Wednesday, November 20, 2013

Because I Am Here

Text by Matt Gray
Photos by Daniel Gray

In 1924, when asked why he wanted to climb Everest, George Mallory uttered the three, now infamous words, "because it's there."  Time and time again this response has been quoted by other mountaineers, used as justification and rational for going to the edge, and offered in place of the much longer, much more complicated explanation which any person seeking wildness and wilderness has contemplated over and over again during arduous miles and soul shaking ascents. While Mallory's phrase is profound, it can also be interpreted as too definitive and as an over-simplification of our most incredible experiences on this earth.

During my last two running stories, I've explored the concept of Wind Horse as an attempt to further clarify my own answer to the question, "why do I want to run so far?" As we quite literally descended into the depths of the Grand Canyon at 4 am on November 9th, hoping to complete the Rim-to-Rim-to-Rim challenge, I immediately returned to this sense of bliss and personal fulfillment found in these other Wind Horse experiences. 

With only the glow of somewhat bright headlamps to guide our way down the first ten miles of the steep and technical Bright Angel Trail, my world consisted of a microscopic area of earth. If it hadn't been for the changing color of dirt beneath our feet, we would have no other indicator that we were covering any ground whatsoever. And when your horizon becomes that minute, you have little else to do than turn inward and contemplate that all-to-familiar question again and again.                                 

But the pre-dawn silhouettes, the sunrise, and the brilliant illumination of day does not offer any reprieve from the question.  By then, we are deep, deep into the canyon.  The sandstone walls rise a mile above us. The trail creeps and bends around fold after fold of inter-canyon geology. Our horizon is no longer minute, but the incomprehensible expanse of the grandest of canyons makes us feel small, not only in this present moment, but infinitesimally tiny in relation to time and the millions of years that the canyon represents.

Does such thinking about our magnificent insignificance deter us from finding the will to put one foot in front of the other? From waking for another day? From thriving in another moment? No. Nihilism has no place amidst such a beautiful landscape.  In fact, quite the opposite is true.  We are not deterred, but determined: our will is strengthened, our resolve to carry on made firmer.

And just as we are nearing the edge of the North Rim and coming to terms with our existence, we are tested again. A dozen other Rim-to-Rim-to-Rim runners pass us already on their way back south, moving faster, lighter, freer of pain. How are they in such better shape?  Where did we go wrong with our own preparations? Several other runners on previous days have also left their mark on our minds and on a chalkboard just a few miles from the trail's end. Even this remote experience that we thought we were having is not unique. So why then would I want to run and suffer and go beyond and travel to the edge and climb mountains and traverse canyons?

Because I am here, and as long as I am here I am going to savor the hot taste of life and thrive in every moment given to me by the unwieldy probability that I even exist to begin with. I will run, simply because I am here and I have the privilege and opportunity to see the grand and miraculous expanse.

Friday, November 8, 2013

A Little Bit Louder

The guys are on the road to their adventure as I type.  They'll hit the trail at 4am tomorrow for their self-supported, 48 mile, run of insanity.  I've been thinking a lot this week about the power just a single voice can have, and I hope that we can combine our voices together to be as loud as we can to raise awareness.

I recently read a blog post on lymphedema and acupuncture.  The author’s purpose was to debunk the idea that acupuncture would be useful in treating lymphedema, but I got the sense that the real driving force was to just debunk acupuncture in general.  True, treating lymphedema with acupuncture could potentially be a very bad idea.  You really want to avoid any break in the skin in a lymphedematous limb, including acupuncture needles, but needles elsewhere in the body aren’t an issue.  I personally am a huge proponent of acupuncture, as I myself have experienced transformative results from acupuncture treatment, but I get that there are folks out there who see the world as black and white, with no areas of gray, and research on acupuncture is kind of a mixed, gray, bag.

Well, lymphedema is basically a whole world of gray.  You frequently hear that lymphedema treatment and management are an art not a science, and my experience holds that to be true.  I think that is why there isn’t a whole lot of research done on lymphedema: it’s not something that some (many?) scientists know how to approach.  I’m being general here, and sorry if I’m offending any of you science minded folk, but I am not one of you, especially when it comes to my daughter.

Being a mom has taught me that following my instincts is almost never wrong.  In fact, I have, in the past 17 months, not once regretted a time I followed my instincts with regard to Juniper.  I have, however, regretted many, many times that I did not go with my gut, and instead went with logic.  Lymphedema treatment is much the same way.  There is no chart you can cross-check symptoms against, because it is so different for each person.  You can go with a basic understanding of what works and what doesn’t, but from there you have to forge your own path. 

This blog about lymphedema and acupuncture really riled me up because the tenor of the article was that lymphedema is a problem that is going away.  The author cites statistics, which state that since fewer patients are having lymph nodes removed, fewer patients experience lymphedema.  Well, hurray!  That means no more lymphedema, right?  If you’re reading this, then you know that’s not the case.  Lymphedema still happens to breast cancer survivors (and survivors of other types of cancer) and lymphedema still happens to kids and adults for no apparent reason.  Blogs like the one I spoke about aren’t helping us spread the word. They’re helping to sweep lymphedema under the carpet as a condition that ‘not that many people experience’ or that ‘just isn’t that big of a problem anymore.’  We need to have a louder voice than theirs.

 Please help us spread the word.  Lymphedema still needs research funding (in my opinion more than ever), and we still need support for the Treatment Act (again, more than ever with how polarizing health care issues are now). 
Then and now, like the race day mohawk?

Saturday, November 2, 2013


The Lymphedema Awareness Team is running the Grand Canyon, a one-day trip from Rim to Rim to Rim on a 48-mile trail.  Instead of raising money, we’re focusing on raising awareness.  Those of you who follow us know how lymphedema has impacted our lives, and how it will impact Juniper in the years to come.Lots of people out there are in the dark about this condition.  Primary lymphedema is rare, but lymphedema as a result of cancer treatment is less rare, and, unfortunately, lots of times folks are not told about it as a potential side effect of their cancer treatment.
Heather Ferguson, founder of the Lymphedema Treatment Act, is asking all of us to get involved in the effort to bring Lymphedema out of the shadows.  She’s hoping we can bring lymphedema into the public eye to help people get properly diagnosed and get the treatment they need to manage the condition. 
Like Heather, I feel incredibly fortunate that I have the ability to research and advocate for the best possible treatment for Juniper.  Not everyone is as fortunate, and untreated, lymphedema can be very, very bad.
Help us spread the word about lymphedema.  Share this post, follow this link and request some cards to pass out in your city.  Write your representative.  Act.