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.

Thursday, April 21, 2011

Controlling the Anger

Being human means getting angry sometimes.

It also means feeling other less than desirable emotions, such as jealousy.  As a man on dialysis and waiting for a kidney transplant, I do have a lot of anger and jealousy to deal with inside of me.  I can't deny that; I try, for the most part, to keep a positive attitude and a sunny disposition about my life.  There's so many great things in it, that for me (fortunately) this is probably easier than for some.  Dialysis patients can be some of the most angry, ornery and easily upset people in the world.  In fact, we get a bad rep for this - and sometimes, it's heartily deserved.

Living this way, though, is tough - life on dialysis (and even with a transplant) is about maintenence, not a cure.  I will never be cured of this problem, and it will plague me until the day that I die.  No respite.  When you get told that at 24 years of age, you get real angry real quick.  And, man, I have my moments.  They're few - and mostly private, but I know there's a few people out there who've been with me when I've broken down.   And I feel like my whole world crumbles when it does.  I've had some awesome friends pick me right back up, though, and guide me to the things about myself that are pretty excellent.  When I got married, each and every one of my Groomsmen were one of those who helped me see the light when I was sick.  I had EIGHT groomsmen.  Heh.   I really couldn't have done it without those guys.  Or my wife.

I get jealous too.  A lot of people get jealous over what "they don't get" or "they don't have".  I'm the same way - though I pine less for material things, and I'm jealous that I don't have my health.  I get jealous when I see people I know abuse themselves in all kinds of crazy ways, go to sleep, wake up with a little headache - but carry on.  Slightly miserable, but eventually it wears off.  What.... I wouldn't..... give.... to be able to to that again.  Whoa.  I get jealous of their ability to just pick up, go and do something...... where as I must be on some kind of regiment at all time, as I have to do find several hours everyday to do dialysis - and I must really be home to do it.  Sure, I can travel with lots of planning - but I couldn't get just say, tomorrow, let's go on a trip!

I covet that freedom.  I know a transplant will help with that.  But I'm angry.  I've been on the list four years.  Four.  Years. of my young life.  My prime.  Wasted away, blowing in the wind, waiting for that miracle hand-out.  Four years of waiting, with my cell phone in pocket - hoping that I get a call that tells me "We have a kidney for you."  Four years of yearning to be the best person I can be - and always feeling like I'm falling just a few feet short.  Yes.  I am angry about that.  But I put that away after a musing, because holding on to that anger will not change anything - and if I wallow in it too long, it will become me - not just a part of me.  And I don't want to be that bitter, whiny, angry dialysis patient.  I've seen too many of them, I've read too much of their whining, and I know I don't want to live to be that person.

So, I wait.  I wait, with patience and dignity - but I'll tell you, if they don't get me a kidney soon.... I'm gonna do something stupid, like poop in the middle of the ER just to get some attention.


Wednesday, April 6, 2011

Me and My Guitar

Anyone who knows me probably knows that I play guitar.  For many years, it was my constant companion - a beat up, low-end Fender Acoustic Guitar used to go with me pretty much everywhere - and if I wasn't playing that, I was playing my old Stock-Modified Red Fender Stratocaster.  I was give the Acoustic Guitar for Christmas when I was 15, and the Strat when I turned 17.  My father was an enthusiast - he played himself.  Some of my earliest memories are him playing his 12-string guitar around the campfire - I knew all the words to American Pie before I could write them all down.

Sadly, in the past few years, with my declining health, it feels like I don't get to play as much as I used to.  Or, and this is hard to admit, the spark (or want) to play hasn't been as furious as it was in my youth.  I think I had most of the fire sapped out of me to fight off the effects of my disease.  But, still, deep in my soul - I still burn for the music.  I can feel it in my body - almost like a source of energy that flows through me.  On those night where I'm "on", it's almost as if a luminescent entity is flowing through me, into my forearms, and into my fingers.  I can feel every tendon in my hand snake up my arm, and they dance in this odd tango as my fingers press against the fretboard.  I love the feeling.  I can't explain fully, but at best I'd say it makes me feel connected to the human experience in a way that is so different from life.... it's almost like a waking dream.

So, I pulled out my old guitar from it's case today - this one's a beautiful Martin Guitar - again, given to me by my father.  I received this guitar on my 25th birthday.... five months after I was diagnosed with ESRD and started dialysis for the first time.  I didn't know if I'd make it to 25.... and it was a beautiful gift.  This guitar has been with me through all the ups and downs of my journey with transplants and dialysis.  I think that when I get to a better place beyond this, that guitar is finally going to tell all its stories.  All the moments I haven't shared - the pain, the doubt and the fear that comes with being chronically ill..... yeah, I have the feeling it's all in that guitar.

Last year, my wife and my father in law scoured the internet and newspapers to find me a guitar I've long dreamed of owning.  They found it, and my Father in Law drove to PA to get it... he surprised me with it on Christmas.  He said "Steve, can you take a look at this guitar I got for Jeremy and tell me if it's any good?"  He handed me a soft-case with an electric guitar in it.  I opened it, and saw it was a '72 Fender Telecaster Thinline Reisssue - in wood finish.  The very guitar I'd longed for - and pointed out everytime we visited a music store.   First I thought "Oh, man, Jeremy is so lucky.... this is my dream guitar...." then I noticed the tag that said "To Steve".... I almost broke down right there.  Again, I was gifted with such an amazing instrument.  It's become my main axe for the past year, and I love playing it.

I can trace so many amazing moments of my life through my guitars.  I've met and bonded with amazing friends because of it.  I first met the girl who became my wife one night when I was out playing my guitar.  She loved to hear me play.  It's been with me on road gigs - it's been with me to camp, it's been with me when I was alone, it's been with me when I was surrounded by family.   There's so many memories tied to it.

In a way, my guitar has been my best friend.  It's given me so much more than just the music.  I love playing it, and I love playing it for my friends and my family.  I've been blessed with enough talent to make it sound good some nights, and I'm thankful for that mystical gift.  Who knows why people are good at certain things, but I'm glad that playing guitar was one of my gifts.


Monday, April 4, 2011

Five Way Swaps

A friend of mine just posted a link to an article about a "Five Way Swap" Organ donation in California that took place recently.  Basically, it was a chain of people who all needed transplants - and had donors, but their individual donors didn't match them - so, they all "swapped" with each other, so that everyone got a transplant from a donor that matched them.

It's crazy stuff.  I'm happy to read about stuff like that, but I saw that one of the patients was 65 years old and had been waiting for five years.  I guess part of me is jealous - some that someone who is in their 60's can get a transplant, and I'm barely in my 30's, and have been waiting for a new kidney since I was in my twenties.

I just remind myself that life isn't fair; it never is.  There are worse and greater tragedies in the world - still, a piece of you can't help but be jealous for someone who gets the opportunity to live a better life.  A life off dialysis.

My waiting continues - I really hope this is my year.  I do have a feeling I'll get a transplant this year.