Wednesday, March 29, 2017

Playing Through my Midlife Crisis

I'm officially calling my midlife crisis. About two weeks ago, I started a new hobby which ties together several life threads...



Yes, I'm making YouTube videos. I'm an amateur (as my kids remind me), but it's a fun hobby. And it's my excuse to play with toys, buy old stuff, and open collectibles from yesteryear. That was the plan at least. And then Elliot intervened:



Oh, there still will be plenty of old junk, but I think Elliot and I will have some fun playing games together. Even at five, the kid is drawn to YouTube and enjoys watching himself on the little screen.



So for now he's my production buddy. I'll do some solo stuff (boring) and some Elliot stuff (awesome). I'll let him play with some old toys from my childhood and go head-to-head with some modern games. This hobby is my chance to hunt for Aaron the Kid while fully engaging in life as Aaron the Dad. And while Owen and Max haven't been featured in a video (yet), they are watching them. This might be a great way to sneak some parenting messages past them...



Please subscribe to the YouTube channel (if that's your thing) and see where this adventure goes...

Tuesday, March 14, 2017

Making Meaning

If you call me the enemy often enough, does it make me one?

This is old ground... I am a heterosexual white male in my 40s who attends church (mostly) every Sunday and hails from a small town in Kansas. These are details, and maybe they are enough for you to "know" me. These are the details which have kept me (mostly) silent since Donald Trump was elected president. 

Who needs another white, male, heterosexual voice from "rural America"? 

I've kept silent because men like me are the enemy. In Sunday's op-ed (3/12/17), Leonard Pitts all but says I'm the problem. He points out a dichotomy between rural/city and Christian Fundamentalism/Secular Humanism as if clear bright lines separate these groups neatly as conservatives and liberals. His words ruffled me. Maybe because I'm a white, male, heterosexual voice from "rural America." Maybe not.

In our race to "understand how this happened" to our country, we've lost sight of a fundamental human reality--and a fundamental human need that goes along with it. The universe is a big place, and we spend our lives making meaning in it.

Personally, I've found solace in knowing I'm really not in control of anything. After Aimee's death, it was a comfort to know life was out of my control. Yes, a comfort. When I think about my father's slow descent and death after a brain tumor, I realize the same strange comfort shaped my youth.

The universe really is a helluva lot bigger than I am and it really doesn't give a shit what I think.

I've struggled with spirituality all my life--what my friend Heather calls my existential crisis. I've been a church-goer for most of my forty-plus years on the planet, but I'm not fundamental. Why do I go? It's simple really: I like the community. I like to be challenged. I love a reminder that I am what I am: ash and dust, mortal, small, and definitely not in control. Ash Wednesday is one of my favorite church nights because those messages about mortality are embedded in its very fabric: "For he knows how we were formed, aware that we were made from dust." (Psalm 103:14)

Do I really believe in God? Some days, yes. Others... Does it really matter?

The universe is bigger than me and doesn't really give a shit what I think or believe. I'll write here, in this blog, a tiny bit of my thoughts and feelings and my momentary reasons for being, but ultimately, the universe will keep spinning. But we, as humans, need meaning. It's a hole which too many of us fill with addictions and destructive behavior. It's that ache that wealth and status can't soothe. My core desire is to be a part of something bigger than me--bigger even than my "tribe" (which seems to have become a buzzword of late as we frantically try to fill the gaping holes in our lives). Like that line from "Helplessness Blues" by Fleet Foxes: "...a functioning cog in some great machinery serving something beyond me..." It's what I feel deep in my core, wherever and whatever that core is.

You call me an enemy, but I really just want to be a part of something that is serving the universe beyond me. I can only control what I can control... who I vote for, but not the color of my skin; what I write in this blog, but not the fact that I am a hetreosexual male; who I seek as allies, but not whether or not those allies want me on their side; the lending of my listening ear and empathetic heart, but not whether anyone will speak to me or trust me.

I am not the enemy nor am I on the other side of any simple dichotomy. I am just a man. A human. A cog hoping for a home in something far grander than I am alone.

My meaning in life is not to be anyone's enemy--nor will it ever be. 

Monday, March 6, 2017

On Being a "Difficult" Parent

I'm officially intransigent. I think that means "difficult."

The last time Max had an infusion, one of his inflammation markers was elevated. I've learned that predicting a Crohn's flare up can be a guessing game er, prediction activity involving a slew of lab results and reports of clinical symptoms.

He'd just had an ear infection and ten days on antibiotics, so wonky labs could have been innocuous or a "false positive." It was also one result from a few inflammation markers checked every infusion--and the other numbers were fine. Evidently his GI specialist didn't think so, and through a rather uncomfortable round of "let's play triangulating communication" with me and his nurse a week after those labs, I learned he wanted to move Max to a six week rather than eight week infusion schedule.

Look, I know my kid is sick. He spent nearly five weeks in the hospital last winter before having three surgeries through June. But--and this is pretty crucial--Max hasn't reported a Crohn's symptom since the first surgery liberated him of a very sick colon.

I don't harbor illusions that my child is healed and cured of this disease. We travel to Kansas City for infusions every couple of months (I guess six weeks now) since last January. We make sure he takes his vitamins and anti-anxiety meds. I monitor how much he eats, his exercise--everything. I am not happy that the doctor is changing treatment based on a single lab result one time and the apparent dismissal of my explanation that Max has been symptom free (through the nurse triangulation channel, of course). I certainly am not happy such a thing happens without any examination or discussion with the patient.

In fact, his specialist used the word "intransigent" in an email to the nurse with whom we were triangulating to describe my attitude toward Max's symptoms in the past. Go on, look it up. Google that bad boy. Kind of sounds like an insult, right?

Before Max's hospital marathon, I may have misread some symptoms. I may have not understood the gravity of the disease and how things could spiral quickly. Max also struggles with anxiety, and I know the anxiety contributed to his downward spiral. This is how things happen with chronic diseases as families learn to manage and cope.

Things are different now. He has no colon. I monitor him more closely. He's receiving treatment and therapy to manage the anxiety And he's been doing well.

But now I'm a "difficult" parent. Intransigent. Pig-headed and stubborn and, in his specialist's opinion, blind to what's really going on with Max.

No.

I live with Max. I know what's going on. I know how many times he has a bowel movement every day. I know how he's feeling and what his worries are. I know what math group he's in and the book his reading group is devouring. I know his favorite Pokemon and the name he uses on Minecraft servers. I know he asked for a pill form of Benadryl before his infusions (given before Remicade) and I know the specialist hasn't bothered to change those orders to meet his request since making that request nearly six months ago. I also know that same specialist never had a conversation with Max's surgeon last spring. I know that's not necessarily how medicine works, but I know that's how I work. I know I expect more communication than a couple of phone calls with a nurse and a naughty note about me from the specialist to that nurse. I know I'm frustrated and sometimes mad as hell.

And I know, most of all, I love my son and will advocate for him to the best of my ability,

If that makes me "difficult," bring it on.


"My dad is pure evil." 
(Elliot, age 5)

Monday, February 27, 2017

Peeking Through the Keyhole

I've had a problem since I was a kid with a single digit age. Back then, Freddy Kruger, Jason, and their grisly compatriots haunted me. I'm sure they haunted a lot of little kids, but they really wormed into my brain and set up camp. 

That wasn't my problem. 

My problem--all my own making, of course--came from my inability to turn off the bad stuff. I never learned to “look away.” If a television ad for Nightmare on Elm Street popped up while I watched Different Strokes or The Facts of Life (simpler times, people), I quickly turned the channel... and then turned it back. I remember snapping the rotary dial back and forth, catching snatches of nightmare fuel with each click. 

Yes kids, televisions had a rotary dial back then:



I knew the commercial would trigger a fear response well into the night, well past my bedtime and sweaty blankets-clenched-under-my-chin minutes before exhaustion overwhelmed. I knew what would happen and my first response was to turn off the bad stuff. But my brain isn't happy with that. No, I've always had the tendency to turn back. I've always had to “look again” no matter how bad I felt afterwards.

A glutton for punishment, I guess my mother might have said. She dealt with the aftermath as much as I ever did.

My problem with negative “images” manifests today with Amazon reviews, YouTube comments, and just about anything on the internet. No good comes from reading YouTube comments. Ever. But what do I do? I read them. I digest every little piece and let the negativity and ick seep in. Then, in the night, when sleep doesn't come easily, I play those negative tapes and let the darkness pour through the tiniest pinprick. 

The last few months have been especially charged with the election and aftermath. Freddy Kruger is a creampuff compared to the hate and vitriol dripping on some Facebook posts or comments on our local newspaper’s web site. God forbid anyone wander further afield into the world of extreme right-wing or left-wing “news.” It gets weird fast, people. Weird and scary.


But I can’t look away. The monsters no longer have claws, but I’m still pressing my eye against the keyhole and looking for them, checking to see if they are still there. I’m flipping that rotary dial, click-click-click, and finding more darkness than I should. 

Monday, February 20, 2017

Dirt in My Veins

This is a love story.

I grew up in a small Kansas town, Clay Center, the county seat of--you guessed it--Clay County. The town has a spiffy web site now and a pretty bad-ass water park. When I lived there, the internet needed diaper changes and the water park was a Great Depression-era concrete-lined hole in the ground. Just under five thousand residents lived in Clay Center when I was in high school twenty-five years ago... and the population has been shrinking since.

Dirt and gravel roads criss-crossed Clay County, most of them laid out grid-like in sections. Drive a mile, and you would find a perpendicular section road. Order lived there, neat and tidy, except for the river. The Republican River snaked from the west to south-southeast of town and disturbed the grid. Driving close to the river, I found abrupt ends to gravel paths and dusty drops of twenty or thirty feet to the slowly rolling water below.

My heart fed on those roads and the mystery of overhanging trees and quiet fields. I would drive and drive and drive during lazy afternoons. Gas cost less then, less than a dollar a gallon, and my car was a sanctuary. There were secret places and shadowed hollows of public hunting land near river-bottom fields. Dead ends hid in the county's hills--like a cemetery I once found while driving Mom's four-speed Ford Ranger. The poor machine strained in reverse as I straddled ditches on either side for a quarter mile as we backed away from the locked gates.

Sometimes on lazy afternoons, I would drive away from my small town on a county highway and choose a gravel road to explore. I'd park on the roadside, half in/half out of the ditch, leave my car behind, pick a hill, and climb. I'd be lost to everyone for an hour or two. Alone. Invisible. Gone.

I couldn't live in Clay Center now. I've grown, and the seventeen-year-old me is long gone. He left a legacy in my veins, though. It's why I don't mind my brief commute through the rolling countryside into Jefferson County. It's why I value slow Saturdays and walks on wooded hillside trails on the edge of Lawrence. Northeast Kansas is a cousin to the home I knew, close but not the same.

My heart wants these things--hills to climb and grass and trees and time to just be. I ache for a time when I could disappear for a few hours, lost to everyone and everything.There's no magic in my Kansas memories... just gravel and dirt and plowed-under fields and the muddy swell of a river.

No magic, but plenty of love.

Hills to climb.

Roads to explore.

A love story.