Monday, October 20, 2014

Don't Stop Us Now

There are many reasons I love Livestrong and have done many events with them. But as I was getting dressed in that much too tight fitting bike clothes Sunday for my 4th 100 mile ride with them, looking once again to ride a "century," I put on some pump up music. It was a cover of Queen's Don't Stop Me Now (https://www.youtube.com/watch?v=h-OTYT02W7E) the lyrics of which surely encapsulate part of the Livestrong mantra, attitude is everything.

Tonight I'm gonna have myself a real good time
I feel alive and the world it's turning inside out Yeah!
I'm floating around in ecstasy
So don't stop me now 

don't stop me
'Cause I'm having a good time having a good time

I don't want to stop at all.

I suppose I should step back a second and realize that like all Livestrong event was so much more than just the athletic part. While officially it started with a special event Friday night, for me it started by picking up one of the Livestrong leaders, Scott at the airport and meeting with another Steve for lunch. I had not seen either of them in a few months or so but we'd traded messages, emails and they had both donated to my fundraising causes. I was amused Scott thought it was too much hassle to ask to be picked up by me, the guy who'd taken rides for most of the last four years due to my driving restriction. Scott and Steve had gotten together and taken a trip to the Grand Canyon this summer, and while cancer had done us all harm personally and by losing parts of our selves, deeper parts of home because of the death of friends and family along the way, including Scott's wife. Some losses like that and that this is the way guys immediately fight back is nothing short of ridiculously impressive. Still, it's lunches like that where the other part of the mantra came through, unity is strength and a few laughs and stories reinforced the fact that while living and perhaps after, we are brothers in arms. The connection of how we grieve, how we love, to me is incredibly special and even if everyone does similar things, I am grateful to not have missed awareness that connections are incredibly special.


The "official" beginning to the Livestrong weekend was the Grand Finale of the Big C competition (http://bigc.livestrong.org). This has a contest that has been going for a while where over 700 entries had been submitted and we were down to the 5 semi finalists and going to see their presentation. Livestrong knows that cancer research for a cure has made some progress in some areas and less in others (the brain cancer survival rates for example have barely budged in over a decade) and so the beauty to their approach is that there are aspects of cancer that have daily cures.  And so here the third part of the equation, knowledge is power showed its evidence. The five finalists were somehow both big and small... There was one literally from the other side of the world, in India where despite the fact that 1 million people are diagnosed every year there is nothing near a nationwide network connecting them. There was TeVido using a new 3D bio printing of a woman's own cells for reconstructive breast surgery. There was Adhere Tech patented smart pill bottle dispenser to help remind people to take pills correctly and if they've done so. Having my own nowhere near that smart dispenser due to my memory issues and haven given one away to someone who struggles with chemo brain so that was one I relate to. Restwise was an app about managing fatigue in order to rehabilitate faster; both as an athlete and as a patient whose had to take breaks and never wants to I was impressed by the simplicity and the beauty. The 5th was decisive health which helps patients understand different treatment options and how to make decisions. My doctors couldn't agree whether or not the brain cancer surgery was worth it once upon a time and left the decision up to me. Some doctors thought yes and others no; that medical disagreement got me to have friends come over for a poker game what I asked what they would do and there they also couldn't agree. Perhaps my decision would have been the same with this app but I think it would have been easier to get there with this. In the end the people's choice winner was and the grand prize winner were the same, Decisive Health. Each were great ideas but it may well be fitting that when given a diagnosis or a situation that feels out of control, the fact that we have some say in the matter very much matters. We don't get a choice in being hurt in life but we have some say in how we deal with it. 


While having a 7 year old daughter often reminds me that curiosity is brilliant in its own way and whether from her or with dealing with cancer, I've come to understand the old idiom that there's no such thing as dumb questions, but there is such a thing as better answers. To be both giving platform and competition for those ideas was a great venue to launch intelligence to more practical levels.


Still, without exception, the human connections are my favorite part of Livestrong, always amazed by the people who stay as active members of the community, trying to share forward how we can make the world a better place while dealing with cancer. So, the evening was not just about the ideas but served as a reminder that they mattered because you wanted to share life with good company. There were some moments of joy where I found a couple of lady friends that we are part of an online dare to move group where we "virtually" exercise together and that night we did it in person by doing some push ups together in dress clothes. There was a friend there, Mr. Wright (no wonder he's not single with that kind of last name) who jokingly pointed out that with the Livestrong bowtie I was wearing I'd dressed well enough to meet my next ex. He and I had met when he was trying some experimental drugs and I had just had my driving privileges taken away for the second time; I'm glad we are both still standing and super manly. That room definitely felt where there was a balance of people who knew that by being in each other's lives they both made their own life, the person they shared it with, and other people's live better. That hope that there was a hand and a heart to hold made days and nights easier even if you didn't know or perhaps exactly because you didn't know where everything was always going to stand. All the dancing to 80's music after the presentation also helped.

The next morning was a memorial service for someone I had met at my first Livestrong ride in California, Jimmy Fowkes. Just barely an adult in his young 20's, he had started us off in the 2013 ride and only a few months later would pass away from brain cancer. There had been a memorial in Portland but the fowkes had been such an active part of the Livestrong community that they had to have another one here in Austin. And yet even in grieving, they had chosen to keep raising money to show what Jimmy, a Stanford religious studies student, always had fight (http://www.stanforddaily.com/2014/02/18/outpouring-of-condolences-for-jimmy-fowkes-14/). Their daughter, Jimmy's sister, had been the lead fundraiser for the entire event. A group of survivors who had climbed up to the top of mount Kilimijaro would give her a flag that had gone up there. The affection and attention they had shown both their son and their daughter... let's just say that if I show a fraction of that in the way I raise Kiana the way they always have, I'll be proud of my parenting.

The celebration of life even in the acknowledgement of death and hardship continued. There was a dinner for the fundraisers Saturday night. I was proud to be part of the team that had raised the most money over $100k (I had only raised a few hundred dollars of that.) There would be moments in honor of, in memory of, moments where as people shared the stories somewhere it was clear that the shift in your face and voice was from laughter, others from tears. I got to see once again friends like Linda Santos, the lady who gave me the ring of hope I'm supposed to propose with smiled wondering when a wedding invitation is coming. Speeches were made with some using the more sensitive terms like touched by or affected by cancer. Yet there would be others who would use stronger language to describe why they fight people who on their reoccurred described it "being invaded, violated by cancer," others who share affection about family with the strong conviction that "my father did not die of cancer, he was murdered by it." And yet still in grieving and anger and frustration they smiled at the privilege of having gotten to share life with them and to have those in the audience who understood. There were other cracks in people's voices whether if it was from humor or sadness wasn't as obvious to the audience and perhaps not to the speaker either. But the connection was absolutely genuine. The people in there are intelligent and like all smart doctors and patient, everyone in there knows that everyone eventually dies whether of cancer or from just having been born. But if people like that ever just accept death easily, perhaps all the stars in the universe might just go dark.

The Livestrong ride still continues to be the longest ride I've ever done. I thought it had only been 2.5 years since I started riding but apparently, it had been three centuries and I was ready for my 4th 100 miles. This year, I've gotten a little bolder (reckless?) and it would be the first time I'd let myself go enough faster downhills getting to speeds I've only done on a bike a few times and the longest I've ever let it last. Maybe because of the blazing speed or because it was warming up on the second half of the ride, the song was definitely playing through my head again: I got to ride part of it next to various people, some old friends who were friends and cyclists long before, some friends from recently. Some I'd ride for only a few minutes, some for a few miles..

I'm burning through the sky yeah!
Two hundred degrees
That's why they call me Mister Fahrenheit
I'm trav'ling at the speed of light


When the 100 miles were done, I was tired but smiling. That why it was my kind of weekend, where everyone from volunteers who handed out water or flowers at the end were acknowledged. Those who had the best ideas were appropriately rewarded, those who had raised any money were thanked while the most money were acknowledged for being great achievers. This was only a ride so there was no race but they kept track of your time if you wanted to have some concept. There were those who pushed themselves to ride at all for the first time since treatment, those who celebrated by riding every inch next to friends, those who wanted to be on the ride as long as possible, one friend who even did part of the course twice just to be out there longer. 


I guess life on this planet will end for us all sometime, cancer has done that to too many of us much too soon. There are romantic tales told in books or movies where people try to encapsulate cancer in imaginary characters. In my journey, fact is better than fiction. The people I've met in my own cancer journey, like the ones on this Livestrong weekend, are better than any script I've ever seen from those who are trying to find a way back to work, to college, back to home, to a normalcy with a new level of relevancy about what it means to live. Sometimes they get back their old life, sometimes they have to take a brand new one. There are those who step it up a notch or four and become a force to defy, the best among them perhaps most aptly described as a living poem, who are better than all the literature I've ever read combined. It has and can be hard having met friends along this journey who have passed and others who will almost certainly do so relatively soon and far too early in life by any measurement. But the best relationships, the ones you know there's nothing better than to have and keep them even if they seem to only be a wink in time because of cancer, as much as they hurt when they are open, I'd never take them back to protect myself because they made life more meaningful. Even if we have to be stopped someday, even if we never want it to be at all, for at least one weekend with a few meals and a heck of a ride, I was grateful for them and for all those that haven't been stopped. 

1 comment:

  1. Thanks for letting me be the hitchhiker in this episode. Great seeing you this past weekend, Iram!

    ReplyDelete