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, 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.

Thursday, March 17, 2022

Four Leaf Clover

 When I was a kid, I obsessed with four-leaf clovers.  I grew up in a town with a sizable Irish population, and I came from a family that originated in Scotland, was exiled to Ireland, married up Irish lasses there, and then immigrated to Canada, then somehow made their way down south just far enough to Syracuse, where they said, "There's enough snow, salt and potatoes here to make us all happy."  or something.  Anyway, I grew up in a family where Irish eyes were smiling.  My father's eldest sister, Diane, was a tremendous singer - growing up, I always loved to hear her haunting vibrato as she sang Irish folk songs at family gatherings.  "Can Anybody Tell Me Where the Blarney Roses Grow?" still echoes in my mind in her voice all the time; we lost her almost 28 years ago now, but I still think of her all the time.  She was an early influence on me musically - she was a tremendous musician.  Sold me my first Trumpet, when I took that up in grade school.  But today, especially, her voice rings in my head and my heart remembers. 

But, back to four-leaf clovers - today was unseasonably warm, as St. Patrick's Day can mysteriously do in Central New York, and my son was playing in the back yard, hunting the freshly revealed grass when he exclaimed "A four leaf clover!" It turns out, it wasn't... but I remember the last time I found a four-leaf clover.  It was 2011, I was on dialysis and not doing the greatest.  Feeling kind of down about life, and my position in it.  When, out in my driveway at the house we lived in at the time, I spied one growing in the grass just to the side of the pavement.  I plucked it up, and sure enough - four petals on that clover. I smiled, and wondered what luck it would bring.  I showed it to the folks inside, and I think we all shared in a silly moment of appreciating it.  It's kind of a silly thing, but these little traditions and superstitions can bond us.   All I know is a few weeks after I found that, I had taken my wife into work and then went to Wegmans to get us some milk.  We were out... and while I was shopping for milk, I got a call on my cellphone from my kidney transplant clinic.  Hours later, I was being prepped for what was ultimately my second kidney transplant.

So, maybe there was some luck for me in that little plant I found.  Sometimes it seems like bad luck follows me - but maybe it's just cause the bad times hurt so much they take precedent in the memory banks.  But when I think about it, I've been pretty damn lucky too.  I hope we all find lots more four leaf clovers - and may luck, prosperity, peace and goodwill find us all when we need it.  I know it's found me many times, and I must remind myself of that on days when I am low.

Tuesday, March 15, 2022

He's been gone

 The first time I ever met my friend Dan, he was holding court in a local bar during karaoke night. Tall, loud, garrulous and good looking, Dan welcomed us in with a smile.  He was dating my friend Mary at the time - Mary was working on a show at LeMoyne College along with me and my buddy Sean.  She was from Auburn, just a quick half hour or so away from Syracuse, so we piled into a car one night after rehearsal and set out to party in Auburn for the night. College students on an impromptu minor road-trip to go drinking a town over are often an excited, rowdy bunch, and as I recall, we were no different.

We were going to a place Mary and Dan hung out in on the reg, an eclectic bar called "Swaby's Kangaroo Court" in beautiful downtown Auburn, NY.  This place was filled with all kinds of cool bric-a-brac; there was even an alcove that was sealed off with bars, but behind it was the actual old electric chair from Auburn State prison.  It was said that it was the chair that Leon Czolgosz, assassin of president McKinley in 1901, was executed in.  All in all, a very cool place.  Karaoke was in full swing that night - in an unfamilar town, we made our way in.  I don't remember much of that night, honestly, as those nights tend to be a blur in my older age.  I've been through a lot in the interim, and we definitely drank out fair share that evening. But I remember singing songs with my new friends, having fun... and being young.  But most of all, I remember Dan.  It was nice to meet a new friend, and one I ended up having many good times with over the years.  Dan passed away suddenly three years ago, at age 40.  

Sometimes I still can't believe he's gone.  That's life, though.  I always expected to go before so many of my peers, but here I am.  Just one of the ones left behind - so at least I can share this little tale of mine in memory of him.  He was a good person - a fun, smart guy.  He loved to argue, but in good nature, and we had many verbal spars as well as laughs, hugs and the joy that comes with friendship.  Just another person I am so glad to have met along my travels - but someone I definitely miss dearly.  I would have liked to have had one last drink with him.  It's often that way with people you lose, especially people you don't see as much as you once did.  The last time I talked to Dan, it was over text messages.  We talked about the movie The Fifth Element, and how he'd nabbed a reproduction multi-pass on Amazon from that movie.  And he also offered to get tested to see if he could donate a kidney to me, as he knew I was back on dialysis and needed one.  That's the kind of friends I have made in this life.  Friends who have literally offered me kidneys - and followed up and tested to see if it's even possible.  How lucky am I?

Very lucky, I'd venture to say.  Godspeed Dan.  It's been three years and I miss the hell out of you, buddy.

Tuesday, March 8, 2022

This means everything

 Every weekday, I get to walk my daughter to the bus to school.  She's in Pre-K and attends the afternoon session, so just before noon every day, I get her ready for school.  We get her shoes on, find her jacket and bookbag, and get ready to go out.  The bus picks her up right at the end of our driveway, but I look forward to that short trek every day.  She didn't start out the year riding the bus; she was scared and shy, so for half the year, I drove her into school every day.  Then one day she came home, and said she was feeling brave and wanted to try riding the bus. She's been getting on ever since - it's been a real joy to watch her grow and do this.  We walk out to the bus; I hold her hand, and she usually hums or sings a little tune.  She loves her music.  We get to the end of the drive, and this is where I leave her to climb onto the stairs of the bus herself. But not without a big hug, every day, without fail. She throws her little arms around me - I kiss the top of her head and I tell her I love her and I hope she has a great day.  She climbs aboard, and the driver helps her to her seat.  She always asks me, "Make sure to wave to me!" as if I would ever forget to linger and not wave to my little girl.  I see her little head poke up from under the bus window and her hand waving vigorously as the buss turns the corner.  I always watch it go away and wave right back to her.  I love this routine - I'm only too aware of how fleeting this moment is.  In a blink to me, this will be gone, and she'll be scooting off to school by herself, absorbed in her own little life.  Years will go by in a flash to me, and she'll be so tall. There won't be the big hug in front of the bus, but I'll always remember. I am just so beyond thankful that I'm here for these moments now. I'm so thankful I get the opportunity to have these moments with my children.  Not everyone gets these blessings - and I know I've been through a lot, I have survived so much just to have such an amazing experience as this. It means everything to me.  It's why I've endured, it's why I've survived.  It's the reason why I've been through every rough hurdle I've had thrown at me, and it's because of the miracle of modern medicine and the tenacity and intelligence of doctors, nurses and many others that let me be here to feel this absolute magic and love in my heart.  I know this moment will end, but it'll live forever in my heart. And it's worth more than anything else I've ever had in this lifetime.

I watch the bus drive off, and I turn around to head back inside. It's cold out now, the wind whips at me, chilling me to the bone.  But somehow I am still warmer than I've ever been in my life.

Sunday, March 6, 2022

The Warmth of The Sun and of Friends Long Gone

 It was unseasonably warm today in Central New York.  Just five days ago, it was well below freezing, but today I saw my thermometer read 74 degrees F at one point.  So, being sunny and warm, I took a little drive out in the country, and listened to some music as some respectably loud volumes. This is a favorite passtime of mine; gives me space to clear my mind and relax a bit, and I always love the sights on some of these old country roads near me. But as I drove by one particular street, my brain wandered - down that street was the home a friend of mine.

He passed away almost two years ago now - cancer got ahold of him, and finally did him in.  Not without a fight from him, for sure. I always admired his struggle - he often talked with me about it, knowing my own struggles with in-center treatments, needles, medicines and doctor's visits.  But he always kept a positive air around him - it was inspiring.  He used to cook and bake a lot, and bring it to the nurses in the oncology center he went to.  Even on his days off.  He cared about the people who cared for him.  He was also an avid local music fan - often seen about town at the hippest gigs, camera in hand, snapping photos of the musical adventures of my peers.  I'd known him for a long time; he was the father of a friend of mine in high school.  He'd seen me grow up, from a bit of a punk to the paunchy, bald old man I'd become.  But he was always a big supporter of me in anything I did.  I always felt the love from him.

One of the last times I saw him, I was playing a gig with some friends of mine at a local bar.  They had a gig, and let me sit in for a few tunes, and they put out a collection jar to help me with the bills incoming from my dialysis treatments and other medical ailments.  There were a lot of folks there, but when I saw him, I lit up.  During a setbreak, I stepped outside to get some air and he was outside - gave me a big hug, and we talked about we were doing respectively.  He played off the worst of it, like usual. But he smiled and told me how great I was, and how he was happy to see me grow up to become who I was. I had to go back in, but he hugged me again and pressed his hand into mine.  Inside his hand was a paper bill.  

"This is for you. Spend it on something for you.  You deserve it."  I thanked him, and shoved it into my pocket to look at later.  I was just happy to see my friend.  The gig went on, we rocked into the night, and though I was exhausted by nights end, I was happy in the support I got and the music I played.  I packed up my stuff, helped the band pack up, and I rolled back home.  Later that night, before bed, I emptied my pockets, and found the now rumbled bill in my pocket.

A hundred dollar bill stared back at me, with "For Steve" written in Sharpie on it.  I'll never forget that - and I'll never forget him. That was Jack - he gave a lot of himself to other people.  I will miss his face when I go out and about, and when I drive past the street where he lived, I will always think of him. We should all be so lucky to have such friends in our lifetimes, and I often wonder how the hell I amassed so many wonderful friends in my time here.  People may be gone, but their warmth certainly lives on, for me, in simple memories.