One In A Million...Just Like Me

Facebook, and the rest of social media, have connected me with some amazing folks from all over the world. Many who share my same heart defect, Transposition of the Great Arteries, and who have had the groundbreaking surgery, The Mustard Procedure, and at roughly the same time...in the late mid to late 60's and early 70's, and some who are currently on the heart transplant list themselves, or have already had a heart transplant.  

I find that AMAZING.  And the almost daily interations with these folks are HUGELY important in my journey right now...and probably always will be.  Well, not probably...It's always going to be important to me...and that's a guarentee.


As different as we are in some ways, this heart disease has a way to binding us together in ways few can fully understand.  A lot of these folks I have never met in person, but I am honored to know them just the same, and equally honored to call them my friend.


Heart disease, and especially heart defects that we are born with, have a way of bringing out the best of us..if we let it.  The compassion and empathy this group has for others in similar shoes is nothing short of amazing.  It's inspirational.  It's motivational.  It's life saving. It's just frickin awesome!  

I know I speak for many survivors of heart defects and related surgeries that it brings a tear to our eye to see little ones still being born with this defect, but at the same time knowing that there is hope.   This is always hope.  Folks in there 30's, 40's, and 50's just out there livin life...just cause that's what we do.  We live each day with knowing where we have been, what we have overcome, and what we are capable of overcoming.

And to the extent that our collective well-being, positive outlook, meaningful advice, and feedback is an inspiration to others who have come, and will continue to come, after us 'old timers'...well it's just very humbling.  

I'm told almost everyday now that I am am inspiration to someone.  And I take that to heart, and it really does keep me going.   I know many of us feel the same way.  So thank you for that. Seriously, it really does mean more than you could ever imagine.  

Thank You. Thank You. Thank You.  





So whether your across the state here in Iowa, or in another part of the United States, or in Canada, or England, or Australia, or New Zealand or anywhere else in the world. I just want to say you're awesome.  

Thanks for not giving up on yourself, on me, on others just like us, and on the future.  Your kindness and well wishes have gotten me to where I am today...and will get me through to a new heart and beyond.    

Ain't So Bad

Remember the Rocky movies?  All five or six of them.  Heck I think they are even making a new one...as we speak.

But anyway, such memorable characters...

Apollo Creed

Clubber Lang
Mick the trainer
The Russian Dude

Adrian....YO ADRIAN    Paulie.

And of course, the man himself, Rocky Balboa.  The Italian Stallion.

And wow, such incredible life lessons.  Do me a favor, heck do YOUR SELF a favor, and take a few minutes to watch some of the clips on youtube, or maybe you have them in your movie collection, but anyway really take the time to listen to the dialog, and immerse yourself in the story line...and sure it's just movies, just made up characters and events...but it's soo true to life just the same.

All these movies, especially the first four, and double especially, the first one...are simply amazing to me.  Classic cinematic depictions of what it means to persevere when you seemingly have zero chance.  It's my 'go to' motivational material.

Quotes, and dialog, and songs, from the movies are a staple of countless self help books and locker room pump up talks.  You would have to have lived under a pretty big rock the past 30 years not to have at least heard some of these gems a time or two.

Eye of the Tiger!  Yo Adrian, I did it!!  Cut me, Mick.  The list goes on and on...

Hopefully it's not too hard to understand why I identify a lot these days with Rocky Balboa.

The other day I was honestly feeling kind of down and pissed off about this whole situation.  I barely slept the night before, my legs hurt, and I was sick to my stomach, yet I was hungry but too tired and weak to get up and make anything remotely healthy.  And I was just tired of it...all this heart stuff, the doctors visits, the waiting rooms, the surgeries, the list, the medications....all of it...it just gets kinda old after nearly 45 years.  And while I am pretty positive most of the time, I am human, and every once in a great while, I wonder if it's all worth it.  The desire to throw in the towel is pretty strong sometime. I think it's that way for a lot of us on the list.

So as I was sitting here on the couch, feeling all sorry for myself...a scene from one of these movies popped into my head.  The scene from Rocky III when he's just starting to fight Clubber Lang, and Clubber is just pounding the crap out of Rocky...giving him everything he's got.  But Rocky just keeps takin the punches.  Just. Keeps. Taking. Punches.

And I was thinking...each new day on the list seems like a body blow to my spirit.  Each week on the list...a right hook to the jaw.

And that wasn't a very good place to be...those were NOT happy thoughts.

..

But then I remembered just when things looked really, REALLY bad for Rocky, something amazing happens. He says to Clubber...

Aint so bad.
Aint so bad.
                  You aint so bad.

                                         You ain't nothing.

And this just enrages clubber even more, and he redoubles the force of his punches, and Rocky takes the beatin of his life.

But Rocky never stops believing in himself...

So long story, short, just when all seems lost, Rocky starts fighting back...and quickly turns the tables on ol Mr. Lang...and gives him a taste of his old medicine.

Anyway, sitting there on the couch, and thinking about this scene, and those words, something sparked in my head, and in my soul, and I knew I wanted to adopt that mantra from here on out.

I've never been in a boxing ring, let alone much beyond a shoving match on the grade school play ground.

But make no mistake, this heart disease has me in the fight of my life.  In a fight FOR my life.

Like Clubber Lang, and before him Apollo Creed, and then the Russian dude, heart disease has every intention of pounding my head in, of bringing me to my knees
...of wanting me to throw in the towel
                                    ...of wanting to give up.

But I am not gonna do that.

To this dreaded heart disease I say, You ain't so bad...you ain't nothing.

I've never been a quitter when it comes to this heart disease, and I ain't gonna start now.

To the Surgeons, I say...cut me Mick,  Let me get back out there.  I can win this fight.

And to my symptoms, when its really hard to distinguish one from the other, I guess if there are three, I'll aim for the one in the middle.

Cause I ain't gonna stop swingin...with everything I've got.  All my strength.  All my power.  All my love.

Let me leave you with is today...one of the best inpsirational quotes of all time in my opinion.  It's from one of the later movies...but wow, does this hit home for me   Here's hoping you find your own motivation to stay in the fight..

Have a GREAT day everyone!

Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place, and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That's how winning is done! Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody. Cowards do that and that ain't you. 

Road Trip!!

Road Trips.

We've all been on them.

Pack the bags, corral the kids and the dog in the back seat and head out on some great, grand, wacky, wild adventure.

Maybe we head to the Grand Canyon, or the Field of Dreams, or the Mall of America, or some ball game in the 'big city', or maybe we simply take that all too familiar trip, you know, over the river and through the woods...to Grandmother's house we go.

Few would deny there is a certain thrill, a certain sense of freedom, of endless possibilities...when we stop planning, stop preparing, stop counting down the days...and we FINALLY get to actually be going.

Going.  Moving.  Doing.   Not just sitting there.  Finally the day has arrived where we finally get to go somewhere.

Anywhere but here, right?

And if the route is familiar, we know in our minds, even before we start out, where we might stop for a pee and a pop, or where that great roadside burger joint is, just 187 miles away!   World's Largest Ball of String, Check.  We trust our car will get us there, we trust the road will get us there, we trust it will be just fine.  Grandma will be there waiting for us...

And most of the time we don't even need a map (or a GPS these days)...we're at least somewhat familiar with how to get there, and as long as our sense of direction isn't totally shot, we can at least get kinda close to where were going before we might maybe..just maybe...as a LAST resort.. have to stop for directions.

Let's be honest, half the fun seems to be in the journey, not just the destination.  And sure sometimes as the miles add up we get a little restless, the kids begin to argue, 'are we there yet' is more frequent.  The engine might start to heat up, and the AC starts blowing out hot air and the fuel light comes on.  Road constructions detours you 20 miles out of your way.  But in the end you know, 99 times out of 100, you'll get there just the same, and no worse for wear.

And that's the mindset I am trying to maintain during my wait time.  Destination...New Heart.  Have fun on this adventure...anticipate a bump or two or five along the way, and just take time to enjoy the entire process of...Going.  Moving.  Doing.

But I know this is no ordinary road trip.

I really have no idea how long the trip is going to be.   For me miles are measured in weeks and months.
  2 months?
                         17 weeks?  14 months?
                                                       Tomorrow??
           Who knows?


I'm not even sure where Grandma lives anymore, and nobody else knows either.

I'm hoping my engine holds up long enough to get there, and the tires have enough tread on them, and the crack in the windshield doesn't get too much bigger, and I'll be able to get something on the radio besides talk, talk, talk,   And...and...and.    There is always another 'and'.

I hope I don't run out of gas.
I hope I don't get into some silly fender bender that will make the trip even longer, or even impossible.
I hope I know when to let someone else take over when I get too tired to drive...

But I still want to take the time to slow down and soak in all the little, and not so little quite honestly, things I've seen before, but never took the time to appreciate.  Cause I always thought I had more time...I think we all do

Everything on this trip takes a new meaning when I am stopped in my tracks at times, and I wonder if I will ever pass this way again.

I try not to dwell on that thought much, but it's there.  And it's silly to deny that it is.

I love being on this adventure, don't get me wrong, and still just keep believing that the New Heart is just around the next bend, just over the next hill.