The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Friday, December 17, 2021

Last Dances

 For years, on Christmas Eve, my mother's family would gather at my Grandparent's house - a big ole place on the edge of town, just down from a little stream.  When my Grandparents moved to smaller accommodations in the 90s, my Aunt & her husband bought the old house, moved their family in, but they kept the tradition of Christmas Eve alive there. I was lucky enough to spend many Christmas celebrations there - most of my life, well over 30 years worth.  I can still picture so many of them in my mind - always impeccably decorated, the food was... legendary.  Serving almost 100 people is no easy feat, but they always made it happen.  I saw all my cousins, we shared stories, sang songs. Had drinks, made merry. I usually played guitar at some point.  I really can't express the warmth my heart feels thinking about it all. A few years ago, festivities moved to my other Uncle & Aunt's place... after years, and so much effort - deservedly, my Aunt and her family got a break from hosting duties.  But, well... the pandemic hit.  And last year, we had no gather.  Again this year... we have no gathering.  I always knew those times would end - us "kids" have grown, we have families of our own... the size of the parties was nigh on untenable.  So, our traditions change... but I will always carry those moments in my heart.

Point is, though, I didn't know the last time at my grandparents house was the last time we'd have our celebration there. Sometimes you don't know when that last dance is. And, the human tendency is to never think of those things - which is why so many people are shocked when things end, I suppose.  But, for me, it's another reminder that sometimes you have to enjoy things like it might be the last dance. And you think back on it all, and you're just happy that you got to be in that number.

Wednesday, December 15, 2021

Contentment and Happiness

 The pursuit of happiness is probably the most human of all experiences.  It's pretty much universal for everyone, in an esoteric sense.  It's the details that vary from person to person - what makes one person happy is not what makes another happy.  Life is often spent trying to figure out what that intangible goal is.  But more than happiness, which can be fleeting - for me, the ultimate goal is contentment.

So many people are just not content with life - they pursue that which they think makes them happy.  Often when they obtain the very goal they've been striving for, for some reason, they are unsatisfied with it. I suppose many people are looking for some kind of epiphany - something greater than just existence seems to offer.  I don't know, these are the philosophic questions that have driven men mad since the dawn of time and much better words and treatises have been written by better people than I over the years.  But, for me, feeling content in my place in this world is the ultimate goal.  The ultimate inner peace.  I've felt contentment before.  Many people will just never be content, though.  There's always something else to pursue, something else to obtain. I know I will be content again, and in many aspects of my life - I am content.  Many things that make me content are quite simple, and I really enjoy knowing that.  Others are not quite as easy, but I'm making my way.  I'm wishing everyone a little more contentment this year, during the holidays.  Take that time out to love and appreciate whatever it is you have that provides some happiness and perhaps contentment.

Monday, December 13, 2021

Size is relative

 When I was a kid, our neighbors and friends down the road had, well, a really cool backyard.  An above-ground pool, all kinds of stuff on the edge of the woods, and there was a large tree where their older kids had built a tree fort.  To me, as a 5/6 year old, it seemed so massively tall and huge.  I was afraid to climb up into it - besides, it was like the older kid's clubhouse.  But eventually, I did climb the ladder up to it - as I recall (and this might not be how it was, after almost 40 years now, my memory has faded in places) but I remember the ladder just being 2x4's nailed into the tree.  It seemed like they went up 100feet and there were 100 of them.  There were probably 10... it was probably 7-8 feet off the ground.  But at the time... it seemed so large.

Sometimes the size of things really tricks us - our own minds really can twist things around and make things seem much larger than they are.  When you're a kid, it's the physical world. As I've aged, it's been the mental world that's gotten to big for me sometimes.  Sometimes I have problems that seem so large and insurmountable, that I don't face them.  I hide, or I put it to the side for a while.  But, eventually, I start to climb that ladder.  And after some time, perspective shows me that the massive size I imagined wasn't always the case.

I've cleared some large hurdles in my life - some that most people would never have to climb.  But I did them, and they don't seem so bad to me.  Sometimes it's the simple things that trip me up.  But in the end, I have to remind myself that I can do pretty much anything.  And, often, if I fail... I'm still where I was.  And I can try again.

Writing this little missive is a reminder to me of that - I can conquer most anything. I'm stronger and better than I know, and sometimes I have to throw fear off a bit and try harder than I did before.

Saturday, December 4, 2021

The wind is like a knife that chills you to the bone.

 It was a cold night here in Central New York.  I ventured out of my house for an event at the Museum of Science and Technology (MoST) where I was promoting the video games I make. Getting out of the house still seems weird in this era of the pandemic, and I actually had a lot of anxiety about it all day today.  It's not even about being sick; I've just found myself dealing with more social anxiety than I ever have in my life.  I used to be quite a social person, but I've become more introspective as I've aged and I've found I really don't need, want or require the stimulus of being out in public like I once did when I was younger.  I'm okay with this; my time as a social butterfly was fun, but not something that really brings me a ton of joy.  However, it was nice to force myself up and out - stepping outside of your routines and your comfort zone is good for one's self, and I did enjoy being out.  I often feel trapped in my own head at things like this - but it was nice to show off the work that me and my friends have made. I do often spend the quieter moments where I'm not engaging with other people, reflecting back on my life - who Steve was at 25 vs. 30, vs. now is an interesting experience.  I'd like to think I have a little bit more "chill" than I once did; I was kind of hyper and spastic when I was younger.  It's how I coped with existence.  But I enjoy seeing how I've changed and grown, and it's a real introspective moment in the middle of the madness that kind of centers me.

But as I packed up my stuff into a suitcase, and rolled it outside, I strolled upon the sidewalk for a bit, in Downtown Syracuse in December on a very cold, slightly windy and snowless night.  Armory Square bustled with life, even in these frozen times.  The lights of the city stood aglow all around me and the wind whipped through my coat, chilling me to the bone.  I get cold very easily these days, due to my anemia, and I recall the crazy, foolish young man I was once who had no problem with the cold. I was that asshole who would be wearing shorts in December, with a coat on above them.  No more - I felt older, and colder, as I walked that side walk - but I appreciated that I had the age and wisdom behind me to appreciate the cold beauty of the evening, and to just be glad I was alive and out and about in this world. I've almost lost it all more times than I can count, and any day I get to be able to walk along the street of my own accord and feel the wind on my skin is a win.  In life, even the mundane moments are a blessing, and I took note of it as I reached my car, put my belongings inside, and prepared to drive myself home after a night out.  My life is far from perfect, but it's my life and I'm still living it - which really is a miracle.  Sometimes good fortune and miracles is being chilled to the bone and being conscious enough to realize it's happening to you.  I drove home in the cold and the dark, lights of the city fading behind me as I drove the freeway home.  Driving down a road I've traversed literal thousands of times, and thankful that I have gotten more chances to do so.  Tomorrow I'm going to get more in the season, set up my Christmas Tree, decorate my house and spend time with my children, and - god - I look forward to it so much.

Saturday, November 27, 2021

Thankful 2021

 Yesterday, I was fortunate enough to spend another Thanksgiving Day with my family. Just a little over 18 years ago now, my father donated a kidney to me, and I have been lucky enough to have been around for every Thanksgiving gathering since, with my family and with many others who have taken me into their hearts and homes. 

It's hard to put all the emotions I feel about being thankful into words - I surely exist right now solely because of the generosity and good grace of others. I have a family who has loved and supported me, unconditionally, though many ups and downs for so many years. So to say I'm thankful really undersells it. I am grateful that I've been able to live and allowed to pursue what has been a pretty amazing and crazy life so far. There have been triumphs and defeats, but the love and support has always been there. So many do not get this luxury, and I truly am one of the fortunate ones. 

Hoping that all of us can find a little more grace, a little more charity for one another, and a little more love in our hearts as the years go on. I remain thankful for everything I have been gifted.

Monday, November 15, 2021

Almost Famous


Last night, I watched an old favorite movie of mine, "Almost Famous" by Cameron Crowe. It's celebrating its 21st anniversary this year, and I had to take a moment to think back and realize it has been over two decades since I sat in a movie theater with my brother Dave, and we watched this film for the first time.  I fell in love with it instantly; I had a real love for the music of the era, and at the time - playing music was my life. I played in a band with some friends, and we were gigging quite a bit. Writing songs, composing original works - being young, and letting music be our lives. I had the typical dreams of a young man then, of course, I wanted to play music full time - I didn't care about stardom, but I did want to play for people. More and more people, as many as we could. Music was life, and life was music. I was pretty carefree, naive and... well, living a dream. I was lucky enough to do it, and have the support of my family & friends. Life had other plans for me, as many well know, and a few short years later I found myself wheeled into an ER and told I had End Stage Renal Disease - an incurable condition which required dialysis for me to survive. Treatment for the rest of my life. Possibly a kidney transplant, but as I discovered, a transplant is not a cure - just another, better form of therapy. 
My life changed in an instant that New Years Eve, 2002. But I still had "Almost Famous". I remember working in a video store when it came out on video - and the owner got the "screener" VHS of the movie months before it was released to the public. He knew how much I loved the film, and he gave me that copy. I watched that tape so many times - I watched it with friends on so many glorious nights of our youth - well into the wee-hours of the morning, we'd watch the story and the music unfold. The movie still reminds me of those days.
Of course, in my heart, I wanted to be like Russel Hammond - the handsome, talented lead guitarist and songwriter of the band in the film, Stillwater.  But I knew in my heart that my awkward, nerdy and goofy ass was always more William Miller - the nebbish writer and protagonist of the movie. (And as I got older, I definitely identified more with the great Phillip Seymour Hoffman's portrayal of legendary rock journalist, Lester Bangs.) And as I got sick, and the music took a back seat - my life still went on. And as I aged, I was definitely more comfortable and happy being the William Miller type.  So many of us have dreams and ideals for ourself that aren't really what or who we are... but we find ourselves in so many different ways. I found myself living a life of extraordinary circumstances and adventure over the next twenty years. I found myself during a time where I initially pined that my life was over. And in spite of all the obstacles and hardships I have endured, I have lived a life of miracles and magic. I met so many amazing people, and went to so many amazing places - places I never thought I'd go. I did things I never thought I'd do. I gained the love and friendship of literally hundreds of amazing people - some who I still see and talk to, and others who have drifted out of my view. But it's been amazing. And as my dreams shifted, changed and intensified, I lived out so many amazing things that some other people might only dream of. I've been a lucky person. And the film remains in my life.  I was a 22 year old kid with stars in his eyes the first time I saw it, and watching it as a 43 year old man now... it's amazing what I feel. What I remember. Who I remember. I have that moment where I chuckle when I think back on that 22 year old Steven, sitting in that theater in awe of the story that unfolded on that screen and the dreams that bounced around his head. He'd never believe what this guy here today has done and seen. Dreams are what give us life, they give us hope. Sometimes they change, and we change with them. Sometimes our dreams let us down, and sometimes that can blind us to the miracles were already going through. I know I missed a few things along the way, and I look back in hindsight now and I chide myself for not realizing it more along the journey. But I'm still here today, I'm still alive. Living a different dream, but my dream has had moments of brilliance and happiness I could not have imagined possible then. And still, there's the film. Doris, the bus, rolling down the highway, its occupants inside, dreamers all (fictional parts of the mind of Cameron Crowe) singing Elton John's Tiny Dancer in unison, and enjoying the moment together.  Sometimes I feel like I've been riding that bus with many of you, singing Tiny Dancer together, and I have to recognize that I am one of the luckiest people in the world. Art is something that's subjective, but when something touches you, puts a piece of itself inside your soul and spurs you on in moments when you can't continue, it means something.  Sometimes a silly little film can sit on the edges of your heart, and it can lead you on to your own bliss. I guess I'm just feeling fortunate enough to have been touched by this movie and how much it reminds me of so many friendships over the years. It's the people in my life who have given me purpose and shaped my destiny - my fellow riders on this bus, and those who've welcomed me into their journey, I can say I am so happy you've been in mine. Always remember to cherish these things you love, even if they seem silly, because their roots can often go deeper than just the artifact itself.

Wednesday, November 3, 2021

The Lamp

 I used to have a lamp in my family room.  I still have one now, of course, but it's a different one.  I had this other lamp for years - it was a really nice looking one.  But the way it was placed and the way the light switch was placed on it made it awkward for me to turn on and off, especially while standing.  Every time I used it, I muttered "Fucking lamp..." like a grumpy old curmudgeon. I wasn't really annoyed; most of the time, I like to put on the air of a grumpy curmudgeon for humorous effect; I'm really not that grumpy or bothered, but it used to seem like it made people laugh.  Just a quirk of my personality - and, I am nothing if not a performer who loves to entertain people. But in reality, I loved that lamp.  I loved it a lot - the fact that it was difficult to turn on and off endeared it to me.  It was another small piece of my life - a part of the puzzle.  But every time, I muttered "Fucking lamp...." that was my stupid way of saying how much I liked it.  I know, it's just a lamp.  It's silly.  But one day, it broke - and now it's gone.  And I don't walk across the room at night to turn it off before I go to bed and mutter "Fucking lamp..." and I really, really miss that.  Sometimes those stupid little things that seem to annoy you are the little things that make your life worth living, and you don't miss them til they are gone.

Sunday, October 31, 2021

Life as a collection of moments

 Trying to take stock of a life is a weird thing; you live every day, in and out, and then later on you reflect on that and what it has meant to lead you to the moment you find yourself in.  When I was younger, life seemed so much more vast, so much more infinite. In my twenties, I felt like so much time had already passed and I'd experienced so much, but I knew that there was so much more ahead.  It was an interesting place to look at life, and see what kind of plans you could make for the future. For me, I suppose the whole thing changed when I went from a care-free young person one day to a person with a deadly and chronic disease the next day.  (Of course, in reality, it didn't happen overnight - I'd been sick for ages but unaware. But in my young mind, it seemed almost instantaneous.)

So, I'm a contemplative type - I often think of where I have been, and how it has shaped my today.  Everything I love and enjoy is a result of my past experiences, so I often look to them when I am wondering where to go.  When I was young, I used to believe there was some kind of destination one was headed to; as I get older, I acknowledge what I'd always known but refused to believe in my foolish youth - there is no destination. There is no one right answer, there is no plateau to be reached.  Life changes, goals change, and you're there no matter what.  You either adapt or you languish.

But I still cherish life - and I realize it's been the moments that have made mine so special.  It was the right song on the radio, playing loud as I drove alone in a car at dawn, watching the sunrise crest over the horizon.  It was the quiet of the night as I sat in the woods, around a campfire with friends, yet feeling drawn away to a moment with myself.  It was the song I played in front of a crowd, feeling their love and energy for the music and their gentle encouragement of me as the musician.  It was someone holding my hand during a funeral. It was the sound of laughter echoing through my grandparents house on Christmas. It was holding my new born son, and staring in wonder at the new life I was suddenly tasked with.  It was the right song at the right moment.  It was the friend who wouldn't move. It was the rain falling softly and the right crackle of thunder. It's been so many moments. 

Life isn't great all the time. But remembering the good moments makes it bearable - and it provides the hope that there may be more yet before my time is done.

Wednesday, October 27, 2021


 I know people love the idea of merit, talent and skill winning people a positive place in life. I mean, we write stories praising such things, there are films where the central thesis is just that and there are songs meant to pump people up to this aspiration.

 But the way the world really works, like anything, is vastly different. People will often be judged and given place or position on something as mediocre and simple as looks.  "Pretty privilege" most certainly exists. And I think people that have been on both sides of that equation can both vouch for it, and say how heinous it is - but if they're on the positive side of pretty privilege now... they're going to ride that wave and say "fuck all y'all" to those in the position they were previously in.

Because as much as we like to extol the virtue of ones actions, heart and accomplishments - what is the one other hugest fiction trope we all LOVE to see in our entertainment? The glow up. People LOVE the makeovers.

We're an odd, interesting species. We extol certain things but absolutely work on another set of values. And this is never going to change.  So sometimes you have to carve out your own way with brute force if you just can't get better looking enough.  In the end, you gotta live with yourself, so do what you have to to feel happy. 

Tuesday, October 12, 2021

The World Is Changed

 It's hard to know what's just my perception and what is objective truth for all - but I definitely feel like the world is a much different place than it was just 5 years ago.  It just feels like the whole emotional and behavioral zeitgeist of the planet has shifted, and not for the better.

It's been a difficult time, especially in the last year and a half - almost two years.  But I feel more and more like people exist on the edge of a knife, and it takes a lot less of a spark to push people to act and behave more outrageously than they ever would normally.  I've seen people I would normally consider to be level headed with an even temperament just burst into rage and insanity... over essentially nothing.

People are primed to fight. And it's not good at all.  There also seems to be the opposite movement - where people are saying "Be Kind" but it really feels more like slacktivism... people espouse this philosophy but don't practice it.  They just say it, as if they will alleviate the greater symptoms.  And the apathy, in turn, worsens the overall mood even more.

It's a terrible cycle now, and I have no answers, for sure. But I do know that real change starts small - it starts personally and moves out. And often, there's no immediate reward.  We're a people of instant gratification - and this impatience doesn't breed anything good.  We need a little more action for the better and less chatter about it. Myself included. I do hope we can right the ship towards a better equilibrium.  There just needs to be more balance in the world, for people at large.  I hope it's coming for us all.

Monday, October 11, 2021

The Adventures I Didn't Have

 I think most people can relate to the sentiment in the title of this piece.

The Adventures I Didn't Have.

I mean, most people look back on the things "they didn't do".  It's only natural.  Would have, should have, could have's are integral to the human experience.  I try not to dwell on them too much - I had a lot of potential roads not taken, but I always remind myself I wouldn't be where I am today without the paths I took.

This assessment used to be easier to appreciate and like, because at one time I was very happy and content with where my life was. It's harder for me now, because in 100% honesty, I do not like where my life is now.  Currently - I do not enjoy being alive.  I just don't.  It's a difficult time for me, and it has slowly gotten worse over a five year period.  I had to watch every potential nightmare I ever had come true in real time as I stood by, helpless to do anything, and I had to watch it happen to me.  The things that have happened to me in the last five years - this is the kind of stuff that people wake up in a cold sweat from dreaming/thinking about.  I have endured and survived so many possible nightmares.  But, it has left me in a spot, bereft of much happiness and joy. I am not happy with myself, nor my situation.  I exist, I suppose, but it's a life full of pain, disappointment, exhaustion and dehumanization.  

I am lucky, because I do have a spot of true joy and happiness in my life - my children.  I love them so much.  They have given me purpose in life when everything else seems to abandon me.  And I know it's because of their love for me and my love for them that I will get by.  I can learn to live with the pain and the sickness, just because I'm their Dad. This wasn't how I had hoped my life would go, but I have to look at it as The Adventure I Didn't Pick.  And sometimes the adventures you didn't choose but find yourself on are the most rewarding.  So, yeah, at times, I may see reminders of places and things I didn't do - or things I planned on doing in that proverbial future that I no longer have the chance to - I am hoping that with enough time and love, I can heal somewhat.  I often feel bad, because it's a slow process.  I'm trying to live a life while I'm trying to heal my body and mind, and neither one will ever truly be healed. 

But, if I can say one thing - If you ever put off even that simple little thing, like a trip to somewhere just a half hour from home - don't.  Just do it. The risk always lives.  And all we have in life are moments - wonderful, beautiful little moments.  Sometimes alone, sometimes together.  But if you can, indulge yourself and find that moment.

Saturday, October 2, 2021


 One night when I was five years old, my father came home from work with a strange bundle in his arms.  He had a smile the size of the Mississippi River on his face and his eyes were alight. He called out, "Hey! Look what I have!" My brothers and I peered into the bundle, and staring back at us was the cutest, littlest runty puppy I have ever seen.  As little kids are wont to do in excitement, we squealed with delight, and the little puppy opened it's eyes, yawned and it's little pink tongue came rolling out.  This was our introduction to Taffy.

Taffy was a mutt... my father had bought her off the back of a truck from some teenage girls who needed gas money.  Their dog just had puppies, so they were selling these mixed breed pups cheap.  The dog became a great source of joy for our family, and was part of the living heart that drove us for many years.  She fiercely loved our family - and was notoriously good about staying in our yard, even though it lacked a fence.  When we moved to our new house, she was about two years old but she seemingly instinctively knew the borders of our yard.  She refused to leave it, even if we called her when we were across the street at the neighbors.  She knew that where she was was her yard, and she went no further.  That is until the day we lined up at the end of our street to wait for the school bus.  My mother looked back - there was Taffy, at the edge of our yard, laying down on her paws, longingly watching us.  My mother went back to fussing with us while we waited for the bus, but when she looked back, she saw Taffy edging slowly forward on her paws and knees towards us.  Mom shot a glaring look back, and caught, Taffy walked back to the edge of the yard, and dejectedly sat down again. And the cycle repeated.  It went on this way every morning til we reached Jr. High and walked to school every day.

She went everywhere with us - on camping trips in our pop up camper, to visits with my Dad's folks at their camp on DeRuyter Lake. At the lake, Taffy - part collie and part shepard, would always find some nasty dead fish to roll in.  She'd run up to us, excited, to say "LOOK AT THIS SMELL I FOUND" which we, of course, found repulsive and she'd look at my parents, ears folded back in sadness and shame as they sprayed her with a hose and used shampoo to try and wash it out... but we loved that dog. I had a lot of moments in my childhood, where I was sad or dejected - Taffy knew, and would seek me out, nuzzle her way under my arm, and try to soothe me (and make me pet her. It was symbiotic!)  But I loved that dog in my life growing up.  She was always the love and friend I needed, and always there in times of need.

In my 16th year, that Summer, I noticed her acting different.  Tired. Lethargic.  Not herself.  The day she stopped barking at the doorbell when it rang - I knew something was up.  I took out my video camera, and shot footage of her.  Something inside told me too, and I spoke gently to her and pet her as I shot footage.  She refused food and water.  My soul knew before my brain, and my father and mother wrapped her in a blanket for the evening.  She stayed in the kitchen.  My older brother came home to pet her, and talk to her.  My younger brother held her, pet her and told her how much he loved her.  We knew we were telling her goodbye.  I went to bed that night, and a few hours later, Taffy walked into my room with a vibrance she didn't have earlier.  I woke up from my sleep to see, her, and she came to my bed side and put her snout in my hand.  I said, "Oh, girl, you're feeling better!" hopefully.  But I pet her head gently, and she licked my hand for what seemed like forever.  I looked her in the eyes and told her I loved her.  She turned from me, and I saw her try to scratch open the door to my brother's room. I fell back asleep.

When I woke in the morning, she was gone.  Her body was on the blanket in the kitchen.  My father and mother had tears in their eyes.  I gave her body one last pet, and told her she was a good girl.  My father buried her later that day.

That was 27 years ago. And I still mourn her. The whole family does. We still talk about her - a true member of our family in our formative years.  The dog taught me so much about love, loyalty and selflessness.  And a little about mischief. But here I am, years later, just remembering the love that creature had for me.  The love she had for her family.

Sometimes beautiful things come into your life for a short time.  It seems like forever when you're in them, but you look back and realize it was a small slice of your life.  But the marks they leave in your life, and the impact they make on your soul live on forever.  Not a day goes by that I don't think of that dog and not a day goes by that I don't miss her.  We were so lucky to have her.  Sometimes we're so lucky to have wonderful things, and we only realize the true lasting impacts until much later when they're gone.  But you remember that you are just lucky enough to have experienced it.

He spoke with tears of fifteen years how his dog and him
Traveled about
The dog up and died
He up and died
After twenty years he still grieves

- Mr. Bojangles, The Nitty Gritty Dirt Band


Thursday, September 30, 2021

Where the Wild Things Are

 Many years back, filmmaker Spike Jonze made an adaptation of Maurice Sendak's "Where the Wild Things Are".  "Wild Things" is, of course, a beloved children's book, with amazing illustrations that tell the story of Max, a little boy dressed in a wolf costume who is sent to bed without dinner for acting "wild" and misbehaving.  We were given several copies of this book by lovely friends and family who were celebrating the birth of our children years ago - and I have read it to them before bed countless times since.  I read the book many times as a child - it was a bridge and a door, connecting the world of my childhood to the world of my children's childhood.  It was beautiful to experience. I digress, though.

I watched the film version again recently - the first time I saw it was in the movie theaters, along with someone who I cared about very much.  We were both on that precipice between youth and adulthood - people often think that happens so much earlier in life, but the weird truth is that it's different for everyone.  For me, though, it was later in life than some.  I had been through a lot in my young adulthood - some traditional things too a back seat as I tried to navigate my own survival with life as an ESRD patient.  But with this film... I went in expecting to see a pretty harmless adaptation of a children's book, and what I got was an amazingly beautiful and esoteric vision that took me, the viewer, on a trip through childhood frivolity, the power of dreams, the realities of growing up, friendship, love and loss.  The movie is much deeper than many probably expected. As I recall, it did not fare well at the box office.

But I enjoyed watching it years later - I remember after the film, musing on many aspects of my life at the time but I knew I was ready to take up the mantle of many "grown up" things I had put aside. I wasn't just ready; I embraced them.  I welcomed them, and I began to feel a purpose in my life that I had never had before.  I spent the ensuing years trying to fulfill them the best I could, and do the best I could for the people in my life.  But it was then that I was committed to putting away certain aspects of life and push forward with better goals.  I am still chasing those, though the method of their mechanism is very different than I envisioned in October of 2009 - I am still pursuing them.  These aims and goals make me feel fulfilled as a human being, and though I don't always succeed every day at them, I still do them and I feel good, even when I fail.

Sunday, September 26, 2021

Highway Song (4 of 12)

     Ryan sat on the bench in the park, playing his guitar to the river the better part of an hour.  Of course, after some random noodling on chords, a flood of old favorites came to his mind and he followed that musing down the paths it took him.  He found himself playing some old Kingston Trio songs - music he’d heard from well loved and well-worn cassettes in his parents collection growing up.  His parents had loved music, and had a nice collection of cassette tapes they’d bought over the years.  There were some old vinyl records at his house growing up, but that format had been mostly abandoned by the time he’d grown up enough to pay attention to music.  They still lived in an old drawer, and he’d occasionally pour over the large album covers - admiring the art that accompanied massive albums of music the spoke the stories and songs of a generation born of “The Greatest Generation”. Of course, he’d muse on the things his parents generation did, and what they didn’t… and what they ultimately did.  It was a vast, long, wormhole that was still affecting people who were living today - including the aging boomers, many of whom were rapidly approaching the ages when they found them relegated to the corners of life - small rooms in the homes of family they once held as babes and raised, or worse yet, tucked away in some cold, uncaring medical facility, waiting die, being attended to by minimum wage workers who were doing the bare minimum to get by and not get yelled at by people making slightly more money than them.  People who held this small authority over their head like a large baton, while they themselves were bullied by people above them making just slightly more, and wielding more imaginary power than they really had. In truth, they were just lorded over by the people who owned facilities like this - greedy, rich, money grabbers who barely worked themselves, and encouraged their low paid workers to cut even more corners to the bone in order to line their own pockets.  They did all this while convincing these low paid workers that they were “blessed and lucky” to even have a job.  All while caring for the children of “The Greatest Generation”... and knowing that many of that same great generation already experienced this end in life, and had died undignified deaths in sterile, cold, nursing homes, bereft of the love and family they once had.

    This tangent of thought made Ry shudder, and he stopped playing the guitar for a moment.  The sun soared over the sky during the afternoon, and was steadily making its celestial jog towards the western horizon.  Ry wanted to walk around town a bit more, and explore some things before nightfall.  He figured he’d come back here to try and find an inconspicuous place to bed-down for the night.  He liked this place - the whole town had a slow and comfortable vibe.

    If I could he thought I’d live in a place like this forever.

Tuesday, September 21, 2021


 I have to get frank on here - my labs have not been good.  I had a biopsy back in Janurary that showed that my most recent transplant had damage - and they determined that it was from the donor, and not from me or anything I or my body's systems had done. The kidney just wasn't as viable as they originally thought.   I've since had another biopsy that showed the same results as the previous one - and my labs have been in slow decline ever since.

I currently have about 22% function.  I don't feel great most of the time - but this is really nothing new for me.  I've learned to live and function feeling that way - if the average person felt how I feel every day, they would not be able to function well at all. In fact, they'd probably think that they were very, very sick.  But it's normal for me, and I do the best I can with it.

Right now, my function will keep me off dialysis - which is amazing.  But I am bracing myself for the fact that there will be an inevitable return to dialysis for me, probably sooner than I would like. Or worse.  I also don't know just how long I might last on dialysis again.  I was in rough shape last time.  I just don't know if I can survive much more of this.  I have fought very hard for a long time.  Almost 19 years now of living with End Stage Renal Disease.  I can't afford to do the normal human thing and pretend death isn't a reality for me.  It breaks every inch of my heart to think I might have to leave this life sooner than I'd like.  At one point in my life, I was more sad for myself - I thought of everything I'd never get to do. Now, it's funny - I am sated with the things life has to offer me.  I have not lived some amazing life of crazy success and glory - but I have lived a good life. I have gotten to live a life of love, passion and creativity.  I have pursued interests that have made me happy and fulfilled - I have had things I've written published internationally.  I have created, composed and recorded music that was a true expression of my heart and expressed through my love of musical composition. I have created video games that have been sold internationally, and there are fans of my work all over the globe.  I've befriended a veritable army of people all over this planet - and they're all just such amazing people.  I mean, when I think about the friends I have amassed over the years, I get a little choked up.  A lot of amazing and good-hearted people thought this stupid kid from Upstate New York was worth befriending. I knew the love of an amazing person, with whom I shared many amazing adventures, laughter, tears and a journey through life together. I have two absolutely wonderful children, whose glory shines so bright, and who have captured my heart and imagination like nothing else in this whole experience of life has.  I have lived a good life.  It's all more than I ever could have hoped for. I couldn't have predicted this life for me when I was young, and every day since Jan 1st 2003 has been an absolute gift.  Even the hard times - the heartache, the sadness, the depression, the setbacks, the failures... it's all part of the experience.  And it's all mine. For better or for worse, it's all mine. 

Right now, as I've said, I just want to hold on as long as I can. My children just started school.  I want to be around for them as long as I can.  I don't want to be a little spot, a dot in their memory.  I want them to look back, and think lovingly and fondly of their father.  I want the thought of me to be one that inspires love, comfort, support and inspiration.  I don't want to be something they recall as a long distant part of their past.  I am so upset that I will have to give them this legacy in life - being a chronically ill father makes me so upset in that I have saddled them with something even before they were born. They love me so much; I am so lucky.  I try not to scare them too bad, but I also try to be as open and honest about my life and condition as I can.  I don't want them to grow up, look back and get mad that I lied to them about things, or how I was.  But I also want to protect them and not scare them.  It's a serious balancing act that I am still trying to manage, refine and enact.  I hope I am doing well there.

So, right now, again, I feel like I am coasting through life.  Drifting on this strange breeze caught between life and death, just trying to stay aloft - all while still trying to live life the best I can, experience the most I can, and enjoy things the most I can.  The last five years of my life have been the hardest in particular - I have survived things I was sure would kill me. But I am still here, and I am still going. Perhaps I still have strength I do not even know about.  All I know is I am going to try my best to keep living a life of quality.  Thanks for taking the journey with me, in some way.

Tuesday, September 14, 2021

Highway Song (3 of 12)

 Ry strode up the street, and peered into the large picture window in front of the pharmacy. It was a real "old-school" place, with the name of the pharmacy painted in carefully painted script. The old venerable neon sign hung out front, above the door, it's ancient neon still shinning and proclaiming "Judge Drugs". Ry pushed the door open, and heard an old fashioned shoppers bell ring as he stepped inside. The place smelled amazing - Ry always loved finding these old, family run places and they always smelled like an odd kind of comfort.  The shelves were a mix of new products and old - he thought half the novelty toys they had in the aisle were still from the 1970s, while he did spy a few semi-new Star Wars toys.

Ry was out to pick up some bottled water, and a bottle of flavoring in a little squeeze bottle. Mio, or some brand like that.  There were some of these concentrates that had a nice collection of vitamins & minerals infused in it. He could add it to any water, and it was some nice flavor and a pop of something mildly nutritious.  He also picked up some peanut butter crackers.  Decent road fuel for a couple bucks.  He nabbed a small package of Acetaminophen and brought it all up to the counter to pay.  He mused on buying the ancient rubber ball he saw on the counter, but today wasn't a day to indulge whimsy.

The cashier smiled at him as he approached, which he was actually glad for.  Far too often in his transient life, he was greeted by derision and suspicious stares, as people are wont to do. But this young woman smiled genuinely at him as she put down the comic she was reading.

How are you doing today? she asked

Not bad at all he said cheerfully.  Thanks for asking.

My pleasure... just this? she asked, pointing to his items

Yes ma'am.  he said

Ma'am. Don't make me feel all fancy... or old. I'm sitting here reading comics, you know. she said with a smile.

I see that he said, anything good?

Oh yeah, for sure. I've been reading the mags we get in store since I was a kid. Dad runs this place now, but Grandpa ran it before him.  I've probably been reading comics here since before I could walk!

Musta been a neat place to grow up in.

It wasn't bad. It's not a huge town here, so a lot of the excitement in town centers on this place.  This place... and the Village Inn, of course.

Of course! he laughed.

She smiled back at him.  It was nice to get some normal human interaction.

Well, that'll be $7.50 total, today! she chimed.

He fished a ten dollar bill out of his billfold, and handed it to her casually.  She smiled, and placed it in the register as she counted change.  She handed him back a couple coins and a couple bills.

Well, we appreciate your business! Enjoy your time in our town!

Thank you. It's been very nice so far.

He nodded his head, and made his way out the front of the store.  He already missed the smell of the place as he walked down the street, and made his way down to the little park area next to the river.  The bridge that spanned the river carried the State Route into town - the little park down by the river had some small, but nicely kept flower gardens, a couple of benches, and a walking path that went under the bridge.  He spied a nice spot under the bridge he could camp out at. Probably a popular spot, he'd have to be careful.  But he sat on the bench, and took out his guitar to play for a minute.  The sound of the river flowing by was strong - a real pulse heartbeat of a flow, and he played some chords to it.  He started with some major chords, feeling bright, but as the current pulled him along, he was also finding a minor theme in it.  He loved to find himself in moments like this, inspired by his environment, and letting the music just go along. 

Monday, September 6, 2021

Highway Song (2 of 12)

     They rode in silence together down the old state route.  The driver had pulled over his old 1979 Ford F-150 and picked up the hitchhiker as he stood on a wet patch of gravel by the road.  The hitcher had thrown his guitar case in the bed of the truck, and noted how delightfully avocado green one of the truck's dual colors were.  It was a hallmark of that era - this car was in great condition.  Someone had taken care of it - or maybe never ever drove it thought the hitchhiker.  The cab was cool, and smelled faintly of old Marlboros.  The driver was a heavier set man, probably in his mid fifties, blue plaid flannel shirt over an old t-shirt.  He wore an old Mack Truck baseball cap, and nodded politely to the hitchhiker.

Where you going? he asked the hitcher.

Just down the road, to the next town.

No problem, that's only about 15 minutes down this way.

Thank you, sir.

The banality of the exchange brought both the hitcher and the driver a sense of relief.  The driver took a chance on this guy - and the hitcher took a chance on the driver.  But all that passed between them in the ensuing minutes was a few songs on the radio.  It was an old classic rock station, and during the time they shared, Bob Seger asked to be Rolled Away and John Sebastian sang about the summer in the city. They were just getting into Love Her Madly by the Doors when the truck pulled into town.

The old state route was the main street of this old town - it sprang up in the North County, like so many other little places, as a home for the workers that came to mine iron ore or to cut down the vast supplies of lumber that would help build structures all over the state.  But, as industries do, they dry up and move on, leaving people where they are and cities and towns to deteriorate and shrink.  Calbot was no exception; main street had a few nice old buildings, but the stores that were once in them sat unused.  There was still the old Village Inn, and a Pharmacy on the strip.  An old bakery still cranked out doughnuts everyday, or at least it claimed to on the sign.  There was an old IGA supermarket down the way a bit.  A few people walking the streets. An old abandoned gas station up at the corner.  Your typical North Country town.  Nice.  Quiet.  Near the river - source of life and commerce.  The Hitcher nodded at the driver as he alighted from the vehicle and grabbed his guitar case.

Thank you very much, sir.  said the hitcher.

John said the driver. My name's John, I'm sorry, I never introduced myself! We just got on well in the silence and I just kept it that way!

No worries said the hitcher, I enjoyed it too.

You got a name?

The hitcher thought for a moment.  It had been a while since he used his name. People really never asked him.  It was kind of odd, he thought, how rarely some people will ask a transient their name.

Yeah he replied with a wry smile It's Ryan. Everyone just calls me 'Ry' though.

Safe travels to you, Ry. You take care now.

The door to the truck closed, and John drove off down the old State Route, off toward the old horizon and out of Ry's life.

Sunday, September 5, 2021

Highway Song (1 of 12)

 The hitchhiker stood on a wet patch of gravel next to the side of the road.  The morning clouds had given up a little rain earlier; he was glad to have spent that little shower underneath the old car park he'd slept in the night before. The roof was standing and sturdy on the old car port, but the house it once belonged to was not in such good shape.  The home, long since abandoned, had caved in on itself long ago, he estimated.  The weeds and growth around the old property suggested so - but the car port looked warm, dry and relatively safe - the old house was set back from the old highway a ways, and with no one to maintain the property, the old shrubbery out front obscured most of the places existence. He'd looked through the house briefly - noting the old newspapers and magazines from the late 70s to the mid 80s.  The house had been deserted for probably over 35 years.  It was a shame no one seemed to want this old property, he thought.  It was kind of out of the way.  It was the lone house for miles in a long stretch of old highway, built long ago before America's super highways had made these old state routes less traveled.  Not that the road was abandoned, far from it - but it was less traveled than it once was.  In fact, the whole roadway was littered with old abandoned hotels and motels, that were probably once full of travelers and vacationers in mid-century America. Most of those places, though the business was given up, still had visitors... more transients.  Much like himself, but yet not like me he thought.  Sadly, many were junkies - chasing the dragon with old dirty needles, or succumbing to the latest drug plaguing the lower classes - methamphetamine.  The hitchhiker steered clear of that stuff.  He traveled light - a small backpack with a blanket, some old clothes inside, whatever snacks or food he managed to get, and his old guitar. It was a beat up Takamine someone in Toledo had traded to him for a pocket knife.  He was glad to have an instrument again - it made a nice traveling partner.  It also seemed to endear him more to people who might stop to give him a lift - even if he didn't play, something about it made others more at ease.  He hoped it did.  He didn't want to hurt anyone. He just wanted to keep going.  Where? Somewhere

The patch of gravel next to the road was about 2 miles down from the car port he'd slept it; he started walking down the road and waited to see where he'd get. He knew there was a little town about 20 miles up ahead.  He'd stop in there, and see what he could find.  A pharmacy, maybe. Hopefully a little restaurant - he'd managed to save a little money from the last job he grabbed at the previous town he shuffled into.  He helped a local road crew pave some roads for a few days, and at the end, he gave back the orange jacket they'd handed him, and handed him a wad of cash. A nod, a hand shake, and he went back on the road.

He didn't often think of where he'd come from - he thought often of where he'd been... but that old home he was once from? He hadn't been there in years.  Didn't have a reason to - everyone was gone.  When you're orphaned into the world, and your siblings won't claim to know you - you've got to find your own path. Which is just what he did. So he here was on the road - in a state he was not from, but rapidly learning to love as his own.  He felt a kinship with this place as of late - and something made him think that this would be his home.  Somewhere around her.  But for now, he heard a car coming down the old highway, and he stuck his thumb out gently as those who ply in his trade do.  The sound of wheels slowing down reached his ear, and soon, an automobile had stopped next to his gravel patch.

Friday, September 3, 2021

On writing

 I've been maintaining a blog of some sort for almost 20 years now.  This current one I've had for a long time.  I've always enjoyed writing - putting my thoughts out on a page, and trying to organize them into something that is mildly readable and somewhat enjoyable - all while pertaining to something. A subject which I might have some insight on.  When I was younger, I had the hubris of thinking anything I thought mattered - the older I get, the more it becomes clear to me that I don't know shit about shit, and that I am pretty much qualified to write about nothing! But I do it anyway - this blog has mainly been about me living with End Stage Renal Disease - how dialysis, transplants and the disease dovetail with the human experience.  At the core of it all, I am just an exceedingly typical and average person trying to live a painfully normal and average life.  It does not always work out that way, but that's honestly what I strive for. So that's what I write about.

I often see the amount of projects other writers participate in, and their prodigious output of writing - be it essays, non-fiction, fiction... anything, and I often wonder how people have that much to say.  I just feel like I do not have much to say any more.  Anything that's really worth anything.  I've had a lot of my passion and confidence sucked out of my soul over the past few years, and I am oddly okay with that at this point in time. I've just come to accept that my enthusiasm and interest in living and doing things really meant jack shit in my life. That and a bag of chips just got me an empty wrapper. I don't know if I will ever rediscover that feeling - the need and want to create. I had a big dose of that for most of my life. But it's just gone right now, and honestly, I feel like I'll be dead before it ever comes along again.  Which is okay, really - most people never even feel the spark like I did.  I was happy for a lot of years, and even though success didn't follow in the way I'd hoped - I am successful in that I did a great many things I always wanted to and never thought I would.  I did not make much money along the way, but I did genuinely garner a lot of friendships.  Those are really worth something in the end.  I always just feel like I am a lodestone as a friend - always in need, and always taking.  When I have the opportunity to give, I try to do it as much and as often as I can... I owe so much to so many people. And I'm not just talking monetary means - people have gifted me their time. Their love. Their souls.  I try my best to give it all back when I can, but I know some friends get neglected.  There are people I have lost along the way, and it hurts when I think of them.  I have never forgotten them, but alas, my time and priorities were relegated elsewhere and my relationships suffered. My resources are limited, ever so much more than people might realize.  When I say I'm tired... I'm tired. My tired is probably more exhausted than most normal people could ever comprehend. And I am this way ALL the time. And it gets worse every year.

I just got more labs drawn yesterday, and results.  It does not look good for this kidney.  There was damage to it from the donor, damage that wasn't seen until it was in me. My function is terrible. My GFR is awful. I am severely anemic.  Transplants are not guaranteed to work - and sometimes there are complications beyond your control or fault.  I do not know how long this will last. I do not think it will improve or get better - I'm being optimistic when I say I do not think. Because it will not get better. There's no way this organ regenerates or repairs itself. It's only destined to fall apart.  And this is my third one. I do not think I will be able to get another one.  Though the record is something like 7 transplants.  I just don't think that's in my cards. And I don't know how long I'll survive on dialysis if I have to go back. If it was just me in this, I'd be more okay.  I'm tired. I've been fighting this for 18 years. I've lived a good life. I've done a lot of great things.  If this is my last stand, I'd be okay with it. But I am not alone. I have two little people in my life now who rely on me so much. And I rely on them - I'd be lost without my kids.  So, yeah, I don't wanna go and leave them just yet.  That hurts. The thought of them having to endure my death hurts more than anything I've ever experienced.  I hate that this is most likely something I am going to leave them with. No matter when I pass...  so I try not to think about it too much.  But I just don't know about my future.  I put them on a school bus for the first time ever next week.  I am glad I made it here.  I hope I can go a little further.

Wednesday, August 11, 2021

Nanny Chicken

 My great grandmother was alive for most of my life - which was a pretty amazing gift. I came to appreciate it much more as I aged and realized not everyone had that. And not only did I have her in my life - she was just amazingly awesome.  She loved all of us great-grandkids too; there were a lot of us!! My mother was one of nine kids... so she already had nine grandchildren... and then came to have 20+ great-grandchildren... and she always was there for us. My mom would take us over to her house, a really cool little ranch with a neat garden out back, a walnut tree... a candy dish full of Brach's mixed candy for us to have whenever we wanted, and a basement full of books.  Just thinking about it all as I write makes me smile.  I miss her very much, especially as I've aged and had children of my own. But I am so happy for the long life she lived.

At family gatherings, she used to make trays full of what came to be known as "Nanny Chicken". Now the actual secrets of preparation are secret, but in my own estimation, it's basically "Shake n' Bake" with a few twists. Whatever the case, it was always delicious - and a hit at our large get togethers! What I love is that now she's gone, my Mom and her sisters will make it for family gatherings now.  It's referred to as "Nanny Chicken" and every time we have it... the taste reminds me of her, and all the great things she brought into our lives. This kind of silly thing is how people live on - and, let's be real - food is love.  I love that in this small way, we keep her close during important family times. I love that I have the honor of this in my life... that I get to be a part of something that celebrates someone like that.  The old matriarch of our family. These are the things that really matter in life - and not everyone is gifted with them. I was just very, very lucky to be born into what I was, and I remind myself of that on the harder days, when I start to feel like life's been unfair to me. I have had to deal with a lot over the years - but now more than ever I realize it's the idea and celebration of things like "Nanny Chicken" that have carried me through the tough times.  That's love.  That's real. That is what the fight is all about. That is what the struggle to survive in the face of doom is about. 

Course, I love the esoteric idea behind it all, but right now... I want a plateful of Nanny Chicken all the same.  Cause that stuff was delicious.

Monday, August 2, 2021

It's almost always the lonliest at 2:30 AM

 Middle of the night. I'm.... not sleeping. Of course. I fell asleep on the couch for a half hour earlier, so for some reason now, I'm awake. And alone. I have the snoring of my beloved Boston Terrier to keep me company, but other than that - it's me. Alone. With all these thoughts in my head.  My head feels like it's 6 miles across in times like this. I didn't know I could have this many thoughts.

But here I am. Awake. Forty-Three years old, at 2:30 AM on a Sunday Night in my empty house. My kids will be here in about four hours. I should sleep. But I'm lost in my thoughts. And of course, I'm lost in my loneliness.  Truth is, I could be in a room filled with people, and I'd still be lonely.  It's always lonely in my head, and honestly, there's where I exist. At least for me. I can see why some people develop soliocism. But I know the world and people exist outside of me.  But me... truly me, just me, exists in this ole noggin and I have to live with that.  It's a weird mixture of extreme happiness, joy, excitement and passion - and crushing lonlieness, sadness and regret. Both in large waves. Sometimes I think I like to sleep so much just so I don't have to be conscious with my own thoughts. Sure, I'll have weird dreams. But I can kind of ride those out.  Here, I have to live with every dripping second of what now feels like - and in full transparency, I do not like how now feels.  I am not happy to be alive right now.  I am not.  I hope I can ride this portion of my life out and find a new, better place inside me somewhere. Because right now, it hurts to exist, and while I am exceedingly good at living with and dealing with pain, I am tired of it and I hope a positive change is coming.  I have people depending on me, and I want to be there for them.

Monday, July 19, 2021

What you build, what you keep and what you lose.

 I used to think I had life figured out.

Not in any larger, esoteric sense of the word - I'm just as lost on the big questions as the next self-aware thinking bag of flesh and meat.  No, I thought I had the idea of living figured out. You figured out what you wanted, what you could get, what you aspired to and what you wished for - then you found a middle path where you were content with what you had and you'd still spend some effort to "build" more of that life you wanted.

It's a house of cards, though.  So many variables. Who you trust in. Who trusts in you. Decisions you make that seem innocuous at the time end up defining the course of your life.

I've sort of found myself at the bottom again. I spent years trying to build... something. Now... I'm okay with just surviving, and doing the things I enjoy. The only thing I want to build now is a good life for my children - in the end, right now... I've got all I want.  Sure, there may be moments where I want a stupid thing or two - mostly guitars and other nonsense knick knacks... but the big things I have covered. I have a home. I have transportation. I don't need flashy versions of those, nor do I want them. 

I just want to build stability for my kids - and for them to always know they're loved and they have a home. That's it.  I don't really care about me - I've... been there, done that.  I don't want any more. The only thing I want is something I can't buy or get - more time and perfect health.  There's a timer on me and I cannot stop it, and it gets worse as every year passes.  I just... I just want to live to see them into young adulthood.  That's my big secret goal inside my soul. I just want to live long enough to be there for them as they grow up, go to school, learn about life. I would be sad to leave them as young adults, but I would spend my time trying to make sure that they always carried a piece of me and my love for them with them as they grow. And maybe if someday they end up finding the love of their life, get married, and have kids... they can tell their children about their Grandpa Steve they never met. And get told they remind others of me.  That's all I got to build. You can take your pyramid schemes, your 80 work works to break your back for someone richer than you, you can take it all... I just want my children to be happy and remain the amazing people that they are.  I want to have a place in the far firmament of my family, so one day people can look back fondly on me.  And remember my good qualities more than my misgivings.  That's it. From here on out, I'm just trying to last longer than I think I can.  It's been almost 20 years of living with this.  My body is giving out and my soul is tired.

Friday, June 11, 2021

From the back of the room

 From the back of the room, a voice is yelling.  It seems like it might be yelling at me, but I really don't think so. I probably just think too highly of myself and I believe every action happening in a space where I am is about me. But the yelling continues.  I'm only like 20 feet away from the source, but I can't see who or what it is; it's like the room is out of focus.  Like I'm in a film, and the focus puller has made me clear in the foreground, but given the background a hazy, out of focus space to exist.

I don't even know what I'm doing here, I think.

I'm sitting in an old school desk chair - like the ones I knew growing up.  A chair with a little "desk" coming off the side and around to the front.  Why I'm sitting in one, I don't know. I haven't been to school in years.  Why does this feel like a classroom? And if it's a class... where's the teacher?

I don't have time to answer these questions, because the shouting suddenly becomes clearer and in focus to my auditory organs and I realize some one is shouting to me about... something I'm doing wrong, or did wrong.  I dunno, I don't speak the language they're using.  It's beautiful and melodious but something sinister hovers just below the surface with it.  I decide to ignore it.

Of course, I realize as the impossibly lit and pristine room comes into focus, I am dreaming.  What of again? I don't know.  Who cares. What does it matter? It's just my subconscious grabbing onto pieces of my shattered mind and thoughts.  It's trying to arrange these strange pieces into something that makes sense, but what my subconscious often forgets is that my thoughts have always been disjointed, disorganized and ultimately useless.

I don't care. I'm in a white classroom,  no teacher, faceless students all around except for on in the bag, playing hockey with my collective good memories and convincing me that they were terrible.  So I live the dream until I wake, unsettled and with the emotions and memories I saved from the recesses of my brain.

None of it matters.  Does it even matter when I wake up? Is this consciousness just a dream reality for someone else? Or a simulation... or a game?  I don't know.  All I know is that if this is a miracle cosmic experience, my trip around has been an interesting one.  I wonder how this path was chosen for me.  And for why?  I don't even really care. I'm just riding this one til it's done. Maybe then I'll sleep without these foolish and useless dreams.

Thursday, May 20, 2021

Screaming into the void... again.

 Writing a blog is very often for the author more than anyone else. I mean, I know this has been great for me over the years. I love to write, I like to try and capture my thoughts as I go through this life.  But I have to temper all my thoughts and opinions with the fact that no one really gives a shit what I think.  And, I mean, with good reason.  I'm okay with that - I like to think my experiences have shaped my opinions and that I have been through some unique situations, but ultimately... what I think doesn't matter. I'm always amazed at things I see on the net - mostly social media comments and such.  People offering unwanted opinions on things as if anyone gives a rats-ass what Johnny Nobody thinks.  There's a lot of overinflated egos and self importance out there.  I definitely used to be more like that - I'm fervent in my opinions on pop culture, books, music, film, etc.  Once upon a time, I probably thought my opinons on things actually mattered.  Either foolish youth or optimism. I can look back now and say... it doesn't matter.  None of it mattered.

None of it mattered to other people.

But... it matters to me.  So I write. I express. I shout into the void with my voice... sometimes in a song, or sometimes in the written word.  Because I need to express it, if only for myself. It's a validation of my humanity and the recognition of my soul in this mortal experience.  I'm no mover and shaker, or taste maker... and that's okay.  But, I care about what I think. Because when I stop caring, I've stopped thinking and if I've stopped thinking... what's the point in life?

So many people out there cope with the existential dilemma in different ways.  Some just live with it.  Others indulge in anything to take their mind off it... sex, drugs, alcohol, food.. many things.  And it's interesting how we can betray our own heart or moral compass when we're just trying to escape that feeling of staring into the void and having it stare back at you. It's a lot.

I don't know who the hell even reads this anymore. If you do, I hope you enjoy it. It's just my own personal contribution to the void, in the hopes that maybe I can fill in the spaces in my own soul enough to be brave and stare into the void and say "Ok."  That long lonely hallway stares at me everyday as I regain consciousness and try to do my best in this world for the people who count on me.  So, I guess, this blog is just one exercise of me standing on the precipice of time itself and screaming into the void. 

I'm not gonna quote Nietzsche here, but if you've a modicum of classical education, I know your ass is thinking about abysses gazing into you. Nerd.

Saturday, May 15, 2021

One Year

One year ago today, my wife came home from work early and said,”I can’t do this anymore.” and took the kids, left our home and went to live with her parents. I do not think I have experienced more profound loss nor greater pain in my life before or since. And I’ve had three kidney transplants and many various surgeries that would kill some people.

But the pain in my heart, soul and mind are unrecoverable. I put my all into us and what we had. I was always scared to love, to trust - because I knew it would inevitably end the way it did. I am irreversibly broken and though I will never be complete again, I continue on. For my kids - they love me so, and I them. Honestly, as cliche as it sounds, they’re the only reason I’m here. They really seem to adore me and I hate to put any sadness into their life by not being here.

And I miraculously got another kidney transplant after not faring well on dialysis- yet it felt so hollow. All I wanted was a transplant so I could do better for my family - and for my wife. I never met another human being I adored as much as I did her, and to watch her disconnect from me and leave me was much like watching my kidney slowly fail over years and leave me. Heartbroken feels like to easy a word to describe how I feel. Language is all about communication but I don’t think even after a year I have written enough words to express my sorrow. I can’t even find the right music to express it. I play every day but nothing quite captures it fir me. I’ve written many songs but they are not quite there, for me. Hopefully they connect with others and bring some solace to them someday when I record them.

But another year - they say it gets easier. It doesn’t. You just get more adept at dealing with it and existing through the pain in your life. But deep in the night when I cannot sleep, it finds me and reminds me of the depths of my unhappiness. I do not see a good or happy future for me for the rest of my days. Which I am sure are much more limited than others. If I could survive 15 more years, for Jack and Josephine to grow into young adults, I will be happy.

I put all my love and faith into one basket that was irrevocably destroyed. Such is the risk you take with love. And in spite of the end, like a fool, I would not change a thing. What I had for those years was worth the fall. I’d do it again and again, like a fool, for the risk always lives. To live... would be an awfully big adventure.

Tuesday, April 27, 2021

I Don't Know How Some People Do It

 I really don't know how some people just... talk, all the time, to others.  About nothing.  Like, I see people texting - constantly.  And I often wonder what kind of bullshit they're sending to each other. I just don't text that much or often, and find it kind of useless other than sending pertinent information.

But people use it to communicate these days - to live, work, flirt... it's weird.  And I've always been a tech guy and I've been internet chatting since my modem days in the late 80s. But... I don't know. Maybe I'm just old and have run out of things to say.  Or that I'm just not as into bullshitting small talk as I was when I was younger.

I've been through too much shit to do that dance. Finding myself unexpectedly single now at 43... and seeing a lot of my peers experiencing the same thing, I am noticing this odd regressive trend where these people are acting like they did when they were in their 20s.  And it's lame.  If this is how the world at large is working right now, I'd rather be single than have to mess with things like Tinder, Bumble, Hinge, Snapchat, etc. The inane amounts of texting along nauseate me. People nauseate me lately. I don't have much patience or love for some things these days, and that upsets me. I think when dealing with a swirl of emotions, you'll always have periods of different prominent feelings - and right now, anger is very easy with me.  Not on a small, interpersonal level - the people in my life day-to-day are wonderful.  But my anger at a larger sense of life... well, it looms large on me right now.  I'm trying to channel that into positive energies for me - I've been working out more, to strengthen my body again and channel the energy produced by my anger into something that works for me. I have to remember to breathe, and feel my thoughts in the breathe.  And try not to worry so much about others and worry about myself.  But it is remarkably hard when I have to live in this society now, and things happen in my life beyond my wishes or choices.

Basically, I'm sick of your shit. So, I'm going to recover, I'm going to come back stronger in life, and I will do better for myself than I did before.

Sunday, April 11, 2021

This is the time to remember

 Once upon a time, when I was young and much more carefree than now, I stole off to the north with a girl I was seeing.  In the middle of the night, we drove up to an old shack she knew on Lake Ontario - it was right on a sandy beach, and a perfect spot.  It was a warm night, and the wind blew melodiously through the tall grass that surrounded the other cottages and shacks on that dark little side rode we turned down.  We found the cabin, parked, and ventured up to it, and then beyond - to the beach, and the lake.

I don't know if you've ever been to one of the Great Lakes, but their nomer is not undeserved. It's almost like being at the ocean. A million stars shone down on us on that clear night, and the moon hung in the sky, silver and perfect. And I loved this girl so much, I didn't know what to do with it. I'd never quite felt that way before in my life, and in a time so perfect, I was just happy to be alive.  We gathered up some dried driftwood and assembled it in a pile on the beach, just beyond the reach of the waves that lapped up gently onto the soft sand. I had a funny habit of saving all of my recipiets from purchases in my wallet; it looked like an overstuffed sausage, just full of tiny little papers.  But I took those pieces out and I used them as kindling to start the fire.  They caught quickly, and caught the dry driftwood easily.  In a little shallow pit dug on the beach, we had a fire, we sat together, under the moon, and enjoyed each others company.  It was long ago, but I can still see the stars reflected in her eyes, and the way the light from the fire danced on her face.  I'm so glad for that moment. Not everyone gets to experience moments like this - beautiful, perfect, lovely, romantic. Almost like a storybook.  But there I was, in love and loved back and it was all so simple. We stayed on the beach for a few hours before we put out the fire, climbed back into the car, turned on the radio and sang along with every song as we drove home.

I couldn't buy that moment. Even if I tried; I was too poor and too young then.  But I know I still couldn't buy it again now. Nor ever experience anything quite like that again.  Some moments are just meant to happen and only live in your mind forever. Cause the world changes, circumstances change, life changes, you change... but in all those changes, nothing can take that away from me.  It's mine forever, and I was just lucky enough to be there for that moment.

Thursday, April 8, 2021

Enjoy the Moment

 A few years back, I used to often drive past an old wooden power-line pole - at the top, an Osprey had built a fantastically large nest.  It really was a sight to behold.  I'd drive past, and sometimes I'd get a glimpse of the magnificent bird that lived inside.  It was obviously built to house the eggs that the female would lay, and watching the Ospreys guard and nurture what was inside was quite a thing to behold.  At the end of the day, with the sun setting behind it, I'd ponder the nature of their life together - and just how magnificent it was in that moment.  Hunting, fishing, protecting the young.  All in a large, intricately gathered nest, built by their own work and ingenuity.  I loved driving by that nest.  The summer ended, and fall came - the nest was still perched up there.  Winter came, and I didn't drive by that spot.  And when spring came, and we ventured out again - the nest, in all it's splendid glory, was gone.  Winter had knocked it down, and the Osprey and offspring had long since moved on.

At the time, I mused on how sad it was - but lately I've been amending my thoughts on it.  Sometimes something is amazing - beautiful to behold and wonderful to live in for a while.  But it has its season, and things are abandoned and destroyed but life moves on. And that's just the way it is sometimes.  We as humans have a tendency to grab on to things, and do our best to try and make them last forever - or at least as long as we can.  Some things last longer than others - but, as I'm often reminded by the eminently quotable Robert Frost, "nothing gold can stay."  My own life has had its moments of shining brilliance - and some have ended.  But I remain, and I can go forth and try to find new moments in the future - and it's okay if they never match the splendor I once had.  For at least I had them once, and it was precious and it was good.

Wednesday, February 24, 2021

Everybody is experiencing trauma right now.

 There's no mistake about it: everyone is experiencing trauma right now. This pandemic has been.... insane.  It has upended every aspect of modern life - and revealed a lot of ugly truths in people's personal lives but also many ugly truths about the society we live in. Like...a  lot of ugly truths. There is a lot of anguish, suffering and disparity now.

How people are coping is something else too. Some people become introspective. Head down and just try to deal best they can. Others... well, they're pretending nothing is wrong. Indulging in things maybe they shouldn't.... coping is such a weird thing.  And I know a lot of us are doing it.

I hope society can do better after this.  There's a lot of sadness, anger and disparity.

Wednesday, January 13, 2021

Perception and Reality.

 I can't read minds. I can only go by what I see, and sometimes, what I feel.  But often people can have a totally different view of you than you think they do - especially if communication between the two of you is lacking.

Life is funny. It can sadden and humble you pretty fast and quick.  I know I have to change a lot of things about myself - and I'm working on it.  I always thought at heart I was a pretty decent person. Not perfect, but a person who was trying to be better.  We all could use a little more work, though, couldn't we?

I don't know if I will ever quite trust people fully again.  And, honestly, at this point in my life I don't care. I don't need to trust anyone else ever again.  I just need to do the best I can for me and my kids.

Monday, January 11, 2021

Memories of Vacations Past

 I saw an old picture from the first time I ever visited Orlando, FL and went to Walt Disney World. The time stamp on the photo reminded me that it was six years ago today. I can't believe that much time has flown by. That was a very special trip for me. We'd always wanted to go; a few years before, when I was on dialysis, my wife set up a trip for us that fell through.  So actually going on a vacation somewhere was really special for us.

I am flooded with memories and emotions about that trip, and the ensuing months. It was a very special time in my life, filled with a lot of joy, happiness, excitement... and love. 2020 being the year of covid for the world meant no vacations for anyone. I really need a get away. It's been a tough time.  Just want to go somewhere warm, relax and maybe find some happiness inside me again.

Wednesday, January 6, 2021

Fourteen Footsteps

 I walk down the hallway and take a left into the kids room; it looks decidedly different than five years ago we we eagerly redecorated it with carefully chosen art and paint for the walls.  The crib was on the right; it was waiting to hold our little boy who was to arrive in December (and arrive he did!).  And when we found out we were having a girl who'd arrive 16 months after her brother, we painted two walls pink, and put up the very carefully curated art for her arrival.  My wife was really into finding the right prints to hang on the wall. She got several which I am still very much in love with.  One still hangs on the wall - the rest are gone now, hanging on the wall in my children's bedroom over at their Mother's.  The room is different now; I got the kids some bunk beds earlier this year - made by a local guy out of some huge pieces of wood.  It's nice, and sits in one corner.  It's amazing how quickly the crib, diaper and bottle stages passed. My kids are walking, talking little people now. And it's bedtime tonight; we go in their room, and I get their pajamas ready.  

My daughter is insistent on putting on her own PJs.  She's three; she'll be four in a few months.  My son is five, and entirely capable of putting on his own PJs, but never turns down my help in putting them on.  This secretly makes me happy - I like to feel I'm still useful that way to him.  He probably never thinks about it, but I've been dressing him since the day he was born.  My wife picked out a lot of the kids clothes; she's good at that. Even when they were little, she used her keen eye and fashion sense to make even the most mundane kids clothes feel nice.  That was special. I don't know if I ever told her that or how much I appreciated that. I feel like I did, but who knows. I don't know much about what I did right or wrong any more anyway.  But the kids are in their PJs, I've gotten them water for bed, and given them their "bedtime medicine" (melotonin gummies) My son asks for a bedtime story, so I improvise a little story about him and his sister vising some dinosaurs.  They get a kick out it. I do funny voices for a T-Rex and I curl my arms up really small to imitate the T-Rex's tiny flailing upper appendages.  They giggle.  I give them hugs and kisses, tuck them in, turn on the star night light, and close the door.

I walk back down the hall - dark, cold, alone.  I used to like doing this as a family - once upon a time, it went that way with all four of us.  Now that their mother and I are separated, it's just me and I'm trying to do the best job I can - to send them off to sleep, warm, comfortable, safe and loved.  And they don't know how much I'm hurting inside the whole time - how I feel like half a person, and how this isn't the life I wished for when I became a parent.  But these things happen, and we have to proceed the best we can.  When I have the kids, we facetime their mother before bed, and they say their goodnights.  When she has them, she facetimes me and I say goodnight to the kids. At least we have this in  our modern world.  But for me, personally, for my end of it - I always loved when we carefully shut the door behind us, and walked down the hall to go relax and sit in the family room. Usually let the day kind of slough off us - watch some Netflix or whatever, chit chat. Mostly as we walked down the hall, I'd reflect on how lucky I was and how much I loved those little kids, and her for making them possible.  So, yeah, now that walk is so lonely. I never realized how 14 steps could just been the loneliest footsteps anyone could take and that your heart would break a million times over with each one.  But here I am. Learning yet another lesson in life - I'm glad to learn, adapt and get better, but I wish this one didn't hurt so fucking bad.

Friday, January 1, 2021

Eighteen Years Ago

 18 years ago, I was wheeled into the ER with a BP of 220/180 and a loss of vision. I didn't know what was wrong with me. I'd been feeling sick for a while, but I just wasn't sure. So when I was told after numerous tests that I had End Stage Kidney Failure and that I'd need dialysis for the rest of my life, or I could eventually get a kidney transplant, I was... floored.

I was 24. My interests were playing guitar, writing music, hanging out and finishing up college. I wasn't prepared for this life.

But, I've lived it. For 18 years.  I've endured years of dialysis, two failed kidney transplants and now a third which we all have great hope for.

What a strange life I've lived.

Yeah. I'm sad and lonely this New Years Eve.  It's the first I have spent alone in 14 years.  Hopefully things will get better. I've been down before on New Years.. but not out.

I'm not out yet. The world is still mine.