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, June 11, 2021

From the back of the room

 From the back of the room, a voice is yelling.  It seems like it might be yelling at me, but I really don't think so. I probably just think too highly of myself and I believe every action happening in a space where I am is about me. But the yelling continues.  I'm only like 20 feet away from the source, but I can't see who or what it is; it's like the room is out of focus.  Like I'm in a film, and the focus puller has made me clear in the foreground, but given the background a hazy, out of focus space to exist.

I don't even know what I'm doing here, I think.

I'm sitting in an old school desk chair - like the ones I knew growing up.  A chair with a little "desk" coming off the side and around to the front.  Why I'm sitting in one, I don't know. I haven't been to school in years.  Why does this feel like a classroom? And if it's a class... where's the teacher?

I don't have time to answer these questions, because the shouting suddenly becomes clearer and in focus to my auditory organs and I realize some one is shouting to me about... something I'm doing wrong, or did wrong.  I dunno, I don't speak the language they're using.  It's beautiful and melodious but something sinister hovers just below the surface with it.  I decide to ignore it.

Of course, I realize as the impossibly lit and pristine room comes into focus, I am dreaming.  What of again? I don't know.  Who cares. What does it matter? It's just my subconscious grabbing onto pieces of my shattered mind and thoughts.  It's trying to arrange these strange pieces into something that makes sense, but what my subconscious often forgets is that my thoughts have always been disjointed, disorganized and ultimately useless.

I don't care. I'm in a white classroom,  no teacher, faceless students all around except for on in the bag, playing hockey with my collective good memories and convincing me that they were terrible.  So I live the dream until I wake, unsettled and with the emotions and memories I saved from the recesses of my brain.

None of it matters.  Does it even matter when I wake up? Is this consciousness just a dream reality for someone else? Or a simulation... or a game?  I don't know.  All I know is that if this is a miracle cosmic experience, my trip around has been an interesting one.  I wonder how this path was chosen for me.  And for why?  I don't even really care. I'm just riding this one til it's done. Maybe then I'll sleep without these foolish and useless dreams.


Thursday, May 20, 2021

Screaming into the void... again.

 Writing a blog is very often for the author more than anyone else. I mean, I know this has been great for me over the years. I love to write, I like to try and capture my thoughts as I go through this life.  But I have to temper all my thoughts and opinions with the fact that no one really gives a shit what I think.  And, I mean, with good reason.  I'm okay with that - I like to think my experiences have shaped my opinions and that I have been through some unique situations, but ultimately... what I think doesn't matter. I'm always amazed at things I see on the net - mostly social media comments and such.  People offering unwanted opinions on things as if anyone gives a rats-ass what Johnny Nobody thinks.  There's a lot of overinflated egos and self importance out there.  I definitely used to be more like that - I'm fervent in my opinions on pop culture, books, music, film, etc.  Once upon a time, I probably thought my opinons on things actually mattered.  Either foolish youth or optimism. I can look back now and say... it doesn't matter.  None of it mattered.

None of it mattered to other people.

But... it matters to me.  So I write. I express. I shout into the void with my voice... sometimes in a song, or sometimes in the written word.  Because I need to express it, if only for myself. It's a validation of my humanity and the recognition of my soul in this mortal experience.  I'm no mover and shaker, or taste maker... and that's okay.  But, I care about what I think. Because when I stop caring, I've stopped thinking and if I've stopped thinking... what's the point in life?

So many people out there cope with the existential dilemma in different ways.  Some just live with it.  Others indulge in anything to take their mind off it... sex, drugs, alcohol, food.. many things.  And it's interesting how we can betray our own heart or moral compass when we're just trying to escape that feeling of staring into the void and having it stare back at you. It's a lot.

I don't know who the hell even reads this anymore. If you do, I hope you enjoy it. It's just my own personal contribution to the void, in the hopes that maybe I can fill in the spaces in my own soul enough to be brave and stare into the void and say "Ok."  That long lonely hallway stares at me everyday as I regain consciousness and try to do my best in this world for the people who count on me.  So, I guess, this blog is just one exercise of me standing on the precipice of time itself and screaming into the void. 

I'm not gonna quote Nietzsche here, but if you've a modicum of classical education, I know your ass is thinking about abysses gazing into you. Nerd.

Saturday, May 15, 2021

One Year



One year ago today, my wife came home from work early and said,”I can’t do this anymore.” and took the kids, left our home and went to live with her parents. I do not think I have experienced more profound loss nor greater pain in my life before or since. And I’ve had three kidney transplants and many various surgeries that would kill some people.

But the pain in my heart, soul and mind are unrecoverable. I put my all into us and what we had. I was always scared to love, to trust - because I knew it would inevitably end the way it did. I am irreversibly broken and though I will never be complete again, I continue on. For my kids - they love me so, and I them. Honestly, as cliche as it sounds, they’re the only reason I’m here. They really seem to adore me and I hate to put any sadness into their life by not being here.

And I miraculously got another kidney transplant after not faring well on dialysis- yet it felt so hollow. All I wanted was a transplant so I could do better for my family - and for my wife. I never met another human being I adored as much as I did her, and to watch her disconnect from me and leave me was much like watching my kidney slowly fail over years and leave me. Heartbroken feels like to easy a word to describe how I feel. Language is all about communication but I don’t think even after a year I have written enough words to express my sorrow. I can’t even find the right music to express it. I play every day but nothing quite captures it fir me. I’ve written many songs but they are not quite there, for me. Hopefully they connect with others and bring some solace to them someday when I record them.

But another year - they say it gets easier. It doesn’t. You just get more adept at dealing with it and existing through the pain in your life. But deep in the night when I cannot sleep, it finds me and reminds me of the depths of my unhappiness. I do not see a good or happy future for me for the rest of my days. Which I am sure are much more limited than others. If I could survive 15 more years, for Jack and Josephine to grow into young adults, I will be happy.

I put all my love and faith into one basket that was irrevocably destroyed. Such is the risk you take with love. And in spite of the end, like a fool, I would not change a thing. What I had for those years was worth the fall. I’d do it again and again, like a fool, for the risk always lives. To live... would be an awfully big adventure.

Tuesday, April 27, 2021

I Don't Know How Some People Do It

 I really don't know how some people just... talk, all the time, to others.  About nothing.  Like, I see people texting - constantly.  And I often wonder what kind of bullshit they're sending to each other. I just don't text that much or often, and find it kind of useless other than sending pertinent information.

But people use it to communicate these days - to live, work, flirt... it's weird.  And I've always been a tech guy and I've been internet chatting since my modem days in the late 80s. But... I don't know. Maybe I'm just old and have run out of things to say.  Or that I'm just not as into bullshitting small talk as I was when I was younger.

I've been through too much shit to do that dance. Finding myself unexpectedly single now at 43... and seeing a lot of my peers experiencing the same thing, I am noticing this odd regressive trend where these people are acting like they did when they were in their 20s.  And it's lame.  If this is how the world at large is working right now, I'd rather be single than have to mess with things like Tinder, Bumble, Hinge, Snapchat, etc. The inane amounts of texting along nauseate me. People nauseate me lately. I don't have much patience or love for some things these days, and that upsets me. I think when dealing with a swirl of emotions, you'll always have periods of different prominent feelings - and right now, anger is very easy with me.  Not on a small, interpersonal level - the people in my life day-to-day are wonderful.  But my anger at a larger sense of life... well, it looms large on me right now.  I'm trying to channel that into positive energies for me - I've been working out more, to strengthen my body again and channel the energy produced by my anger into something that works for me. I have to remember to breathe, and feel my thoughts in the breathe.  And try not to worry so much about others and worry about myself.  But it is remarkably hard when I have to live in this society now, and things happen in my life beyond my wishes or choices.

Basically, I'm sick of your shit. So, I'm going to recover, I'm going to come back stronger in life, and I will do better for myself than I did before.

Sunday, April 11, 2021

This is the time to remember

 Once upon a time, when I was young and much more carefree than now, I stole off to the north with a girl I was seeing.  In the middle of the night, we drove up to an old shack she knew on Lake Ontario - it was right on a sandy beach, and a perfect spot.  It was a warm night, and the wind blew melodiously through the tall grass that surrounded the other cottages and shacks on that dark little side rode we turned down.  We found the cabin, parked, and ventured up to it, and then beyond - to the beach, and the lake.

I don't know if you've ever been to one of the Great Lakes, but their nomer is not undeserved. It's almost like being at the ocean. A million stars shone down on us on that clear night, and the moon hung in the sky, silver and perfect. And I loved this girl so much, I didn't know what to do with it. I'd never quite felt that way before in my life, and in a time so perfect, I was just happy to be alive.  We gathered up some dried driftwood and assembled it in a pile on the beach, just beyond the reach of the waves that lapped up gently onto the soft sand. I had a funny habit of saving all of my recipiets from purchases in my wallet; it looked like an overstuffed sausage, just full of tiny little papers.  But I took those pieces out and I used them as kindling to start the fire.  They caught quickly, and caught the dry driftwood easily.  In a little shallow pit dug on the beach, we had a fire, we sat together, under the moon, and enjoyed each others company.  It was long ago, but I can still see the stars reflected in her eyes, and the way the light from the fire danced on her face.  I'm so glad for that moment. Not everyone gets to experience moments like this - beautiful, perfect, lovely, romantic. Almost like a storybook.  But there I was, in love and loved back and it was all so simple. We stayed on the beach for a few hours before we put out the fire, climbed back into the car, turned on the radio and sang along with every song as we drove home.

I couldn't buy that moment. Even if I tried; I was too poor and too young then.  But I know I still couldn't buy it again now. Nor ever experience anything quite like that again.  Some moments are just meant to happen and only live in your mind forever. Cause the world changes, circumstances change, life changes, you change... but in all those changes, nothing can take that away from me.  It's mine forever, and I was just lucky enough to be there for that moment.

Thursday, April 8, 2021

Enjoy the Moment

 A few years back, I used to often drive past an old wooden power-line pole - at the top, an Osprey had built a fantastically large nest.  It really was a sight to behold.  I'd drive past, and sometimes I'd get a glimpse of the magnificent bird that lived inside.  It was obviously built to house the eggs that the female would lay, and watching the Ospreys guard and nurture what was inside was quite a thing to behold.  At the end of the day, with the sun setting behind it, I'd ponder the nature of their life together - and just how magnificent it was in that moment.  Hunting, fishing, protecting the young.  All in a large, intricately gathered nest, built by their own work and ingenuity.  I loved driving by that nest.  The summer ended, and fall came - the nest was still perched up there.  Winter came, and I didn't drive by that spot.  And when spring came, and we ventured out again - the nest, in all it's splendid glory, was gone.  Winter had knocked it down, and the Osprey and offspring had long since moved on.

At the time, I mused on how sad it was - but lately I've been amending my thoughts on it.  Sometimes something is amazing - beautiful to behold and wonderful to live in for a while.  But it has its season, and things are abandoned and destroyed but life moves on. And that's just the way it is sometimes.  We as humans have a tendency to grab on to things, and do our best to try and make them last forever - or at least as long as we can.  Some things last longer than others - but, as I'm often reminded by the eminently quotable Robert Frost, "nothing gold can stay."  My own life has had its moments of shining brilliance - and some have ended.  But I remain, and I can go forth and try to find new moments in the future - and it's okay if they never match the splendor I once had.  For at least I had them once, and it was precious and it was good.

Wednesday, February 24, 2021

Everybody is experiencing trauma right now.

 There's no mistake about it: everyone is experiencing trauma right now. This pandemic has been.... insane.  It has upended every aspect of modern life - and revealed a lot of ugly truths in people's personal lives but also many ugly truths about the society we live in. Like...a  lot of ugly truths. There is a lot of anguish, suffering and disparity now.

How people are coping is something else too. Some people become introspective. Head down and just try to deal best they can. Others... well, they're pretending nothing is wrong. Indulging in things maybe they shouldn't.... coping is such a weird thing.  And I know a lot of us are doing it.

I hope society can do better after this.  There's a lot of sadness, anger and disparity.

Wednesday, January 13, 2021

Perception and Reality.

 I can't read minds. I can only go by what I see, and sometimes, what I feel.  But often people can have a totally different view of you than you think they do - especially if communication between the two of you is lacking.

Life is funny. It can sadden and humble you pretty fast and quick.  I know I have to change a lot of things about myself - and I'm working on it.  I always thought at heart I was a pretty decent person. Not perfect, but a person who was trying to be better.  We all could use a little more work, though, couldn't we?

I don't know if I will ever quite trust people fully again.  And, honestly, at this point in my life I don't care. I don't need to trust anyone else ever again.  I just need to do the best I can for me and my kids.

Monday, January 11, 2021

Memories of Vacations Past

 I saw an old picture from the first time I ever visited Orlando, FL and went to Walt Disney World. The time stamp on the photo reminded me that it was six years ago today. I can't believe that much time has flown by. That was a very special trip for me. We'd always wanted to go; a few years before, when I was on dialysis, my wife set up a trip for us that fell through.  So actually going on a vacation somewhere was really special for us.

I am flooded with memories and emotions about that trip, and the ensuing months. It was a very special time in my life, filled with a lot of joy, happiness, excitement... and love. 2020 being the year of covid for the world meant no vacations for anyone. I really need a get away. It's been a tough time.  Just want to go somewhere warm, relax and maybe find some happiness inside me again.

Wednesday, January 6, 2021

Fourteen Footsteps

 I walk down the hallway and take a left into the kids room; it looks decidedly different than five years ago we we eagerly redecorated it with carefully chosen art and paint for the walls.  The crib was on the right; it was waiting to hold our little boy who was to arrive in December (and arrive he did!).  And when we found out we were having a girl who'd arrive 16 months after her brother, we painted two walls pink, and put up the very carefully curated art for her arrival.  My wife was really into finding the right prints to hang on the wall. She got several which I am still very much in love with.  One still hangs on the wall - the rest are gone now, hanging on the wall in my children's bedroom over at their Mother's.  The room is different now; I got the kids some bunk beds earlier this year - made by a local guy out of some huge pieces of wood.  It's nice, and sits in one corner.  It's amazing how quickly the crib, diaper and bottle stages passed. My kids are walking, talking little people now. And it's bedtime tonight; we go in their room, and I get their pajamas ready.  

My daughter is insistent on putting on her own PJs.  She's three; she'll be four in a few months.  My son is five, and entirely capable of putting on his own PJs, but never turns down my help in putting them on.  This secretly makes me happy - I like to feel I'm still useful that way to him.  He probably never thinks about it, but I've been dressing him since the day he was born.  My wife picked out a lot of the kids clothes; she's good at that. Even when they were little, she used her keen eye and fashion sense to make even the most mundane kids clothes feel nice.  That was special. I don't know if I ever told her that or how much I appreciated that. I feel like I did, but who knows. I don't know much about what I did right or wrong any more anyway.  But the kids are in their PJs, I've gotten them water for bed, and given them their "bedtime medicine" (melotonin gummies) My son asks for a bedtime story, so I improvise a little story about him and his sister vising some dinosaurs.  They get a kick out it. I do funny voices for a T-Rex and I curl my arms up really small to imitate the T-Rex's tiny flailing upper appendages.  They giggle.  I give them hugs and kisses, tuck them in, turn on the star night light, and close the door.

I walk back down the hall - dark, cold, alone.  I used to like doing this as a family - once upon a time, it went that way with all four of us.  Now that their mother and I are separated, it's just me and I'm trying to do the best job I can - to send them off to sleep, warm, comfortable, safe and loved.  And they don't know how much I'm hurting inside the whole time - how I feel like half a person, and how this isn't the life I wished for when I became a parent.  But these things happen, and we have to proceed the best we can.  When I have the kids, we facetime their mother before bed, and they say their goodnights.  When she has them, she facetimes me and I say goodnight to the kids. At least we have this in  our modern world.  But for me, personally, for my end of it - I always loved when we carefully shut the door behind us, and walked down the hall to go relax and sit in the family room. Usually let the day kind of slough off us - watch some Netflix or whatever, chit chat. Mostly as we walked down the hall, I'd reflect on how lucky I was and how much I loved those little kids, and her for making them possible.  So, yeah, now that walk is so lonely. I never realized how 14 steps could just been the loneliest footsteps anyone could take and that your heart would break a million times over with each one.  But here I am. Learning yet another lesson in life - I'm glad to learn, adapt and get better, but I wish this one didn't hurt so fucking bad.