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.

Thursday, September 22, 2022

The Lord of the Rings

 I was feeling kind of down in the dumps the other night; kids were at their Moms, and I was home alone in my empty house.  It happens - often when I'm feeling the sads, I'll turn to some of my favorite things to try and lift my spirits.  This seems harder to do as I get older, I don't know. Maybe I'm growing more curmudgeonly, or maybe my depression has a better hold, but often things I used to enjoy and love don't hold that same spark.  But the other night, I put on Lord of the Rings: Return of the King, and sat down to watch four hours of film by myself.

I'll have to go back to my childhood here, and talk about how I loved reading as a kid - I learned to read at an early age, and ever since then, stories have enthralled me and taken me to places I never thought I could go.  I especially loved fantasy and sci-fi books; they always had a certain magic and phantasmic quality that spoke to me.  So early on, I developed a love for A Wrinkle in Time by Madeline L'Engle, The Chronicles of Prydain by Lloyd Alexander, The Chronicles of Narnia by CS Lewis and of course, The Hobbit by JRR Tolkien.  I knew that there were stories after the Hobbit... the mythical Lord of the Rings.  Lord of the Rings had a real cult status when I was a kid in the 80s - at music stores, there were always these fantastical LOTR posters (always near Led Zeppelin records, weird huh?) that depicted the imposing Gray Wizard Gandalf... with sword and sorcery movies being prominent in the early 80s, and Dungeons & Dragons becoming popular, fantasy imagery was just everywhere, and I was sucked in.  But LOTR eluded me... the sheer size of it was daunting, and the language was dense and deep to a kid... I didn't read it til I was in my teens, but the love of all things it encompassed was impressed upon my soul at a very early age.  So, it became a treasured part of the story library I kept in my head and heart.  When Peter Jackson announced he was making three films in 1999... I was so excited.  I remember watching countdowns on the official website, back when the internet was still nascent! I saw The Fellowship of the Ring in theaters, and I remember from the opening scene showing the battle against Sauron and the cutting of the ring by Isildur... I was hooked. But in 2002, I was battling kidney failure and didn't even know it.  When The Two Towers came out in late 2002, I was nearing the end... when I saw the film, I felt sick, terrible, and my vision was blurry from my illness.  I enjoyed it, but I had this weird sense of dread that I might not live to see Return of the King the next year.  In the time between the films, I was diagnosed with ESRD, put on dialysis, and I had my first transplant just a few weeks before Return of the King came out.  I was alive, feeling better than I had in years... and my first outing after surgery was with my brother to see Return of the King.  I lived, I survived, and I saw the completion of the films.  I loved it - the film was epic, amazing, uplifting, and an ode to friendship, and the strength of love, courage, family & friends.  The same things that had helped me survive my own journey into Mordor, as it was. 

So the film holds a special place in my heart - it's a reminder of that time, what I endured, and what I was able to face and overcome. So watching it every time since has been a somewhat emotional experience for me, personally - not to mention the content of the film.  At the end, when Frodo Baggins has become so weak from the nefarious power of the ring and he cannot continue to climb Mount Doom, his best friend, Samwise Gamgee, says to him "I can't carry it... but I can carry you!" and throws Frodo over his shoulders and climbs up towards the top of Mount Doom, to where the ring can be thrown in its caldera and destroyed.  It's a powerful moment in storytelling and film, and definitely hits me hard.  I've had a lot of people carry me up that hill when I could not go further. In the end, the ring is destroyed, and Frodo and Sam, two small, seemingly insignificant beings, have saved the entire world, with the help and support of their friends.

I sat through the movie, alone, with my dog - watching the story unfold, but thinking of my own the whole time too.  There's been adventure, there's been love, there's been pain, there's been sadness but I've lived through it all.  Sometimes it's overwhelming, and not every day is perfect here and now, but I'm glad I have something like a silly film to not only entertain me and lift my spirits, but to remind me of everything I've managed to accomplish in spite of great odds, and the amazing people that have given so much to get me here.

Thursday, September 15, 2022

Back to School

 My kids have been back to school for over a week now; every morning, I get up and I pack their lunches. Some days they've stayed here, other days their mom brings them over to my house before she goes to work, so they can catch the bus here.  But every day, I get the privilege of seeing them off on the bus. It can be a rush in the mornings - especially when I'm getting them dressed, making breakfast, putting together their lunch boxes, making sure their backpacks are set, and getting them out the door and on the bus - but to me, these mundane chores are magic.  I marvel at the fact that I have little people of my own that get on that bus - and later in the day, they get off it, run up to me and just start babbling to me about their day or whatever else is on their mind.  We're pretty close now, my children and I.  I know it won't always be like this as they age, but right now... it's a magic moment in time, and yet again, I'm thankful that I'm even alive to experience it.  

This circle of life thing is a wild carousel; it feels like just a short time ago, I was changing their diapers, rocking them to sleep - swaddling them snugly so they could sleep! And then I think of myself, and I feel the ocean of time wash over me and I remember riding the bus to the very same school they're attending now - only for me, it was 37 years ago.  Prior to my kids orientation, I hadn't set foot in that school in 32 years.  It was recently renovated over the summer - and many features changed.  I noted a new entrance way, and it's safety features... very different from the wide open main entrance of my youth, with a giant, open atrium.  I noted in my mind, sadly, why the changes.  The heavy, lockable doors that separated things were a terrible reminder of the world we live in now.  This will just be normal to my children, going forward - a sad thought to me.  We always wanted a better future for ourselves and our potential children when we were younger, and while we have many new miracles of technology, I do wonder if my kids have a better world than I did at their age.  They're certainly happy, and I'm thankful for that.  But on some level, I do feel society has failed them. Education isn't just about learning facts; it's about gaining insight, and wisdom. It just feels like there's less and less room for the wisdom of whimsy as a child, these days.  I don't have any answers yet, and neither does society at large.  Right now, I am glad that their safety is a priority, at least at that level.  But it goes beyond just keeping a secure campus - our society is less secure.  Angry.  Polarized, energized, desensitized and with out good guiding principles in many ways.  So I do hope in my kids lifetime, things improve. 

Right now, as I write this, I'm waiting for them to come home, and tell me what they did today.  We'll do this all again tomorrow, and I am happy, lucky and fortunate to be here, to be their father and to be given the opportunity to love and guide them.  Cliches are cliches for a reason - so enjoy all the mundane, stupid stuff.  It's what matters.

Sunday, August 21, 2022

The Importance of Being Earnest about Sweets

 I'll never forget my first can of Dr Pepper.

We were visiting my Dad's oldest sister - a place I always remember as a very musical house.  She had three kids, my cousins, who were all a fair bit older than me.  They were all so musical, along with my Aunt. She had the most beautiful voice- I cannot recall all the details of that day, as now I'm of the age where trying to remember childhood memories are encased in a fog as my brain slowly degrades. Lovely, I know... I digress.  But I remember seeing a case of Dr Pepper in her kitchen - a new soda? One I hadn't tried?  I loved soda as a kid; it was a real treat.  We didn't have it often, so I was intrigued by the maroon color and the amazing typeface of the logo.  My obsession with typeface and fonts may have its origins in that old Dr Pepper logo... but I asked her about it.

    "What is that?" I asked, pointing at the case of soda.

    "Oh... that's Dr Pepper! You might not like it," she said with a grin, "It's kind of... spicy!"

    "That's why they call it Dr Pepper!"

    "Oh yeah," she replied mischievously.

    After some more cajoling, she finally gave me a cold can of it from her refrigerator, and popped the top on it.  I took a sip... and while, to me, it did have kind of a kick, it was sweet... and different from anything I'd had before.  I immediately smiled and said, "Whoa! I wanna drink this forever!" She laughed and said, "Yeah, it's pretty good...we like it! Now don't drink too much!"

This is just a tiny memory, based on getting an old sweet from my Aunt in the kitchen of her raised ranch home.  Kind of a banal moment, really, yet it's burned into my brain.  I guess sometimes these moments burrow into your mind, so much so that every time I see that classic Dr Pepper logo, in the big white font on that maroon background, I think of my Aunt.  She passed when I was 16, only a few years older than I am now. I still miss her very much - I often think of what she might have thought of me as I grew, the things I did.  Loving people who have passed from your life is one of the most difficult but amazing things we get in this human experience.  She's been gone for almost 30 years, yet a piece of her lives very vividly inside me.  She probably never thought about that Dr Pepper moment ever, yet it's something that endures.  I try to remember this when I think the things I have done are insignificant. Someone, someday, is going to have that "Dr Pepper" moment with me, and in a way, it keeps me alive long past my traditional existence. 

Monday, August 15, 2022

Lucky in Love

 Yesterday, my parents came over to my house to help me remove and replace some old rugs in my house.  My dog, getting up in her years and becoming more obstinate, has made a habit of peeing on rugs in my home and it's only gotten worse lately.  I had to get rid of two rugs in my house; my folks came over, and hauled them up and out and helped me get ready to put new ones in.  It's a lot of work; I'm trying my best, but between being a single Dad and my health steadily declining, a lot slips by me lately.  They help me out a lot - and I cannot tell you how many times I sit alone in my house with my thoughts, and dwell on how thankful I am for my parents.  Not everyone has the support system and family that I do, but my parents have really put themselves out to help me and my kids.  It's hard on me, emotionally; I wish I was more self-sufficient and less of a burden on people. I want to be the one taking care of people, helping them out... and not taking up the time of people I love.  People who are retired and off enjoying their life and time.  But they give so freely of themselves, and with love... it fills my own heart when I see how they treat me, and inspires me to try and be the best father I can be to my children.

The joy with which they love their family just make my soul swell.  They invited me out to dinner that evening; they were having dinner with my older brother, my sister-in-law and my niece before she left to go back to school for the fall semester.  My niece is just a wonderful young lady now, and she's always been special to my heart - she was born just a few weeks before my first kidney transplant, and every time I see her, I am reminded that through the miracles of modern medical science and the love of my family, I have lived long enough with end stage renal disease to witness her birth, and her growing up to become a young woman.  I often muse upon the fact that this young lady has never known a world in which I was not deathly ill... but watching her and her sister grow up has been truly one of the greatest gifts of my life.  We all had dinner at a local pizzeria last night, many laughs were had and stories were traded.  Pictures were shared on phones... it was just a really nice night.  Just before we all parted, my mother reached into her purse and got an envelope with a card in it, and I watched her lovingly put it in my nieces hands.  She smiled sweetly and said "Just a little something from us for going back to school..." and I was privately a witness to another act of my parents love and generosity for their grand-kids. I've watched them be this way with those girls for their whole lives, and now I watch them be this way with my children... on my drive home, I had tears in my eyes as I thought about how lucky I am, and how lucky my family is.  I have wonderful parents who truly love giving to their family, giving of themselves, their time and their genuine affection.  There's real love that flow through us all, and so many people do not have that.

I may be facing large odds and difficult situations in life, and I may stress out about being a burden in the lives of the people I love, but I am sure of one thing - I do not lack for love, and honestly, with that, I have been able to endure so many things that cause other people to cast in the towel early.  I will continue to fight for a better life for myself, for my kids, for my family.  Maybe my fortunes will change, and someday, I can take care of those others in my life who have given so much of themselves for me.  For now, I'm going to be thankful that this is where I ended up in this world.

Monday, July 4, 2022

Simpler Times

 I drove by a section of the Old Erie Canal today - I was out for a drive by myself on this Fourth of July, and I took in the sights.  But seeing that old Erie Canal Park reminded me of just how intrigued I was by it as a kid.  We studied about it a lot in elementary school - growing up in Central New York in the 1980s, it was just part of our local history.  They seemed to be doing a lot of work then at restoring sections of the old Canal and turning it into a park - one long park that ran for miles. (36 miles, I am told as I research - from Dewitt to Rome NY) I kind of took it for granted, but looking back I can see I was a child during the time when the most money and attention was being put into this - there were parks along the way with playgrounds, pavilions and picnic areas - and often little museums about canal history. We often took Field Trips to these places - and I was just fascinated that they dug a canal across the length of NY state to transport goods in the mid 1800s. Some things they opened in the 80s are gone, but some areas and parts have thrived - just seeing this one section remembered the thrill I had as a kid - going on a field trip to such a place, and learning about the history of it.  That really thrilled me as a child - again, I wish I had that same kind of fervor and zest for life as I did when I was eight. You do lose that kind of excitement as you age and your perspective and world gets wider.  But I enjoy remembering those times - and now, I enjoy seeing my son and my daughter get excited about such kinds of things.  My son went on his first field trip to the zoo this year, and hearing him talk about it - well, I can say I lived vicariously through his excitement, his thirst for knowledge and his want for fun.  Both he and my daughter are good reminders to me of what I love and value in life and that is treasuring experience.  Treasuring learning; learning from a classroom is a necessary bore, but learning from experience is a pleasure that will continue to pay back as you age.  Here I am, 35+ years later still treasuring all the experiences I had learning about the Erie Canal from on-site visits. You can learn much from textbooks and from a classroom, but you can learn even more just by experiencing life and being open to it.  I have to remind myself of that, because I am more closed off now that I am older and curmudgeonly in my ways. But I still have much to learn, everyday, if I am willing to submit myself to the experiences that life may put in my way.  I can still learn and still be excited by it. I can't wait to see what tomorrow brings me and my kids.

Monday, May 9, 2022

The Front Room

 In the old farmhouse, there was a front room - had a big, round table made of orange formica.  I spent a lot of time in that room growing up - there was a beat up old two seat couch in it, and I played a lot of guitar on that couch.  Spent time learning chords there, all the way up til I could run up and down the fretboard in a decent approximation of a skilled guitarist.  We all spent a lot of good nights in that room - the grownups played cards, the kids did too when the old folks weren't there.  We listened to a lot of radio in there - that's all we had. Electricity was in short supply, but battery powered radios pumped in songs from radio stations all across the North Country and Canada.  I played along to a lot of Neil Young.  Sometimes, they'd play old "Firesign Theater" re-runs.  I can't hear Firesign without thinking of that camp in the old farmhouse.  I can't play my guitar without feeling that room, and remember the people who inhabited it.  A lot have passed on now, but their memory lives inside me and sometimes inside my fingers as I play songs still.  I'm getting older now, and it's funny to think I was ever a child inside there.  I heard some Firesign Theater earlier today randomly, and I thought about that room.  I cut my teeth on a lot of things I still find joy in, and now all I have are loved and precious memories of that room and the people I knew from it.  Life is good, especially in the small moments.  I try to remember times like this when it all seems so futile.  Time seems to be bearing down on me - I get stuck in points where 5 minutes can seem to last forever and hours are not enough.  I guess when I was young I figured I had all the time in the world - but now as I get older and my health grows dimmer and dimmer with each passing day... I really see how finite what I have is.  It's sad in one way, but at least I can say I lived moments like this and they shaped me into a person I like and sometimes enjoy on occasion.  Cliches are cliche for a reason, but Warren Zevon was right - enjoy every sandwich. Every one.

Friday, April 22, 2022

Finding Joy

 I don't know if it's just a general thing about life, or if it's compounded by my own personal struggles, but with each passing year, I struggle to get the same enjoyment out of things that I used to love to do.  I suppose that's an element of depression - depression is such a broad topic, and what encompasses it varies from person to person greatly, but the loss of interest in things that once brought you joy seems to be a common thread.  I could explain my feelings on the matter as simply "I don't enjoy things I used to do." but that's far too simplistic an assessment of my feelings.  I still find a lot of joy in many of the things I do, but the certain spark, or joie de vivre, has irrevocably changed.  But I think it has to - with age and experience, your barometer for excitement is changed, tempered.  And I can't force that wonder that comes from being young and doing things that excite the soul.  I mean, for instance - I still love to play guitar.  But it doesn't quite move me the same way it did when I was younger.  Maybe the self-delusion of potential rock-stardom somewhere off in that great distant "someday" has petered out as I have reached and surpassed the age of the great distant "someday".  So my expectation has changed - I don't hold any delusions of being a rock-star, but in having that silly hope, it used to drive my passion.  Sometimes you need that ridiculous moonshot style dream to fuel that wildfire inside.  Now... I'm more than happy to play some songs that my family would enjoy up at camp - around a campfire.  I'm more driven by the hope that me playing music will inspire my kids to learn to do the same - or at least entertain them.  I love it when they light up as I play a song I know.  See - dreams, goal posts shifted.  Maybe not as lofty at 21 year old Steve, who was ready to give up the world and start touring in a dirty old van with 5 or 6 other musical reprobates.  But I like this 43 year old Steve who loved to sing songs with his Mom & Dad up at camp, and in his living room with his kids.  

But I am not quite as driven to do so as much.  In my youth, if there was a guitar anywhere near me, at any time, it was in my hands and I was playing a song, or working out new chord shapes to learn. Or noodling exercises to limber up my fingers, gain speed, and memorize scales and modes.  I miss having that drive.  But in writing something like this, it makes me love the moment in time where I was that guy, and then remember to love this guy who's much older, wiser and experienced too.  I've learned more than a thing or two, and as sure as there's stars in the sky, I have a thing or two more yet to learn in this lifetime.

Sunday, April 17, 2022

I'm All Right (most of the time)

 I think I'm all right, most of the time.  But then I have moments where I actually let myself think about things - and I have to face to the fact that I've been seriously hurt in some unimaginable ways in my life - physically and mentally.  You do what you can to survive as a human - you cope, you put things that have priotity to the front, and in dealing with those it can shield you from the trauma of what you've dealt with.  I do okay with that.  I do have moments, though, where I let that floodgate open a bit, and goddamn, it hurts.  I think of some pretty amazingly hurtful things - things that ripped my soul apart, things that irrevocably changed me mentally, things that catastrophically altered my body... it's a lot.  I'm sure a lot of us have those moments.  We're okay until something triggers it a bit.  I'm glad for those moments when I am alone and this happens - I'd just rather deal with it myself.  I had a bit of that earlier tonight - I was reminded of something that really crushed me and changed me, and I got pretty sad about it.  But as I faced it, let it wash over me, I thought about how it was another thing I survived and how I've kept going.

But, let's be honest, some of us are real sick of surviving shit that would just kill or end some others.  It gets tiring carrying that burden.

Thursday, April 14, 2022

Things I Won't See

 Tonight, as I was tucking my son into bed, he said to me, "Dad, you're the best Dad!" in only a way a six year old boy can.  I mean, every day I'm touched by his sweetness, but tonight seemed especially fond.  We had a nice night; we got some food, and then drove to Green Lakes State Park. He and his sister asked if they could go to the beach and watch the sunset.  It was cooler, but still a beautiful spring day.  It was a perfect little evening; I sat at a picnic table, eating my dinner and they ran out the beach near the water.  The sun began to fade down behind the mountains... one of those little moments in life you're just glad you're around from.  So after watching some cartoons together before bed, I settled them into their beds.  After his glowing affirmation, he said to me, "Someday, when I grow up and I'm a Dad, I'm going to be a good Dad too."

Sometimes the things your children say just hit you deep in your soul - those places that make you intimately human and touch your mortality. In an instant, I realized - even with the best medicine, and best care... the likelihood of me ever living to see my son become a father is not to be. And, I have to admit, it hurt.  I kissed him and his sister goodnight, and wished them sweet dreams, trying my best not to let the flood of tears that welled up inside rush out.  I closed their door, went into my room, and let it out.  A few heaving sobs - they're such good kids.  It's been the joy of my life to spend the last six years with him, and five with his sister.  I mean, I've done a lot of great things in my life, but being a father is something I actually thought would never happen.  So I focused so much on just surviving and being alive to see that.  Now when I think of the prospect of me not being there to see him become a man, see him become a father... I can't tell you the sadness I feel. I would love to be there for him and his sister.  But I don't see it in my card.  The fact that I've lived for almost 20 years with ESRD is a miracle in an of itself.  If I get another 20 years of life, it will be a great miracle.  And even then, he may not grow to be a father.  I would love to see it.  Love to be there for him as we grow old together - to share whatever bits of knowledge I can; share whatever useless gook I've crammed into my brain over a life time, and to share the boundless love in my heart I feel for him.  Oh, but I doubt I will be there and it absolutely crushes me to my soul.  I don't think I've ever felt heartsickness quite like this one. I'm going to be there for them for as long as I can, but I want to stay forever, just to be close to them.  Someday they "won't need me" as much.  And that will hurt too, I'm sure.  So I'm going to ask those of you who know me, and may be around - watch him for me.  Watch them both for me.  Let them know their Dad loved them so much, from the minute they were born, and he always wished and hoped he'd see the day they grew into the people they'd become.  If you ever see them missing me, don't hesitate to tell them that I'm always with them, and that I loved them more than I could ever truly say.  Though I know I'll spend all my time trying to do so.

Monday, April 4, 2022

Circle of Life

 My daughter turned five years old today; watching her bound around my house with a smile on her face, wrapped up in her unicorn dress and playing with the many new unicorn stuffies she got for her birthday brings me absolute, unbridled joy.  It's just amazing to me how the time has passed - five years was a blink of the eye for me but it's been her entire life.  It just makes me remember when I was five - we lived in a little house in a different time.  A small little neighborhood enclave, but it seemed like a huge world to me.  Really, it was just two streets tucked off the main street in a little town in Central New York.  But my friends lived just down the road, and we played in the streets - the world seemed so large and unexplored to me.  I remember the sense of wonder just one trip down the street provided. I see the same glee and depth in my daughters eyes and it just makes me happy to be alive.  I've survived a lot just to be able to have these moments with her, and that is a miracle.