Circling the Drain

 Lately I've begun to feel like I am circling the drain.  The end has always loomed over me large the last 22 years but more and more I get this awful sense that my time is nigh.  I hate it. I'm not ready.  I have more to do, and I need to be here for my kids.  But I'm in so much pain every day. It's becoming harder to function. All my creativity is sapped. I feel like i have no more stories to tell. My can't play my guitar. There's only pain.  My body is wracked with it. Chronic pain is consuming and it's biting the last bits off now.  I only feel semi normal when I take pain medication, and I don't like to do that.  It's becoming almost untenable.  I hope I can fight through this and pull myself up again, but... I dunno.  It's been a long fight. I'm tired. I'm scared. I'm alone. It's hard. Writing these words out makes me feel better because at least I'm acknowledging these thoughts so I can deal with it.  My back hurts.  My feet hurt. My knees hurt. My neck hurts. My arms hurt. My fingers lose more feeling everyday - no normal sensations, only pain. 

June comes around again

 It’s the middle of the night and it’s a warm night, not a hot one, but still, I have not yet fallen asleep and it’s almost 2 in the morning. It’s this time of night my mind seems to run wild - Sometimes it feels as if my mind is free at this time. Free from the restraints that my failing body keeps it caged during the day. In my youth, I always used to think of this time as my most creative. I did a lot of my creating at this time - be it writing stories or essays or composing music, This time of night has always seemed to feed into the river of creativity. 

I’m not really feeling creative right now and I haven’t been feeling creative for a long time. I haven’t written anything that I have been in love with in a long time. It has become difficult and almost impossible to play guitar very much; The neuropathy in my left hand has rendered it almost completely useless. I played a little guitar up at camp this last weekend and I got to a point where I could barely form an E major chord. Betrayed by my own body. I’m thinking that it has to do with some pinched nerves in my neck and spine from all the spine issues I have. I’m still holding out hope that I can get that taken care of and that maybe I can at least get that part of my life back. Sometimes I feel like I’m whittling down to nothing. Like maybe I am going in to my back nine of life. Maybe this is my ramp out. And I get to slowly lose everything that I used to love about life. It’s not a comforting thought, and I can’t succumb to that. I have to think that if I fight, And I work towards it I can regain some of these things. But the fight has gotten so much harder, and it is hard not to become overwhelmed by a sense of despair. But I’m trying real hard not to. At least I had the good sense to type this out right now - I feel like this is one of the first big spots of writing I have done in a while. 

My body seems to fail more and more every day. I’m tired. I’m hurting all the time. And I don’t like to admit it, but I’m very lonely. I’m so lucky I have my children in my life because I don’t know if my heart would be in it if they weren’t around. They are a very big beacon of light and they are definitely what keeps me going. I know people say this kind of thing all the time, and in my case, it’s absolutely true. They are what keeps the blood pumping through my heart. I hope I can find some joy in life again outside of that too, though because that’s important. I would like to be a well-rounded human being And I have to remember to keep trying to do things that I love and things that make me feel alive. 

Spinal Situations

 So yesterday I got an epidural & steroid injection in my spine to help relieve pain & pressure along my very herniated L4-L5-S1. It had gotten really really bad to the point where I was using a walker for a while, and even had to be wheeled into Dialysis in a wheelchair because it was both so painful to walk and I was so anemic that I was exhausted taking a few steps. So I was rather excited to have this procedure done, and to see what kind of results it would give me. I may still need surgery in the future, but for now I wanted to see what this would do. I have had it done in the past with varying degrees of success ranging from very helpful to not so much. It all seems to depend on where the doctor decides to place the needle and we had a good conversation beforehand about where we should do it this time and I think that we chose a good spot. It seemed to go very well and even with sedation, man, did I feel it when the needles went in. But after that initial minor discomfort, I have slowly started to feel better over the course of the last day. I didn’t sleep very well last night, but that is to be expected after an injection like that. However, I did notice that all the times I got up and down and walked through my house in the middle of the night, I was already walking better and significantly less pain than I have been. So I am looking forward to seeing my progress over the next week and maybe I could actually get back to being able to walk like a somewhat normal human being. Right now walking anywhere leaves me a tremendous amount of pain, and you grit your teeth & bear it, but it is nice at the moment not have so much pain. I’m actually looking forward to walking into Dialysis today. I’m using a cane for balance because nobody wants this gigantic body of mine falling anywhere but baby steps towards a more normal life. Whatever that means.

I’ve also attached Venmo info to those who might wanna help a bit. Medical bills still coming in and while I have coverage, it doesn’t cover everything. Every lil bit helps. Thank you. 

Venmo:@StevenA519

https://venmo.com/u/StevenA519

GoFundMe & other Updates

 If you didn’t know, I have had a gofundme that my friends set up years ago; it is, I’m going, and I often post updates there. It has really helped me out over the past six years and I really can’t say how thankful I am for both its help & the dedication of my friends from all around the world. They have a cheeky saying in regards to it and they’ve held benefits called “Stop Dying Steve” which makes me chuckle. Honestly, good friends have gotten me through a lot and I’m so thankful.. and lucky. 

https://gofund.me/972fd5ad

There it is if you’re curious. 

Middle of the Night thoughts

 

I fell asleep watching a movie earlier tonight, and woke up with a start not too long ago. I was dreaming that my Transplant still worked & life was relatively normal. I don’t know if I have properly expressed how devastating it is to watch an organ transplant slowly degenerate. I think because you just have to keep pushing on in life, because I have so many other obligations, I may not really have given time & space to process & mourn the loss. It’s the death of hope and any sense of normalcy… and I’m incredibly sad about it on top of everything else.

Thankful

 Recently, I read a post on social media, detailing the people we have lost from my class, and other classes near mine.  I was just glad I wasn't on that list yet - we've lost a lot of great people I went to school with... it's a sad fact of life that this happens more as we age, but I'm still sad at the losses.  Good people, good families... life is tough.  But I am glad for every day I have above ground - even the hard ones.  And there's a lot more hard days lately... but I'm still glad for them.  Each day is another opportunity to maybe do better, and each day is definitely another opportunity for me to spend time with my kids.  Anyway, just want to say thanks again to everyone who makes my time here worth living.

Dialysis Life

 Dialysis life is rough life.  Hemodialysis isn't easy... and it's definitely weird to think that I can compare doing it in my 20s to doing it in my 40s.  It was definitely hard both times, but man, it was easier in my 20s.  It takes a lot out of me now.  And yet, I have more responsibilities now... it's difficult to juggle them sometimes.  I am really lucky, because I have a great support system on this now.  My parents help me a lot, and I'm grateful for it - but it also leaves me with a big sense of sadness, because I wish I was the one giving them the assistance.  Or giving them gifts, at least,  One part of being chronically ill that is so hard is knowing that you are a burden on the ones you love.  As a parent, I understand the need and want you have for your children, and because I was lucky enough to be born into an amazing family, they give so freely of themselves. But as an adult, I don't like to be a lodestone on anyone's life... but there's just so much I can't do on my own.

I'm hoping that I can make this time in my life temporary... and maybe I will get another transplant, and this one holds and I can start a better life for myself.  But that idea is way more daunting at 45 than it was at 25. After I got through the whole difficult process of getting a new kidney, having surgery, recovering and moving on... I basically have to start all over again.  It's hard to look at.  But I still have hope.

So, throwing this out into the digital void, thank you to all friends and family who help carry me in these times.  It's not so much for my sake, but for my children.  You help me provide them with as "normal" a life as I can, and that... I am forever grateful for and surely unable to truly pay back.  But I will try.

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.

Now & Then

 As my mind is wont to do when I'm spending time alone with myself, today I found my thoughts randomly wandering through memories, and for some inexplicable reason, I found myself remembering an old "video game" console from the 1980s called "Action Max".  It was from a company called World of Wonders, who had success with Teddy Ruxpin and their "Lazer Tag" game... this system was weird and unique in that the games were on VHS tapes, and you hooked a console with a light gun up to the TV, and attached a device to the corner of your TV so it could sense the light gun hit the targets that showed up on the TV.  World's of Wonder went bankrupt, and the system never caught on, but my parents bought it for us one Christmas, probably on sale as they pretty much fire-saled their entire inventory after the market crash in '87.  I digress.  It was still cool to me and my brother - they got us the system and all four available "games" on VHS.  I remember hooking it up and being enthralled for days, until we moved back to our trusty NES (and Atari 7800). The system became forgotten by the public, and by us... but the memory of that gift and that Christmas has never left the halls of my memories. I just remember being so excited.

And now, I can look back as an adult... and think about how excited my parents probably were to get that and give it to us.  We all want to connect with our children, and make them happy.  My parents knew how much I loved video games - as a kid, I was obsessed with them.  They were pretty much the only thing that made me happy then. I didn't connect to others things that kids liked at that time - I was terrible at sports, I didn't like to go outside much at that time, and I was struggling with school. But video games made me happy. It wasn't just a gift - it was a parents way of saying "I see you."  And, God, I feel that so much now.  With my children, I strive so hard to do the same there.  There is this boundless love inside of us, and it exists outside the normal workings and stresses of life - jobs, careers, bills, etc. It's so huge.  And I learned that from my parents - and I try so hard to pass along and share than love that I was given.  And I think back on these small memories, and I think about how goddamn lucky I was to have my parents.  I was not always the easiest child, but they loved me so.  And, honestly, it's that love that's kept me alive through all of my struggles with my health.  Twenty years; practically my entire adult life.  God, I am so lucky.  Despite all the hurdles thrown at me, and experiences I would not wish on anyone, I am so lucky. And I am so happy that I get to pass on that love to my own children.  I love watching their faces light up when I engage with them.  And the hugs and "I love yous" we share with each other every day are just so precious to me.  I hope someday, when they look back on me, they can see how much this all means.  And how it's a chain that's come down generations - and how fortunate we are, all of us, to be family.

Getting back into it.

 Dialysis is hard.

Not only is the procedure uncomfortable, but the lifestyle is rough.  Switching gears from my transplant where I had to drink at least 2L of water a day to where I must try to drink only 1-1.5 L of fluid, total, a day, is so hard.  Fluid is everything - coffee, water, milk, juice, soda, etc.  You find that it adds up quick - and one of my favorite things in the world was drinking a very large glass of water with an absolute ton of ice... and avoiding foods high in potassium and phosphorus.  It's just difficult to switch the gears.

The process is disruptive as well - I go into dialysis at 6:30 AM... so I get up every Monday, Wednesday and Friday, get the kids lunches and backpacks ready before I head in.  Then the process is four hours long - plus the time it takes to put you on the machine and off.  It's a grind.  And afterwords, as of late, I am absolutely wiped.  I'm not as young as I used to be, and its harder now than when I was 24.  But I'm doing it.  I feel a little more like myself, but I still feel like the shadow of the person I used to be,  It's just been difficult - I feel more alone than ever.  But I'm trying hard, because my kids are just so cool. They're looking forward to Halloween... and then Christmas after.  I hope Christmas is good and fun this year.  I just wanna be their loving and fun Dad.  That's the best gig I ever had.