Monday, June 24, 2019

Gone but Used to Be Mine

It's not simple to say that most days I don't recognize me
It's not easy to know I'm not anything like I used be, although it's true
I was never attention's sweet center I still remember that girl

The above quoted line is from the only musical I've ever purchased only one song from. There are some I've purchased the entire album, some none and some several but this is the only song purchased from Waitress. She's reflecting on what her life comes from unexpected growth, in her case a child from an unplanned pregnancy. I was one of those and I've also had some unexpected growth that was life altering and as it theoretically at least is about to get a less regular part of life altering, I keep thinking about how the normal in my life has shifted so much. I say change is life's constant often but despite my good heart and lungs, even I have to catch my breath sometime when I sit and think about the last several years, the good parts, the mistakes, the variations. I had a goodbye tour before brain surgery; I didn't call it that to anyone but myself and most people heard the affection but it was also a whispered shout of fear what I said at the end of meals in places I'd lived: "I'm not sure if the guy going in is the same one coming out but this one loves you guys." I'm not sure I've yet acknowledged to anyone myself included how I don't recognize me on most days and somehow I still remember the pre-cancer, pre brain surgery guy. This blog is a faint attempt to do so. 

She's imperfect, but she tries 
She is good, but she lies

I'm so far from perfect there's no point in even trying to diagnose that. But there are moments where I realize the pursuit of perfection was an honest desire of mine. I was that nerdy kid who got the highest grade in the class, a 98 or a 99 and didn't care about the good great or it being the highest but about which questions I've missed. I don't know where I learned that but perhaps it's genetic because Kiana missed exactly one question on her standardized tests this year and she wanted to. know which one. Turns out now in the age of tech savviness I could actually look up all the questions and see which one she missed and what kept her from keeping a perfect score was appropriately a math question about absolute value. 

Now the amount of notes and calendar appointments and spreadsheets I keep makes me wonder would I have been a suma cum laude graduate with two degrees or valedictorian if it took anywhere near this much effort? I had a roommate who studied and studied as he was from Argentina and still working on his english and at the time was not getting as good of grades. He's now got a Ph'D but I gotta say there was probably never a point where his grades weren't more honestly earned. 

But speaking of honesty, I often say I have a lot of bad qualities but pretentiousness isn't one of them and I assure people at all levels that I'm never going to lie to them. This is perhaps the biggest deception I share. While it is true that I never lie in telling anything that's because lies take memory to recall and when your memory is this damaged... the truth was better anyway. But with general memory and the facial recognition issues I have, I lie to people all the time who wave at me clearly knowing who I am and I have no clue. The worst of these perhaps is when I am carrying on a conversation with someone who I've clearly talked to them but I am asking questions trying to figure out who they are (I have a decent batting rate). But I've been lying to their face because I don't recognize it and I wonder how many people were able to tell. The way I remember so many people is through distinctive marks or piercings or tattoos and others I study them on social media in a way that would be creepy in person. But I've deleted so many people on social media because I'm very overwhelmed by the strangers that keep track of me because of positions or media and thoroughly underwhelmed by what feels like replacing many likes and heart and shallow connections for more serious ones. 

I am never quite sure but there is not a day where I hope that these aren't good tries at life. 

She is hard on herself
She is broken and won't ask for help

I'm onto my 5th year as ARC president, a cause I took on this damaged because I believed the
running community was a huge component in saving my life. Like the fundraising I've done for Livestrong or Duke or Brain Cancer research, there was this responsibility to pay back. On Father's Day Kiana had worked and earned some money and kept insisting that the money was to be used to buy me steak. I told that story a few times because she wouldn't let it subside. Someone gave me a gift card for a steak house and Kiana was impressed at one of if not her fanciest restaurant experience. Like all of my other faults, I don't know whether encouraging or discouraging avoiding them will be particularly productive. On the cancer side, I still try to pass it forward. I still go to hospitals and hospices and funerals and a fair share of them on my own. Along that line of being honest, I am unclear as to whether having let Elaine come to a few is progress or adding more. I'm still broken and still don't want help.

We as a family have been playing games like Hanabi and Codenames more, my two current favorites. They are great games, games I would have liked at any point in my life but were just introduced later. They are cooperative games where you're working on winning together on beating the game, the other players aren't your competition. But they are also words that necessary skills are language and memory, the deficits I feel most painfully. I think there's times I've frustrated both my wife and my daughter at how the game is playing out. I've told them this but without literally being inside my head, I am not sure anyone could ever understand that I'm desperately trying to beat the impossible, a guy without brain damage.

She is messy, but she's kind
She is lonely most of the time

The local ARC election made me realize some of the gaps in my leadership. I took over an organization that had its own gaps and many of those improved due to good focused teamwork. However, there were some things I missed in the mess, some inherited plenty of my own making. I was genuinely surprised at how mean some people were about it, with some making direct remarks at my wife and my 12 year old daughter. I've tried to respond in emails and messages that have kindness and are above board but I am not in denial that some of the damage is done. Some may be irreversible like any damage but as a guy with a scar on the side of his head, I know healing is not always a clean process and hope that we can make some progress there.

Perhaps the very writing of this blog comes from summer's loneliness. Summer ends up being some of the happiest non productive times because Kiana's not in school and so we have a lot more adventures once she eventually gets up. But part of the summer is also the toughest time because she's gone to spend time at her mom's house. Almost invariably summer time is when I run the most because well I have more time to kill. However, until this year it was also when the dog and I would the longest walks in the woods. Not too long ago they were longer in distance and in her more tired years they were longer in time as we were talking slower. I keep staring at the dog door or where the dog bowl used to be and getting watery eyes. We moved a huge percentage of the decorations around to make that focal point shift and changed pictures in the frame but my memory, thank God, isn't that easily fooled.

It's not what I asked for sometimes life just slips in through a back door
And carves out a person and makes you believe it's all true

A friend from college recently asked me to help them as they train for their first half marathon. Another who hadn't ran since college just finished their first after some guidance on which one to pick. Neither remembered that I ran in college. I was also on the track team from 3rd grade through high school.  I've played some sports and been part of clubs  Like most kids, I had many interests but while I was in band in middle school and high school, running has been my most consistent side gig if you will. Yet because I was the nerdy kid that's where anyone who wasn't on the track team remembered me. My diplomas or academic certificate never once hung on a wall and yet tropies and medals are displayed in almost every room in my house. The story of the guy who put off brain surgery to run a marathon and who won one pushing a stroller are an identity that still exists and it's embraced me or is it the other way around?  I even had a running themed wedding less than a year ago. I both love it as a place for friends and family and as a coping mechanism and as a place where brain surgery didn't cost me losing a step. 

And now I've got you And you're not what I asked for
If I'm honest, I know I would give it all back
For a chance to start over and rewrite an ending or two

As I sat and decided whether or not to have surgery, or any major life decision, I generally try to not look back because time travel is not possible and unlike little life decisions, there's not room for correction. But I hear cancer survivors talk about the things that have come out of their disease or its treatment that made it worth it to them. The awareness of mortality shifts lives often and the brushes with death provide darkness in the painting on human eyes that are often searching for light. But I still remember the guy who was playing ultimate then, a government worker with his own office. The music jammed while I was doing paperwork not while I was pounding out miles. I wasn't running as much and TWICE tore my suit while bending over because it wasn't quite ready from the college days to the adult days to quite back that ass up. Some changes would have come from aging and
people getting married and having kids and general adulthood but it wouldn't have been this dramatic. I love the new stuff like the Spartan I did this weekend next to my wife but I also know the Spartan came out of the media and an invite out of then. Elaine and I did it together and this was one where we did it all on our own just quietly side by side. There something comforting about it being just to do it with each other (there was also something comforting about finishing at the same time as opposed to last year when we did it separately and she had a faster time). In the Cowboys stadium, maybe, maybe I would have heard of this then too and wanted to do one in a place where it's fun to be an athlete not just a spectator. This is where my father in law most impressed me in giving me Cowboys paraphernalia as a gift once. The day is not likely coming where I'm gracious enough to return Washing Redskins gear. 

Would I have been better to not have the surgery and risk death earlier but a sharper brain longer? I'd be less known by a disease or a forgotten pastime of running. I don't know but somehow whether better or worse, if I'm honest, I'd give it all back just to have more of the writing up to me. There is a distinct irony to that in that the writing of this blog came out of all that but Elaine was unimpressed with me when we first met because she'd read this unedited blog and joked/thought I was just a guy who napped and blogged. I'm not sure I've corrected that impression but she's read other writings from past days where it's a little sharper both from better language days and more editing. Now the editing about my life is from other people sometimes editing what I actually wrote or what's written about me. 

Who'll be reckless, just enough
Who'll get hurt, but who learns how to toughen up
When she's bruised and gets used by a man who can't love
And then she'll get stuck
And be scared of the life that's inside her
Growing stronger each day 'til it finally reminds her
To fight just a little, to bring back the fire in her eyes
That's been gone, but used to be mine

Still, I know I'm not fully gone. The weekend before I did a scavenger hunt. The game changed from when I did it pre brain surgery. It was app based and Elaine and Kiana and Troy were having to figure out a lot more of the clues. But some of the ones they couldn't get because they were in a construction area that was gated off. Somehow after they told me that's why they hadn't gotten it, we might have ended up with them somehow. It was the friend I've had the longest in Austin who was the best man at my wedding to Elaine. When Troy and I met, Kiana wasn't born and I was 25 and Elaine was 15. But now 13 years later, here we were as a team. I used to be competitive in scavenger hunts but the team names were always irreverent but now they reflect the desire to overcome those insecurities and are usually named "Smarter Than We Look." We won the scavenger hunt. Kiana and Elaine and I and Troy are in better shape than physically and perhaps emotionally and spiritually. From them it may well be true that it's mentally too. Three out of four ain't bad (I'll let you decide what the 3 is in reference too, people or qualities).

So yeah, there are tough days but there enough good ones, the majority of them to where I get a clue that the fire in my eyes keeps growing stronger each day and that things may be gone but the beauty of life, it's still very much mine.

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