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.

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

Perceptions

 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

Taffy

 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

Coasting

 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.