.  Also, I’m in the best shape of my life, I’ve been eating nothing but local organic food for the last 20 years (yes, it matters), I’ve got a kick ass positive attitude and I’m blessed to the hilt with kick ass positive friends and family, and the surgery is scheduled for — you guessed it — the “International Day of Peace”.

So seriously, could things be any more in line for a day on the operating table?  You know, aside from the whole quadriplegic thing.

Next up:
Syringomyelia: a love story.

pau.

*I was anemic at the time because I refused to eat hospital food and dropped below 100 pounds.  Not a good move, perhaps, but it says something about the quality of institutional food.

So on Monday I went to the hospital for a scheduled CT myelogram (think spinal tap) and a whole lot of waiting around on gurneys, in empty hallways counting holes in acoustic ceiling tiles (more on why in a later post).  And while I enjoy all the pomp and circumstance of having a 20 gauge needle put into my spine and then injected with an iodine-based dye while strapped to a table tilted head down at a 45° angle as much as the next person, I can probably think of one or two other things I’d rather be doing on an 85° Berkeley day… like, oh, I don’t know, not having a 20 gauge needle put into my spine and then injected with iodine-based dye while strapped to a table tilted head down at a 45° angle.  Call me crazy, but I’m just wired like that.

Still, like so many things in life, it’s not always about the size of the needle, but rather the size of the heart, and yesterday, my heart had an opportunity to swell again by at least two more sizes.  Hospitals, it seems, have that effect on me.  But it’s not really hospitals — personally I prefer to be nowhere around them — no, it’s really more a matter of what I’m able to see while I’m there — outside the backless gown, if you will.

From the beginning, I thought the day would be no big deal; check in, get prepped, get spiked, get scanned, lay flat, go home.  Simple.  But my mom, in her unchecked sensitivity and love, felt she would’ve been remiss in her motherly duties if she didn’t let me know just what kind of test I was actually having:

Her: “You know this is a serious exam don’t you?

Me: “Uh, yeah?”

Her: “Well, let me just send you a couple of links so you can see what it’s all about, just in case”.

Now, I know a lot of people out there subscribe to the whole “ignorance is bliss” thing, and while I’m not one of those subscription holders, I will cop to the adage that sometimes “less is more”, and in this case it especially applies to myelograms*.  In other words, go in cold, you’ll be a whole lot happier if you do.

Anyway, long story short; given the unfiltered, straight dope presented on those websites — and because my parents are just that cool — my mom and dad wanted to fly up to Berkeley to be with me for the exam.  Now you’re starting to see where I’m going with this, aren’t you?  And though I didn’t think it was necessary, I do enjoy their company and if a needle in the back facilitates that, well, then, far be it from me argue the point.

But as I said above, sometimes it’s not about the size of the needle; and what was most huge about the day — besides my mom waiting seven hours with my anxious dog, all the good thoughts from all over penetrating those reinforced steel walls, the cool nurse who chatted with me for an hour and a half while I was in recovery, my two friends shifting their schedules around to help me out — was my dad driving my battery challenged car over 100 miles to nowhere in the 90° plus heat without air conditioning after they woke up at three in the morning to catch a flight north, so that my car would be charged up enough to be smogged and then registered**.

Big, no?

But wait, here’s the kicker (and a lesson for humanity about how we should all be, what we’re all capable of); when he came down to see me in the basement post-op recovery room as I was being discharged, he was nothing but smiles — no sign of fatigue, no grumpiness, not a single complaint about what he’d just done***, not a word about it, just his sweet, patient, kind smile, and a “well kid, are you ready to go?”.  And, wow, I gotta tell ya, my heart at that moment couldn’t have been more expansive. My pop is an amazing father, to be sure, but more than that, he’s an exceptional human being who continually surprises.

Now I can give you a thousand and one reasons why I think this is so and where I think it comes from, but really, it’s hardly important — to know him is to love him and that’s enough.  Is he flawless?  That depends on your understanding of what that means — politically he can move a bit further to the left (but then so could most everyone else in SoCal) — but he continues to grow more patient, kind and loving with each passing day. And this is beautiful when you consider how full of these three things he already is.

And there you have it, a CT myelogram, while not exactly a ride you’re gonna see at Disneyland anytime soon, is like everything else in life — neither good nor bad — an open door in which opportunity — of all sorts — can be had.

Footnotes:

*This actually applies to most medical referencing on the Internet.  If you don’t believe me, try putting in the symptoms for the common cold and you might find that you have the Ebola virus.  I’m just saying, exercise your Google health searches with caution.

**Seems crazy, I know, but I don’t drive and neither do any of my friends.  It’s Berkeley, after all, and this is a town of bikes and public transportation.  So why do I have the van, you ask?  Well, believe it or not, it does occasionally come in handy, i.e. trips to the Sierra to ski.

***This, incidentally is really nothing compared everything he’s selflessly done since I’ve known him.

pau.

Every now and then I am absolutely dumbfounded by the obvious, and more often than not, it inspires great wonderment and gratitude.  Yesterday, as I was watching my hermit crab dismantle its habitat — he has a particular distaste for faux rock walls apparently — I was once again struck by just how interesting this little crustacean is.

Our time together — such that it is (him being a crab and all) — began five years ago when my nieces gave him to me for my birthday.  The inspiration for the gift — beside the fact that they were seven and five respectively — no doubt sprang from the familial understanding that if you’re going to give somebody an unusual gift, exercise that understanding on Tony.  Where this understanding had its genesis, I can hardly guess, but hey, if I inspire such impulses, all the better — it’s a win-win for everybody.  Fun to give, fun to receive.

Anyway, I digress.

The thing is, while the gift was sweet (and most certainly inspired), inside I was a bit concerned I’d inherited the quick deaths of two very well appointed hermit crabs; who — if given their druthers — would much rather be on a beach in the Bahamas nibbling on a dead castaway, than in the care of a quadriplegic in Berkeley, California.

And therein lies the rub — a quadriplegic’s care. Which is really another way of saying my friend’s and attendant’s care.  Which isn’t to say my friends and attendants aren’t capable of taking care of crustaceans, but rather I wasn’t sure I wanted to lay the responsibility of the crab’s mortality at their feet.  You see, while I may have been familiar with their ocean dwelling brethren, I knew nothing about these terrestrial fellas — i.e., what it would take to keep them alive — and I’m guessing my friends were in the same boat as well.

Not wanting to waste any time, as soon as my family left, I googled “hermit crab care” and found if I wanted to keep these little guys alive, it would take more than the jar of food and plastic carrier cage they came with.  In fact, my research led me to believe, away from their natural habitat, these guys were actually quite sensitive creatures, needing the right humidity, temperature and physical environment not only to thrive but survive.  All of which — given my appreciation of both thriving and surviving — would require a trip to the pet store and investment of no less than $50.  And even then, there were no guarantees.

So left to my own devices, I made a decision and went ahead and posted an ad on Craigslist offering them up to a well humidified, crustacean loving home.  And within an hour I was inundated with responses from resumed, uber-qualified hermit crab owners looking to adopt.

“So why are you giving them away?”  Craigslist hermit crab guy #1 asked, seemingly shocked somebody would be parting with such valued animals.

“Well, I got them as a gift”, I said, “And since I’m a quadriplegic and they seem to need some pretty specific care, I thought rather than have them die because of something I couldn’t provide, I’d give them to somebody more “equipped”".

“Special care?  Dude, where’d you hear that?  They’re soooo easy.  Just give ‘em some sand, a bath once a week and whatever food you have lying around, and they’re good to go.  I’ve had mine for a couple of years now and no problems.  I even let them run around the loft from time to time.”

“Really?  Your loft, huh?”  I paused to allow this image of hermit crabs running around a chic San Francisco loft take hold and then added, “Well, the website I checked out made them seem like they were super sensitive, so, you know.”

“Well, not mine, bro.  But look, I’ll take ‘em if you want, but you should seriously think about keeping them.  They’re a lot of fun”.

And so I did, I kept them.  And he was right, they’re pretty low maintenance as far as pets go; a bath once a week to wet their modified gills (before going terrestrial they were sea creatures and are still evolving), apples to munch on (don’t know why, but despite being Caribbean this is their favorite food), lots of toys and things to mess around with, and a temperate environment to call home.  And that’s it.  Simple.

Now admittedly, one of the crabs — who was most likely ill when I got him — did kick the proverbial shell in the first couple of weeks, but the other one — Captain “Shiva” Blood (as he’s been affectionately named) — is still going strong, and like I said above, it’s been five years now.  Oh, and another thing Craiglslist hermit crab guy #1 was right about — they are pretty fun.  Well, fun if you mean interesting, it’s not like you can play frisbee with them or anything.

But whatever.  The thing is, not only is Capt. Blood the strangest, coolest, most alien looking thing in the apartment, but behaviorally speaking, he’s quite the trip and surprisingly entertaining as well.  You see, hermit crabs (a misnomer, by the way, they’re actually quite social), by nature, are very active creatures and, aside from when they’re sleeping or molting, like to keep themselves rather busy.  Here, in his current environment in Berkeley, that essentially translates to a lot of interior decorating — if he can move something from one place to another in his crabitat, he will, and by morning the space is usually completely rearranged; sticks, water bowl, pirate skull shelter, what have you, nothing is left untouched.  In fact, for something so little, he gets a lot more done in a 24-hour period than most people I know.

Which brings me right back around to the beginning of this blog and my inspiration for rambling on about my hermit crab — gratitude.

On any given day there are usually a minimum of three creatures hanging out in my home (it’s difficult to gauge the exact number given all the insects and bacteria); my dog, Captain Blood, and me, all of whom have evolved quite differently after rising out of that primordial ooze eons and eons ago.

But these differences, while deceptively obvious, pale in comparison to the similarities we all share and the fact that we’re all essentially the same thing, utilizing the same atoms, breathing the same air, drinking the same water, with the same goal to ride this life thing out as far as it will take us.

My point being, if this doesn’t cause one — with the capacity to do so — to appreciate the sweet taste of an apple, embrace the moment and to be stupefied with gratitude for the beauty that surrounds us, well then, perhaps it’s time we start giving away hermit crabs at birth to kick start the process.

pau.

After nearly 40 years in Newport Beach, my parents — like the Israelites in the Old Testament — have all but made the final exodus out into the desert.  They’ve traded cool ocean breezes and the smell of salt air for the oppressive heat, the need for AC and putting greens. And while it wasn’t God who told them to go east (or at least I don’t think so), it’s a liberating — albeit painful — move just the same. Retirement is in their sights.

As for myself, I left Newport for Berkeley in 1985 and it couldn’t have been soon enough.  By that time, the city had changed — was changing — going from the semi-nondescript beach town in the shadow of Los Angeles to the crown jewel in the fast becoming uber chic “OC”.  Once quaint 40s style beach houses became tear down fodder for bloated mansions on tiny lots and exotic European car dealerships outnumbered seagulls, I knew my days were numbered and never felt the need to look back.

Still, even as the city was changing, there were things about the place that resonated within me; my family, the people who were there for us during difficult times, the beaches and our charmed home on Port Manleigh Circle.  For my parents, especially for my mom, these are some of the things that have made it so difficult for them to completely pull up roots and leave.  So much happened in that place, over so many years, with such deep personal investment, that their sense of loss is easy to understand.

Of course, it’s only natural for one to wax nostalgic, reminisce or even second-guess decisions as boxes are being packed, labeled and loaded to be moved to a new home.  And it’s even more natural for one to feel unsure as you begin to fill a new home with old things, expectations and most importantly, life.  But the wonderful thing about homes is they’re responsive to the things we fill them with, and will grow, blossom and fruit accordingly.  Fill a home with love and goodwill and the home will give that back.  If you’ve ever been fortunate to live anywhere long enough you understand this potential, and my parent’s new home has potential in spades.

Even still, I’m surprised my parents have indeed moved, and there’s even a little part of me that’s inclined not to believe it until actually see them firmly planted in the new place.  But, the truth is — and all facetious disbelief aside — the move has been a slow train coming.  In actuality, they’ve had their feet in two cities for a couple of years now, which –  among other things — has served to temper a naturally difficult relocation process.  As I said, their roots in Newport run very deep and if history has shown anything, it’s shown they possess an uncanny ability to influence decision-making and hold one in place.

That said, this isn’t the first time a move from Newport Beach was in the works — in the late 80s a move was all but eminent.  At the time, it was less a choice and more of a necessity, but just the same, the gears were engaged and the house was on the market.  Now, why it never happened is in large part a matter of fortuitous arrangement, but still I’m confident things wouldn’t have turned out quite the way they had had it not been for the unconscious (or not so unconscious) kibosh my mom levied on the process.

How NOT to sell a home

If you’ve ever been privy to the selling of a house, then you probably know it’s a good idea not to allow the owners or family members anywhere near the property while you’re showing it.  And there are good reasons for this:

1. Change is difficult. And while sometimes it manifests itself in quiet apprehension and introspection, more often than not it leads to visible moodiness and overt fear. And nobody, walking through an open house for the first time, wants to feel or see this.
2. It’s a lot easier to picture yourself in a new home if the previous residents aren’t in it.
3. People — above all else — are unpredictable and therefore you never know what sort of crazy thing a homeowner might say when asked a question directly or has the desire to be of friendly assistance.

Now, this is great advice and I would highly recommend anybody who’s going to sell their home to follow it.  But, when it came to selling ours — circumstances being what they were — we went in a different direction completely.  I, with a pressure sore, would stay at home in bed to recover, and my mom — who, with all her body and soul didn’t want to move — would stay with me — keeping me company, as she put it, but also at the ready to “assist” potential homebuyers with any questions they might have about the house.  This, not very surprisingly, is where things went off the rails.

Unlike the housing market bubble of the not so distant past, the credit default swap and “don’t ask, don’t tell” loans had yet to be invented, and things at the time were comparatively slow.  People came to check out the house, but more often than not they were “lookie-loos” rather than serious buyers.  When a serious buyer would come along, conflicted emotions would run through us all, and I think secretly we were all wishing for the same thing –  Amityville horror or some other paranormal interference.

But truthfully, though, one doesn’t need floating pigs, rooms full of flies or the devil if you simply go against the above advice as we did.  My part in the kibosh was circumstantial, but nevertheless I was there. To this day, I try to imagine what it must’ve been like to come into an otherwise empty house on a buyer’s preview and find somebody still lying in bed in one of the rooms.  Granted, there were no tubes or wires coming out of me or beeping machinery keeping me alive, but still, upon discovery, what sort of conversation would you initiate when this is your final stop on an otherwise typical open house walk through?

Needless to say, the experience provided me with a fascinating insight into the nature of human interaction; not to dissimilar to witnessing how people in an elevator adjust to somebody facing the opposite direction from the doors and engaging in conversation.  And truth be told, I almost got a perverse thrill watching as these homebuyers — in that microsecond of a moment — decided how they wanted to deal with this most unusual “elephant in the room”.

Unfortunately for the anthropological/psychological sciences community, and any future papers that may have been presented/published on the subject by moi, my mom — by virtue of her location with me in my room — was more often than not able to preempt said situation and temper some of that initial awkward contact.  It must also be said, however, that any attempts on her part to explain why I was in bed during an open house — the physiology and treatment of pressure sores — though done for the uninitiated’s benefit — were not easily digested or understood.  And in the end, I’m afraid, only served to add to the awkwardness and confusion of the situation, not achieving the purpose she’d hoped.

A coyote ate my baby

For homebuyers, our house was fairly unique compared to other houses that may been on the market in the neighborhood, as our backyard sat right up against an empty field. It was a great view and there were no plans to develop it in the future, making it a natural highlight for potential buyers.

On one occasion, after learning more about pressure sores than she’d ever expect to learn during a buyer’s preview (or anywhere for that matter), one of the more serious homebuyers — there with her infant daughter in her arms –  asked what I can only imagine she believed to be a innocuous, but useful question about the field.  Certainly, the conversation was crying out for a less intimate direction than the condition of my ass, but the question was no less a valid one.

“Well, we just love it.”  My mom answered with a sparkle in her eye, “You’re right up against nature. We’ve got squirrels, hawks, buzzards, lizards, owls, frogs, coyotes… all sorts of animals out there.  At night, it’s beautiful, you can often hear the coyotes howl.”

“Coyotes?”, the woman asked, instinctively clutching her baby a little tighter to her breast.

“Yes,” my mom said, not sensing the woman’s growing uneasiness, “But we rarely see them, they’re pretty shy.”

Now here’s were the conversation could’ve gone in a couple different directions, but even from my bed, lying more than 10 feet away, I could see it was headed for unintended consequences: like watching an accident unfold in slow motion, and wishing you could do something, but knowing, in reality, it’s moving way too fast to intervene.

“Oh.” She said, shifting the baby to her arm away from the window.

“Although”, my mom paused and then began again,  “Sometimes they do come in and take someone’s cat or small dog, but that’s not very often. We’ve got big dogs”.

And boom!  There it was, the collision.  And just then, I could see the gears in the women’s mind start to turn, as the joyous pictures of her, her husband and their baby in their idyllic new Newport Beach home were quickly eroding and being replaced by that of her baby being carried away in the middle of the night by a coyote.

How I kept from erupting with laughter is purely a testament to the power of shock and disbelief. But my mom — God bless her — in her attempt to share something that is actually quite spectacular — hearing coyotes in a beach community at night (not the part about “fluffy” and “whiskers” becoming dinner) — was completely oblivious to the story’s affect on this young mother looking to buy a home in the peaceful suburbs.

In the end, the woman and her husband never made on offer on the house — and that was fine by us. The fact was, none of us wanted to move, that house on Port Manleigh Circle felt less like a structure and more like a gift, and was the hub of so much activity, goodness and love. And while by proximity alone, I’m indeed culpable to some degree in our house’s failure to sell, it was my mom’s beautiful, unchecked gift of gab that brought us home.

Epilogue

I have not yet been to the house in Palm Desert as it stands now, but nevertheless, I believe it’s starting to feel like home for them.  They still rent a little refuge on Balboa Island they can retreat to when the summertime heat of the desert rises to the absurd temperatures of Venus, or they have work to do in the “OC” (retirement still seems to be a little further off), but I think ultimately, as the rest of us start to visit during holidays, weddings and funerals, it’ll begin to feel alive in the way only a family loved dwelling can.  The structure doesn’t have much of a history yet, but like I said, that’s a remedy served by time, place and people.

As many of you may have discovered by now, a lot of these stories have their root with my mom.  And there’s good reason for this.  My mom is by far one of the most interesting, crazy, fiercely loving people I know, and her heart is an unchecked beacon that shines brightly and attracts many.  But above all this, she’s hilarious and has the ability to laugh at herself in a way few people can or do.  This I admire to no end, and hope that I possess at least a fraction of this DNA.

I must also point out, that my mom is now — and has been for many years — a real estate agent of great success, skill, integrity and loyalty, and would never suggest any home seller go against the above rule…

unless, of course, they really didn’t want to sell their house.

pau

It’s hard to believe, but just a short while ago my dog Shadow had me questioning her mortality. And rightfully so, for a moment there she seemed to be bumping up against it. But like they say, “that was then, this is now”, and where I was once questioning her mortality in regards to whether or not she’d be around much longer, I’m now questioning it in regards to will she be the longest living Golden Retriever on the planet.

If there was ever a better example of the adage, “what doesn’t kill you, makes you stronger”, I’d like to see it. There’s no question I’m resilient, but this dog makes my resilience look downright pedestrian. Yesterday, or example, we celebrated “my neurosurgeon had emergency surgery and had to cancel my appointment” by taking a jaunt to Amoeba, our favorite record store, to pick up biscuits for her and the new Neko Case, Decemberists and Amadou & Miriam CDs for me. I say jaunt, because it’s a 1/2 mile there and 1/2 mile back, and she ran the whole way nonstop… and she’s like 150 in dog years.

Now, maybe there’s some sort of longevity juice inside that softball-sized fatty cyst she’s been carrying around all these years, or perhaps she’s concerned there might not be popcorn and biscuits on the other side, or maybe it’s just that death itself, basing its judgment on her breath, isn’t convinced she hasn’t already shaken off her mortal coil… I don’t know. But whatever the reason, I couldn’t be more grateful.

Shadow celebrated her quinceañera last Friday, and while I skipped the party dress, streamers and DJ, the biscuit keg was tapped and flowed freely. The thing is, when you’re a 15 year old Golden Retriever and you’re refusing to let go of the puppy in you, you deserve a bit of recognition… and all the snacks you can stomach.

¡Feliz cumpleaños, Shadow!

pau.

From the moment I was weaned and started dining on solid food, I’ve disliked eggs. The taste, the smell, the texture, all of it. Nevertheless, every six months or so I take a bite off someone’s plate just to see if my tastes have changed… they haven’t, but I still hold out hope that one day they will.

That said,  I find this gastronomic steadfastness somewhat impressive — if not perplexing — given my otherwise ever expanding tastes.  Foods I once found so odious as a child — mushrooms, olives, raw spinach, brussels sprouts — I now find delicious and even difficult to live without. The egg, for whatever reason, remains odious.

But today’s blog isn’t about my adversarial relationship with the egg — though for the sake of working things out perhaps it should be — but rather my transcendent one with the brussels sprout… a far more rewarding and interesting one.

You see, up until about year ago, the much maligned brussels sprout — that bitter, gaseous dwarf of a cabbage — was as difficult to swallow as the egg. But unlike the ubiquitous egg, the opportunities to challenge my taste buds were virtually nil, being more a question of availability than cahones (see; will). Because seriously, who — outside of someone born prior to 1950 or a Belgian — would order brussels sprouts at a restaurant when they had a whole menu of other side dishes to choose from. I’m just saying.

But like so many other things in life, it’s often about timing or coming at something from a different angle. I was fortunate enough to be privy to both when my mom decided to go out on a limb and not only serve brussels sprouts to a potentially — and I’m being kind here — “non-receptive” audience (my sisters and I), but to resist her greater impulses and not to fall back on her traditional boil and butter method that she found so…well… traditional.

What came to the table that evening was nothing short of a wonder; not only was it not the traditional sprouts we were all dreading, but it was a revelation to boot. Ridiculously so, in fact, especially given where these sprouts previously sat on our list of things “we’d most not like to ingest at meal time”.

Crunchy, salty, olive oily; they were the perfect blend of texture and flavor. None of the characteristics that marred the vegetable prior to this method lingered — or rather, they were transformed into deliciousness.  And surprisingly, even cold the next day, with none of the crunchiness, they were still amazing.

Sometimes a bad reputation is earned by way of a misunderstanding, and I’ll state it here that the brussels sprout is a good example of that. The misunderstanding being, what method of cooking best brings out their hidden tasty goodness. Now, if you’re like most people I’ve met, you’re probably locked into a particular way of preparing these things, and that’s fine if you want to continue to perpetuate their bad reputation. But if you want to elevate their status into the pantheon of foods you just can’t live without and recipes that will wow and impress your friends, then put away that pot of boiling water, ditch the butter, break out the olive oil and fire up that oven… you’ve got roastin’ to do.

Oh, and when you’re doing your shopping for these lovely, green enigmatic things, make sure to bring a really big bag.

Roasted Brussels Sprouts Recipe:

Coat copious amounts of brussels sprouts with olive oil and place evenly onto a cookie sheet. Salt with sea salt to your liking (slightly salty seems to be best). Roast in a preheated 375° oven for around 30 or 40 minutes depending on the size of the sprouts or until golden brown (you want them to be crunchy on the outside and melt-in-your-mouth soft on the inside). Shake the pan from time to time for even browning. Eat immediately!

Bonus tip: They are also great cold or on salads.

Pau.

If you’ve been anywhere around Facebook lately then you’re probably well aware of the viral happening “25 random things about me” and in turn even contributed to its spreading.  If for some reason you haven’t been touched by this arguably benevolent virus and have no idea what I’m talking about, or you’re one of the seven readers out there who are scratching your heads at the word Facebook, let me briefly break it down for you.

About two weeks ago, Facebook, the popular social networking site, became host to what can only be described as a mass electronic chain mail… a virus, basically.  Members were “tagged” in a note by one of their “friends” with the heading “25 random things about me” that had — you guessed it — 25 random things about that person.  Upon reading it, the tagee was then asked to do a note themselves, re-tag the person who sent it and tag 24 additional friends whom they felt might like to know 25 random things about them. And so on and so on.

To say the virus was popular would be to miss the point — though the numbers are ridiculously impressive — what’s most interesting was not the level of “infestation”, but rather how it fits into and shapes our popular cultural zeitgeist and what that all means.  Time Magazine, in an online editorial, attempted to break it down, but their take on it was far less than favorable than mine.

Besides being unintentionally ironic (I think), the piece in its attempts to be sassy and humorously cynical (which it accomplished in places), failed to understand the greater significance of such “narcissistic” endeavors.  First and foremost, Facebook is a community — many communities to be exact — and as such, it’s all about communication and connection.  And while there are many ways this communication manifests itself — pictures, music, videos — 9 times out of 10 it’s through the written word.  In general it’s a glorified (albeit dynamic) form of public e-mail, but on occasion — as with the “25 random things” virus — it breaks free of this utilitarian constuct and becomes something else… literature.

Now we can argue what literature is until Harold Bloom comes around on Harry Potter — and perhaps if you do one of these lists you can put your definition there — but for me at least it’s hardly a question and the virus is a great example of how difficult it is to pin down.  In the same way that blogging might’ve originally challenged our assumptions and patience about what was important/valuable with its democratizing openness, so does this type of micro-blogging (for lack of a better word).

The Time piece, above all else, stressed that the virus/endeavor was a “narcissistic waste of time” and even attempted to back this up with arbitrary numbers. But what does that mean exactly? Is it a waste of time because it’s not a legitimate form of literary expression and therefore not worthy of engagement? Or that people shouldn’t bother sharing things about themselves because there are more important things to do?

If it’s the former, I don’t see what’s any less legitimate about this form of literature as opposed to any other.  As nonfiction writing goes, it’s been as interesting, funny, insightful and controversial as anything out there, and certainly no more “narcissistic” (whatever relevance this label has) than anything else on the web or in print.  And if it’s the latter, well, what can I say?  Take a look around at the world sometime and tell me how learning something about one another might be a “waste of time”… no matter how arbitrary the details.

Look, not everyone on Facebook chose to do one of these things in much the same way not everyone chooses to blog/write about their life or the world around them… or surf, or bake cookies, or meditate, or solve a Rubik’s cube, or wank for that matter. And that’s cool.  But if you did do one of these things and you tagged me in it, thank you… your insights, humor, ridiculousness and talent resonated with me in a way the best literature often does, and I’m all the better because of it.

Bottom line; if Facebook and its byproducts are such “narcissistic time wasters” and a threat to capitalist productivity, then perhaps there should’ve been an earmark attached to Obama’s recent stimulus package to shut it down.

#26.  I’m just saying.

pau

The number one universal rule in creating and maintaining a blog of any merit is consistency.  Interesting content is pretty key as well, but if your readers don’t know when said content will be available, then what’s going to motivate them to tune in? Knowing my own ADD when it comes to the internet, my suspicions are not very much.  With that in mind, my absence from the blogosphere this month was not out of defiance of this number one rule, but rather I was kept away because I had no voice (literally not metaphorically; metaphorically my voice is as chatty and strong as ever).

“Voice”, you say, “What’s that got to do with it? You’re not a podcaster”.

And you’re right, I’m not.  But when your voice sounds like Bette Davis after a weekend binge of torch songs, unfiltereds and helium huffing, NaturallySpeaking (my method of writing) doesn’t really want to put out (using the parlance of our times).  More to the point, the difference between what it thinks I’m saying versus what I’m actually saying is quite comical… Dadaist even.  Which is great if you’re Andre Breton or stoned out of your gourd, not so much if you’re a quadriplegic blogger.

So all that said and without further ado, rigmarole or excuses, I once again give you fasterbarnacle… phlegm free and fast as ever.

Pau.