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