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.

Wednesday, October 27, 2010


I'm one of the lucky ones.  I've survived a decent amount of time with End Stage Renal Failure.  Mostly because I was young, and other than my kidney problems, I was strong and healthy.  But a big reason is that I'm one of those ones who's already had a transplant.

My first transplant was my miracle.  My gift - and it came from my father.

I, luckily, come from a really great family.  I've always grown up with two loving and supporting parents, two awesome brothers, both sets of Grandparents, a bunch of excellent Aunts and Uncles, and a bevvy of cousins who are not only my relatives, but also some of my best friends in the whole world.  Family has always been a constant, and a deep part of who I am.  However, I always felt like the "oddball" out.  I'm sure a lot of people feel that way in their families, but I've always had a interesting relationship with my parents.  I can only imagine what it was like to have to deal with the child version of me.  I was a stubborn, day-dreaming and lazy kind of kid who was always described as "not living up to his potential."  My father and brothers were atheletes, and quite into sports and such.   I wasn't interested in that, much prefering books, fantasty, movies, comics, computers and video games.  I played "little league" sports for our local town association - and, boy, did I suck at every sport I attempted.  And I mean I sucked.  My Dad was very involved, coaching several teams, and the poor guy usually had the fine task of corraling me into trying to pay attention during practices for these sports.  In basketball, I usually just tried to sit on the bench as best I could - one time, when I went in, I got the ball on a breakaway, and unusually took off down the court.  Huffing and puffing as much as my chubby little body could, I ran down to the net, unguarded - and I went in for the layup shot, just like in practice.  I dribbled (poorly) and finally lifted the ball into the air.  It sailed in a beautiful arc, through the air - I gasped - I was, wow, actually going to score!  The ball glided through space, inching ever towards the elusive round hoop, and suddenly.... it got stuck.  Right between the hoop and the backboard.  It just stuck there.  They had to get another ball to throw at it to unstick it. 

Only me.

Other sports were much the same.  I was the only kid to ever strike out in T-ball.  I once got a penalty kick in Soccer, and took a running free kick at the ball, missed, slipped on the grass and fell ass over tea-kettle, completely missing the ball.  Everytime I got up to bat in baseball, the damn pitcher hit me.  I was hit by more pitches than any other kid in the league. 

So, I gave up on the sports by the time I was 11.  I mean, it was a nice way to hang out with my friends on weekends, but the humiliation I put myself (and my friends) through just wasn't worth it.  My Dad kinda scratched his head on this one.  My other brothers were really good at the sports they enjoyed, but there was weird old Steve.  So when my father gave me a guitar, it was something we could really bond over.

Some of my earliest memories of life are of my father and his guitar.  I think I knew all the words to "American Pie" before I knew "The Star Spangled Banner".  I can still picture him around the campfire at his folks camp on DeRutyer Lake, playing old folk songs on his 12 string guitar.  The highlight of the night, for me, was always when we sang "American Pie". 

So when I was about 9 or 10, my Dad gave me a little starter guitar.  I had a few lessons from a place out in Manlius, but I wasn't so interested at the time.  I learned a few chords, and the guitar sat in my room.  However, when I was about 12 and my teen years were fast approaching, rock music became REALLY cool - and playing guitar became an obsession.  I started to pick out tunes on the little old guitar - songs I grew up with and the popular stuff of the day.  The first song I ever learned was "Horse With No Name."  My Dad's friend, Rick Fralick, taught it to me on the front steps of the Hunting Camp at my family's land in the Adirnondacks.  My Dad taught me a few songs that he knew too - some Led Zepplin, some Cream, Clapton, CSN.... and I played them all.  Badly.  Really badly.  My friends used to make fun of me, constantly trying to pick out these songs.... I remember, I spent a whole summer teaching myself "Under The Bridge" by the Red Hot Chilli Peppers, and I proudly played it for my friends who said "What the hell was THAT supposed to be?"

But for some reason, I stuck with guitar.  And I got better.  My Dad, always wanting to encourage me, bought me a little starter electric guitar kit.  It was a cheap "Les Paul Copy" and a small little practice amp, but it was my BABY.  I had an electric guitar!  I started jamming with guys from school, and I played in a lot of bad garage bands.  Playing guitar became my release - my passion.  I loved sitting down with it, and figuring out how to play songs.  I found that I could listen to songs, and learn how to play them.  I took Music Theory classes to learn how to properly read and write music, so I could find the rhyme and reason behind why I did what did.  In retrospect, almost 20 years later, it was the best thing I could have ever done. 

I spent the rest of my adult life playing guitar - and I've played with all kinds of amazing people.  I've been in several incredible bands, and I've even "toured" a little, and played in many different cities.  It's brought me close to so many people, and it's even how I met my wife.  The gift of my guitar... my music... from my father.  Through all of our differences and fights over the years, I've always treasured that in my heart.

So, when it was I was at the bleakest point in my life - where it seemed my father and I would never see eye to eye, and all we did was argue - I was struck down with my disease.  Without question or hesitiation, the man demanded to give me his kidney. 

And I mean demanded - there was never any question.  I hemmed and hawed about getting a transplant - I was just getting used to dialysis, and I still kind of held on to the early foolish notion that it was a temporary thing.  But my Dad insisted - he tested, was a match, and he was going to donate.

Not every kid gets lucky enough to have parents that give gifts.  Hell, I know a lot of kids who's parents didn't give a shit about them.  And that's really awful.  But here I was... blessed with parents who would give all, and I spent years battling them at every turn.  When you realize how spoiled you can be and how ingreatful you are sometimes, it humbles you.  It focuses you. 

I'm not perfect now - but you bet every damn cent you own that I'm the most thankful boy out there.  The world doesn't owe you shit, and it'll throw you down into the pit quicker than you can blink.  I'm so thankful for the ones who love me - and are willing to give gifts.

A couple of years after the transplant, my Dad's family had a family reunion out at the camp on DeRutyer Lake - where I'd spent many a night as a child around the campfire, listening to my Dad and Uncle play songs on their guitars.  Everyone was gathered around, and someone handed me a guitar.  Now it was my turn to play - and one of the little girls asked me if I could play "Puff The Magic Dragon".  I'd never played the song before, but my hands found their way to the fret board and the chords poured out of me, as if it were the most natural thing in the world.  As we all started to sing, I knew I knew the song because I had a part of my Dad inside me.  And it wasn't just the kidney.


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