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

Hope For Others

I went in for my routine checkup at the Transplant Clinic the other day.  As for me, things are great - six months out, labs are awesome.... my blood pressure is amazing.  If I keep losing weight, they may take me off it entirely.  Which is a crazy concept for me!  I've been on some for almost a decade now....

But this isn't about me.  I'm very happy that things are still going well for my transplant.

This is about the waiting room.

I was sitting in the waiting room, (waiting, appropriately) when there was a young girl and her mother sitting in the room, reading over the massive amounts of literature that they give you when expecting a transplant.  She must have been between 15-17.  She was really young - and she seemed upbeat, but was getting a little worried about all the rules and regulations that come with having a transplant.  Another patient and I who were waiting started to talk to her about it, and we were all laughing in a few minutes.  She said "Well, it's better than dialysis, right?"

"Hoo yeah, " I whistled.


She asked me how long I'd been on it.  I told her a total of five years.... turns out, she'd only been on it since December.  She was getting a live donation next Thursday - from her aunt.

I was so happy for her - what an amazing gift.  Though I was sad to - someone so young and exuberant had to endure all of this.  I thought I dealt with it pretty young, but she was just a teenage girl.  Of course, my mind wandered to all the youngsters who have had to deal with this.  Jordan and I have a friend who has been on dialysis since he was a baby - and had several kidney transplants.  I think of him everyday, and how he's struggled but he's made a life for himself through incredible adversity. 

This disease is really hard - sure there are treatments, but there are no cures.  A transplant isn't a simple guarantee or a permanent fix.  It's a borrowed gift, and you have to maintain it.  It's another form of treatment.  All of use will be dealing with all our lives.  Me, Our Friend and this girls.  Hundreds of Thousands across The United States of America.  Millions around the world.

I know people don't know much about organ failure, and kidney failure in general.  I still get asked all the time by people "How's Your Liver?" or they accuse me of drinking myself into kidney failure.... it's quite annoying.  But that's how people deal with disease.... even when someone gets cancer, many times they'll say something like "He smoked himself into it!" or "He ate carcinogenic food!".... it's just a way people deal with it.  It's easier to put the blame on someone else, rather than realize that it could happen to themselves.  Disease can, and does, strike anyone, anywhere, at anytime.  It's a hard fact of life.  But you can survive.  You can go on. 

I wish this girl so much luck and love from the bottom of my heart.  I hope things go well, she goes to school, has fun, falls in love and does all those other things that make life the amazing and grand adventure that it is.

I hope that others will not live in fear of disease, but give of themselves when they can to those who do have to fight it. 

I hope that scientists can work to find a "cure" for kidney disease, and other organ failures. 

I hope - and that is what keeps me alive and going in the most trying of times.


~Steve

2012

So, I start 2012 with a kidney.

Wow.  It's amazing, really.  Just amazing.  I started off last year seriously thinking that 2011 might be the year kidney failure got a hold of me and sent me packing.   Now, here I am a year later - feeling very different.

Things are working well with the kidney.  This week, I'll be 6 months out from my transplant.  It's working great.... it's just awesome.

Still getting used to life with the kidney.  I've gained a BUNCH of weight post transplant - combine prednisone with a returned appetite, and a dude who loves to indulge his gourmand and... well, you get a pleasantly plump Steve.  Not like I was slim before, but dialysis had me down pretty low, weight wise.  So, I've bit the bullet, accepted that I'm in my 30's and I've adjusted my diet and joined a gym.  My amazing wife and total partner in crime, Jordan, has joined me in this endeavour and so far - it's actually been really amazing.  We joined Planet Fitness,  which is really a great place to go try to get yourself back into shape.  Not to sound crude, but it's totally a gym that a fatty like yours truly can go to without feeling bad.  There's all kinds of people in there who are just trying to get some physical activity into their daily routines and get in better shape.  It's nice.  It's not full of muscle bound lunkheads or look-at-me spandex wearing harpies.   It's just a bunch of normal peeps trying to raise their health level; the place has a real prominent no judgement policy, so it really makes it a nice environment.  I've been popping myself on a recumbent bike, running on treadmills and attempting to use an elliptical machine, but I'll tell you - after over four years of sitting in a dialysis chair, my leg muscles (hell, all my muscles) are out of shape.  But it feels good to not only get moving, but to be able to do it!  I don't feel like death warmed over when I'm done with our workout.  And Jordan is right there with me... it's actually kind of fun.  It's just nice to do something positive with my wife while these winter months keep us indoors.  Hopefully, but the time summer rolls around, we'll be in great shape to do all the outdoorsy stuff we enjoy.

So, along with working out, I'm attempting to re-enter the job world.  It's a scary prospect - I haven't worked a real job in years; I've been a chronic patient.  Trying to find something is hard - I also have to finish school sometime too.  I got sick and involved in this whole dialysis mess while I was in the middle of going to school.  So, yeah, getting a job and going back to school almost 10 years later makes me a bundle of nerves, I'm not going to lie.  Time is the worst; I know it's just going to take time, but I wish I had in all figured out right now.

So that's the start of my 2012.  I hope it all goes well, and even if that stupid brouhaha around the Mayan Calender turns out to be right (Highly Doubtful), I'm gonna bust my ass until then!  So, I wish you all a great 2012.  To all my friends out there still on "The Big D", I wish you the best.  I know how hard it is.  I know how soul crushing it can be, and I know it sucks.  I wish I could do more for you.... but I send you my heartiest well wishes.


~Steve

EDIT: Oh, and hey - if you read this and get a chance, GoogleAds throws me a few cents everytime you check out one of the ads/links over on the right side of the page.  If you ever feel inclines, click and take a look at one - every little bit helps!  Thanks!

And now, a thank you - for you, my readers!

Well, it's almost the end of a crazy year for me.  I just want to take a little time out to say "Thank You" to you - my readers.  I've gotten a few comments on some of my entries, and I've gotten some emails from some people, and I have to thank you - those make all the difference.  It's really nice to know that my writing has entertained, inspired and educated so many people from so many different places.  I enjoy writing, and I enjoy sharing it with other people - so thank you for taking the time to read what I have to say.

I'm looking forward to an interesting year as I get back on my feet again, and head out into the world as a new kidney recipient.  Not being on dialysis this Christmas is the best gift I've gotten in years.

So, again - thank you so much, all of you.


~Steve

A Christmas Story

I've always loved Christmas.  Especially when I was a kid.  I was having dinner with my parents and my wife recently, and my Dad remarked that I was "... Always great to be around on Christmas." because I was just such a bundle of excitement and joy.

I just love the season.  I love Christmas Lights on houses, I love singing Carols, I enjoy listening to Handel's "Messiah", I like it when there's a nice coating of snow over the ole' town.  I grew up in a small town just outside Syracuse - it bordered the countryside, which is a great place to take a drive through on Christmas.  I remember sitting in the backseat of my parents care, slight layer of frost giving a halo-like glow to the Christmas Lights on the houses we passed as we drove between my two Grandparents houses.  I was lucky enough to know both sets of my Grandparents while growing up.  There was always a lot of family, always a lot of love, and always a lot of FOOD!  My God, the food.  Endless bounties of snacks and beverages when you walked in the door.  Candy in dishes on every corner; as much Soda Pop as a kid could drink (without getting yelled at!) and just a mass of relatives that were so happy to see you.  Every year at this time, I still feel that joy and wonder in my mind.  That feeling of being three feet small, scampering around in a quickened gait that you didn't even notice.  Now, I lumber around at six feet tall, ambling slowly from room to room because I can already feel my knees get creaky!  But now, I'm the one who's excited to see the new children who are excited for the day.  The run around the house, playing games of fanciful imagination, and talking with a rhythm that's so quick and so foreign to me now - yet, I still appreciate the patter.  I hug my relatives, and I make merry - though I try not to over-indulge in the food and drinks, because if I do that now, I'm going to have to chug half a bottle of Pepto-Bismol later while I sit on my couch at home and whine!

I took these scenes for granted as a child; when you're young, you just take the world you are presented with for granted.  You don't have any other choice; you just know what you see.  I was so lucky to have a family that celebrated this way - and remembered to make merry with each other, and share the love that was so important at the Holiday.  As much as I loved the presents we got, and I was ALWAYS excited for that - I just loved being with these people.  Heh, on Christmas Day - after my brothers and I had opened presents, one of the first things I'd do was call my cousin to see what he got, and we'd share and get excited to hang out and see each others new stuff.

I love that I'm still here, at 33, to share my Christmas joy with these people.  We've lost a few blessed souls along the way, but picked up a few new ones.  Yet for all of the losses, the struggles the changes, the trials and tribulations, we still get together to make merry.

That's the greatest gift in my world.  I see all of these "Black Friday" sales events, and the ensuing madness as people push, yell, steal, swear and degrade themselves in all manners just to get some consumer goods, and I just get sad.  People fighting, gnashing teeth and screaming, to obtain flat-screen televisions?  Or the incident where people were beating each other to get a waffle maker.  A WAFFLE MAKER.

I know not everyone is as lucky as I am to have such amazing family at the holidays.  But filling the void with consumer goods?  I know everyone likes things - we all like to get presents on Christmas.  Some like to give as much as they get - but this madness of recent years... it hurts my heart.  I could blame retailers, for encouraging this, and I could blame people for not having the self-restraint not to participate.... the truth is, everyone is to blame here.  And it won't stop.  My only hope is that people just try to remember to keep a little tenderness in their hearts.  There's always going to be more stuff.  I can always get a flat-screen television, but I can't sit down and have a beer and chat with my Grandpa Alexander any more.  The truth is life doesn't last forever, and people will leave you.  I'd rather take the time to make the memories I'll cherish when they're gone, than to worry about what I will get them.

People have been asking me what I want for Christmas this year, and I can only sit back and say "I don't know."  I do not want for anything.  This year, I've already been given so much.  I was given a reminder of the gift of friendship, when hundreds of my friends stepped up, came out and supported me with the whole Steve-Stock thing.  I recieved hundreds of donations from friends and family not only local, but all across the United States and the World.  I had donations come in from Europe, South America, Asia and Australia.   It was amazing, humbling - and timely too.  Shortly thereafter, I recieved a gift from a family I do not know, nor have ever met.  This family donated an organ to me, from their deceased son.  And as I sit here, alive and well this Christmas - not having to sit in my dialysis chair on the day for the first time in over four years, they sit at Christmas with a chair of their own empty.  And my heart and my love goes out to them.  I know this Christmas will be incredibly hard for them - while I go on to celebrate with my own.  I toast them.

And I say, if you know me, take a moment to toast that family as well.  They are hurting this season, and I couldn't give them anything in this world to ease that pain.  But, perhaps, if we all send them good wishes, they can find some comfort together this Christmas Season.

Merry Christmas, to you and yours.  And a Happy New Year.

May 2012 be a great year for all, and not the harbinger of doom and gloom as so many callously claim.


~Steven

Heading for the Frosty Hills....

Winter is approaching here in Syracuse.  We're known for our snowy and icy winters.  When I was younger, it didn't bother me much, but now I just don't get along with the cold.  Well, I didn't on dialysis at all - I'll see how I do this year, but so far any encounters I have with the cold air still suck pretty hard.

Winter time is such a dormant time, a lot of time for reflection.  Truth is, I'm four months out from my transplant - which was amazing.  All the outpouring of support from friends and family was amazing - I'm still reeling from it.  But now, I'm a few months out - and things, on paper, are working great.  My labs are amazing, I feel good, physically (aside from a few lingering GI problems).... yet, still, there's a pretty gaping hole inside me now.

I guess, well, when you've been sick for so long, you kind of settle into a life of just trying to get by.  Now, I sort of feel like I don't quite know what to do with myself.  I've been fighting for so long, and now - the hard part of the fight has been lifted.  I'll always be fighting in some way, but the large burden is off my back.

My life, as I knew it, ended when I was 24.  I'm almost 34.  It's been 10 years of living like this, and - well - I kind of don't know where to go on the other side here.  Part of me feels like I've been in a coma for 10 years, and I've just woken up and I don't have the slightest ideas where to go or what to do.  I can't (and don't want to) go back to the life I was living before;  I'm too old for that shit, and frankly I wasn't headed down any great path there.  But where do I move forward to?  Sometimes the most frightening thing about being alive is having a great wide open path in front of you. 

Finding your way down it is the human experience, and of course, I know I will.  But, I guess, I do feel some apprehension, I do feel some depression, and I do feel a little lost and kind of useless.  I'm sure everyone feels like this, especially at crossroads in their lives.  I've got a lot to do now, and the worst part is just working through the months of slogging it out to get where you want.  Doing it in the winter, when I get seasonally depressed, is going to be hard.

I just wonder what life has in store for me.  Better yet, I wonder what I have in store for life.  I guess I still hold that dream that I want to do great things, but for now - I guess I'll settle for doing something - anything.


~Steve