Tuesday, December 4, 2012

Here At the Unknown

Oliver Wendell Holmes wrote that if he were dying his last breath would be to have faith and pursue the unknown end. What I miss most about life part I is how much I used to travel. It was (is?) on my list of things to do to get to the 8 wonders of the world (4 were done before this and that 5th one was the trip cancelled to go to where instead I went to Duke). The reason I have only ever purchased two movies, only ever read 2 books twice, generally only visit places one is because there’s a beauty, an excitement about the unknown. I’ve come to embrace this a lot in the last couple of years… this going with the flow approach, rolling with the punches. I’ve even learned to mess with waiters and waitresses when in a new restaurant to just give me whatever they would have with whatever sides (you would be shocked by how much that messes with some of them).
Kiana’s mother’s attorney has not been willing to negotiate any of the points towards this medical thing. To them it appears to be black and white, which let’s be clear cancer, brain damage, epipepsy, the brain itself are complicated thing so it clearly is not. This unknown, the one thrust onto me, I’ve made peace with. Even if statistics hold and I don’t make 40, I promise you I’m okay with. But I’ve tried to keep it from shaking up my family as little as possible as the fact that I will likely not grow old forced me into some new ways of growing up. I’ve tried to make my life as stable for Kiana, staying through the divorce in the same house. It was incredibly charming last night when as I put her to bed, she said you don’t say “My kiss needs a nose and my nose needs a kiss as much as you used to.” This reflecting a habit of ours and perhaps my favorite thing about the fact that that is the picture that made the Livestrong posters have is her kissing my nose.
So next Wednesday we see if a judge orders my medical records. I’ll live with it either way, the main hesitation with that continues to be that attorneys want to find technicalities instead of big pictures to try to get their way. I’ve been warned by some people that went through bad experiences with that. I literally handed my medical records to her attorney to let her read them in my presence and she said well I don’t understand that so I’m still going to ask the court to hand them to some expert, where they wouldn’t have the courtesy of telling me who. Who the expert is matter, that’s why I go to Duke and Austin’s only neuro oncologist is my doctor. There’s a reason neuro specialists of different varieties are the most paid in their fields.
But I have faith in the judicial system, in humanity in general. Throughout this adventure, people have tried to convert me to the faith of theirs, letting me know that if I do that, I’ll have more peace or I’ll be healed. I’ve been invited to be a Mormon, a Jehovas Witness, Muslim, and Buddhist all within the last month. I don’t doubt that people’s faith helps get them through the day and I have my own but one place where I put faith and I believe it’s worked over and over through this process is in people. Some of that has been in the medical process in my own doctors, though at times when my brain doesn’t feel like it works the way it used to I’ve somehow thought my disease was their fault. But the greatest faith has been in friends and family, especially the ones that know how to hang in there all the time and are both willing and able to be there on the hard days. To quote, Bono if I ever lose my faith in them, there’d be nothing left for me to lose.
At the War on Cancer lecture, they were displaying the causes of cancer. The biggest one was smoking. The second, though the lecturer would later acknowledge that he sort of “cheated” was diet/exercise/lifestyle (ie drinking etc). He would acknowledge that if this was broken down that it got a little more complex as overweight people who exercised were far healthier and far more likely to beat cancer than thin people who didn’t exercise. He would cover some of the other topics like genetics, environment etc. But I was intrigued by the fact that he skipped the 3rd highest cause of cancer (or the second if you break the combined one down), it was simply unknown. I have a disease in my head that has no known dietary, genetic, lifestyle or environmental components. It is the definition of a gigantic question mark. I am comforted/annoyed/intrigued by the fact that my doctors/friends/strangers point out that “you’re doing everything right” by listening to medical restrictions, being compliant on meds, shifting up the diet, staying healthy, enrolling Kiana in counseling. And I don’t believe I’ve done everything right but I do like my batting average but even so, so much has gone so unexpectedly right and so unexpectedly good. Yesterday, as we have before, I pretended to collapse and have Kiana find my phone in my pocket and call 911 (all but the dial stage). But then we went walking to Thundercloud where we won the gift certificates too from the Turkey Trot and I called the city of Austin and we’re considering staging a live thing. She’s done it with a counselor and with me but we may actually do a “live rehearsal.” I hope this never happens but maybe it’s worth trying. It hasn’t been settled.
For a guy who keeps a pretty structured environment for his child, mine is simply running. It’s turning out to be Kiana’s too who 3 months into the marathon kids program is 13 miles done. They get me all day as a volunteer today before I do a track workout tonight. The reason I love this run less, run faster program is because it tells you what distance to run and at what speed to run it in. I guess some people do this with books, movies, food etc. I do it literally by getting some direction in how to put one foot in front of the other.
The unknown will be a part of my life for a long time, if not till the very end whenever that comes. That’s tough for the guy who was class president, team captain, board member. Those of us who do things like that is because we want to have some influence over the shape of things. And I don’t on some very big things. I still get pre race jitters but that nervousness, that doubt feeds some energy and shows that I still care. Yeah, I have some serious doubts now that custody is being challenged on my medical reasons but I have faith in the friends who will be testifying on my behalf even as I have doubt. Lilian Smith wrote            
Here’s hoping that holds.

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