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, November 17, 2022

Running Out of Time

 I am reaching the end of my time.

I feel it in me - and my lab work shows the same. This last transplant is giving out - it has been since it was implanted.  Sometimes transplants work out great, and other times - through no fault of the donor or recipient, it does not work out as you hope.  The kidney had issues shortly after I got it, and after several biopsies, they couldn't determine quite why, other than it seems the kidney had damage from the donor they did not detect.  But my time with this graft is nearing an end.  It's my third kidney transplant in 20 years - some people never get one, let alone me who was amazingly lucky enough to get three.  I might get relisted for another one, but I might not.  That's uncertain now; I need to be re-evaluated, and go through the whole process... again.  There's only so much a person can take - the thought of having to do it all again, all the tests, the waiting, the judgement... and then maybe waiting on a list, having to do dialysis again? And the rainbow at the end of that possible tunnel is ANOTHER major surgery on my abdomen - to be cut open again, have another organ implanted in me again, and hope that THIS ONE works for many years?

I don't know if I can do it. I just do not know.

I want to. I'm not ready to be done - I'm not ready to leave my kids, my family, my friends.  I've dealt with a lot of sadness, disappointment, pain, anguish, sorry and depression over the last few years, but - goddamit - I still want to be in this game.  Aside from my poor health, I feel like I have a lot more in me to offer this world, to the people in my life who rely on me.  I'm definitely beat down by all of this, and there are times when I want to scream.  I spend a lot of time alone when my children aren't here, and a lot of it, I sit in silent contemplation... trying to plan what moves I can make, what moves I want to make, and what moves I definitely cannot make. I'm sad, I'm cold, I'm lonely, I'm not in good health and I'm just not well, in general.  And I don't like to say that out loud or admit it - but I'm broken as hell right now, and nothing can really fix that.  There's nothing - there's no miracle big enough to occur to change or fix any of it.  People often have big dreams, dreams where everything is fixed... but, I don't dream that anymore.  At this point, I'd just like to survive and survive without being in a massive amount of pain.  Emotional and physical pain wrack me every day, and every day is a struggle just to make it from awakening to falling asleep.

I'm going back on dialysis.  I don't know when. But it's sooner than I like.  And I will most likely die on that machine this time.  So I'm just trying to think about how I want to spend my final time here - and I'm going to try and spend it positively. To engage in things I love and enjoy, and do the best I can, when I can. Days where I feel well enough to do so are few and far between, but I need to spend those days engaging in the things I enjoy the most about being alive. In spite of all the muck I wade in, I enjoy some things still very much. 

But, like so many suffering from chronic and fatal illnesses before me, I'm going to cry about for a moment about how unfair it is.  For a moment. I need to acknowledge that.  It's unfair. It sucks. It sucks for me, it's sucked for millions of others, but dammit, it sucks.  But I can't wallow in that - it's not a good way to spend time.  If you still read this blog - thank you.  Getting these thoughts out over the years has been special to me.  I've always enjoyed putting my thoughts to words - and in writing, giving them a physical form and shape.  Sharing my experience and having people who care about it has helped me immensely in the darker times, and right now is definitely one of those times.  At this point, I'm not looking for some light to save me.  I'm just looking to enjoy the spots of life on my trip down to the never-ending darkness, the trip we all take - but mine is coming sooner than I'd like. But I have survived longer than I thought I might.

Wednesday, October 19, 2022

All This Time

 I wrote a song once, when I was about 17 or 18.  Pretty sure it was just before my 18th birthday - I know I was a senior in high school, barrelling towards graduation, which seemed so daunting at the time. In your youth, you're kind of hurtled towards this goal - the end of high school, in which your adult life is supposed to start after.  When you get older, you realize it's just one step into a great big world that you never really ever complete growing in... but I was feeling the arrow of time at that tender young age, and feeling much older than I actually was.  The song was contemplative - written as someone looking back on their life, and things they hadn't done.  Thinking about how I was musing on that at 17/18 is amusing now, but the song had a lot of yearning in it.  I think once I started hurtling towards adulthood, I became obsessed with it.  Now, people might call it "FOMO"... fear of missing out.  I just wanted to live a life of quality.

So, I wrote this song 26 years ago, as a kid, and I found myself playing it again.  It is quite weird to be a person who has written things like songs, and had many decades pass since I did so.  But my fingers found the frets, and I found the words of a 17 year old boy who wanted more from life... I was a kid, writing as a sad old man, and it's so funny how now here I am, a sad old man, and it's like I wrote this song for the future me who needed the reminder that you can look back, yearn for more, but still miss things along the way.  I may have been a really stupid kid at times, but I think there was always a bit of wisdom lurking inside of me, and I've been fortunate enough to meet so many amazing people who added to my collective knowledge over the years. Life has given me many great teachers, and put great people in my path who have really given my life the gravitas and meaning I have always longed for. I am forever grateful to those who have shared their time with  me, and imparted their lessons, wisdom, wit and love. I hope I've managed to do that for some people along my way, too, because life is all about what you share with others you meet.

I think I'm going to record a version of this song again soon here - it's a time in my life where it probably fits me better.  But I'm lucky to have left gems like this in my past, I suppose.  Reminds me that I have lived a life less ordinary, and I am glad for it.

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.

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.

Sunday, February 27, 2022

The Relentless March of Very Normal Things

 Time passing is one of the only constants in life. It's something that is going to happen, no matter what.  You can't count on much, but you can count on time passing.  Which is why it amuses me that I, like many, am so affected when I think about where all the time went.  A friend of mine lost a pet recently; two of my friends, in fact. Their pets were similar in age, about 15 years old.  The thing is, I remember when they got these animals in their lives; I remember them as little ones like it was not so long ago.  It just blows my mind that 2007 was 15 years ago now - I remember those days far too well for them to have been that long ago.  I mean, 15 years was longer than my whole grade school career, which seemed to last a lifetime when I was in them.  Now, that same gulf of time seems like a blip.

But this is normal, inevitable.  And here I am, still riding in this ship, wondering what the hell I'm doing here anyway.  Don't we all wonder this, though.  Even those who I think are more self-assured than I are probably suffering from their own identity in time crisis. I hope that whatever time I have left here, I enjoy it at least.  I spent a lot of time growing older waiting for the good times to start, when often I was right in the middle of them.  Sometimes, this is as good as it gets and you should just have that next slice of pizza.

Tuesday, February 22, 2022


 Sometimes you get clear memories locked in the folds of your brain - moments where every detail, the time, day, place, etc. are indelibly etched upon the gray matter in your skull.  But other times, there are just... impressions? Like, in my random travels across the internet, I saw a picture of a vintage bottle of "Golden Griddle" pancake syrup - and suddenly, I had a flood of emotional memories hit me.  Nothing exactly specific, but I remember in my childhood, this was a brand of syrup my mother often bought, and whenever I see it - I remember mornings where she cooked me and my brothers breakfast - and that every prsent bottle of sweet stuff sat on the table.  She always seemed to have so much fun cooking up stacks of those pancakes for us - and, of course, the ever present favorite of us boys, bacon.  My younger brother and older brother used to have "competitions" to see who could have the last piece of bacon left at the end of the meal.  We'd be finishing up and my brother would proudly chomp his "last piece of bacon" that he saved, while we were all bereft of the deliciousness.... only to have my other brother pull out a small piece he hid under the edge of his plate, and smugly eat it.  We'd all giggle.  We still joke about this to this day when we all get together for a meal.  It's one of my favorite memories about my brothers. 

But it's amazing how a little thing like a bottle of syrup can bring back memories and emotions of happy, good times.  I am really thankful for those moments in my life, and for the fact that I can recall them all these years later and still smile.