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.

Tuesday, December 12, 2023

The Arrows of Time

 I'm 45 years old this year.  It looks like a daunting number when I stare at it; it's even more daunting when I think about the fact that I've spent nearly 21 years of my life living with End Stage Renal Disease.  Almost my entire adult life - and the fact that I was diagnosed with this disease at a time when I was trying to build the foundations of my life, and find my way... it's made it incredibly difficult.  I thought I was building my future for many years, and I started my own business and was supported by my family.  But it was difficult to do that while navigating this disease, and even more difficult when my transplant failed and I went back on dialysis, and a few years later when my marriage ended.

I got a third transplant in 2020, and I had a lot of hope riding on that - that I could rebuild my life again with that, post marriage, and get back on track again. But that transplant ended up being more trouble - as it began having troubles almost immediately after getting it.  I spent almost three years watching it slowly fail... it's hard to build your life and career when you're sick all the time.  So here I sit, 45, on dialysis again, trying hard to make sense of my life and how I'll take care of myself and my family.  I just feel like I'm starting over... again, and I don't really know if I will make it this time.  It's a scary thought.  I'm trying to deal with it the best I can, but it's hard.

I struggle everyday to be a good father to my kids, and I think that's the most important thing to me.  But it's hard now - making a living to provide for them, while have limited physical and mental resources due to my illness... ugh.  Such a struggle.  I'm trying.  It's hard for me to admit these fears, bit I think writing them out like this helps.  I don't even know if anyone reads this stuff, but the words help me.  Words have always helped me - I've enjoyed writing all my life and I think it's nice when anyone reads the things I think.  Sometimes what I say isn't always what I write either; perhaps I'm more confessional in the printed word.  I'm scared - I'm scared I didn't make the mark in life I wanted, I'm scared my time is up, and I'm scared I'll leave my kids with just legacy of sadness.  I hope I have more years with them.

Tomorrow is my son's 8th birthday. I cannot believe it's been eight years since he came into my life and changed it forever.  I know so many parents say things like this, but this is my truth. I didn't know if I could ever have kids, and to have one, let alone two, has been nothing but a miracle and they literally both showed me something I didn't really know I needed or wanted.  Being a father has been my favorite experience in this whole shebang - and I've done a lot of stuff! But their presence in my world has enchanted me in ways that everything else just did not - and I'm addicted to that feeling.  And now I'm in the worst way I've ever been - death is such a real possibility for me in a way I've never been afraid of before; I want to be here for them.  I don't want to miss a thing.  We don't often confront these things as we go on our business day to day, but it's all I think of when I wake and when I lay myself down alone at night to sleep. How am I so old, yet so young to be sad at a possible early exit?

I do hope I can get another transplant.  Or maybe that robotic kidney they've been working on for decades will actually work.  Sigh.  Also, I could use a win on the lotto.  Couldn't we all though.

Hope the season finds you well, if you're reading this.  Take care.