Signing off for a bit

You know, this blog was a great outlet for me during a very hard time in my life.  Sadly, I just don't write in it now as much as I did before - so I think I'm going to sign off for a while here.  If something comes up that I might want to discuss, I can always come back.  But, I think for now, The Kidney Boy Blog is done.

Thanks to all who've supported me, helped me, engaged me and kept up with me.  I wish you all peace, happiness and health.


~Steve

Lest I forget... or any one.

I read a sad article today about a husband and wife music Duo - the wife contracted Lupus, and while on dialysis, she contracted an infection, which weakened her heart and ultimately killed her.  Her distraught husband shot himself hours later.  They were 40 and 39 respectively.

You know, some people think that dialysis is just some "thing" you do, like taking a pill, or getting a shot.  But it's dangerous.  It's dangerous as hell.  When I think about all the risks involved with the process, and how I did it for quite a few years... I count myself lucky.  I also consider myself fortunate enough to have had a wife as amazing as mine.

She took care of me - and was my home dialysis partner.  She made sure the process always ran clean, sterile and smooth.  I never had a problem with anything like that - I got a cellulitis infection in my leg while on dialysis (not because of it, though - had a scrape on my leg, went in a hot tub and got an infection....d'oh!!!) and I was in the hospital for like a week and half! It was insane - it took forever to fight the infection it seemed.

But Jordan... what she dealt with in ensuring my care was immaculate?  I can't even imagine.  And she did it all with grace, style and precision.  She's the reason I'm still here - and to call myself lucky is really underselling it.

If you know someone on dialysis, remember that it's hard on so many levels - and if you know a couple that is doing it together, know they need a little bit of extra love and support, because it's scary, lonely and dangerous out there.


~Steve

Time After Time

It'll be my nieces birthday in a few days; she'll turn 10.  I'll always know how old she is, because she was born just a couple of weeks before my first kidney transplant.  It's pretty crazy to think that much time has passed - she was just a little new-born baby the first time I took those steps down the road of transplantation and surgery.  Now, she's growing up so fast; I saw her and her sister the other day at a family gathering, and I had a fun time talking to them about school, and singing "What the Fox Says" by Ylvis with them.  They danced around, and just generally brought a lot of joy to the whole room.  It's amazing to see them grow so much - of course, when I think about it, I remember wondering, 10 years ago, just how much I'd get to see of them growing up.  It's crazy how much I love them, and how I want to be a good uncle to them.  And it reminds me of how I definitely want children of my own.

I always used to say "someday", but it's funny when that someday really arrives.  Some of my friends have children that are already teenagers in high school - others have children that are toddlers... having a child is different for everyone.  It was never something for me to consider while I was working out how long I'd be on dialysis, and when and if I'd get another transplant.  Now, that someday really is here - I know my wife and I want to have a child sometime very soon.  Also, as you get older, very soon changes - I suppose I mean in the next year or two. We'll see.  Of course, I have all the regular fears people may have when having a child - wanting to provide them with a good life, and instill in them a decent system of values, and encouraging them to be the best people they can be - and for them to have FUN. 

It's an imperfect world out there, and yes - in many ways, I'm worried about what kind of world my child could live in.  But I see how amazing my nieces are, and I think we're all going to be all right.

I'm now leaving in the town I grew up in, and although it's changed so much since I was a kid, it's still a really nice place to be.  I remember having a lot of fun, traveling places on my bike, and I hope it stays that way.  It does make me a little wistful, when I go by places I used to hang out or play at, and I see them completely different - torn down, changed... nothing stays the same, but perhaps the feeling can.  I'd like to teach my kid to ride a bike on these streets. I'd like to be able to show him all the things I've gathered in my noggin over the years, and smile wryly when he just blows all my knowledge out of the water some afternoon.

Just glad to still be around, and thinking about the future.

~Steve

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

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

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

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

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

Scars

The other day a facbook group about dialysis patients, kidney disease and transplants had a bunch of people sharing their scars.  One thing about us ESRD patients is that we are often covered with scars.  I have quite the number myself.  My stomach and lower abdomen looks like a roadmap to Albuquerque.  You know, scars aren't always pleasent, but for many of us - they're symbols of what we've survived.  They're reminders of what we endured. 

Some guy, who belonged to the same group, commented on how he didn't want to see those - they were "putting him off his lunch".

We spend so much time covering up things like our scars or our fistulas, for the comfort of others because they "can't handle it."  Well, I'm really very sorry that you're such a delicate and weak person that you can't successfully handle the marks of another's struggle - someone who may have been through something worse than you.  Something that you think would be so horrible, but something you might be surprised to find out average and normal people survive all the time.

The strength of character and spirit is often tested with such illnesses as ESRD.  People do not like to be confronted with them - to be reminded of their own mortality - so a lot of us chronically ill people spend our time covering up.  Not for our own peace of mind, but to provide it for others around us.  Not just kidney patients - but people of all kinds.  I think it's kind of silly - people are all so apt to wear bracelets or ribbons for diseases, but God Forbid human beings go out in public as who they are.

My scars aren't pretty at all - and my fistuala is huge and garish to look at.  But I survived the incidents that let to them.  I'm still alive, I'm still kicking, and I'm still a human being.  My scars are my stories.  My scars are a roadmap of my life.  They show the bumps in the road.  They remind me of what I can endure.  They remind me that I became stronger than I ever thought I could be - and in the long road of life ahead of me, I know I'll have more.  And I need that reminder of my own strentgth in those times when I look to what I know I'll have to endure in the future.

So, I'm sorry if our scars put you off your lunch, but you could probably stand not to eat for a moment anyway, sir.


~Steve

Me & My Books: A Love Song

Last night, I pulled an old book off my shelf - it was my hardcover copy of Stephen King's "The Dead Zone". I wanted some nice, easy reading and I didn't feel like using my Kindle app. The book itself is over 30 years old, and the paper has slightly yellowed... the dust jacket is a bit frayed and the plastic is coming apart a bit. The pages themselves are rough - kind of pulpy. I can feel the wood in them. And the smell from the pages... wow. That old smell. The smell of my old library - filled to the brim with tomes uncounted and adventures to be had. Immediately, I was young again... alone, and huddled in the corner of the library somewhere. Sitting on that uncomfortable chair covered with rough orange fabric that smells as musty and mysterious as the library. I'm wrapped in love. I'm wrapped in that feeling you have when you're young - where the world is big, open, wide and full of possibilities, and that book you have in your hand is the gateway to those worlds. Those worlds you have yet to know. I ran my fingers over the pages, and saw the beautiful black print, and I smelled my past, my hope, my eagerness.... the ghosts of a lifetime filled my eyes and olfactory senses and there I sat, 20 years later, filled with memories of a life.

It's just a stupid old book, right? As a kid, the story was so compelling, but now I smile a little more at the things I now understand but did not as a youth. But I love it anyway - this little piece of pop-culture. I left a piece of myself back there, decades ago, in all those little nooks and crannies of my hometown and school libraries. I loved finding that old kid there, in the pages of this book. This is why, despite my love for my kindle and the convenience of having books on demand at my finger tips, I will never, ever abandon my old reliables. My old paper loves - my flesh, my blood left there on the pages of the books that defined my past. I will always and forever own my books, just as they own me.

~Steve

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The Weight Problem

Yeah, so, I've gotta really talk about this.

I'm super, super bummed and depressed about how I look.  Yeah.  I gained almost 100lbs post transplant.  And I look, and feel super, super fat.

You know, it's a hard pit to be down it, because it's both physical and mental.  And you know, to change your physical, it requires so much mental power.

I feel like I'm out of mental power right now... I spent so much of my mind on keeping myself alive for years, letting go of THAT a bit I think allowed me to get so big. The comfort in food, the re-enjoyment....

And I'm having a hard time motivating myself to really push myself to lose it.  And that makes me super sad and depressed.

I don't like going out in public, because I don't like the way I look.  I don't like to talk to other people, because I feel like I'm this revolting blob.  My clothes don't fit well, and I hate how I look in normal clothes.

So, yeah, this is me whining and venting.  When I solve this one, I'm sure I'll tell you and be a bit more upbeat.

But right now, I'm just super depressed about it.


~Steve

Life, Loss, Family, Friends... living.

This one, well, it's not just about me - it's also about some friends of mine. You know, the kind of friends that became your family because you knew them so well. Just shy of three years ago, their son died in a tragic accident - and, well, it sent a firestorm of grief and pain through my entire network of family and friends.

Life, sadly, is full of tragedies and the older I get, the more seem to occur and will occur - but they never get any easier.  I've lost many people in my life, so far - from young to old.  I really miss them so much, and seeing how people live on without them can really be hard sometimes.

I mean, how do you go on when you lose someone so important to your life? What, really, do we have in this life other than each other? Sometimes I think the loss of someone else is worse than losing your own spin on the mortal coil.  To live, bereft.  Christ, the thought just stops the heart beating in my chest.

But I see people do it - we go on.  We endure... we hold the memory dear, but we push forward.

Dammit, it's so hard, though.  I just want to hug everyone so hard sometimes and tell them it's going to be all right - and mean it. I have that stupid wish, that want, that need inside to make it all right for everyone. And even if I can't, which I know I can not, I want to give that hug of love - to let them know they we're still here, and I still love them more than words can say.

I think a lot about my friends and family, and people they've lost, and I can't help but be absolutely heartbroken by it.  But then I also think to myself that it was my honor and privilege, in my short time on this Earth, that I knew - and loved - people such as that. And I can count that on my death bed, someday, not the pieces of paper I accrued.

You know, it's us who often seem the most bitter, the most angry and the most cynical who want to hug everyone the most.  It's because we believe in people; we believe in them being the best they can be. The world, and people at large, however, are going to wear you down sometimes.  So, yeah, I can rant about a lot of things - seem empassioned, bitter... even angry.  But you know, if I love you - I love you with every luminous fiber a living being can muster. 

I think about the little boy we all lost, and the son that they lost - and my heart just turns right to a broken stone.  But, again, it warms back up when I know I still have them, and the memory of that amazing kid.

God damn life hurts so much sometimes.


~Steve

Two Years Tomorrow

Two Years Ago, tonight - I was at "Big Don's Mini Golf" enjoying an evening out with my wife, Jordan.  It was amazingly hot.  We went to play some mini-golf, just to try to feel normal for a bit.  Dialysis had been taking it out of me something fierce lately, and it made me wonder just how long I could go on.  We sat behind the snack stand, and I had a very small ice cream cone, and we just smiled, talked, and enjoyed our time.

We had no idea that the next morning, after I dropped her off to work, we'd get the call that would change everything for the both of us.

It'll be two years this week that I got my new kidney. 

Whew.  Wow.  I gotta breathe that one out.

And I have to confess - I still get terrified that despite my best and most meticulous efforts, I'll get that news that the kidney is failing.... it's a constant worry, especially for someone who has had a transplant before, and lost it.  I will admit, living like that does cause me some stress at times, and it will probably be a while before I ever feel truly comfortable - if I ever do.

But, I am happy - I'm happy my wife no longer has to work a 12 hour over-night shift, and come home to put me on a four hour dialysis treatment.  I'm happy we're able to travel more easily - even if it is just heading up to camp for the weekend.  I'm happy that I don't have to have a dialysis room in a house I share with my brother, and that he doesn't have to live with that.  I'm happy that Jordan and I have been able to finally begin to live a more "normal" life!

It is a struggle at times - I've talked about this.  I have a lot of anger and sorrow about dealing with this for not only the last 10 years of my life, but also for knowing I have to deal with it for the rest of my life.  I lament that feeling of having my youth stolen from me, but I temper that with remembering that I did some pretty amazing things in my time on dialysis - things other patients could never do.  I pushed myself for years, and I finally feel like I've had a chance to catch my breath, and try and rest for a moment.  Heh, and yet, many amazing things are occuring in my life!

So, like any other person, I'm just trying to live my life the best I can - and enjoy my pursuit of life, liberty and happiness.  I have to thank so many people.... so many people in the last decade have championed me, carried me when I was weak, helped me when I was lame, and given me the confidence in myself to allow me to life a life of quality in the face of adversity.

Thank you, all.  I'm pretty sure that most of you who might read this know who you are - if you've ever been there for me, know you're in my heart and mind almost everyday, even if it doesn't seem like it.

And when I'm appearing bitter, angry and cynical, you remember that inside, I am a big softy inside, with a lot of love for everyone and everything.  For as bitter and mad as I can seem sometimes, I'm really full of wonder at the amazing beauty in this life.  So thank you for being patient with me, and not hating me when I'm less than pleasent.  I know I can be a pill, but thank you for letting me know I'm worth it - I'm worthy of your friendship, your love and your support.  That means more than anything in this world.

Thank you, loyal readers, those who read, lurk and peruse, and those who leave comments.  I'm glad that my words can inspire, touch, or even amuse you.

And, of course, to my anonymous donor and his family - thank you.  I'm so sorry that you had to pass from this world, and that on your families most horrible day - in their darkest hour, they let their light shine into my life to lead me into the light.  This is sacrafice.  This is what it means to be truly human.  To be humane.  I shall never forget this.

~Steve

When We Were Young and Beautiful

When we were young and beautiful
we were oh so unaware
the world revolved around the harmless fun
and you lived without a care
You'd see the sunset, later a sunrise
you'd sit and watch the clouds
up above in a deep azure sky

The songs we sang from the bottoms of our hearts
the quick trips in the car
to nowhere in particular
The longing, the want
looking ahead and never behind
yet looking ahead thinking it would
remain

You never listen, you only hear
and there would pass another year
and suddenly, the world would change
your old and wild friend
would carry a child
And more and more you'd hear
"Do you remember that time?"

Echoes, echo, echo upon the hills
I was young
maybe not so beautiful as others could see
but the beauty was the innocence inside of me
and when I wasn't looking
It suddenly went away
drained from my body, through some
death and decay

It's hard to feel so old, being what some say young
and some would say your life has only begun
but its hard see
when you've lost the time
when love was easy and your dreams were full
when we were young
and
beautiful

Moving.... yet again!

Well - it's been almost two years since my transplant - and we're moving again!  This time, into our own new home.  Jordan and I are about to become homeowners - and it's really an exciting, nerve-wracking, scary and awesome time!

I'm really excited about it - it feels like the next step into fully stepping back into life, moving on and growing for me.  When we moved out of our old place, into this new apartment - it was a nice, fresh start - away from the place we did dialysis in, on our own... and it was a great place to live, recover, start to gain our footing - but I'm really excited about having our own home.

It has a yard, which is going to be amazing for my dogs.  Honestly, my dogs are a great source of joy for me - I'm lucky to have them.  They just love Jordan and I so much - and now, with a place for them to play whenever they like... I just feel like I'm giving THEM something for all the love and attention they give me!

When I was on dialysis, little Abby used to wait off to the side of the room while I was attached to the machine.  When it was done, and Jordan had removed the needles from my arm and bandaged me up, she would gently jump into my lap, and nuzzle in to fall asleep for a while, while I sat and recovered for a bit after the treatment.  She was the best little dialysis dog, heh.

So, yes - moving all your stuff is a mess... I hate packing, I hate moving, and I hate unpacking.  It's such a stressful and hectic activity - plus, right now, Jordan is back in school two nights a week, so she's gone all day - plus, when she's home, she's studying like crazy.  She's bound and determined to do well in her course, and since it's a summer course, it's very short, very intense and the classes are long.  Throwing this into the mix as we try to move.... heh.

Then there's everything else that comes with moving - changing addresses, changing them with all your credit cards/banks/etc..... plus, I have to change the address for my business, Infamous Quests, as well.... so many things to remember.  I'm already ahead of the curve on a couple - already have power and water turned on, so score one for Steve.

Plus - it's Summer - I really want to do some camping, hiking, campfires, guitar playing as well... I need to get outside and enjoy the world a bit.... though it's been rainy, gray and dreary here for the past couple weeks.  It's kind of a bummer.

Well - I realize this is kind of just an outpouring of exactly what I'm doing and what's on my mind, but it really does help me to lay it all out like this.  I've been really stressed about it, along with everything else in my life that stresses me - my kidney, my weight, my health, my job, etc.... so, if you made it this far - thanks for being a part of my sorting my head out.

So much to do!!! YIKES!


~Steve

Living in the Past isn't just a Jethro Tull Song

It's a funny point, in aging, where you get to the point where you realize everything everyone told you when you were a teenager was actually the truth,  and that someday you really would miss the things you took for granted.  Just being alive is it's own ironic award.  Thank you, kidney transplant donor.  I might have never realized this fully if it weren't for you.

Now, I've gotten to the point where I see people in my circles family and friends, and they have kids who are teens - and I find myself spouting the same things to them.  I guess I realize that I am officially "OLD™" and I can actually look back on the "good old days" and realize that they were pretty good, even if they seemed rough at the time.  Then, at the same glance, I can look at things that were good and realize they weren't so great either!

I've lived long enough to have lost several family members, and have had enough time pass for me to really feel the ache of missing them in my heart.  Decades have passed, and yet I can still recall their faces, their laughs, the cadences in their voices, and the times we shared.  It's very funny to think about the youth I was in those experiences, and how I get sad to think they never got to see me grow up and change. 

You know, escaping death several times in your life generates some profound changes - and sometimes you don't even realize until later.  I've said it before, but I'm definitely struggling with finding my footing again in this world - when you become sick at such a young age, at such a pivotal point in your young adult life, it almost feels like a part of you did die then, and is stuck there.  There's part of me that's forever 24, stuck in a time before dialysis, before all the surgeries, before the close calls, before the handfulls of pills every day.  Yet, here I am, 35 years old, trying to move on - trying to start again, trying to move forward with my life.  It's an interesting duality - making progress while dragging an anchor, I suppose. 

There's so many people who say "you need to drop the past", and that's such an easy statement to make, but it's a harder walk to walk, especially given the circumstances.  There's an earnestness and naivety about the me at 24 before kidney failure that I don't want to lose.  That guy was so.... well, head in the clouds, optimistic, lovelorn and dreaming.  I liked that guy, despite his faults.  He had a good heart.  Losing that... well, that's losing myself.  Because there's a lot of fear and anger in the me post New Years Eve 2002.  I don't like it, but I have to admit it's there.  I've seen things.... things about myself, things about the world, things about mortality, futility, hope, despair.... things I had to put aside quickly to survive.  Yet these things made me who I am today - I can't change that.  This is the path I'm on in this life.

So, yes, to the young, the carefree, the dreamers, the lovers, the love-lorn, the hopeless, the hopeful - I'll give that standard advice: you really should appreciate the moment.  Because, yes, twenty years from now will happen - and you'll look back, and remember the time, and something will shake in your soul.  You'll be older, but you'll still remember the youth you were, and how that person is, and always will be, still inside you.


~Steve

Just....living.

Wow.

So, I guess I had kind of a moment where I realized I've got a bit of, well, perhaps some kind of post-traumatic stress.  I was trying to recall the year 2008 - and I honestly couldn't recall much of it.  It's very odd - it's like there's a block on my memories.  Very akin to a dark cloud or even a blur.... which is odd for me.  My mind has always been my greatest asset, and it's always been relatively sharp.

And as I probed this in my thoughts, I realized - I have a hard time remember many details from between 2006 to now. 

You know, I can only imagine what other people go through when they survive some kind of ordeal.  There's millions of people who have endured worse than I have, and I can only imagine what it's like inside their head.

I can surmise, based on my own experiences, that it's confusing, scary and definitely stressful.  This is something I think I'm really going to have to work on in the next year.  I put a lot aside to deal with what I had to, and now when I think of the time - I think all the emotions I didn't let myself feel are slowly leaking out.

There's some changes coming in my life - my wife and I are moving into a new home, my business is beginning to take off.... I just hope that I can continue to keep living a life of quality, harmony and happiness.  Because, honestly, there's some dark times in my head - in spite of all the good.  But I do love and believe in the good, and I think that's the first step.

~Steve

To My Loved Ones, On My Birthday

So, you know, because I was lucky when I was younger, birthdays were always about getting gifts. When I was young, it was just something that happened - and, sadly, I expected it - humility and a greater appreciation of what not only your friends and family give you but the world at large comes later in life for most. (Or sometimes not at all!) 10 years ago, I turned 25 - I'd been on dialysis for 5 months, and I was only starting to realize the magnitude of my situation. 6 months after that, my Dad gave me a gift of a kidney... and it wasn't even my birthday! And after the problems with that arose and the kidney eventually failed, I wondered how many more years I had in me. You know, you live with something like End Stage Renal Failure and dialysis - you get one of those unfortunately lucky glimpses into life - you think about the big picture, where you fit in, your purpose, your time here... everyone comes to different conclusions in that arena. For me - I always tried to look at what I had, not what I didn't. But that's hard, for sure. So, two years ago - when dialysis was finally breaking me down, and I felt like I didn't have much left - an amazing thing happened. A group of my friends rallied and banded together to support me - they donated their time, their love and their compassion to help me and my wife. I can't tell you what it's really like to experience such an outpouring of love like this - love and friendship. I spend a lot of time worrying over the things I've done wrong in my life, but I must have done something right to have the love and friendship of so many of you out there. You've all, in some way, touched my life and you all have a little seat inside my heart. I can recall a hundred thousand little moments with you - things we shared - a laugh, a song, a hug... a good time, a bad time... In the end, when you think you might go - it's these little moments that mean so much to your heart. I'll never forget that benefit - how it was like watching a million small, wonderful moments form into the great big moment... and even when I still think about it, my heart just can't contain all of it. I love you all so much - you, the friends I've made along the way, the amazing family I was born into, the incredible family I lucked out and married into and the family I've "collected" in my travels. Seriously - if birthdays are about gifts, in 35 years I've learned that the greatest gift I've ever received is, and always has been, you. I've lived an amazingly wonderful and charmed life. Thank you all for letting me into yours.


~Steve

This post may be a little graphic about the bathroom behavior of the author, but honestly - if you've ever read more than two posts about this blog, you know I talk about the unsavory aspects of life that everyone has to deal with.

So, when I got my new kidney - my bladder had atrophied to the size of a walnut.  Seriously, I couldn't hold it for very long at all!

Now, two years later, heh, I still don't think it's as good as "normal" people's bladders, but it's much better.  I should note that I was told, after my last surgery, that they found a lot of abnormal scarring in my bladder, noting even more that they screwed the pooch hard-core on that surgery that damaged by first transplant.

But last night, I managed to sleep almost the entire night without having to get up to pee.

These are the monumental moments in the life of a man who's had two kidney transplants and is rapidly approaching middle age.

I woke up and used the bathroom this morning, and I swear I peed for three minutes straight.  It just kept coming.

And it was glorious.

Yet, still, almost two years out - I still worry.  How long will I have it this time?  It's hard living under that kind of pressure, for sure.

So I have to make sure I enjoy any and every three minute pee I get.


~Steve

Reflections On A Man - and His Guidance

Several months ago, an old friend of mine passed away after a vicious battle with cancer.  He was my high school guidance councelor, but I had the privledge of knowing him for years after I left those hallways.  This was what I wrote about him at the time.
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You know, when you're a teenager, you have this silly notion that teachers, guidance counselors and other administrators at your school aren't "real people". Not that they're some kind of robot that patrols the hall, but you never stop to consider that they have lives outside of the school - much like you do - and that they don't leave, breathe and die for you and whatever happens to you.
It's only when you finally graduate and leave those hallowed halls that you find out life is ever so much more vast than it was inside that little microcosm of school - and infinitely more vast that your own little petty concerns of living. You find yourself a small part of that big, bad world out there, and suddenly you're a growing, developing and changing part of society yourself.

So years pass, and you find your mind wandering at times, thinking of your life, the human condition, and the people you've met along the way. You know - those light little questions about existence. All kidding aside, I know I spent a lot of time thinking about the adults that I knew growing up - the administrators and teachers that guided and taught me. It dawned on me that working in a school - working with and FOR the students - was their Job! Working with little wild, selfish, snot-nosed punks like me was their career. Suddenly I thought of the loud, myopic, loutish brat I was, and felt like I owed a lot of people a few crates of whiskey and at least a few rounds of beer.

So, when I heard of Tom Yanno's passing, I can't deny that my heart became just a little bit heavier, and I could feel the tears well a little in my eyelids. When I was a young warthog, I was probably more than a little frustrating. Amiable enough, but as unfocused as an old 8mm home movie camera, and enough energy to run down even the most tenacious od adults who tried to corral me. But, when I got to High School, and I met the man who would be my guidance counselor, I had to admit - his smile, handshake and height made me take notice. I knew him, politely, as Mr. Yanno - and he took me into his office, and we just talked. About.... stuff. Talking about "stuff" is really, really super-important to a teenager! Anyone that wants to listen to what's important to you - what sings in your heart, well - wow. That's rare! Most of the time I had to be told to "Sit down!" and "Shut up!" (If these commands seem harsh, rest assured I deserved these!) Mr. Yanno really cared about what you were talking about - and damn it if he didn't remember all the stupid crap you were into, or some little detail about your life or your family. I liked that - and now, as an adult who is many years away from high school, I think about the sheer number of kids over the years that man talked to, got to know, guided, agonized over, pushed and directed... it's just simply a Herculean task that I think many people rarely recognize. Why? Kids are jerks most of the time! Having thoroughly been a teenager for more years than I should have been, I can attest to this fact!

And usually, when you finish high school and move on, you don't always see these people much at all, anymore, if ever. Tom was instrumental in pushing me to achieve the goals I needed to get me into College. I definitely resisted because I'm quite sure I'm a moron, but he did it - and he got me to not only take, but pass the dreaded math classes I needed, and the science classes I needed. I would be lying if I said I made it on both with flying colors - I've always been a seat of my pants guy - but I made it. And I went to college.

And so did Tom. Later on, I would see him while I was attending LeMoyne College - he began working as an admissions counselor there. So, there I was, still seeing that smile and hearing that laugh, and always getting a "Hey!" in the hallways, or the occasional stop and chat.
We're only on this planet for a short time, really. We never know what kind of time we have - what we'll have to do, or what we'll have to face. Sometimes it seems like such a rat-race to get ahead, as they say - grab your piece of the pie, take what you can get, when you can get it, how you can get it, and before someone else. With such a bleak mentality, it can be hard to exist in this world. But then I have to think about men like Tom Yanno. I think about the thousands of lives he touched. That's thousands of connections with other human beings. Some may have been great connections, others not so much - but he did that. And when you touch one life, maybe what you do touches two more - and it goes out exponentially from there. Now, as I said before, I struggled through those stupid math classes, but I can say right there - there's millions of connections out there that began with something that man was doing right simply by existing. Tom had a wonderful family of his own, who he loved to spend time with - and he was always so incredibly proud of his girls. He talked about them, boasted about them and I'm sure was teased by some of his students for "having daughters they want to date!"

I don't have the patience, nor the real experience to guide students. It's not my lot in life - but, dammit, I can't even express how much respect I have for this man and what he chose to pursue in his time on this Earth. I would love to just be able to touch as many lives as he did, and I can only hope that I will someday leave as much of a positive mark as he did.
I'm glad his suffering is no more, and though I am sad to think that he has left this world - he leaves it doing more than most people think could ever be possible in a life time. Godspeed, Thomas Yanno. Your essence, your spirit, your soul will continue to keep touching, keep affecting, and keep changing lives. Your restful peace is more than earned.


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Losing people hurts - but the impact they can leave in your life never leaves.


Bt

Hermanos

NOTE:  I wrote this one a few months back - and for some reason it never posted.   So I thought I'd share it now.

I'm the middle child.  I have two amazing brothers, and you know - I love them dearly.  Being a brother is a funny thing - with my siblings, we've always had a unique experience.  My older brother, Alex, is 6 and a half years older than me.  David, my younger brother, is two years younger than me.  I've always had a close relationship with both of them, and that has continued on into my adult life.

As a child, I remember just idolizing my older brother.  He always seemed so cool to me - he always liked the coolest stuff - video games, music, girls.... we lived in a house in North Syracuse when I was young, and I shared a room with David - Alex's room was across the hall, but the rooms were connected by this little attic crawlspace.  I could easily walk through it, and I'd often go through it to pop up in Al's room.  I'd come in, and bother him.  I remember once coming in to show him how I could count to 100... by 1's, 5's and 10's.  Al was always cool to me, even though I was so much younger and annoying.  As we got older and he got into high school, I remember him having friends over, and me - ever the showman - would always try and charm his lady-friends, who would say I was "so cute".  I, of course, HATED the attention and tried to get away.  (This is a complete lie.  He would often have to shoo me away.)  He'd bring me to sports games at the high school, and I'd sit with the big kids and I was never so happy.

I was a bit  of a pill to my brother Dave.  I think he really got it bad from me, as the "older" brother, I tried to enforce my will on him at every step.  Dave, to his credit, was more patient with my antics than some people would have been.  I think he just dealt with me - though for years we'd fight like cats and dogs.   There's a funny family story where my Dad went to put on a tape of Christmas Music he'd made - only to find that I'd erased half of it with a homemade recording.  Apparently, one day when Dave and I were fighting, I threw a tape in the recorder and taped us fighting.  I used a lot of "choice" teenage language in that tape!  When we heard this later on, with our pre-pubescent voices swearing at each other, it was more funny than anything else.

But Dave and I were tight, being so close in age.  We did a lot of things together, growing up, and shared a lot of the same friends.  I wasn't always the easiest kid to get along with, but Dave was oddly protective of me.  When I started playing guitar, I wasn't very good - and a lot of my friends and neighborhood kids would put me down about it.  Dave stood up for me, and encouraged me.  Eventually, I got better, and played in several bands - Dave used to come to all my gigs, screaming and shouting for me.  He was always "that guy".  My biggest fan.  When I was in college, he and Alex would often both come to my gigs, and they both raised a ruckus supporting me.  I don't think I would have enjoyed myself so much on stage had they not been there.

My brothers have always been amazing part of my life, and my support.  When I first got sick, it was Alex's urging that kept me alive.  He had just had his first daughter, and as I was willing to give up and end my life there, he burst into my room demanding that "I tell my niece she has to grow up never knowing her Uncle."  I can still see his face, furious in intensity, sadness in tears.... urgent.... I will carry that image in my head until the day I finally do expire.

Being a brother isn't an easy thing; we've argued and fought over the years.  Sometimes, so hard that we don't speak for some times.   But the love we all feel for each other is so intense and so palpable, I can't even describe it.  Though it is certainly one of the intangible things that fuels me to keep going.  They are a gift to me, and a gift to my family.  I can't even say how much I love them.

It's one of the things I love about the holidays; seeing both of them as we spend time with our parents.   It's one of those things that I cherish more than all the presents under all the trees in the world.

I love my brothers.  So much, it's silly.  Sometimes, I feel like I don't tell them enough.  But I do - I just love them so damn much.  I love how smart they are, I love how amazing they are and I love that they're mine.  I just want them to be the best they can be and to ultimately be as happy as they can be.  I know I wouldn't be who I am today without them.

~Steve

Survivor's Guilt

I have a pretty tough confession to make here.

I have been battling some serious and crippling depression ever since I got my transplant almost two years ago.

This is going to be hard to get out with any kind of coherancy or eloquence, but I'll try.

When you're deathly ill - you're just trying to make it to the next day.  All of my energy, for almost 10 years, was just trying to make it to tomorrow.  To go to sleep and wake up the next day.  Pushing - I saw dialysis as just a means to keep me going.  To keep me sustained... the kind of life I was living on it... I made the most of it, but mostly I was just getting by.  I was hanging... clinging to life by a thread.

It changes you.  I think in some ways, it changed me for the better - I definitely re-arranged my priorities in life, and I know I grew as a person!  I mean, hell, I got married and managed to have a great and meaningful relationship while do dialysis!  She came along on the ride directly, too, being my caregiver. 

So, you sit there - on dialysis, waiting on "the list" for your "miracle" to come.

And then... the unthinkable... it does.  It comes.  Your miracle.

You know, the goal for so long was The Miracle.  The thing is, after the miracle has been performed, there's still a life to live.

All the regular stresses and trials of living... they're still there.  And suddenly, you have to face life again.  And where do you go?  Especially me!  I went into this as a 24 year old brat, and emerged as a 33 year old man...

And why me?  Why am I alive?  What am I supposed to do that's so great?  Can I take care of myself and my wife now?  What the hell do I do?  Where do I go from here? 

What if the transplant fails again?  Can I do dialysis again?  Why does everything cost so much?  I'm going to be a drain on my wife and my family forever... this is going to happen again....

Losing the kidney constantly goes through my mind.  I'm always taking my pills; so much so, that the thought of them or missing them gives me panic attacks.

It's been almost two years.  I'm still here.  It's still working, yet I still wake up in cold sweats every night, worrying about it.

I worry a lot.  I'm strong, and I know I'll figure this out, but there's so much on my mind... all the time.  I just wish I could turn my head off and coast through things a bit more.  But every moment I'm awake, I have 3,000,000 thoughts a second about everything I'm doing.

I just want to live a good life.  In someways, that's harder than waiting for the kidney.  And this makes me incredibly depressed.

~Steve