Waiting, Changing, and Fighting

People often ask me “How do you keep going?” It’s a silly question.

Quincy Behind Bars

My daughter is in the CICU at Children’s Healthcare of Atlanta – Egleston, and if you want to know more about it you can follow on her fundrazr page where I’ve put far more details that I don’t want to type again. She also has a Facebook page with more pictures and updates and stuff.

If you know me personally, or you’ve read some of my past stuff, you’re aware that fourteen years ago I spent seven days in the NICU with my first child. He didn’t survive. It was very difficult.

An ICU stay with my infant child is pretty much my personal worst level of hell; it’s the nightmare I can’t wake up from. I can safely say I would rather entertain rabid howler monkeys with a sock-puppet made from my own scrotum than spend so much as one more minute in a C/N/PICU with my child. And yet, this is the ticket that I’ve punched, this is the journey that I get to make again.

I know exactly how this could end. I’ve bought the tiny white coffin and the baby-sized grave plot already in this life, I have no illusions or magical thinking when it comes to the very real possibility that I could go all the way down that path again.

Kristopher Gravestone

And people, good people, ask me constantly “how do you keep going?”

It makes me think that people don’t actually understand the nature of life or the nature of people very well. I’ve thought a lot about this recently, so let me explain it how I understand it, and if anyone disagrees with me (and I’m sure they will) they can explain exactly how I’m wrong.

(Warning: some of this might sound a bit angry and frustrated due to all of the anger and frustration I’ve been feeling. If you’re looking for a warm philosophical hug, this is not for you.)

A week ago, I sat with a good friend and explained the first half of my theory of the universe and why it’s OK to be in a hospital with a tiny innocent baby who’s waiting for someone to cut out her heart and replace it with a better one donated from a child who was most likely the victim of horrible negligence or outright violent abuse.

It’s OK because everything changes.

Today I’m waiting for a heart for my baby. Next year everything will be different. She might have a heart, she might have passed away, she might (God-or-his-metaphysical-equivalent forbid) STILL be waiting…but it will be different. Things change. Things always change. Life is made up of changes. They might be Big Changes like aging, life and death, jobs and homes; or they might be little changes like what we watch on TV or read on the internet or what we make for dinner. But worrying about changes, big or small, is pointless. We can influence changes, but we can’t stop things from changing. That’s life. Life flows on.

No matter what happens with Quincy’s heart, everything will change. There’s nothing I can do to stop that, nor would I want to. I live safe in the knowledge that next week, next month, next year will be different. I hope for -and work for- the chance that those changes benefit me and my family…I want the best; but no matter what, things change.

If my outlook on everything stopped right there, that would be pretty good. That has a sort of metaphysical junk-food property to it that makes it palatable and almost cute.

So, let me burst the happy bubble with the flip side to that coin: I also happen to honestly believe that this life is purgatory.

Growing up, I wasn’t really exposed to the concept of purgatory. SDAs believe in “soul sleep” where the dead are sort of “super unconscious” and simply wait in the sleep of death for the resurrection at the second coming where OzGod-the-Wise-and-Powerful judges both the quick and the dead, sending those who’s balance of life’s record was “good” to heaven and then to the new earth, and sending those who’s balance of life’s record was “bad” to the lake of fire to die the final and eternal death once the old earth is destroyed to make way for the new earth of eternal paradise.

When it’s either/or there’s not a lot of middle ground. SDAs don’t need a purgatory…you’re good or you’re bad…up or down…eternal death or eternal life.

This, as I see it now, is complete horse-shit.

Mostly because that kind of thinking requires a level of legalism and a God with an arbitrary criteria judging every individual against a playbook they may or may not understand and may or may not choose to participate in. The thought that the universe provides for absolutely no personal agency is heinous to me; but more importantly, if God existed, this makes no sense anyway. Why judge them all after a period of sleep-death? What does a second coming even DO in the context of a battle between good and evil? That actually implies that evil is directly equal or so close as to be moot for any rational purpose. But good will win for no clear reason, sin is an uncontrollable force of nature like gravity, and we’re right back to a universe without true personal agency for anyone actually LIVING life on earth.

Thanks, I’ll pass.

The concept of purgatory though, that humans are doomed to a period of trying over and over and over to get it right enough to move on to some next phase? That sounds more like something a God would do.

That also sounds an awful lot like how I experience this life anyway.

Life is basically the movie Gladiator on repeat forever. Stick with me here, I’ll explain:

Every morning, when you or I or anyone wakes up, we’re face down on the sand of the arena. Every morning we have a choice. We can stand up, strap on our sandals, tie our stupid dangly-leather-strip-skirt around our waist, take up our sword and kill whatever-the-fuck comes through the door when the trumpets sound; or we can lay there and let it kill us, again.

If we get up and fight, we might die. The lions and slaves and fellow gladiators of life may kill us. They may kill us in our heart, they may kill us in our soul, they may kill us in our mind or in our faith in humanity or ourselves or whatever. They may look like a bad day at work, or a boyfriend who cheats on us, or a wife who belittles our job, or a neighbor that lets their damn dog shit on our lawn every night for the last three years; for me it might be a day in a hospital, or Quincy gets an infection, or her heart fails her, or perhaps she loses the fight…many things will jump up and try to kill us. Some days they will, some days we sink our sword into their throats and feel the rush of victory in our blood.

But either way we wake up tomorrow with our face on the sand of the arena floor. Same choice to make. Same ultimate outcome.

I’ve never met anyone who didn’t have to fight every day of their life. You can have your best day ever -the most relaxed vacation day of your whole life- but you will still have to fight something: self-doubt, petty jealousy, fear of tomorrow; something will come for you no matter where you run, no matter where you hide.

Some days you may fight only for your own amusement, screaming up at the crowd “are you not entertained?”

Some days you may stand back-to-back with others and face down the enemy with courage and honor.

Some days you may sacrifice yourself with dignity and a clear conscience.

But the next day you will wake up with your face in the sand of the arena floor, and once again you get to choose whether or not to strap on your sandals, tie on your stupid dangly leather strip skirt, pick up your sword, and kill whatever-the-fuck comes out that door when the trumpets blow.

The truth of the matter is that we never win anything. And we never lose anything. We’re Bill Murry and it’s always Groundhog Day. No matter what the outcome of one day’s battle, live or die, victory or defeat, we have to get up the next day and do it all over again. The same arena sand on our faces, the same choice to make, the outcome never changes the conditions.

All we know is that what we fight will be different. The fight changes. The fight ALWAYS changes. But, there is ALWAYS a fight.

I know many MANY people who feel this way about life. The hard, grueling truth is that we will fight until we can fight no more. I’ve never known a day that wasn’t a fight. I’ve never known a person who didn’t fight every day.

I’ve never met a person who was done fighting. Supposedly when we die we go on to some other reward, but I’ve never met anyone who crossed over. I’m not entirely sure we ever do. I often wonder if this is it, if this is eternity.

Here’s the thing about God: We live in a universe where babies are born innocent, yet innocent babies have life-threatening conditions that could kill them. Or life-threatening conditions that DO kill them. If God made this universe, then either he was powerless to prevent innocent babies from being sick and dying…or else he either doesn’t care or chose that path on purpose. Omnipotence means universal responsibility.

If God MADE this universe, than he’s responsible for everything in it, including sin and the effects of sin. A “kind and loving” God that makes a universe where innocent babies die in seven days, where parents bury little white coffins in graveyards, or wait for months for a surgery that is almost as frightening as the disease it hopes to cure; that God doesn’t need some kind of penance from me — he owes it TO ME. He should be begging me to forgive HIM.

A God that can’t keep babies from being sick and dying in the universe that he made is weak and powerless, impotent in his own creation.

A God that chooses to let innocent babies suffer and die is sadistic and cruel beyond comprehension.

I happen to think he’s neither. I happen to think he’s not even listening anymore. The great drama is over, the test is done, now we’re just mopping up the afterbirth of whatever was supposed to come next. The last bits have to play out, the last souls have to be tested and processed and refined into whatever it is that souls are refined into.

This isn’t “the world” or “heaven” or “hell”…this is purgatory, and we’re all souls that have to be finished up. And every day, we wake up with our face in the sand of the arena floor, we strap on our sandals, we tie on our stupid dangly leather strip skirt, we pick up our sword, and we do our utmost to kill whatever-the-fuck comes out that door when we hear the trumpets signal.

Because that’s what we do here. That’s what we ALWAYS do here. We don’t know why. We don’t get to know why. We don’t really know what comes next, or what came before. Maybe we’re all the same soul being tested over and over and over in a multitude of different ways. Who knows. Who cares.

Tomorrow, no matter what, win or lose, pass or fail, live or die, we will all wake up again with our face in the arena sand, with a choice to make that has absolutely zero impact on the day that comes after. The profoundly sadistic truth is that what we do doesn’t REALLY matter.

We can study hard and get postgraduate degrees, we can drop out of high-school; we can be model citizens with perfect lawns and perfect driving records, or we can rob banks and rack up more points on our license than the Detroit Lions can score in five seasons; we can go to church and pray to almighty God, or we can sit on a rock and contemplate our own navel; nothing will change the simple fact that tomorrow will be a different fight in the same arena, no matter what.

We can try to affect the fight we face, but in my personal experience that counts for less that jack shit most of the time anyway.

Your life isn’t what you make it, just your day-to-day fight. What you do today will count today. What you do today doesn’t often count for much more than wasted breath tomorrow. Who you fought with, who you stood shoulder to shoulder with, how you fought and how those around you fought; those things can affect how you plan for your next fight.

But you will have a next fight.

How do I keep going? Easy, I have no choice. Neither do you. We all do the same thing every day. Today I fight the intractable horror of waiting for a heart transplant for my baby daughter. Today you may be facing self-doubt about your career or your marriage or your grooming choice for your cat. Doesn’t matter what we fight, we all face the same choice.

We can lie here, and let it kill us. That’s an option.

Or we can stand up, strap on our sandals, tie on our stupid dangly leather strip skirt, pick up our sword, and kill whatever-the-fuck comes through that door.

I’ll take the sandals and the sword. And honestly, we both know so will you. We’re not so different. We all fight. We all die. We all get up the next day and do it all again. The fight changes, the fact that we fight does not.

“How do I keep going?” I strap on my sandals, tie on my stupid dangly leather strip skirt, pick up my sword, and I try with everything I have to kill whatever-the-fuck is coming through that door. It’s what I did yesterday. It’s what I’ll do tomorrow.

What we fight changes. But we will always ALWAYS have to fight.

Quincy Sleeping

4 thoughts on “Waiting, Changing, and Fighting

  1. What a profound and moving message. I have been blessed with healthy children, although my third daughter was almost born at 28 weeks gestation. Modern science and a miracle allowed labour to be halted and she hung in there, arriving on her due date. She turned 18 last week.

    I wish you the miracle of a heart for your daughter as soon as possible. In the meantime, god bless and keep you all safe.

    God bless and keep you.💐💝

  2. Nick, that is some awesome writing, and I bet Mrs Becker would be proud of you. I don’t care if it did have profanity in it, it was good! I’m not only impressed about your writing but impressed with your honesty. Your ability to look at all the garbage around you, and be honest with yourself and with those who you know, and maybe still respect. I’m proud to see who you’ve become.
    I want to do something here, and I hope it is an ok place to be honest. But I want to apologize to you for the picture of God that you were handed. How do I know? Because it was the same one I was handed and you have described that picture very accurately. I also want to share with you that that picture you got is WRONG! To be even more blunt, you were LIED TO! I am sorry!
    I will leave it there for now. If at any time you are curious about what I mean, I’d be glad to talk to you. If not that is ok too. I respect where you are and have been and the “beyond hurt” that you have been through.
    But until then, know that you are an awesome guy. How can I know that? I hear it in this blog that you wrote. I hear it in your posts on FB and I hear it in the support and love you have for your friends. Most of all I hear it as you talk about your love for your wife and children in so many different ways. Hugs Deb

  3. I can not imagine the pain you have had losing your first child and now a heart transplant with your third. Your daughter is an amazing fighter. I have a fighter of my own that survived ECMO for his lungs. And I’m sorry that some “Christians” told you after your son died that if you prayed harder or had more faith he would have lived. I just believe that to be false and I’m sorry that some would try to put that blame on you. I pray for your daughter and am thankful for her transplant. I am a Christian and from reading your posts I know that we would disagree on much but, I pray your daughter’s little body accepts the heart and you have many joy filled years.

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