Friday, November 9, 2012

Useless Breath

So my retirement officially kicks in December 25th, well not actually then but the nearest business day to that. Christmas of all days. This has been a strange week psychologically, like much of this journey with some high ups and high downs. When the letter came in both doctors and friends said congratulations… I am not quite sure I understood that. There is an New York Hispanic musical called in the heights with two songs that I’ve kept listening to trying to balance my emotions between them… one is a girl singing a song called Breathe ( about a girl who is struggling with what she’s doing with being the first in her family to go to college, a song that was on the playlist for that 10 mile run that I kept at a sub six pace and is on this week’s 5k race playlist. The other is a song called inutil, useless about a father struggling with providing for his family (
I will not be the reason
That my family can't succeed
I will do what it takes,
They'll have everything they need
Or all my work, all my life
Everything I've sacrificed will
Have been useless.

Ironically while the $2000 a month paycheck from the insurance, a guy whose never been that materialistic will be just fine with that, it still feels like losing. And ironically it was the week I’ve spent the least amount of time sitting around home for a while. Monday I was at Kiana’s school, Tuesdays I spent 14 hours working the polls at the election. That was a great day where the clerks and judges loved me and I met people and interestingly enough some of them knew me from the posters and one neurologist asked if I had a craniotomy… and then I had to deflect the conversation when she asked what I thought about Obama care. 

I chipped a tooth this week as well. I wish I could tell you a great story but I was fixing a flat tire and in frustration while having a part of the pump in my mouth bit too hard. I went to a dentist the next day and perhaps in hopes and awareness that there may not be a medical appointment this entire month… I signed up to finally have a tooth fixed that’s been a problem for a while. It was a friend’s recommendation and it as 20 miles there and back, the dentist said he thought it was cool that I was still exercising and while it was the first time we met, I acknowledged that I am sure I could use an app for the bus or get a ride but that it was a way to still feel like I could beat some of the side effects of all this, somehow not just succumb.

I had lunch with Kiana this week 3 times and was the mystery reader at her school today. It was about a half hour reading where I read Dr. Seuss books like Horton Hatches the Elephant. The book there is about an elephant hatching an egg when his mother leaves unexpectedly. Obviously the parallel isn’t great but it felt like what this custody battle is like. Kiana loved having me there and while I’d love to tell you that I always read that well, I practiced quite a bit to try to keep a bunch of 5 year old’s attention. I’ve done public speaking since I was 12 years old and I’m pretty damn proud that was the most captive audience I’ve ever had (though I didn’t say damn in front of them). 

There are obviously places I still feel useless… this weekend is Celebracion, the biggest tournament Austin has ever had and that I had run for several years and the first I ever played. This year will be the first time I miss it but I want to stick with my commitment that Kiana comes first and I couldn’t get her mom to trade weekends and unlike a race, this is an all weekend commitment. This was the tournament I played a few days after getting out of the hospital, the only time I’ve ever won it though in simple frankness I didn’t play much fresh on some new meds. This year, the first year that I did not attend the national ultimate championships in half a decade was the best results all the teams I’ve ever had with doublewide bringing home the first national title. I didn’t even get to watch it though it was streamed live because I was at a Halloween function with Kiana (you better believe I watched it after) but I am helping plan the party celebrating it all in a couple of weeks. 

I continued to work with the Department of Assistive and Rehabilitative Services who are confounded as to quite how describe some of disabilities if and when I get back to work. They said it was “obvious you had confidence” but how you describe things like your problems is difficult… they appreciated the fact that I was volunteering places but this 3 in a million tumor with odd side effects kept being one big question mark. The restrictions got them to where they were frustrated to talk to me about not being able to be on a ladder or outside… the guy who put off brain cancer surgery to run a marathon, who bikes all over town being told he shouldn’t work outside because of liabilities, the ones I waive for athletic events… life is strange. 

Kiana and I started our Holiday cards this week (if you read this and I don’t have your address, send it to me!). Last year we had more than we ever had and this year it’s even more. I wish I could guarantee everyone I send one to a gigantic gift or the entry to heaven but if nothing else, I get to say thank you in a subtle way. Ironically, oddly, the top, bottom and center pictures of all of those have been on posters, papers or fundraising emails for various reasons. I acknowledged some of the weaknesses to people who helped me with the cards from Livestrong to get it to the staff, all of whom are wonderful but some who have gone above and beyond. Kiana’s daycare direction got descriptions of who I wanted to drop off cards for. Facebook got used a lot to track down this face/name recognition. Kiana filled them all out even drawing flowers on some and she added 3 to the list on her own, my favorite being the lady who helps her cross the street and I should have definitely taken a picture of the envelope. 

Not being employed for a disease is not comforting even if some people say congratulations… and it makes me feel at some level useless but I’ve already signed up to volunteer at Kiana’s school, she didn’t attend daycare this week on any of the days I had her, I’m already signed up for her first school trip in December. I ran 15 miles yesterday at a 7:06 pace all by myself and finished with enough time to go have lunch with Kiana. As I dropped off the cards for the Austin marathon staff, they said it was awesome that I was still running with all that’s happened but I acknowledged as I always have that it’s how I hope and I cope, there are just those who think it makes a good story. If you’d met me 2 years ago, you wouldn’t have heard much about my running but I leave it out there because it’s an area in my life where I literally have not lost a step. One of their staff seeing some of my times tried to give me one they had gotten when they were 46… he said beating that at 46 should be your goal. I told him let me make 46 and we’ll work from there. 

Some of this is exhausting of course. Ironically, I am an extreme extrovert who draws his energy from crowds is now a little more intimidated by them because what if he doesn’t recognize people… I wrapped up an agreement with my previous employer in which we agreed to (non disclosure) and from there I literally biked to my old job where I dropped off some holiday cards quickly and left… even leaving one for an administrator trying to prove what I always said, that it wasn’t personal.

My daughter is in bed (mine as happens far too often) after we did some homework tonight, read some stories, drew somethings and made dinner together. I am never signing custody off until my doctors and/or friends clue me in because I fully believe that I am capable of parenting and running and those are my 2 standard questions at medical appointments. I’ve realized that some of the things I said to her in what I thought as a useful conversation on Halloween were, in my opinion, twisted into legalese and as I’ve said before, it sure helps being divorced when you don’t recognize the person. But Kiana’s teacher let me know at the end that was the most engaged that the kids had been during a parents reading (given enough preparation, I suppose I seemed very spontaneous). In parenting, in that I am useful and for that I’ll keep breathing.

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