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

Decide. Commit. Succeed.

In the early summer of 2004 more than a decade of poor health choices caught up with me. It’s was hard to think of it as a decade of poor health choices, and if you’d have asked me about my health up to that point I’d have described it as “fair.” Which would have been grossly inaccurate.

When I was in high school, I remember how frustrated I was that I could never gain weight. Perhaps that doesn’t make sense from a mid-thirties perspective, but when you’re seventeen and weigh a-buck-forty at five-eleven (and one-forty was probably after a heavy meal and wearing a winter jacket soaked in water…or concrete), all you want is to “bulk up.”

I ran everyday, I had “a runner’s body,” and I hated it. My best friend had a naturally broad build with a thick chest and strong shoulders. He looked like the cover model from romance novels…and it drove me crazy. My jealousy was both good-natured and palpable.

I ate everything. And a lot of it. When I was actively running regularly and working manual labor jobs for six hours a day, I estimate I was consuming somewhere in the neighborhood of 5000-8000 calories a day. And I didn’t gain a pound. Not one.

Some of the most embarrassing photos of my life…

The Anticipation of Misery

There is no word in the English language that describes that moment when we know something we will not like is about to happen but we also have to make a brave face and happily march into the hail of emotional bullets on the other side of the trench we’ve dug ourselves into. It’s the perfect mix of dread and consignment and acting. No matter how much I might hate for her to leave, no daughter deserves a distressful send off as she prepares to make the five-hour trip across the country by herself.

Cute Pictures and Bad Poetry…

Saying something now…

…because I won’t feel like saying anything later.

For once, I’m trying to be realistic about what comes next. In under 24 hours (more like 17) Sarah will walk back down a jetway and board a flight back to her mother. I always try to convince myself that “I’ll be fine” and it won’t really affect me, the practical part of me knows that tomorrow I won’t feel like blogging. At all.

So, I’ve decided to ask my blog-friends for help. When you read this tomorrow (as I assume most of you will), would you please remind me to write more. Write something. Write anything. I always feel better when I do…and I’m gonna need all the kicks in the pants I can get to push me across the chasm between writing nothing and writing something.

I’ve got the genesis of a music-based post largely inspired by finding that picture of my 1974 Van, as well as the next few “What I’m Looking For” lines in various states of done (and by done I mean partial drafts and/or fragments) so I should be able to wrap myself around something.

Or I can just go off on my opinion about substituting “Young Earth Creationism” for science in school curriculum. I’ve got a good sized blog post about that built up after a week with Sarah and “I don’t need to learn that because GodDidIt” being a good enough excuse for a nine-year-old lacking a fundamental understanding of things like heliocentrism, what stars are, the minimal basics of biology, or the fact that atomic particles aren’t imaginary and just made up by scientists who refuse to believe in GodDidIt.

Anyway, I could (and just might) go off on that for quite the spiel but now isn’t the time.

Now is the time to ask for help. Tomorrow will suck, and I need people to remind me to do the things that help me get past the suck that I never remember to do when things suck.

So…please…start reminding me tomorrow. I will deeply appreciate it.

A Moment of Sanity

As anyone who listens to the news is aware, Federal Judge Vaughn Walker has ruled in Perry et al v. Schwarzenegger et al in California today, and for the first time in quite some time, I feel like the America I live in is becoming a little bit more like the America that I aspire for it to be.

The ruling can be read here (it’s a .pdf) and starting on page 109 Judge Walker provides some of the most profoundly rational and reasonable findings I’ve come across in a federal ruling in a long time.  I’ve read the entire finding, and I encourage anyone to do the same.  It’s very approachable, and draws clear and reasonable conclusions.  Judge Vaughn will be excoriated as an “activist judge” by many on the losing side of this finding (which is hardly a risky prophecy given the love of some groups to trot out that phrase at the drop of a hat) and I honestly encourage people to take 10 minutes and read what the judge has to say, and read why he makes the decisions he makes.  It’s not a difficult read, just 25 pages of double-spaced, courier font goodness.  This is the essence of how America works.

I’m not a political blogger, nor am I a law blogger, nor am I an LGBT-issues blogger…nor am I a member of any of the classes of people that are directly affected by this ruling…but I am affected by the spirit of this ruling.  I have family that will be affected by this ruling. I have children who will live and love and marry in an American legal landscape decided by the ultimate Supreme Court review of this ruling.  I can only hope and pray that the Supreme Court of the United States gets it as right as Judge Walker got it today.

The conclusions of Judge Walker’s ruling:

Proposition 8 fails to advance any rational basis in singling out gay men and lesbians for denial of a marriage license. Indeed, the evidence shows Proposition 8 does nothing more than enshrine in the California Constitution the notion that opposite-sex couples are superior to same-sex couples. Because California has no interest in discriminating against gay men and lesbians, and because Proposition 8 prevents California from fulfilling its constitutional obligation to provide marriages on an equal basis, the court concludes that Proposition 8 is unconstitutional.