From Kati: Reasons to smile at strangers

The days are getting longer and the traffic was light today, so I had time to go on a run of my own after I got home from work. My leg can’t handle more than a couple of miles at a time, which is a convenient excuse for me to curtail my mileage to a leisurely thirty to forty minute cruise.

The colors of dusk still lingering at six pm, the drowsy, sweet aroma of blossoming Bradford pear trees, the impossibly happy grin of daffodils– as I ran, I noted these signals of spring’s approach. I counted twenty-two dogs, twenty turkeys, two cats, and a ruby-throated hummingbird. Marissa wrote this weekend about accretion and I suppose that’s what I do all day and especially when I run – I let a list of little things build up in my head and my heart, a register of things that make me laugh and smile, and those little things accrete into enough gratitude and joy to wipe out just about anything bad.

That list, just from today, is filled with a lot of things. At work, I billed an invoice to an address on “Secret Town Rd.” Why is the town secret, but not the road? Does the road lead straight to the secret town? When I took my lunch break, I saw someone has invented a machine to wave signs on corners, which made me laugh but also made me a little nostalgic.

Mostly, though, it’s people that make me grateful. I ran past a woman who was standing in front of a row of barren rose bushes, gazing at them as if her hope alone could somehow transfigure their bald stems into floral splendor. I liked her. I liked looking at her, and imagining what her life was like. Later on in my run, I spotted a single white rose in perfect bloom, and I appreciated it for the both of us.

I don’t feel bad about all the people watching I do, and I’ve noticed all of us who partake in a little evening fresh air are getting bolder with our eye contact as spring creeps in. The promise of long nights and warm days is making us kinder, and it shows in our gazes and our tentative smiles.

Lymphedema has made me more comfortable with the stares of strangers than I ever thought possible. Becky can testify to the odd glances we received as I wrapped myself in the Rome airport. Leaning on the wall of a little Armani store, my rolls of loose bandages unfurling out into the walkway as I concealed my leg, I must have looked like the most inept possible threat ever to set foot in a terminal. Yet people are also so kind—they hold doors, they help me with my luggage, they offer to roll my bandages, and they ask with genuine curiosity what happened and are you alright? Many of us look down and away as we go about our lives, afraid to meet the eyes of strangers. In seeking to avoid judgment, we miss the literal flood of generosity and empathy so many of us keep inside, waiting to share.

Like a nice spring run at dusk, all of this meandering has at last brought me to my destination, my best grateful surprise of the whole day. A whopping $6, 605 raised so far for lymphedema research! Thank you all so, so much for your support. I hope to see you all very soon, look you in the eye, and give you my thanks in person.

From Marissa: Accretion

Sometime in the past few years, I learned the word “accretion.”  I’ve latched onto it because, to me, it makes sense—this is how things happen, this is how we reach goals, this is how change is made possible.

Accretion means growth or increase through gradual accumulation, typically by layers.  In geology, layers of sediment collect and compile.  In astrophysics, massive objects grow through gravitationally attracting matter.  In finances, assets increase over time.  I imagine accretion as layering—with an end product like, say, lasagna.

To me, the experience of running is also metaphorically akin to accretion.  At the same time, it feels like the opposite.  The miles both add up and peel away.  They are something I carry with me, and something I drop away.  I think, and I don’t.  I move and, at once, am absolutely still.  (I’ve never run 31.07 miles before, but I hope it goes the same way!)

More importantly, this fundraiser—this movement to advance research of the lymphatic system to find better, more effective treatments and, ultimately, a cure—is a testament to the power of accretion.

Through the generosity of more than 37 individual donations, together we have already raised $6,000 for lymphedema research.  How cool is that?

So while massive objects, orbiting in outer space, gaining mass and trailing gas across the galaxy, are beyond my mind’s comprehension, it is our collective efforts—from far and wide, from all walks of life, for the cause of finding out more about lymphedema, to improve the lives of a lot of people—that astound my heart.

To everyone who has already contributed to lymphatic research, thank you so much.  For others, if you would like to donate to research of the medical condition lymphedema, please visit our Donations Page.  

From Christine: Run like you mean it

I run to calm my soul, to give it a break from the overwhelming amount of interference it tends to battle on a regular basis. It’s the one-hour of my day (sometimes a bit longer if my real-world duties will allow) where I try to let everything go. When I put up a “do not disturb” sign for myself. I escape from emails, phone calls, text messages, any form of outside communication in order to recharge. It’s just me, my inner thoughts, and the road ahead; my happy place.

Running is part of my identity. It’s not just an activity for me, but rather a way of life. It’s a way to learn about myself, to challenge myself, to push myself beyond limits I didn’t even know existed, while in the end still providing me the comfort of an old friend all at the same time. It’s a humbling experience some days, especially when my mind, body, and soul feel misaligned, but that’s exactly what keeps me coming back day after day. There’s a wonderful sense of beauty wrapped up in that struggle towards triumph, which makes the completion of such miles that much more rewarding.

Last August, Marissa and I were sharing our more recent running challenges and triumphs as both of us were preparing for our upcoming marathons. I was training for my first, the Chicago Marathon that October, while she was looking ahead to her fifth (she’s a champ, obviously!) in Davis later in December. It was during this conversation that Marissa shared her vision for wanting to run an ultra marathon in the Spring.

When she first said the words “ultra marathon” my immediate gut reaction (in my head of course) was, “Oh my goodness! Seriously, 31miles?!?! Definitely don’t need one of those on my ‘bucket list’.” However, as soon as Marissa spoke about why she wanted to do this event, my next response seemed to fall out of my mouth even before my brain had time to process, “Do you want a running buddy? Can I be your running buddy? I want to do this with you. I want to support you and Kati.”

Marissa and I had made a promise to each other years ago to run a marathon together someday. So why not “go balls out!” as Dan E. would say, and make it an ultra, for an ultra special person – Kati Vastola.

 “As long as we have the road, the ramblings, and each other to look forward to, it’s all going to be alright. Bring it on, life – we’re laced up and ready.” - anonymous

From Kati: A little on lymphedema

Lymphedema isn't that bad. But it could be better. This is the limbo I find myself in daily, as I mummify my leg in 50 feet of bandages for nightly compression, or tug on my thick stocking with its itchy silicone band and stiff fabric that pinches behind the knee. While going through the daily trials of living with an incurable but unthreatening condition, I take it for granted that I have a first-class support team. My family and friends have stepped up to share every burden short of absorbing my excess lymphatic fluid, and their love makes it possible for me to live almost as I would would without lymphedema. 

Not everyone is so fortunate. Many lymphedema sufferers struggle to obtain proper treatment or coverage for therapy and garments. Unlike me, many people with lymphedema are barely able to walk and have a hard time holding full-time positions, exacerbating lymphedema's financial hardships. Additionally, lymphedema can affect any part of the body. From personal experience, I know how our disfiguring medical condition wears down self-esteem. My frustration with my swollen leg pales beside the emotional and social costs of individuals whose condition manifests in their hands, genitalia, or face. 

For all of us affected by lymphedema, there is the unending anger at questions that seem so simple and yet go unanswered. In this age of particle accelerators and speed-of-light cameras, when we can see inside of atoms and name all of their parts, no one is able to look inside of us and tell us what is wrong with our bodies. The explanations for lymphedema remain mired in 19th-century science. But we know the 21st century has a cure. 

My older sister Marissa has stepped up to lead the charge by organizing a run to generate funds and promote awareness of lymphedema. Please join my family in raising money to flush the stagnant backwaters of medical knowledge and get the lymph flowing through thousands of bodies. My lymphedema isn't that bad, but with your help, we can end all lymphedema forever. 

From Marissa: Going Long for Love + Lymphedema

I wish I knew more about medicine and the human body.

Sometimes, I wish I was a physical therapist or a doctor.  That I had gone to medical school.  Or trained in a field that would allow me to advocate for my sister and other individuals with lymphedema in real, tangible ways.

Though I do not have those skills, I do know how to write and I do know how to run.  So I will run a 50 kilometer (31.07 mile) ultramarathon to raise money for medical research of the health condition lymphedema, and record the journey along the way on this blog.  I am excited (and a little scared) about participating in The Grizzly Peak Trail 50k on April 7, 2013.  

My little sister Kati, who is 22, has lymphedema.  

Lymphedema is a disorder that causes protein rich lymphatic fluid to accumulate in interstitial tissue. The result is swelling, usually in a person's arms and/or legs, though sometimes in other body parts.  There are many potential causes, ranging from hereditary with no known catalyst (primary) to lymph damage through radiation or trauma (secondary).  Individuals with lymphedema often face constant physical discomfort, emotional distress, expensive and time-consuming medical maintenance, risk for serious skin infection, and the need to modify or limit activities they love (like, for Kati, hiking, running and sitting for extended periods of time to read).  Click here to learn more about lymphedema.  

Before my sister began to develop symptoms, approximately three years ago, I'd never heard of lymphedema.  Over the past couple of years, as Kati has seen some of the nation's leading specialists, I have been surprised and disappointed about how little is known about the disorder, and the lymph system in general.  Despite the power of modern medicine, there is no cure.  The status quo is lifelong maintenance.  It is an underfunded field in medical research.   On the bright side, there is something we can do.  We can raise awareness and money to fund research to find effective treatments and—I deeply hope—a cure.  

The Lymphatic Research Foundation is a non-profit 501(c)(3) organization devoted to medical research for lymphatic diseases.  I am choosing to designate funds toward The LRF because I believe that making progress in medical research for effective treatments and cures is a key to helping patients of lymphedema, like Kati, in the long run. 

Please join me (and my close friend Christine who will make this run with me) in taking steps toward better, more effective treatments and a cure for lymphedema.  Your financial and emotional support are deeply appreciated.  If you would like to make a donation, please visit our fundraising site here.

With love,

Marissa

P.S. For those of you in the Bay Area, we will also be hosting a fun awareness-oriented hike in the Oakland Hills on Saturday, April 6, 2013 (the day before the race).  More information to come.  Please save the date!

Course elevations for the Grizzly Peak Trail... Whoo-wee!