On writing

 I've been maintaining a blog of some sort for almost 20 years now.  This current one I've had for a long time.  I've always enjoyed writing - putting my thoughts out on a page, and trying to organize them into something that is mildly readable and somewhat enjoyable - all while pertaining to something. A subject which I might have some insight on.  When I was younger, I had the hubris of thinking anything I thought mattered - the older I get, the more it becomes clear to me that I don't know shit about shit, and that I am pretty much qualified to write about nothing! But I do it anyway - this blog has mainly been about me living with End Stage Renal Disease - how dialysis, transplants and the disease dovetail with the human experience.  At the core of it all, I am just an exceedingly typical and average person trying to live a painfully normal and average life.  It does not always work out that way, but that's honestly what I strive for. So that's what I write about.

I often see the amount of projects other writers participate in, and their prodigious output of writing - be it essays, non-fiction, fiction... anything, and I often wonder how people have that much to say.  I just feel like I do not have much to say any more.  Anything that's really worth anything.  I've had a lot of my passion and confidence sucked out of my soul over the past few years, and I am oddly okay with that at this point in time. I've just come to accept that my enthusiasm and interest in living and doing things really meant jack shit in my life. That and a bag of chips just got me an empty wrapper. I don't know if I will ever rediscover that feeling - the need and want to create. I had a big dose of that for most of my life. But it's just gone right now, and honestly, I feel like I'll be dead before it ever comes along again.  Which is okay, really - most people never even feel the spark like I did.  I was happy for a lot of years, and even though success didn't follow in the way I'd hoped - I am successful in that I did a great many things I always wanted to and never thought I would.  I did not make much money along the way, but I did genuinely garner a lot of friendships.  Those are really worth something in the end.  I always just feel like I am a lodestone as a friend - always in need, and always taking.  When I have the opportunity to give, I try to do it as much and as often as I can... I owe so much to so many people. And I'm not just talking monetary means - people have gifted me their time. Their love. Their souls.  I try my best to give it all back when I can, but I know some friends get neglected.  There are people I have lost along the way, and it hurts when I think of them.  I have never forgotten them, but alas, my time and priorities were relegated elsewhere and my relationships suffered. My resources are limited, ever so much more than people might realize.  When I say I'm tired... I'm tired. My tired is probably more exhausted than most normal people could ever comprehend. And I am this way ALL the time. And it gets worse every year.

I just got more labs drawn yesterday, and results.  It does not look good for this kidney.  There was damage to it from the donor, damage that wasn't seen until it was in me. My function is terrible. My GFR is awful. I am severely anemic.  Transplants are not guaranteed to work - and sometimes there are complications beyond your control or fault.  I do not know how long this will last. I do not think it will improve or get better - I'm being optimistic when I say I do not think. Because it will not get better. There's no way this organ regenerates or repairs itself. It's only destined to fall apart.  And this is my third one. I do not think I will be able to get another one.  Though the record is something like 7 transplants.  I just don't think that's in my cards. And I don't know how long I'll survive on dialysis if I have to go back. If it was just me in this, I'd be more okay.  I'm tired. I've been fighting this for 18 years. I've lived a good life. I've done a lot of great things.  If this is my last stand, I'd be okay with it. But I am not alone. I have two little people in my life now who rely on me so much. And I rely on them - I'd be lost without my kids.  So, yeah, I don't wanna go and leave them just yet.  That hurts. The thought of them having to endure my death hurts more than anything I've ever experienced.  I hate that this is most likely something I am going to leave them with. No matter when I pass...  so I try not to think about it too much.  But I just don't know about my future.  I put them on a school bus for the first time ever next week.  I am glad I made it here.  I hope I can go a little further.

Nanny Chicken

 My great grandmother was alive for most of my life - which was a pretty amazing gift. I came to appreciate it much more as I aged and realized not everyone had that. And not only did I have her in my life - she was just amazingly awesome.  She loved all of us great-grandkids too; there were a lot of us!! My mother was one of nine kids... so she already had nine grandchildren... and then came to have 20+ great-grandchildren... and she always was there for us. My mom would take us over to her house, a really cool little ranch with a neat garden out back, a walnut tree... a candy dish full of Brach's mixed candy for us to have whenever we wanted, and a basement full of books.  Just thinking about it all as I write makes me smile.  I miss her very much, especially as I've aged and had children of my own. But I am so happy for the long life she lived.

At family gatherings, she used to make trays full of what came to be known as "Nanny Chicken". Now the actual secrets of preparation are secret, but in my own estimation, it's basically "Shake n' Bake" with a few twists. Whatever the case, it was always delicious - and a hit at our large get togethers! What I love is that now she's gone, my Mom and her sisters will make it for family gatherings now.  It's referred to as "Nanny Chicken" and every time we have it... the taste reminds me of her, and all the great things she brought into our lives. This kind of silly thing is how people live on - and, let's be real - food is love.  I love that in this small way, we keep her close during important family times. I love that I have the honor of this in my life... that I get to be a part of something that celebrates someone like that.  The old matriarch of our family. These are the things that really matter in life - and not everyone is gifted with them. I was just very, very lucky to be born into what I was, and I remind myself of that on the harder days, when I start to feel like life's been unfair to me. I have had to deal with a lot over the years - but now more than ever I realize it's the idea and celebration of things like "Nanny Chicken" that have carried me through the tough times.  That's love.  That's real. That is what the fight is all about. That is what the struggle to survive in the face of doom is about. 

Course, I love the esoteric idea behind it all, but right now... I want a plateful of Nanny Chicken all the same.  Cause that stuff was delicious.

It's almost always the lonliest at 2:30 AM

 Middle of the night. I'm.... not sleeping. Of course. I fell asleep on the couch for a half hour earlier, so for some reason now, I'm awake. And alone. I have the snoring of my beloved Boston Terrier to keep me company, but other than that - it's me. Alone. With all these thoughts in my head.  My head feels like it's 6 miles across in times like this. I didn't know I could have this many thoughts.

But here I am. Awake. Forty-Three years old, at 2:30 AM on a Sunday Night in my empty house. My kids will be here in about four hours. I should sleep. But I'm lost in my thoughts. And of course, I'm lost in my loneliness.  Truth is, I could be in a room filled with people, and I'd still be lonely.  It's always lonely in my head, and honestly, there's where I exist. At least for me. I can see why some people develop soliocism. But I know the world and people exist outside of me.  But me... truly me, just me, exists in this ole noggin and I have to live with that.  It's a weird mixture of extreme happiness, joy, excitement and passion - and crushing lonlieness, sadness and regret. Both in large waves. Sometimes I think I like to sleep so much just so I don't have to be conscious with my own thoughts. Sure, I'll have weird dreams. But I can kind of ride those out.  Here, I have to live with every dripping second of what now feels like - and in full transparency, I do not like how now feels.  I am not happy to be alive right now.  I am not.  I hope I can ride this portion of my life out and find a new, better place inside me somewhere. Because right now, it hurts to exist, and while I am exceedingly good at living with and dealing with pain, I am tired of it and I hope a positive change is coming.  I have people depending on me, and I want to be there for them.

What you build, what you keep and what you lose.

 I used to think I had life figured out.

Not in any larger, esoteric sense of the word - I'm just as lost on the big questions as the next self-aware thinking bag of flesh and meat.  No, I thought I had the idea of living figured out. You figured out what you wanted, what you could get, what you aspired to and what you wished for - then you found a middle path where you were content with what you had and you'd still spend some effort to "build" more of that life you wanted.

It's a house of cards, though.  So many variables. Who you trust in. Who trusts in you. Decisions you make that seem innocuous at the time end up defining the course of your life.

I've sort of found myself at the bottom again. I spent years trying to build... something. Now... I'm okay with just surviving, and doing the things I enjoy. The only thing I want to build now is a good life for my children - in the end, right now... I've got all I want.  Sure, there may be moments where I want a stupid thing or two - mostly guitars and other nonsense knick knacks... but the big things I have covered. I have a home. I have transportation. I don't need flashy versions of those, nor do I want them. 

I just want to build stability for my kids - and for them to always know they're loved and they have a home. That's it.  I don't really care about me - I've... been there, done that.  I don't want any more. The only thing I want is something I can't buy or get - more time and perfect health.  There's a timer on me and I cannot stop it, and it gets worse as every year passes.  I just... I just want to live to see them into young adulthood.  That's my big secret goal inside my soul. I just want to live long enough to be there for them as they grow up, go to school, learn about life. I would be sad to leave them as young adults, but I would spend my time trying to make sure that they always carried a piece of me and my love for them with them as they grow. And maybe if someday they end up finding the love of their life, get married, and have kids... they can tell their children about their Grandpa Steve they never met. And get told they remind others of me.  That's all I got to build. You can take your pyramid schemes, your 80 work works to break your back for someone richer than you, you can take it all... I just want my children to be happy and remain the amazing people that they are.  I want to have a place in the far firmament of my family, so one day people can look back fondly on me.  And remember my good qualities more than my misgivings.  That's it. From here on out, I'm just trying to last longer than I think I can.  It's been almost 20 years of living with this.  My body is giving out and my soul is tired.

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.

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.

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.

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.

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.

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.