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***Stop in for a new blog post every Sunday...until my brain implodes.***



Sunday, June 27, 2010

Feeling Crabby

I'm happy to report that nothing particularly interesting has happened in my life since the last update. So this week, I'm reaching into the mental archives to share one of those goofy moments in life, which serve as evidence that God has a sense of humor.  I realize that this is an excercise in public self-humiliation; but they say a true artist must suffer for his/her work. And I couldn't think of anything better. So here's this weeks glimpse into my strange little world.


This particular moment of humility began a few years ago, while my family was in Sarasota, Florida to watch the Reds prepare for yet another spectacular losing season. While there, of course we tried out all the typical beachside seafood places.

Now, before I proceed any further with humiliating myself, I want to make it clear that this incident was completely the fault of one John Schrode, who purports to be my best friend. John is on a never-ending quest to corrupt me into a clone of himself — I’m guessing, for spare parts. With all his heart, he longs for me to love what he loves (excluding Mrs. Schrode), to hate what he hates, and to generally see the world through his eyes. Sometimes, his zealousness leads to trouble…for me.

Before we left for Florida, John suggested (insisted) that I try Alaskan king crab legs for the first time. It's one of the few types of seafood I’d never sampled — frankly, the damn things always scared me. I have a problem with any food that:

A. Requires proper training to eat

B. Looks at you while you consume its flesh

One night, we ate at a restaurant with the very appropriate name of, "Sharky's." It was a pretty cool place, right at the base of a long pier. I suppose, if you didn’t like your appetizer, you were welcome to take it out on the pier and use it to catch something you might like better.

I strongly considered chickening out of my quest for crab, and just ordering the half-ton beach burger instead. But, with the thought of incurring “The Wrath of John” in mind, I decided to give them a go.

With an overflowing plate of spiny appendages placed before me, I felt like a walrus on a rocky beach, preparing to devour my kill. It reminded me of a pile of giant spiders, and I had no clue where to begin. Fortunately, our cute waitress took pity on me, and offered to crack the first appendage.

After much cracking, digging, pinching, and semi-pointless butter dipping, I finished most of my monster crab legs. And they were actually pretty good! Way too much work for a meal though. Dinner should not require manual labor. It should arrive in front of me, as if by magic. Hell, I don’t even like making tacos. I’m going to dismantle an armored crustacean — I don’t think so!

On the way home from dinner, we stopped off at Wal-Mart to get a few necessities. Out of curiosity, I took a brief stroll through the seafood aisle. After examining the crab leg selection, I discovered that the restaurant had served me "stone" crab legs, and not "Alaskan king" crab legs. That disclosure was as astonishing as it was disheartening. You’re telling me there are even BIGGER crab legs than those I had just dismantled — that I had not yet experienced the nirvana of true king crab conquest?

I puttered around in the seafood section a while longer, examining all the selections, and re-confirming my personal pledge to never get anywhere near a raw oyster. Why would anyone consume (on purpose) something that looked like snot on the half-shell? In any case, before long, the necessities were in the basket and we headed back to our condo. I buzzed around the grounds a few hours and then headed in to hit the bed.

Just as I was about to hop into bed, I glanced down and discovered that I had somehow carried home an unintended souvenir from the restaurant. Delicately balanced on my right foot, in all it’s pink glory, was an entire (stone) crab leg! It had been proudly displayed there, all through the restaurant — through Wal-Mart — and all around the neighborhood surrounding our condo. And nobody noticed...or bothered to say anything if they did.

You know...I'm just lucky I didn’t get arrested for shoplifting under-sized, armored crustacean appendages in the dagone Wal-Mart seafood section!

The following year, we were hanging out in Panama City Beach (no, not at Spinnaker’s). One night, after returning “home” from an Applebee’s, my (then) nine-yr-old niece suddenly, and totally, freaks out and yells, "Eww! What's that?”

She points at my left foot.

(Can ya' see this coming yet?)

Cautiously, I look down at my feet. There — a good hour after dinner — a smallish, ice-cube-sized chunk of chopped steak (with just a hint of mushroom sauce) sat proudly atop my best dress shoe.

What is wrong with me?

Monday, June 21, 2010

The Case of The Incredible Vanishing Tube

Normally I would use this blog space to talk about things that somehow relate to everyone’s life. This topic, however, is unique to this “lucky” guy. I’ve had so many kind people asking about it, I thought I’d report the latest strange development. If you want more background on the story, read my blog entry titled, “I Got Tube Babe” from May 30, 2010.

Here's the latest twist in the ongoing mystery of The Incredible Vanishing Tube:

So I go to the cardiologist today, and had an ultrasound exam done. The doc says he's been getting mixed signals from the radiologist who read the CAT scan, from my other doctors, and even from my medical records. He couldn't figure out if the tube in my chest had moved, had broken off during last year's removal attempt, or (as some records suggested) may have been there since shortly after its implantation, all the way back in 1998.

It's almost funny seeing the looks of puzzlement on the doctors' faces anymore. What isn't funny is what I saw for myself when they performed the ultrasound.

Up to now, the question has been, "Is the tube in the liver, or is it still adhered to the subclavian vein in my upper chest, where the surgeon left it?" Well, guess what. The answer is ”yes,” to both questions! It’s still adhered to the subclavian with the far end tickling my liver.

Turns out, that cannula (tube) is much longer than anyone imagined. Why the original surgeon chose such a long tube for me is a mystery. Not only is it exceptionally long, but my torso is shorter than most, because of scoliosis and just the usual traits of a person with Spina Bifida. So apparently, it goes all the way from one end of my guts to the other...nice!

You might think this takes things back to status quo, wherein we were just going to leave it, assuming it would grow into the vein and be harmless. Well, that was when we thought it was a little short tube -- and not the Alaskan Pipeline. Now, we can’t just assume it’s safe, and do nothing. The danger comes mostly from clots forming on the tip that sits in the hepatic (liver) vein.

My doctor ordered a second ultrasound, to get another look at it. With those results in hand, he made some calls. Nothing concrete was decided, so he’s going to gather as much of my past medical history as he can find. Then he’ll convene a sort of roundtable discussion, with a vascular surgeon, a hematologist and whomever else he can think of, to come up with a risk/benefit analysis for surgery. Removing the tube would now be a very dangerous venture. However, leaving it in there might be just as dangerous. The saga continues.

Sometimes I wish I hadn't signed up for cable. :-(

Friday, June 11, 2010

Yeah, But...Why?

Well, it's been over a week since I've had the opportunity to spill my guts in anything more than a few paragraphs, painstakingly poked out on my cell phone keyboard. So, since I have this nice big keyboard and relatively gi-normous monitor, I'm going to take this opportunity to stretch my rhetorical legs a bit -- if you'll indulge me.

This past week was quite a trip. It started in such a frightening way. I was rushed to the hospital from my doctor's office and directly admitted. After surgery (the following day), things turned into more of a low-key, endurance test.

I try to learn something from every struggle that comes along. Taking something meaningful from utter chaos makes life seem logical and manageable. But sometimes the search for a strand of meaning is futile, and we just become frustrated, depressed and distant from any sort of faith in a higher order. It's in those times that you have to hold most tightly to your faith.

So, I've spent this week trying to make sense of my circumstances -- both now, and over time. Many of you know (because of my windy ways) about things I've struggled with over the past year or so; so I won't go into all that. This one however, came as quite a shock, and really made me struggle to find that elusive bit of meaning.

I've concluded that God has his own way of getting our attention.  And I believe he is trying his best to get my attention right now. He tried once, a few weeks ago, with a one night hospital stay. Admittedly, I shrugged it off as dumb luck. It was a couple days after I'd marked 10 years of hospital-free living; so the significance should have been obvious.  It took something much stronger to wake me up.

I think we all have a reason to be here. We all have a purpose to serve in the grand plan. If we ignore that purpose -- whatever we believe it to be -- how can we live truly fulfilled lives? If you're a person of faith, you have to believe that you can't please God if you're not heeding his gentle call. And maybe that's why he sends us a little push now and then: to get us off our tuckus.

I think this explains what happened to me this past week. I'm pretty sure what I have to do...but have procrastinated terribly in getting it done. For that matter, I haven't gotten much of anything done. So God decided to abandon the gentle tap on the shoulder, and opted instead for the not-so-gentle kick in the butt. I need to get busy, re-focus on what matters and get things done. I'm going to try. Hopefully, no further "reminders" will be necessary.

Learn from my lesson.  If you have something you know needs to get done or something you want to accomplish...just get to it. Our time is precious: we need to make the best of it. Don't wait to fulfill your destiny.  Don't wake up having never chased your dream.

I'll just close up this little philosophical tirade by saying, again, how much I appreciate the support I've gotten from so many friends and supporters -- many of whom, I don't know, and never will.  Well wishes and prayers I've received from family, friends, strangers, prayer groups, prayer chains and more, have helped make the long days of waiting and worry go by a lot faster.  Thanks and God bless.

Sunday, May 30, 2010

I Got Tube Babe

Many of you have followed my adventures, the past several months, with the mysterious piece of "inner-space junk" that's been wandering around the inside of my person. The doctors believe the object is a long plastic tube, which was once providing IV access through a vein in my chest. The tube broke off during an attempt to remove it surgically, back in Sept. 2009; however, they believed it had permanently attached itself safely to my shoulder – thus preventing its removal.

However, it may not be that particular tube at all. It may actually be some other medical debris, which has been sitting there for decades. Hell, maybe it was put there during that brief time I can't account for while driving down Route 8 that one dark night. There was this real bright light, and... Okay, that part's not true -- nobody in their right mind drives on Route 8 at night.

In any case, the tube (or something like it) was last seen on a CAT scan in May, resting near my liver and stretching up through my heart like a giant plastic gummy worm. The roller coaster of positive and negative news regarding this "mystery tube," over the past several weeks, has been the cause of much stress, worry, and frustration.  I know it really shouldn't bother me; the doctors seem sure (more or less) that it’s harmless. But the idea of some sort of debris inside my body is completely disconcerting.

Just the mention of the heart sends most people into a panic. The heart is our core...our life force...the metaphorical home of our very soul. It's who we are at the most primal level. Messing with one's heart, in any sense, is a very bad thing. And now mine has been turned into some kind of macabre shish kabob.

What makes it worse is that I have a little touch of obsessive-compulsive disorder. Oh, not so as you might notice it; but it's there. I don't like a messy room or desk; I don't like things out of alignment; never been a fan of odd numbers, and have a pesky need to do things just a certain way. I've even been known to fold the occasional piece of scrap paper before throwing it away. I know: goofball.

So now, the guy who can't stand bits and pieces lying about has a giant piece of biological waste running right through his body -- and it's probably not even sitting there straight! Oh, and it's not just this tube. I've also got broken bars and snapped wires in my back from a less-than-successful scoliosis surgery. I even have some poor dead guy's bones in there, from that same event. At various times, I've enjoyed the company of dialysis tubes, catheter tubes, nephrostomy tubes, oxygen cannulas and the late, great tracheostomy tube -- I'm a rolling Med-Mart! Thankfully, most of that is just a memory.

This crazy, inexplicable tube was just the last straw on a giant pile of aggravation, built up over the past year or so of medical misadventures, illnesses, moments of panic, and times where it all seemed pointless. But that's nothing new; the urge to just give up the struggles and call it a life, is a semi-regular visitor to most people with disabilities. It's like that creepy cousin who shows up unannounced, and you just have to put up with him until he's out of your hair. But you sure as hell don't let him move in! The blues come and go, and you deal with them. You know you have to work your way through the funk and come out on the other side. Faith in God and the realization that there exists that "other side" keeps you going in the hard times.

With all this stuff going on, I was having one of those brief trips through the funk the other day...feeling quite sorry for myself, thank you very much. Then an email showed up in my box that changed everything.

It was a notification of a Facebook posting from a woman who had just tried to kill herself.

She posted on a Facebook group to which I belong: desperate, frustrated, hurting and full of self-loathing. Without going into detail, it was clear that this poor woman was suffering from a physical malady which strikes many people like me, who have Spina Bifida. Her pain and mood changes were easily recognizable as symptoms of the condition. I wasn't sure what to do. The woman doesn't even live in America; it's not as if I could rush over there. She needed medical treatment; but first, she needed to hang on emotionally (despite the mental tricks the condition plays) long enough to receive it. I did the only thing I knew how; I tried to reason with her.

Suddenly I found myself arguing the case against the very action I had entertained myself, not that long ago. It was as if I was looking in a mirror and seeing how awful...how useless...how foolish such thoughts are. Here was a woman in a moment of crisis far worse than my own, and I was reaching out to pull her from the brink. I almost felt like a hypocrite. After all, hadn't I looked over that same edge with just as slippery a grip?

I gave her every reason to hang in there until she could receive help. I assured her a sunny day awaited on the other side of the funk. Beyond that, I could only pass her on to some folks I know in her country who are far more qualified than I am to deal with such things.

I guess, sometimes you can only see how foolish you look when you see someone else dressed the same way. How ridiculous it is, to consider such a defeatist attitude. How pious of you to judge what you think best for those around you. How ultimately selfish you are to deprive those who care for you, of a loved one: leaving them behind, in a barren prison of confusion and guilt. For some, suicide is the ultimate expression of cowardice. To most, it seems the only way out. Regardless, it's a tragedy.

I lost a friend to that choice, not long ago. I remember how it left me feeling. And I hope I've learned my lesson. Running away -- in any form -- is never the answer. There is always a strand of hope to hang on to, and sometimes you just have to tie it around your hand.

A dear friend of mine suggested I write this blog post. She said, "You need to work out your frustrations; and writing about it is just how you're wired." She was, as always, right. So I dedicate this rambling post to you, Lisa. You are truly an awesome friend.

Oh, and she suggested I do one other thing as well. So, at her suggestion (and to lighten up the gloom in here a bit), I present the following:


I GOT TUBE BABE

An original parody
Based on "I Got You Babe" by Sonny & Cher

They say It’s done and it won’t grow
We won't find out until the X-rays show
Well I don't know what all it’s through
But the thing broke free and baby I got tube

Babe
I got tube babe I got tube babe

They say this thing won’t get all bent
If all else fails, they can use it as a stint
I guess that's so, they don’t say a lot
But at least I'm sure of exactly what I got

Babe
I got tube babe I got tube babe

Don’t need staples or a string, I got tube to hold my spleen
And when I'm clad, but in a gown
And if I’m scanned, its always around
So let them say my health’s all wrong
'Cause I don't care, it’s been in me far too long
So even if I hate this line
There ain't no pill or treatment they can find

Babe
I got tube babe I got tube babe

I got tube to hold my glands
I got tube, to beat the band
I got tube that moves quite free
I got tube that walks through me
I got tube to fill with lights
I got tube to see at night
I got tube, it won't let go
I got tube that loves me so

I got tube babe
I got tube babe
I got tube babe
I got tube babe

I got tube babe

Maybe I should have gone with Don't Worry Be Happy. ;-)

Monday, May 10, 2010

It's been a very long time since I've added to this dusty old blog.  I was blogging on copywriting, marketing and general writing stuff.  But let's face it; who wants to read about that?  What people enjoy reading is a good story -- true life, fictional, or even true life with, as Andy Griffith once said, "a little extra jam on the bread."  In any case, the best stories spring from real life, and those are the stories I love to tell. 

Well, the other night, I had one of those unique episodes of "real life" and just couldn't resist the primal urge to share.  Here's what happened:

It was a dark and stormy night. Okay, it wasn't actually "stormy," but it was fairly dark, and the wind was blowing more then really necessary. I was sitting at home, in my bedroom/office (please don't tell the IRS). I was alone, but for my pathologically timid dog, Casey. Being nothing worthwhile on the idiot box, I was flipping back and forth between the movie, Cursed and The Larry King Show. So I was already kind of creeped out.


At some point, I heard what sounded like a car door out front. I went to the front door, but found no one there. I looked out back where we park our cars, and no lights were on. The security light always announces returning family...and the occasional raccoon.

"Oh well, guess it was nothing," I said to Casey as if she cared. I returned to my room for more boredom.

I guess I got hungry not long after that, and found myself strolling into the living room. Before me, the front door had swung open. Now I was freaking out. I shot over and grabbed the phone off its base in preparation for trying to remember how to dial 911. In my nightmares, it seems that's always a big issue.

Nothing happened. Having not been slashed or decapitated, I finally calmed enough to, once again, return to my room. I decided to do a little web surfng this time. I resolved to stay clear of any of hotly contested political forums, as I was scared enough already.

A short time later, I became aware of water running in, what sounded like, our bathroom. That room is right up against my wall -- which isn't all that great acoustically, if you know what I mean. But it left little doubt where the sound was coming from. The flow sounded too rapid to be a drip, but not as if someone was actually using the water: kind of like when you turn off the shower and some water still runs out.

My ears perked up. For a moment, I wasn't sure what to do. Call 911? Look for a weapon? Running for it was out. I steadied my nerves and started timidly toward my bedroom door.

The sound gone silent, my fear turned slowly into curiosity. Then the thought of an over-flowing toilet or burst pipe crossed my mind.

"Oh crap, what am I supposed to do if it's that!" At this point, I had traveled a good three feet from my origin and had yet to exit into the central square that serves as our hallway -- the bathroom door just to the left.

I slowly rounded the bend to find the bathroom light on, but no sign of overflow or pipe damage. There was nothing wrong, but we almost never leave that light burning. I peered through the doorway, past a wall obscuring the shower. Someone had pulled the shower curtain closed.

In my head, "Norman...is that you?"

Hell no, I wasn't going in there to check it out! I need plenty of maneuvering room when dealing with knife-wielding psychopaths. Well, technically, I need plenty of room to maneuver all the time, but that's an argument I wasn't entertaining in the moment.

I headed for the living room, undocked the phone again, and opened the door to facilitate a quick exit. No, I am not a coward; I just like to keep my options open...and I bleed easy. I let ten or fifteen minutes pass as I sat frozen in mid-living room.

Thankfully (if not obviously), I was not killed. And I think Casey was starting to laugh at me at this point.

Spring ahead another half hour or so; everything was starting to fade out of mind. Suddenly, I hear the gentle tapping of Casey's claws as she stepped through the kitchen. Then...the flowing water sound again!

But wait. This time it wasn't a toilet/sink/bloody shower sound. It was more of a "slurp...slurp...slurp" sound. Then it hit me: that's what I'd heard earlier. It was Casey drinking from her bowl. I felt like such a dork, and had to laugh at myself for my foolishness as I turned my back to start surfing the Internet once again.

It suddenly dawns on me that this is the exact point in the movie where the wisecracking, non-believing, smart-alec gets a kitchen knife in the back of his immaculately white t-shirt. I spun back toward the door (to watch TV of course.)

Moments later, a bang echoed up from the backyard. Now I was just starting to get ticked off. Kill me or not; but quit messing with my head! I buzzed into the living room and gazed out the back door. There was no security light on, so it couldn't be anyone returning home. Yeah...back to the phone. But I was tired of quaking in my boots, so I returned to the bedroom.

Without warning, the back door opens with a bang!

This time, it really was my family, who had to wonder why I seemed so happy to see them home from their long journey to Walmart. It seems, "one of us" had turned off the security light.  My own (in)security light, however, was fully illuminated.

"So, anyone call...anything go on while we were gone?"

"Nah; just took in a movie."