Thursday, June 11, 2015

The Happiness of Pursuit

One of those great declarations says that we are all created equal and are endowed with certain unalienable rights, among them life, liberty and the pursuit of happiness. While waiting to show up to get MRI results, well,  I have no question how alien it feels to have someone else be the one who has a better idea of what my brain currently looks like. It certainly doesn't feel right that it seems that someone else has the liberty to more accurately interpret what's going on with something that could threaten my life which could certainly affect my happiness.

It is perhaps that reason, that OCD wants to have some say in this disease that I always take a copy of the CD home. After the last MRI, I was given a new Mac computer for Christmas which I've loved but on that day I despised it. Well let me take it back a step and say I was amused to realize my MRI was on national running day. I personally think everyday should be nationally acclaimed for running but as is my typical custom I ran home from the MRI. I always say I'm not sure if I'm running to or from something but that day, well that day I knew I was running from a machine I hate to a home I love. And then when I went to look at my CD, to pretend like I knew how to read it, there was a notice on it that, unlike in windows, it doesn't just automatically work. In fact it said this does not work on Mac's so for the first time in years... I didn't get to see my MRI before hearing the doctor's interpretation. 

The time between the test and the results the clock seems to be a lot slower but we did what we could. Kiana did her own run on national running day. And then we went to a concert in the park where on the last school night Kiana might have gotten permission to stay out later than usual and to bed well past normal time (shh don't tell anyone). 

And then Thursday June 4th when I would find out the results, I tried to find ways to stay distracted through the morning. It was my little brother's birthday so I started remembering funny memories like when we went camping and his head was on fire which I reminded him privately by posting it on facebook (if he was wittier he might have retorted with at least my fire was outside my skull but he's probably too kind to say that on MRI results day). Then I showed up to awards assembly where Kiana was one of a vast minority of students who had perfect attendance. I can't say I am not super proud of this since I'm the one who walks her to school almost every single day and because it sends a message I hope to always encourage, you can't make any difference without showing up. 

Then that wait which always seems endless ended with results that the MRI was still stable. Nothing had gotten better,
nothing had gotten worse. There was one thing that had never been there before which was fluid but apparently the body sometimes wants to fill empty spaces with water so the doctor said that unless I am getting really bad headaches, it's nothing to worry about. I am a constant pain in the ass but there have been no headaches. And then the guy who I've seen twice so far this year let me know we're going to take some space and not see each other again till December :). Actually, when we last met, he was telling me about some new studies and progress that was being made that could be dramatic but this time he didn't share anything like that. He simply said at one point "Maybe you'll be one of the lucky ones who this never grows on." He's never said anything remotely close to that and I have no idea what prompted it but perhaps my roommate who had gone with me caught it better than anyone because he immediately texted it to me. We would talk about the Boston marathon and upcoming races and events. There's many reasons I trust this brilliant mind but it's because despite being quirky enough to become a brain specialist and to wear bowties (bowties are cool; I've started wearing them since I met him), the reason he's a good doctor in my book is because he's a good human at sharing and receiving humanity. 

And somehow breathing easier I headed back to Kiana's end of year party at school where the girl had ended the last quarter of the school year with straight A's and improved behavior assessments. I hope she holds on to these skills and realizes that success is a marathon not a sprint. I don't know if there will be any more stroller races but she's done enough of her own races now to where I hope she goes from being pushed, to being besides her to doing things on her own in due time and that's the parallel I hope goes along with all of my parenting and when all the pursuits become entirely her own.

But before I knew the results, I knew that no matter what they were I was flying out the day after them to head to the east coast once again to help out with a couple of cancer causes. I got to be part of the inaugural team Livestrong marathon (first time I qualified for Boston), part of the inaugural Brain Power 5k (first race I'd won since college), the inaugural head for the cure 5k (first race Kiana won her age group) and now I got to once again join Voice's Against Brain Cancer. Their 8k in Central park in 2013 was the first and only one of 3 times I've ran faster with a stroller than without. I actually had not done a 5k on my own since the previous September when I won the brain power 5k and while I've kept running, I am well aware that the fast twitch muscles are different and hoping they worked. I couldn't resist starting the playlist with a song from Jersey Boys which feels the way  my life is on the good days, which is most days, that it was just too good be true. And while I've never prayed to beat cancer, figuring that there's plenty people who deserve God's attention more, I know there's been plenty of people who have done it for me and of course as I ran around there, I thanked God I was alive.

I don't usually write on the boards, not really thinking there are not adequate words evenn as a guy who talks and writes
too much. But I know that the first race I did with that was with Brian Conley who has passed away from brain cancer just a few weeks ago so in my head, in my heart I'd be running for Team Conley wearing my Duke gear, reminding me of where our paths had first crossed. It helped to start the race with a text from his wife to kick ass and take names. I gunned out with conviction, smiling at the guy who said since it was Jersey he'd bet $500 that I'd win it. I did win so I felt like I'd gotten the kicking ass part right. Fortunately, I was also given the privilege of introducing and announcing the courage award winners. Two years ago I was one of the recipients of that and I felt both fit and unworthy to be the one giving them in 2015. Each person had great stories like the person who put off surgery with multiple seizures to graduate college which was a long time and a lot of effort. There was a writer who did a great job of encapsulating her story and echoing those of others.. It was a tough moment for me to give one to a widow of someone who had passed away who had been at the first event I was at. It gives you perspective and I couldn't do anything but give her a hug. So I didn't take enough names but I certainly felt the honor of recognizing some good ones. I don't know where or what they'll do with those medals but I hope, I hope they serve as a reminder that there is a community that supports them, a gentle nudge like when someone puts soft fingers on your back because they don't know quite what to say but want to remind you they care immensely. Being surrounded and meeting people who were affected by brain tumors, winning a 5k and handing them awards. I'm not sure there was a better way to spend national cancer survivors day. 

The next morning I flew out to DC. It was an interesting reflection to go from Voices Against Brain Cancer to One Voice Against Cancer. E pluribus unum, from many one, is an idea shared a lot in the US government. And so to arrive from an agenda that's very specific to brain tumors to one that was about cancer in general felt fitting. Almost 50 organizations had joined hands that day. There was a lot to learn about appropriations, about the fact that government cancer research used to give grants to 1 in 3 trials, now it's 1 in 7. The funding for the cancer institute has not kept up with inflation and even when NHI has gotten additional funding it has not received it in proportion. We would meet with each of our state Senator's and House representatives. I'd love to tell you I met a bunch of bigwigs but while some delegations did ours would meet with representatives of representatives. I didn't know how long those meetings would go so I did my workout that morning at the hotel gym at 6 am. There were plenty of the One Voice Against Cancer folks already plenty of sweaty so it reminded me that while we are against a disease, I think most (all) of us were there pro health. My partner in crime was someone who had done this 3 times and was far more polished which I appreciated. She mentioned she appreciated my conversational approach but when you're a rookie that's the only approach you can really take. Each meeting felt better than the one before both in how we were presenting and how it was being received... Perhaps that's no coincidence. But I took each of their cards and they wanted follow up and well they're going to get it. 

This is DC and things don't happy too quickly. Generally speaking long lasting things occur fast and certainly not in government. Still when all my meeting were done, I took in a few of the memorials in a very quick walk before heading to the airport. I caught the new MLK memorial (a man who I've blogged about before) that said out of a mountain of despair, a stone of hope. The cause he fought for was obviously different but it was intriguing that a guy who fought for so long to move things now was encased in a very solid way. This is perhaps the way some great change often happens, that active pursuit that if you do it happily even if it doesn't have the, will become something far more stable.

Still, in a recent crossfit workout, it was the first time I had done a team one with racing. My team was never in the lead but I kept helping in as many ways as I could. My Pr's are always in races where there's someone not too far from me ahead and not too far behind, the happiness of pursuit. This was the first time like that in crossfit and it was my favorite workout (it might have helped that while we didn't win we passed some people before the finish). Some of the people in Jersey, in DC while it was their first time for that organization or that event had done things like this before. Our ongoing pursuit had achieved things happily along the way but not nearly enough so we had to keep going. 

But in the middle of all this, I got to be in one of those homes where there seems to be so much love that you almost feel like it's your own home. It was one of those places that has optimism written in magnets and things on the wall and in the spirit that seems to just be in the air left over by people living and loving there. They had a magnet that said count your blessings everyday. While I appreciate the sentiment, after a few days like this, writing this blog where I realize each paragraph could have been it's own entry and this is just a way to encapsulate them in more diary format because they are so worth remember. So counting my blessings, I couldn't help but think there's no way I'll ever do that, I don't have that kind of time and I'm not sure I can count that high. But I'll keep happily pursuing them for the community and I dare dream that we will keep finding that's growing far faster and better than anything negative ever could. 

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