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.

Sunday, October 31, 2021

Life as a collection of moments

 Trying to take stock of a life is a weird thing; you live every day, in and out, and then later on you reflect on that and what it has meant to lead you to the moment you find yourself in.  When I was younger, life seemed so much more vast, so much more infinite. In my twenties, I felt like so much time had already passed and I'd experienced so much, but I knew that there was so much more ahead.  It was an interesting place to look at life, and see what kind of plans you could make for the future. For me, I suppose the whole thing changed when I went from a care-free young person one day to a person with a deadly and chronic disease the next day.  (Of course, in reality, it didn't happen overnight - I'd been sick for ages but unaware. But in my young mind, it seemed almost instantaneous.)

So, I'm a contemplative type - I often think of where I have been, and how it has shaped my today.  Everything I love and enjoy is a result of my past experiences, so I often look to them when I am wondering where to go.  When I was young, I used to believe there was some kind of destination one was headed to; as I get older, I acknowledge what I'd always known but refused to believe in my foolish youth - there is no destination. There is no one right answer, there is no plateau to be reached.  Life changes, goals change, and you're there no matter what.  You either adapt or you languish.

But I still cherish life - and I realize it's been the moments that have made mine so special.  It was the right song on the radio, playing loud as I drove alone in a car at dawn, watching the sunrise crest over the horizon.  It was the quiet of the night as I sat in the woods, around a campfire with friends, yet feeling drawn away to a moment with myself.  It was the song I played in front of a crowd, feeling their love and energy for the music and their gentle encouragement of me as the musician.  It was someone holding my hand during a funeral. It was the sound of laughter echoing through my grandparents house on Christmas. It was holding my new born son, and staring in wonder at the new life I was suddenly tasked with.  It was the right song at the right moment.  It was the friend who wouldn't move. It was the rain falling softly and the right crackle of thunder. It's been so many moments. 

Life isn't great all the time. But remembering the good moments makes it bearable - and it provides the hope that there may be more yet before my time is done.

Wednesday, October 27, 2021


 I know people love the idea of merit, talent and skill winning people a positive place in life. I mean, we write stories praising such things, there are films where the central thesis is just that and there are songs meant to pump people up to this aspiration.

 But the way the world really works, like anything, is vastly different. People will often be judged and given place or position on something as mediocre and simple as looks.  "Pretty privilege" most certainly exists. And I think people that have been on both sides of that equation can both vouch for it, and say how heinous it is - but if they're on the positive side of pretty privilege now... they're going to ride that wave and say "fuck all y'all" to those in the position they were previously in.

Because as much as we like to extol the virtue of ones actions, heart and accomplishments - what is the one other hugest fiction trope we all LOVE to see in our entertainment? The glow up. People LOVE the makeovers.

We're an odd, interesting species. We extol certain things but absolutely work on another set of values. And this is never going to change.  So sometimes you have to carve out your own way with brute force if you just can't get better looking enough.  In the end, you gotta live with yourself, so do what you have to to feel happy. 

Tuesday, October 12, 2021

The World Is Changed

 It's hard to know what's just my perception and what is objective truth for all - but I definitely feel like the world is a much different place than it was just 5 years ago.  It just feels like the whole emotional and behavioral zeitgeist of the planet has shifted, and not for the better.

It's been a difficult time, especially in the last year and a half - almost two years.  But I feel more and more like people exist on the edge of a knife, and it takes a lot less of a spark to push people to act and behave more outrageously than they ever would normally.  I've seen people I would normally consider to be level headed with an even temperament just burst into rage and insanity... over essentially nothing.

People are primed to fight. And it's not good at all.  There also seems to be the opposite movement - where people are saying "Be Kind" but it really feels more like slacktivism... people espouse this philosophy but don't practice it.  They just say it, as if they will alleviate the greater symptoms.  And the apathy, in turn, worsens the overall mood even more.

It's a terrible cycle now, and I have no answers, for sure. But I do know that real change starts small - it starts personally and moves out. And often, there's no immediate reward.  We're a people of instant gratification - and this impatience doesn't breed anything good.  We need a little more action for the better and less chatter about it. Myself included. I do hope we can right the ship towards a better equilibrium.  There just needs to be more balance in the world, for people at large.  I hope it's coming for us all.

Monday, October 11, 2021

The Adventures I Didn't Have

 I think most people can relate to the sentiment in the title of this piece.

The Adventures I Didn't Have.

I mean, most people look back on the things "they didn't do".  It's only natural.  Would have, should have, could have's are integral to the human experience.  I try not to dwell on them too much - I had a lot of potential roads not taken, but I always remind myself I wouldn't be where I am today without the paths I took.

This assessment used to be easier to appreciate and like, because at one time I was very happy and content with where my life was. It's harder for me now, because in 100% honesty, I do not like where my life is now.  Currently - I do not enjoy being alive.  I just don't.  It's a difficult time for me, and it has slowly gotten worse over a five year period.  I had to watch every potential nightmare I ever had come true in real time as I stood by, helpless to do anything, and I had to watch it happen to me.  The things that have happened to me in the last five years - this is the kind of stuff that people wake up in a cold sweat from dreaming/thinking about.  I have endured and survived so many possible nightmares.  But, it has left me in a spot, bereft of much happiness and joy. I am not happy with myself, nor my situation.  I exist, I suppose, but it's a life full of pain, disappointment, exhaustion and dehumanization.  

I am lucky, because I do have a spot of true joy and happiness in my life - my children.  I love them so much.  They have given me purpose in life when everything else seems to abandon me.  And I know it's because of their love for me and my love for them that I will get by.  I can learn to live with the pain and the sickness, just because I'm their Dad. This wasn't how I had hoped my life would go, but I have to look at it as The Adventure I Didn't Pick.  And sometimes the adventures you didn't choose but find yourself on are the most rewarding.  So, yeah, at times, I may see reminders of places and things I didn't do - or things I planned on doing in that proverbial future that I no longer have the chance to - I am hoping that with enough time and love, I can heal somewhat.  I often feel bad, because it's a slow process.  I'm trying to live a life while I'm trying to heal my body and mind, and neither one will ever truly be healed. 

But, if I can say one thing - If you ever put off even that simple little thing, like a trip to somewhere just a half hour from home - don't.  Just do it. The risk always lives.  And all we have in life are moments - wonderful, beautiful little moments.  Sometimes alone, sometimes together.  But if you can, indulge yourself and find that moment.

Saturday, October 2, 2021


 One night when I was five years old, my father came home from work with a strange bundle in his arms.  He had a smile the size of the Mississippi River on his face and his eyes were alight. He called out, "Hey! Look what I have!" My brothers and I peered into the bundle, and staring back at us was the cutest, littlest runty puppy I have ever seen.  As little kids are wont to do in excitement, we squealed with delight, and the little puppy opened it's eyes, yawned and it's little pink tongue came rolling out.  This was our introduction to Taffy.

Taffy was a mutt... my father had bought her off the back of a truck from some teenage girls who needed gas money.  Their dog just had puppies, so they were selling these mixed breed pups cheap.  The dog became a great source of joy for our family, and was part of the living heart that drove us for many years.  She fiercely loved our family - and was notoriously good about staying in our yard, even though it lacked a fence.  When we moved to our new house, she was about two years old but she seemingly instinctively knew the borders of our yard.  She refused to leave it, even if we called her when we were across the street at the neighbors.  She knew that where she was was her yard, and she went no further.  That is until the day we lined up at the end of our street to wait for the school bus.  My mother looked back - there was Taffy, at the edge of our yard, laying down on her paws, longingly watching us.  My mother went back to fussing with us while we waited for the bus, but when she looked back, she saw Taffy edging slowly forward on her paws and knees towards us.  Mom shot a glaring look back, and caught, Taffy walked back to the edge of the yard, and dejectedly sat down again. And the cycle repeated.  It went on this way every morning til we reached Jr. High and walked to school every day.

She went everywhere with us - on camping trips in our pop up camper, to visits with my Dad's folks at their camp on DeRuyter Lake. At the lake, Taffy - part collie and part shepard, would always find some nasty dead fish to roll in.  She'd run up to us, excited, to say "LOOK AT THIS SMELL I FOUND" which we, of course, found repulsive and she'd look at my parents, ears folded back in sadness and shame as they sprayed her with a hose and used shampoo to try and wash it out... but we loved that dog. I had a lot of moments in my childhood, where I was sad or dejected - Taffy knew, and would seek me out, nuzzle her way under my arm, and try to soothe me (and make me pet her. It was symbiotic!)  But I loved that dog in my life growing up.  She was always the love and friend I needed, and always there in times of need.

In my 16th year, that Summer, I noticed her acting different.  Tired. Lethargic.  Not herself.  The day she stopped barking at the doorbell when it rang - I knew something was up.  I took out my video camera, and shot footage of her.  Something inside told me too, and I spoke gently to her and pet her as I shot footage.  She refused food and water.  My soul knew before my brain, and my father and mother wrapped her in a blanket for the evening.  She stayed in the kitchen.  My older brother came home to pet her, and talk to her.  My younger brother held her, pet her and told her how much he loved her.  We knew we were telling her goodbye.  I went to bed that night, and a few hours later, Taffy walked into my room with a vibrance she didn't have earlier.  I woke up from my sleep to see, her, and she came to my bed side and put her snout in my hand.  I said, "Oh, girl, you're feeling better!" hopefully.  But I pet her head gently, and she licked my hand for what seemed like forever.  I looked her in the eyes and told her I loved her.  She turned from me, and I saw her try to scratch open the door to my brother's room. I fell back asleep.

When I woke in the morning, she was gone.  Her body was on the blanket in the kitchen.  My father and mother had tears in their eyes.  I gave her body one last pet, and told her she was a good girl.  My father buried her later that day.

That was 27 years ago. And I still mourn her. The whole family does. We still talk about her - a true member of our family in our formative years.  The dog taught me so much about love, loyalty and selflessness.  And a little about mischief. But here I am, years later, just remembering the love that creature had for me.  The love she had for her family.

Sometimes beautiful things come into your life for a short time.  It seems like forever when you're in them, but you look back and realize it was a small slice of your life.  But the marks they leave in your life, and the impact they make on your soul live on forever.  Not a day goes by that I don't think of that dog and not a day goes by that I don't miss her.  We were so lucky to have her.  Sometimes we're so lucky to have wonderful things, and we only realize the true lasting impacts until much later when they're gone.  But you remember that you are just lucky enough to have experienced it.

He spoke with tears of fifteen years how his dog and him
Traveled about
The dog up and died
He up and died
After twenty years he still grieves

- Mr. Bojangles, The Nitty Gritty Dirt Band