The Adventures of Kidney Boy

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

Friday, 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.