The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Sunday, September 29, 2013

The Others

You know, not being on dialysis is a blessing, really.

But it makes me think of others who still go through the process - those who are on it, those who will go on it... and those who will never get off of it.  I also think about those who go through the process of signing up for a transplant.

It's not the fault of the general public, but I often run into people who sometimes think organ transplants are this run of the mill thing - lose an organ, just get a new one and be on your way.  They don't understand what it all entails - the maintence, the drugs you take, the lifestyle you have to lead.  Your life never returns to "normal" afterwards.  You have to take care of your graft.  And it's not an easy process to go through.  Nor is donating an organ.  I never used to bat an eye when people made a joke about "selling a kidney" to get something they want.  Now, whenever I hear someone crack a joke about that, I sadly think to myself about just how valuable that organ is to someone else.  What kind of mountains they'd cross just to be able to obtain one.  Selling your kidney... it's really not that funny.  And I'm the LAST person to get all sensitive about some politically incorrect joke, but there you have it - when you are a part of something, those little jokes do make you think.  I don't get upset for myself as much as I think about others who have donated, for free, and others who need that organ.  I think about how offering some kidney on the "black market" might not even be compatible with someone who'd buy it.

I think about my father, who donated a kidney for me - not because he wanted some new stupid car, or some fancy car, or whatever other "thing" someone might desire.  He donated it because he wanted his son.  That's what you "sell" your kidney for.  For love. For family. For friends. For life.  And you don't sell it, because you really can't buy giving someone else an extension on their life.  So, yeah, when someone says they'd sell a kidney for an "Escalade" or a "New iPhone", I want to show them what that kidney really buys - I want to show them that it's saved thousands of people who have been saved and gone on to live lives that have changed worlds.

Become aware of what organ donation can do.  Sign your cards. Tell your family that you want to donate if you can.  And if you are, or may become, a living donor - I'm one of a chorus of hundreds of thousands who will hug you, and say "thank you" for being a great human being.  If I had the money, I'd buy you that iPhone just for doing it... for someone else.

~Steve

Friday, September 20, 2013

Looking back and taking stock

You know, I often get dragged down and depressed about how sick I became in the last 10 years, and how much it dragged my life down.

Which does have truth to it - but another part of the truth is, despite all the dialysis and botched surgeries I've had - I lived a pretty crazy and amazing life.  I've met SO many interesting people, and I've done a lot of interesting things.  Heh.  I guess as years go by, you tend to forget a lot of what has happened to you, and you can focus on stuff that's bothering you in the moment.

But I can honestly say - what felt like a life restrained for me was more than most would live.  Less than some, heh, but definitely more than most.  And though I do miss being young and carefree, I'm right where I should be.  Maybe I'm just generically pissed about growing up!  I think everyone from age 25-95 can relate to that.

~Steve

Thursday, September 12, 2013

Another Summer for the books....

Wow. Another Summer has slid by... it's amazing how fast they go as you get older.  This one seemed to pass in the blink of an eye.

A lot of stuff happened this summer, and it's funny how it can be that your Summer seems so busy, yet you feel like you didn't do as much!  Well, it's probably because we moved house, and that ate up a lot of our time and money.  We didn't really get to travel much this summer - though we don't really travel much, last year we got to go to NYC and Boston.  I've been mostly a home body, due to budget constraints and time constraints.  I guess I just missed that feeling of being on the road.  One of my favorite things to do is to go on a road-trip with my wife. 

But that's life, and getting older.  Instead, I'm sitting here reading out things like Miley Cyrus Twerking.  I have to listen to adults - paid professionals on the news say the word "Twerk" or "twerking" over and over again.  And I chuckle.  Has life as an adult as been this ridiculous?  I don't know if I'm becoming more concious of the absolute ridiculousness of the "Adult World" or if it is a change.  Some girl dances seductively on stage, and we're still making a big deal out of it? We haven't really progressed much in 30 years, have we?  And you juxtapose that over more serious matters, such as issues in Syria.... and you just realize how surreal being alive is!

So, yeah - another Summer gone... and another year passes.  I wonder if I'm any wiser, or just more aware of the cyclical nature of the crap that is society.  Seriously - we have problems in the Middle East, some young female artist writhes suductively on a stage, politicians worry more about the moral fiber of people, but do less for it. Is this the 80's or are we into the second decade of the 21st Century?

Can't wait for next summer!

~Steve

Monday, September 9, 2013

Enthusiasm - a musing on loving life.

You know, for all the complaining I can do about things, there really is a part of me that is just absolutely in love with life.  I'm in love with the human experience - my human experience. 

It's almost a damning condition: when I was young, I was so sweet and naive, and often the world looked like this place of wonder.  It starts out small.  When I was a child, my street looked like the crazy world to explore. At the end of one side of the street we lived on, the highway as built high on a mound of dirt - but I could hear the cars go by, and see them.  I was fascinated by where they were all going.  I never walked down there, because it was kind of scary.  Even though the highway was up 30 feet on top of a hill, I knew it was dangerous.  That section of highway had been built in the middle of the residental neighborhood we lived it; I imagine that only years before my birth, it wasn't there.  But as a small child, you don't think about these things.

As I got older, my world got larger - went to a school that was about 5 minutes away, but that seemed like a world away.  And I loved it.  And, of course, I met so many new people - I remember being excited just to have classmates.  Though that's when a sweet and trusting little kid like me learned that people can sometimes be mean for no reason.  Yet, it didn't dampen my spirit. I was just so enamored with everything - school was all about learning. I loved learning.  I still do.

It's hard being enthusiastic about life, sometimes.  When I think about it, my hope for things has often led to a lot of heartache and disappointment.  It took a long time for me to realize that is just how life is.  I learned it the hard way a lot. There were a lot of tears, hiding in closets to cry, and a lot of contemplating.  Truth is life isn't fair; but that is such a hard concept for a child to wrap their mind around.  It's hard for adults to grasp too.

But if you concentrate all the time on how unfair life is, you miss the moments that matter.  The moments of beauty and grace.  Those things that make you happy to be alive.  A favorite song playing on the radio.  You know, there are some silly songs I hear, and instantly I'm back - years ago - smelling the sweet breeze of summer blowing in the open window at my parents house.  I'm remembering making a bologna sandwich and wolfing it down before going back outside. 

I'm remembering the smell of a burning fire.  The smell of the wood ablaze, and the smell of the meadow around us.  I can remember the rough feel of the wood of the shack I was sitting on.  I climbed up on the top of this little shack, and sat - feet dangling over the edge - drinking some crappy beer and hanging out with the greatest people in the world.  The music played off into the night, and the skies above us were dark.  Miles from cities and towns, we just hung out.  Our youth wasn't even a question.  I cracked jokes about my shoes.  I was wearing sandals, and it was cold, and I didn't care. My shoes were "magnetic and magnificent".  The fire was warm and bright. The smiles and laughs kept us going. We didn't have lofty plans beyond that night.

I'm remembering sitting in my backyard, playing my guitar. Six strings making melodies that I couldn't believe I was coaxing out of them.  The smiles of my friends as they sang along to the tunes.  The burning of those old citronella torches that graced the backyards of hundreds of thousands of suburban homes.

I'm remembering sitting in a car with a friend, still singing the song that was on the radio.  Laughing as we did, and then getting out and going home after getting dropped off.

God, life is so amazing sometimes.  It's the stupid moments that stick with you. For all the loves I've gained and lost, my greatest love is life.  It's been good to me - for some reason I was born with this love and appreciation for it inside me.  It's so great sometimes, it pours out of me in passionate waves - I get a little overcome by emotion.  Sometimes I think people don't understand it, and they think I'm just being silly.  But I've never felt anything more - never felt anything so clearly, with such an intense vision as I have about life.  About living. 

You know, I don't remember all the bad times so well.  Maybe I'm blocking them.  Maybe I just don't want to think about them.  Sometimes I can recall all the surgeries I've had, and how scared I was of them.  Not of the actions, but of the chance that I might not come back from them to live in my precious life, and to have all those moments to hang on too.  I do remember the last one - coming out of it - my body so sore, my mind a bit groggy, but I'll never forget the pressure I felt - in my hand, and my wife's small and harm hand grasped my big mitts. 

So, yeah, I can be cranky - but most of the time, I'm just amazed that I've been able to live the life I have.  I've loved so hard, and I've been loved.  And I've loved and appreciated every moment of that.

If I haven't seen you in a while, or talked, I'm sorry - life gets so complicated the older you get, and your free time and your circles of friendship and interaction get smaller.  I feel like there isn't as much of me to go around as there used to be, but you'd be amazed at how often I think of people.  And how sometimes I just want to send out messages to say "Hey! I hope you're doing well!" and the undertone on that is "Hey... I care about you.  You made an impression in my heart that is indelible and that is so amazing it moves me to tears."  But that makes everyone feel a little awkward.  We often tend to push those kinds of things aside. 

"Hey. I care about you. You made an impression in my heart that is indelible. It's so amazing, it often moves me to tears in my private moments. Thank you for being a part of my life."

~Steve

Thursday, September 5, 2013

Stress

I have a lot of stress going on right now.

Sometimes life seems to come at you from all sides, and it also seems like you're screwing up everything that's coming at you! Sometimes, it's hard to see everything when it's all piling on like that.

I know sometimes I have a hard time dealing with it, but today, I just did some deep breathing exercises, got out and moved around a bit, and tried to start dealing with some things one at a time.

It still sucks.  Hard.


But I don't feel as bad about it.

Plus, I still worry about my kidney. That fear of it failing never quite goes away. Even though I'm doing everything I'm supposed to for it, there's always that nagging fear that despite my best efforts, and following protocol, it'll still go wrong.  I am Murphy's Law and Murphy's Law is me.


~Steve