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