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.
---------


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.


----------------------

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

A Teardrop In The Snow

There's no snow right now.

I'm really okay with that - be it global warming or whatever apocalypse that'll kill us all someday - I'm okay with it for now.  I've spent 30 plus years dealing with the snowbanks, the ice, the wind, and the chills.  It's funny; the cold never used to bother me - before I got sick.  I would be that asshole in shorts and maybe (distastefully) wearing socks and sandals.  But my kidneys finally died after years of not being treated, nor illness detected and suddenly the anemia that accompanied a lack of kidneys set it, and cold chilled me to the bone.  It's been 10 years since then; I still remember the Christmas of 2002 - though it's literally a visual and mental blur in my mind.

My vision had slowly been going dark and blurry during the month of December in 2002 - and the previous months had not been good for me either.  I felt as if my mind was coming apart, and I felt like my body was finally ripping.  I didn't have any answers; sure, I was overweight.  Sure, I didn't sleep well.  I drank occasionally, but not anywhere near the level of other my age.  I smoked socially, too.  I always figured I'd have some problems, but this was more.  I was being torn apart.  My mind was slowly going as well - my paranoia was out of control, my rage unquenchable and all my thoughts disjointed.  Depression, disillusion - these were mild adjectives compared to the war in my head.

When you're circling the drain, sometimes you refuse to believe it.  You just think that you're a gigantic screw-up, and everything that is happening is your fault, because of some stupid thing you didn't do:  didn't take care of yourself, didn't do your chores, didn't pay your bills, didn't go to school, didn't live up to your potential, didn't follow through on your commitments.  You never think that you're actually physically dying.

You just think that you're a big waste of space.  A stain, perhaps, on the large wall of life - and no one but you notices or cares.  It's a big wall, man, and it's full of stains and your little mark ain't gonna mean shit.

So, there I was... circling the drain, and denying it.  Denying it when my eyes began to get dark and blurry for no reason.  Gotta be an eye infection like Pink Eye or something.... Shaking uncontrollably .... probably because I eat like crap and I don't sleep well at night.... An odd pain in my back when I pee sometimes ... It's only been happening recently... maybe I have some kind of infection.  Get some anti-biotics or something... get some cranberry juice...

A million little excuses, and a miserable man for the holidays.  My life was in shambles.  I'd let my current semester of school go to hell after enjoying several decent semesters back.  I just didn't care.

And so I sat, shaking violently, with a scowl on my face at Christmas.

I've told this story one thousand times before.  Lost my vision.  Went to see a doctor on New Years Eve.  Rushed to the hospital.  Stubbornly sat in the hospital, waiting for them to give me a pill that would fix things, and let me on my way.

I never made it to the expected parties that night.  Instead, my life turned into the impossible.  Sometimes it still feels like some crazy "Special Episode" of a sit-com, where the protagonist learns some great, huge, life altering lesson... and then in the next episode, proceeds like nothing changed.

Only, for me, there's never been a next episode - as my life changing event will never, ever go away.

Needless to say, I lived.  I did dialysis.  My father donated a kidney to me, and we kept that going - despite the injuries it received in another surgery - for three years.  I met the woman who because my best friend and my wife.  I did dialysis again.  She taught me how to live, love and laugh in the face of so much despair.  We faced the future together - and our second miracle came only a year ago.

Learning to live again, in the world, is a lot harder than you'd think.  In a perfect world, you'd think that you'd get the transplant, and suddenly - all is right with the world.  But what I failed to think about is that life, on its own, is hard for all of us!  That doesn't go away when the big thing you deal with is suddenly kept at bay.  I have to admit - at times, it hasn't been easy to settle into "normal life" over the past year.  I'm still gaining my footing - I'm still growing as a person, and I'm almost learning how to walk again.  At 34.  It's kind of scary sometimes.  I'm kind of scared sometimes.

But that's life.  And though the weight of it sometimes feels like it's crushing me, sometimes - just sometimes - it occurs to me that the weight of MY life isn't crushing me, but just holding me up.  The measure of my life so far feels reflected to me in the company I keep.  Heh, I seem to know a lot of people.  A lot of people seem to know me - and everyday, I'm touched by them.  In so many ways.  I can be a sweet, caring person - giving of myself, or as much as I can give - sometimes.  Other times, I can seem wry, mad and curmudgeonly.  Everything seems to piss me off these days, and I'm always complaining about "the kids on my lawn."  It's often just a deflection from my soft and sentimental heart.  Anyone who really knows me knows how much I care about things - from the stupid and the mundane, to the important - like friends and family.

The lives of my friends and family are what keep me chugging along on this Earth.  You're all so varied and different, and on so many adventures.  Some similar to mine, some completely different.  But, holy cow, what a swath of people I know - just the different walks of life - different occupations, different ages, different stations and places in life - differences of opinions and differences of some values.... similarities in zest for life and for love.... sometimes, it's too much to comprehend.

Then there's the life and love of my Jordan.  It's crazy; for all the words I can write and rambling I can do on a million subjects, when my words turn to my wife - I often feel like I'm stumbling over my feet... or my fingers.  My heart turns to this... vast machine that I can physically feel pumping in my chest, and the space behind my eyes turns blindingly bright white.  My pulse quickens, and a lump develops in my throat and in my chest.  My breathing gets rapid - and I just can't find... IT..... the words.  I hear angels in my head, singing the choruses of songs I wish I wrote, and heavenly beings playing ungodly instruments in the most beautiful intervals and chords that I can imagine.  I can't hold it in - I can't capture it.  It's totally stuck inside my head, and I stumble.  Anytime I try to write the words to convey the thoughts... they feel like a cheap imitation of the epic in my head.  Every time my fingers try to re-create the music, it feels like an insult in 12 intervals.  I fail...so hard... and yet... I've succeeded beyond any kind of understanding.  The way she touches me, grabs my hands, looks at me - and understands this blabbering idiot of a man.... well... I... I'm here.  All these words, and I still... feel... so... far... from what I feel.

Love's different for everyone.  But my love for Jordan... maybe it's only for me to know, and for me to spend the rest of my life trying to show only her.  Whatever it is... it's the single greatest thing I have ever known.

So, later on this season, as we drive around my old stomping grounds, and look at the Christmas lights, hung with care, and I hold her hand - I think I'll only shed one teardrop in the snow... and not for mourning my illness, or what it was like to live under that - but to be thankful for all the love I'm surrounded by daily.  To remind me of what I always wanted, growing up in a small town where people still hang their lights with care - to remind me of Christmas's past - and to Christmas' future.   I sure hope there's snow in Christmas' present.

Merry Christmas to all.

~Steven

Ten Years After.

Ten years ago.

Ten years ago... I was a boy.  Probably thought I was a man.  I definitely didn't know what the hell I was going to do with my life.

Ten years ago... I was feeling funny.

I'd always felt odd.  Oh, no, not just in that mental "I'm different!" way that everyone screams to themselves when they're locked away in their own brain - wondering if everyone can hear the thoughts that might creep out of their ears, unspoken yet heard - and judged.... the stares, the looks, the whispers the laughs.

Yeah.  This is how I was starting to feel ten years ago.   I was feeling.... crazy.

Boy my mind felt it, but so did my body.  I had trouble sleeping.  I always did, though - I had sleep apnea.  I slept with a CPAP for the last four years... everyone called it my "Darth Vader Mask".  I'd always been overweight... I ate crap, like a typical college student.  I'd drink every once in a while, but that had been making me feel even worse in the last six months.  I used to casually drink the same beer all night, pretending that it was a different drink every time someone saw me.

I couldn't concentrate in school.  I'd been back in school for over a year now, after a lapse in enrollment where I basically floundered around, wondering what the hell I was doing on the planet.  I worked odd jobs.  I played in a rock band.  I mostly just wasted time.  Waiting.  Waiting for something.   So being in school again at least felt like some kind of direction.

But classes - I just couldn't make it to them.  Or concentrate in them.  Some days I'd show up, and feel like I learned something or participated in a meaningful way, other days, I felt like a husk in a chair.

I was getting paranoid.  Like I was some kind of neglegent drug addict.  Only... I wasn't doing any drugs.  I wasn't doing anything.... my friends seemed to be judging me... or I thought they were.  Life seemed so dark.  I felt like I was just an eating, craping, and sleeping machine.  A living biological failure, doomed to wander through a black and gray world until my biological processes stopped.  What was going on?  Where was the world I loved?  The world I used to cherish - and celebrate... my body hurt.... and suddenly, I got a weird pain in my bladder and in my back when I peed sometimes?  Was this my punishment for eating too much crap and drinking too much when I was younger?  I didn't indulge any more than any of my other friends... and they were fine, living away their lives with the same reckless abandon we all did.... I just couldn't.

People tried to talk to me.  I didn't hear them.  Useless bags of flesh yapping their jaws at me - telling me things I already knew.  Things I knew and didn't want to hear again.  I wanted them to go away.  I wanted me to go away.

Ten years ago, I was going mad.  I was losing it.  My mind had finally frayed - all the years of stress I put it through with my neurosis and over-thinking.  All the pain I caused it with bad decisions.  All the late nights, lying in bed, having panic attacks on life.

My brain, my precious mind, had given up on me.  Just like everyone else.  Everyone else had already written me off.  I was lazy.  Indigent.  Incompetent. Morose. Labeled.  Packed away, written off.  "He's twenty four, he knows better."

All I had was my mind.  It always loved me, even though I was a mess.  But now, it too had packed up it's bags and left the Steve train.

I was alone.  So utterly alone.  I'd always been alone - even in a crowd of people.  Even surrounded by friends.  Even when enjoying life, oh - I was so utterly alone.  Something.  Was. Always.  Wrong.

I would end it.  I would let go.  I'd drift through this as long as I could.  Then something would come and take me.  I could feel it.  It didn't even matter.

Ten years ago. I think I died.

Ten years ago.  A decade.  A decade has passed me by.  And though, in almost two months from around now in 2002, I was taken to an ER, and immediately placed on dialysis - saving me, and changing my life forever, I definitely think something died in me that fall/winter of 2002.

I was twenty four.

The arrow of time has kicked me along to thirty-four, and what a different life I've lived in the ensuing 10 years.  What an amazing and different life.

Sometimes you have to die to be reborn better.  Stronger.  Happier.

But it doesn't mean that sometimes I don't mourn the life I lost 10 years ago.  Now I just cherish that I'm basically still a baby, learning a great new life after only 10 years.

I hope I'm around for this ride a lot longer.

~Steve

Over a year later

So.

I've had my kidney transplant for over a year now.

Whew.  It's kind of hard to process; I've been thinking a lot about what my life was like in the four plus years I was on dialysis this last time.  It's so hard to catalogue everything.  I feel almost like I did nothing; like I was in stasis, but the truth is far from that.  Jordan and I did a lot together in that time - we tried to live our lives to the fullest, despite my own limitations.

It's just hard to look at, when you're a dreamer and a "go-getter" like me.  I know what I'm capabable of in my own mind - in my head, I'm freaking Superman that can do a million things at once.  In real life, I'm a dude who's had some serious health problems that have slowed me down over the years.

So, I had the miracle of a transplant - yet, here I am, still a year later - shakily still finding my feet.  You know, a miracle doesn't cure things immediately.  It relieves many things, but the problem is when your health improves, life intrudes!  All of the things you didn't have time to worry about come piling on.  Life happens.  Still trying to navigate that, for sure.

I guess, tonight, as I write this - I'm feeling really depressed for some reason.  I don't really know why; I'm sure we all feel a little lost and adrift at times.  It's funny, because I know tomorrow I'll probably wake up with some new sense of purpose, and continue attacking life with zeal.  For right now, though - I'm contemplative.

Life is so hard sometimes - for everyone.  I worry about folks still on dialysis.  I worry about folks with transplants - knowing it's not a forever cure, but a treatment we have to maintain with our drug regimens.  I worry about people taking the time to still help and care for those who are ill, infirm and in need of help.  I don't want to forget where I came from.  But sometimes, moving on means forgetting some things.

Well, it's a year later - the transplant is still working, I'm militant about taking my pills, and I'm trying to be active.  I'll tell you - I just spent a week traveling on the road with Jordan and our two Boston Terriers.  Couldn't have done that on dialysis - and it was a pretty amazing feeling.  Heh, yet - just like normal people who travel, the driving got monotonous, and the back seat of the car became a quagmire of smells and water bottles.... heh. 

To anyone out there still reading this who is on dialysis - hold on.  You know, I love you.  I do.  I love you guys.  I love that you hold on. I love that you endure.  I love that you may still have hope.  And if you're losing it, don't.  Really, it's the one thing that you have that it can't take from you unless you let it. 

I'm just trying to get along in this world.  For now, that's all I need.


Sorry I haven't been writing as much in this as I used to.  Maybe I'm still recovering from the transplant and dialysis in other ways.

~Steve

Running Down a Dream

Hey - I know I've been lax as of late - it's because I've been chasing a life long dream of mine.

In 2003, while on dialysis, I met a community of game-programmers and gamer makers on the internet.  We all shared a passion for some old computer games by a company named Sierra. So, along with a guy named Shawn (who was from Australia), we founded a group called "Infamous Adventures" - we wanted to remake some of these old, forgotten classics.  So we did!  In 2006, we released a remake of a game called King's Quest III - it was downloaded, worldwide, over 1 millions times - and we received much critical acclaim and praise for it.  It was fun - I spent a lot of time working on it while I was sick and recovering, and it was a great way to bolster my spirits.  We decided to do another remake of a game called Space Quest 2.  I spent most of my time working on this while I was on dialysis the second time, from 2007-2011.

Working on the games really fulfilled that childhood dream I had of making computer adventure games, and it kept me going.  There were several times, though - as you all may know -where I thought I wasn't going to make it.  I even had the passwords and information to all of IA's assets ready for Jordan, so if I died the guys could continue on.  Then our miracle happened, almost one year ago now!  While I was recovering, I was determined to not only finish Space Quest 2 by years end - but also to begin pursuing our first commercial project - Quest For Infamy.

I've spent the last 8 months working on it - setting up all our ducks in row, assembling the finest team of artists, musicians and programmers - and we went out and made a demo to show potential backers what the game would be like.  I became aware of a new site, Kickstarter, which used "crowd funding" to get people to pledge to back your game, if they believed in you.

We launched our Kickstarter two weeks ago - with a modest budget goal of $25,000.  We broke that in less than two weeks - and we're still climbing.  We're at over $40,000 raised and it's just going crazy.  We're going to be producing this video game now, and I'm achieving a long standing dream of mine.

I couldn't have done it without the support of my wife and family.  Jordan has constantly supported me in it, offering me advice, helping out with the large amount of grunt work, tested the games - she even recorded some voices for it! 

Almost one year later - I'm lucky to be here and chasing a dream.  Just recently, a long time reader of my blog was able to donate a kidney to her husband, after they thought all hope was lost.  He wasn't even allowed on the transplant list.  As of right now, they appear to be doing well.... so I'm thinking about them a lot lately.  I hope they feel the life changes Jordan and I have.  Though it hasn't always been easy this past year - finding your way back into "normal" life is a struggle - at least I have the chance.  We have the chance.

It's a great feeling of accomplishment.  I want to thank you, again, to anyone who reads this.  This who experience - the last 9 years of my life... have been amazing.  And though it's been a hard journey, I'm glad it was me who went through it.  It makes achieving a dream that much sweeter.

To all my friends out there, still struggling on dialysis or waiting for a transplant... hold on to your dreams.  It's all we have sometimes, and it's better to have them than to malinger with only bitterness to keep us company.

~Steve

Coma

You know, when you're on dialysis - you have an immense amount of time to just sit around and think.  It seems like I've lived my life, from childhood to adulthood, over and over again in my head all those times I sat in the chair - sat, watching the bright red blood flow out of me in thick spurts through plastic tubes - sat, watching the blood flow through a filter, and pass back into tubes and flow back into my body.  I sat, watched and thought.  You're so scared of the future you might not have, that you just have to remember your past.  It was always better to think about what I had done rather than what I did not yet do.

Now, looking to the future and the possibility it holds.... it's not as easy as some (including myself) may have thought.  You get the gift, and all of a sudden all the things you put aside just to survive come flooding back.  I've spent the past 10 years being a patient, and just fighting to stay alive... to maybe make it to someday. Actually getting to think about the future... and wondering what the hell really happened the last 10 years.... now I'm battling monsters and gazing into that abyss, and all the Nietzsche I may have read doesn't mean a damn thing.

I makes me wonder what life is like for someone who suddenly comes to after being in a coma for years. 

I feel like I've been watching life for 10 years, and now I'm suddenly living it, and holy hell, is it hard.  I'm more impressed with people that deal with existence well on a daily basis.  Lord knows I'm not.

~Steve

Changing The World - starting small.

The Mega Millions Jackpot was almost $640 million dollars last week.  $640,000,000.  Over half a billion dollar.  Winning that kind of money inspired a lot of people around the country to buy tickets last week - including me.  I only spent a couple of dollars on it; the odds of winning are astronomical, but as they say - hey, you never know. 

I know most people dream of all the crazy things they could do or get with that money - half the fun of big lotto jackpots is just the dreaming.  I'm sure the reality of winning is quite different; your life changes, a lot for the good, some for the bad - people come out of the woodwork to beg you for money, etc.  Whatever.

The dream for me.... well, I can say it's definitely changed for me over the years.  Sure, when I was young, I dreamed of walls of guitars, tour buses, studio recording, fancy cars, exotic vacations, giant mansions.... all kinds of gadgets the heart could desire.  After I got sick, though - I always thought "What could I do with that kind of money to help make a difference in the way that I would want to."  Sure, I still think about paying off all my debts, helping out my family and friends, getting a reliable automobile and investing some for the future.... but winning hundreds of millions of dollars?  Wow...

I have these dreams of building dialysis centers in more remote places in the US that don't have close facilities.  I know a lot of people that are sick that live in the northern part of NY, in the Adirondacks, often have to travel far - to Syracuse or Albany often to see nephrologists or do dialysis.  I always think about building clinics up there - you know, it wouldn't just be providing people with the care that they need, but also it would provide jobs for people..... I really can't tell you how dreaming of doing something like that makes me feel.  Oh, I plot out in my head - the kinds of amenities I'd have for the patients there - comfortable plush seats and couches, beds, cable/satellite television, Wi-Fi for patients and staff alike, a library full of books and DVDs, comfortable and modern work stations for the staff - pleasant green room seating for the families, a great in house cafeteria - offices for nephrologists in the building, emergency care services, nutritionist services, an ambulance garage.... I think about it every time I see a big lotto jackpot.  I think of starting a charity group that helps raise money for struggling families of dialysis patients - one that really gets funds to the people who need it, not just some charity that functions to raise funds to pay its board members.  I think of starting a massive organ donation awareness group....  I wish I had the funds to pursue projects like this.  Nothing would make me happier than to spend it all on getting the ball rolling on things like this. 

I have trouble sleeping at night sometimes, and I often think about these dreams to put me at peace and lull me to sleep. 

But I know they're dreams - right now, I guess I have to change the world in small steps by changing mine first.  It's easy to daydream about these kinds of things - but life is a cruel mistress, and giant sums of money just don't always fall into the hands of people.

Life after a transplant just takes on such a new meaning - I'm really emotionally all over the place right now.  I get so sensitive about people who are suffering from diseases that are chronic and potentially deadly.  I have quite a few friends in my life right now who are all going through some incredibly difficult times, health wise.  All we want is our chance to pursue life, liberty and happiness.  I would give anything to give them relief, or be able to cure their ailments.  And here I sit, with a transplant that is functioning so well and I feel so helpless to help them.  Just a year ago, I was sitting at death's door; I was seriously ready to die.  I'm lucky.   There isn't a cure for End Stage Renal Disease, but a kidney transplant gives you the closest shot you'll ever have for a normal life.  And Goddamnit, it's just not fair to some.  And then I hear so many people I know talk so callously about health insurance, medical care, medicare and medicaid....  so callously.  It's just some hot button political issue to them, and they can write off the faceless masses of the suffering, and here I am - having lived it, seeing my friends and family live it, and I think "Do they ever think about us when they say these things?"  The sick far too often get relegated to stereotypes, or faceless numbers on some insurance bill.  We have faces.  We have lives.  We have families.  We have loved ones.  We have a life, and damn it, we want to live it the best we can.  We are not just chattel to be disregarded or thrown away.  We have just as much right to the pursuit of life, liberty and the pursuit of happiness.  The Pursuit Of Happiness. 

The money can be damned.  I don't want to be a drain, but I just want the chance to be a part of this world.  I ain't too good at many things in this world that seem really useful, but I think I'm damn good at loving being a part of it.  I know a lot of others who are damn good at being a part of it, and they're stricken with disease too.

As usual, I'm rambling.  It's probably the steroids I'm on for anti-rejection, but I just feel so passionate about everything these days.  I think it's because I've been through 10 years of illness - 10 years of being unsure about where or who I'd be in the future.  10 years of being ready to die if things went south.  And I'm only just starting to come out of that.  

So, of course, like every dreamer - I want to change the world.  I guess I just have to start by changing me, and you know what - changing me, getting back into life... being an independent success in this world.... it's often scarier than facing those needles every day.  I'm glad as hell to be off dialysis, but now what? 

It's up to me.  I'm resting - still trying to deal with and put the stress and trauma of what I had dealt with behind me.  But it's all up to me.  Just a little more time is all we're asking for.  Then, out I'm going to come.... guns blazing, and working to at least make the world around me a little better.  The rest will hopefully come.

And I swear if by some miracle of fate or hard work I become insanely successful, you bet your ass I'll have that dialysis center constructed in the North Country.  And if that's a success, maybe I'll seek out some more remote locations in the US and build more there.  Then, the world. 

Baby steps, Steve.  Baby steps.


~Steve