Tuesday, October 15, 2013

The Gospel Truth

This blog has stated over and over that it is raw and uncensored... that if you're easily offended or anything in here bothers you... to not read it at all. be warned this is definitely just a remembering train of thought entry. I've made many references to my faith or my questioning thereof in this blog. There are people whose unshakable faith provies their comfort, their joys their meanings. For me, it has had many of those but its not something I do without question. Never once have I prayed to beat cancer... because in the end everyone dies and I trust/hope that if there's Anyone in charge of the universe he has more important things to attend to than my death. Nor once have I questioned or been angry with anyone as to "Why me" but I also have never taken well intended guidance to "simply let go and let God" since even the minister I meet with doesn't tell me what that means. No one has ever given me any application of that at least not with the specificity to actions like my doctors have with medical restrictions or my coach has about running guidance. Maybe it's why I listen to them so readily or maybe that's just because I'm using them for my body. But in regards to faith, I always echo Galileo "I do not feel obliged to believe that same God who endowed us with sense, reason, and intellect had intended for us to forgo their use."  Though I paraphrase it to say that I refuse to believe God gave us a brain and then asked us not to use it... but then again, I have a screwed up brain.

But I've been attending church more regularly this year than I had in quite a while. And currently the church I attend is doing the explore God series (http://www.exploregod.com/) of people's questions and searches for truth. The church I attend the pastor is brilliant and while studies have shown over and over that people with higher iq's are more likely to be atheists, at their best and brightest, this minister could go toe to toe with anyone with the highest IQ. I am not anywhere near what anyone would call strong in their faith or someone who would say everything happens for a reason. Still I also don't have the type of faith that it takes to be an atheist. I mean who would come up against an ipod or a computer and say yep that got there by itself. The human mind alone is complex enough and the universe and gravity etc that I just don't have the faith to say yeah it just randomly got there over time. But on the opposite hand, I got in trouble with some Christian friends for sharing the comic copied here in. And while I got called out on it all I can say is trust in God but lock your car. But one of the issues the minister addressed there was an interesting difference in faith approaches within the Christian realm. Protestantism, the type of church I attend takes the canon as the highest truth. Catholicism places tradition on top and Greek Orthodox takes the individual experience as the highest. I have no great answer which one should reign and the fact that gigantic portions of the world choose the different options may say just as much about humanity as it does about faith...

I've tried to balance these three approaches to truth over the last year as best I can in regards to my life and cancer. I went to Duke because they have higher statistical survival than anywhere else but they also have a mediation room/chapel and counselors and navigators and will connect you with other survivors. I have raised money for what feels like each of those aspects with the cancer research and livestrong and imerman angels and wonders and worries etc. Tonight I attended a brain power hour, a meal support group for brain cancer survivors. I have attended several of these over the last year but tonight was the best attended one I can remember (but then again I have a bad memory... perhaps best reflected by what one of the George Clooney girls said to me as she hung out with me more... I wonder how much you remember of our relationship and I responded with I wonder that too).

Coincidentally everyone there was or had been on the same medication I'm on at some point, Keppra. They spoke of the different side effects, for some it was the nausea and vomiting (they pay more attention to the pattern than I have... I only seem to notice during races), some complained about their high dosage (none ever got to the level I take because the way I push the body makes it metabolize fast), some talked about how it gave them flat affect (I've never noticed that the way I did with dilantin where it felt like I was doing my personality from habit not from feeling it), for some it gave them depression, some how it made them more tired (I'm pretty high energy and have never noticed it during the day but I sleep more than I ever used to with serious conviction). One talked about how they've never really shared it with many people, another was frustrated that his sister had shared that he had cancer on facebook and he wasn't happy about that because he didn't want people to know. I can certainly relate to that as I once took a long time away from this blog and after winning the brainpower 5k and going to get my first mohawk I decided I was going to accept being known by the scars (http://pickingupahitchhiker.blogspot.com/2011/11/known-by-scars.html). They talked about the different kinds of seizures they have, grand mal, blacking out, petite, etc. I have had grand mal and partial seizures, the latest one unfortunately being actually later in the day of the last blog entry (10/10). It was just my leg moving as it has before for a few hours and other epileptic patients have been like "oh my doctor would probably give you clearance to drive." Others have asked, they let you do all this athletic events and bike around but they won't let you drive. Well, part of that is Texas law which is meant to protect you and not me; the other part of is that I'm okay with it because I trust them and if they don't have confidence that the girl in the backseat is safe, I will follow their guidance. Others threw out stats about how they despite that they were given at best a 5 year survival rates, someone they'd met who had the same kind of cancer who was now in their 13th post diagnosis year wanting to believe, some fully doing so, that they would also be part of the minority. As with everything else, it seems they all wanted to believe that their attitude alone would be enough. Let me make this clear, while I have full respect and admiration for anyone who thinks that but I don't share that belief that attitude is the only thing. I really do bet on odds even as a race director recently, a single mom at school, and another cancer survivor were shocked to find out last week that unlike in most split custody households, that I had primary custody. While I wish Kiana had both her parents around most days... well if that's not true I am grateful to be the one who does. I get questioned on this by a friend with a Ph.D in math says "who wins marathons pushing a stroller with brain cancer? some of the things that happen to you don't happen to anyone so why do you think that your brain cancer will take a normal course." If I want to share in that attitude approach, I hope cancer realizes it picked the wrong guy to have a fight with because while I've never started a fight, I've finished a few.

Someone recently put up picture on facebook to say that it's never to late to be what you might have been. Even as I try to acknowledge attitude but not allow it to be the end all be all no more than one approach to faith, I like the hopeless romanticism in that. The guy committed to being single's longest playlist is "hopeless romantic" but to me the thought that it's never too late to be what you might have been is just neither simply true nor false. My degree is in psychology and mentally "normal" people want to believe that depression and schizophrenia or bipolar disorder is just a choice. To me that's as naive as to say you can be just as fast as me by trying really hard. The brain, as confusing as it is, is part of the body as much as the muscles are and each of us has a natural range that we can push and stretch. This may be illustrated by the fact that the Greek guy who ran the first marathon died. Now thousands of people do it  including a brain tumor survivor and some good friends at the Chicago marathon this weekend. And one of the brain tumor survivors at tonight's meal struggled with a seizure while he was playing softball. He had a 90 second seizure and then went back and finished the game. One of the people out there was a doctor and was shocked that with cancer they let him play. I am glad neither his nor my doctors come from the traditional doctor approach of let's ask cancer patients to sit on their ass.  Last Thursday when I had mine, I went out and came in first in a 5k... the leg was sore but... And speaking of sharing the value of experience we both acknowledged how great it was to have a group like that because well none of our doctors have taken the medications we've been through, had the seizures etc...

They shared their treatment stories about how this genetic radiation was $5000 a pop or this MRI at this place vs that place was $200 deductible vs $2000 out of pocket. They talked about how insurance wouldn't cover this treatment or how they asked for some treatments like neuropsychologicals that were denied by insurance. Perhaps showing how screwed up my brain is, it didn't appear anyone had a breaking point where the bill wasn't worth more than "reasonable." I am uninsured and with the way this government shutdown continues who knows what will come of that whole universal healthcare thing but there will come a day where between dying and leaving my daughter broke, it's an easy decision. To quote a musical, "I will not be the reason that my family can't succeed. I will do what it takes, they'll have everything they need."

Some were very urgent to get back to work, one to more gym workouts, one to retirement. One survivor was sure that her brain surgery had cost her no cognitive or physical skills (she was the only one) and I wondered if that was true or if like some of my denials it just took longer to sink in or to listen well enough for other people to point it out. They talked about some new treatments and specific genetic target. They they are far more excited about than is very realistic to me since we're a long way from understanding the brain. But perhaps as Mariah Carey once sang, "if there's one spark of hope left in my grasp, I'm holding with both hands. There is this burning to have a second chance." I am glad I have been given a second chance. And that just means I appreciate life like I always should have cheering on louder and high fiving everyone I could at that 5k time trial. It means I was thoroughly happy to watch two friends get married and realize that if life is a game... well love is the prize. And I'd take it for new experiences like yesterday taking a ride in a real roller coaster for the first time at age 33 with Kiana at age 6 and her sneaking around like scooby doo while I try to run from the ghosts in my head (I loved Scooby Doo as a kid because superstitions were explained through intelligence).  Hell I'd take it if all it meant was watching a little girl put on a sunflower hat and point out flowers.

Working from our traditions, our experience, the canon of data we call science. Which one of those reigns supreme can and has been argued. While none have full authority over the other, at least not in regards to my approach to brain cancer, data is definitely the highest in the pecking order. There are those in science, faith or any approach that would say that you should only take one instead of having a pecking order.  Perhaps but that's my current approach and balancing all of those with a pecking order is all I've managed to do so far and I'm a long way from shifting. I imagine I'll get in trouble for the title of this but gospel while it has come to mean talking about Jesus literally just means "good news." But for me, I am grateful that in the midst of the oddness of brain cancer there is the canon of science, the experiences of both mind and others and traditions like the brainpower 5k arranging groups like tonight. And to me, tonight, well that's very true good news.

No comments:

Post a Comment