From All Of Us - Marissa, Elizabeth & Christine

April 2013 marked the beginning of a worthwhile journey for all three of us.  Our first fundraising event—the Lymphedema 50k Run & Hike—left us inspired and energized to find new and creative ways to continue to support lymphedema research.

We knew we wanted to do another event but we hadn’t yet marked our calendars, when the Lymphatic Research Foundation approached us with the generous invitation to fill three of the eight spots on their official New York City Marathon charity team.

Lymphedema is a health condition that affects 10 million people worldwide, 1 million in the United States alone.  It receives little attention in the medical world, even though it deeply impacts the daily lives of so many individuals.  It’s for this reason that we are dedicating the 26.2 miles on November 3^rd to the goal of increasing awareness and raising funds for research, with the hope of better treatments and, ultimately, a cure for lymphedema.

As friends who have run a good deal of miles together over the years, we are humbled and so excited to embark on this new journey together.

Join us in this effort, by making a contribution on our website: www.lymphedemarun.org

The Lymphedema Run is training for NYC Marathon

The Lymphedema Run is a grassroots organization of people who care about finding better treatments and a cure for lymphedema.  We hosted our first event in April 2013, with a community hike and 50k run in the San Francisco Bay Area.  We are deepening our relationship with the Lymphatic Research Foundation, by fundraising to run the NYC Marathon as official members of the LRF Charity Team, on November 3, 2013.  

Read more about us on the Lymphatic Research Foundation's blog.  

The NYC Lymphedema Run Team: Christine, Elizabeth + Marissa  

From Christine:
I recently started reading Eat & Run by the famous ultra marathon runner Scott Jurek. At the beginning of each chapter he shares a thoughtful quote which could easily stand alone as a life lesson, but more appropriately ties in with his purposeful message found in the few pages it proceeds. One of my favorites happens to be from Jeremy Collins -"Sometimes the best journeys aren't necessarily from east to west, or from ground to summit, but from heart to mind. Between them we find our voice." This quote stands out to me for multiple reasons. It speaks so true to the mission I strive to live on a daily basis (although I admit, some days are better than others), and to my reasons for running, especially those longer distances that most find inconceivable, let alone comprehensible or even joyful for that matter. And it's in those longer distances that I often find myself most at peace, able to focus on one thing, able to dedicate all my energy and attention to a single task, a privilege, I think, in today's world which is constantly bombarding all of us with an infinite amount of stimuli, expecting us to multitask a-l-w-a-y-s.  This single task allows me to reconnect along my journey from heart to mind. It allows for those causes I hold close to my heart to be transformed into action, which in this case means running 26.2 miles with two of most incredible women I know - Marissa and Elizabeth - through the city of New York for the Lymphedema Research Foundation. So if you're still wondering why I'm so excited to run the NYC Marathon in November, it's to continue my journey from heart to mind in support of a cure for Lymphedema.

From Elizabeth:
There is something about the marathon that underscores running’s collective character.  Of course, traditionally speaking, most people do not consider running in general, or marathon running in particular, to be a team sport.  I didn’t always think of running in this way, either.  In fact, part of what first drew me to running was a desire to move away from team sports.  Unlike basketball, volleyball, softball, and other sports I played while growing up, running allowed me to define success or failure on my own terms, to free myself from other people’s expectations (and the myriad other constraints and pressures that accompany adolescence), and to experience some moments, minutes, or hours in the day that were completely my own.

               But over the years, and miles, I have come to appreciate another side of running—one that is profoundly, and quite surprisingly (at least initially), collaborative in nature.  The marathon, in particular, puts this in striking relief.  From the earliest stages of training, marathon running requires the support of friends, coworkers, and loved ones, who deal with the schedule-shifting and tiredness (on our part) that long runs so often entail.  These same individuals provide needed encouragement during training’s difficult patches and cheer for us during its high points.  It is difficult to imagine running 26.2 miles without the forms of emotional and material support (peanut butter and honey sandwiches included!) that those dearest to us provide.  To be sure, race day itself would be utterly impossible without the collaboration of innumerable people, all with different talents and playing different roles—from those who coordinate the event, to the volunteers who help sustain thousands of runners along the way, to the crowds who root us on from the sidelines, to the friends and family who share in the joy and sweaty hugs at the finish line.  Perhaps one of the biggest lessons that the marathon has to offer is that, as people, we need each other, and together, we can make amazing things happen. 

              What better reason to make running the New York City Marathon part of our broader effort to find a cure for lymphedema? Having supported Marissa and Christine during their 50K in April, as a race volunteer, friend, and sweat sister, I have witnessed the power of running for this cause to bring out the very best of human nature.  To be a part of this movement, and to train for and run NYC for LRF with two of the women who inspire me most, thrills me beyond description—quite possibly above all because I know that I’m in for an experience that will remind us all of our collective capacity to make change.  Let’s make this happen.  Let’s channel the collaborative spirit and transformative potential of the marathon as we embark on the journey to NYC, and as we continue to work toward a cure, together, as a team.

From Marissa:

I’ve dreamt about running the NYC Marathon for many years, so it especially thrilled me when the folks at the Lymphatic Research Foundation asked if I’d be interested in joining the Team LRF official charity group, to run in November 2013.   

          Since I first learned about lymphedema, when my sister was diagnosed, I’ve been confounded that, in so many ways, lymphedema remains a medical mystery.  As I’ve mentioned before, sometimes I wish I’d chosen to become a doctor so that I could actively seek a cure for this condition.  Yet, while I don’t know the medical specifics of it, I do believe that, through concentrated efforts, an eventual cure is possible.  I also believe that, through drawing attention to lymphedema and raising awareness about its existence, together all of us in the lymphedema community can make a positive difference.  We can draw attention to the fact that advancing knowledge about the lymphatic system is essential.  Further, together we can fundraise to support lymphatic research—to make concrete steps toward better treatments and a cure for lymphedema and other lymphatic diseases. 

          Already, I can imagine what it will be like to run through the streets of New York City—the skyscrapers looming around us, the massive crowds buoying our tired legs, the spirit of the city and the marathon.  And I feel a twinge in my throat and a tug in my heart simply thinking about what it will be like to make this journey—from Staten Island to Central Park—proudly wearing a Team LRF jersey.  I will run NYC knowing that those miles aren’t solely for the joy they bring me.  Rather, they—and the many training miles between now and then—are about believing that change is possible and believing that cures for lymphedema can and will be discovered, to improve the health and wellness of millions of people around the world.  I can’t wait to start striding.    

Visit our fundraising page here.

From Kati, Christine and Marissa

From Kati: Caring
Since I got diagnosed with lymphedema, I’ve cared about my condition every day – wondered whether my leg was doing well or poorly, whether my swelling was spreading, when I would be able to wrap or massage or elevate next. At times, this caring was isolating, something I thought I had to do mostly alone—until this fundraiser, culminating in this happiest of weekends, showed me how many people were willing to care about my little medical condition.

I feel such a tremendous amount of gratitude for everyone who opened up their hearts to this cause. It blows me away how willing everyone is to care, how willing to give in so many different ways: with your words, your presence, your awareness, your funds, and your helping hands.

Hooray for all the caring we did about lymphedema! I’ll go back to caring a little more quietly than I have for the past two months, but without the fear that used to creep in that perhaps I cared alone.

If and when you find yourself feeling like you are alone in your caring, please let me care back about you. You aren’t alone! Whether it’s a personal burden or a broader cause, I can’t wait to show you how much you’ve all taught me about what it means to express real, genuine care.

With lots of love,
Kati.


From Christine: Beautiful Struggle

Abraham Lincoln once said “the probability that we may fail in the struggle ought not deter us from the support of a cause we believe to be just.” Not only is this quote true to life, but especially so when I fondly reflect back on the events of this past weekend.

The word struggle, to proceed with difficulty or with great effort, is one that I have never thought about too closely until now. All synonyms in the dictionary bring about such negative connotations with this word, implying an absence of any goodness available with such actions. To proceed with difficulty or with great effort, I personally prefer the latter, is something we all (donors, hikers, runners, supporters included) did with respect to this past weekend. At times our team had been fearful that we may not reach our fundraising goal, fearful of unforgiving weather that may arrive during the hike and run, and fearful of the possibility that Marissa and I may succumb to an early defeat far before 31 miles. And yet, despite all probabilities that we might fail, we all still chose to proceed with great effort. A great effort of love for everyone in support of a cause we believe to be just.

I feel so privileged to have been apart of such a beautiful struggle. One that inspired me to push myself outside my comfort zone, to proceed up and over 6,000+ feet of difficult elevation change, to run farther than I have ever run before, and to embrace the unknown of my own physical limitations as I set forth to conquer Grizzly Peak with one of my dearest friends, all in support of a cause I hold near and dear to my heart. This struggle is one that I will always look back on fondly for the rest of my life, one that will always remind me to run with my heart.

Thank you, Kati and Marissa, for inspiring us all to put forth a great effort in support of lymphedema research, awareness, and hope for a cure. YOU are my heroes, and my love for you is boundless!

From Marissa: Mile 30

At mile 30, Kati joined us.  Christine and I had been running and hiking for about seven and a half hours and, while we’d surprised ourselves with how strong and composed we’d felt the whole day, I was also, of course, tired.  Before we could see her, Kati saw our legs, coming down the hill and emerging from the trees, and she whooped.  Seeing Kati energized me.  We shouted back and all of us took off together, crossing one of the many roads that traverses Tilden Park, and jumping back onto the Selby Trail, across the road.  Kati led the way, telling us we were awesome and Chris and I chanted the same thing right back at her.  I’m pretty sure I joked about being an uplifting Lymphedema Run drill camp and, the truth was, I loved it.

When we came to a steep downhill section, the trail slippery and washed out from recent rain, and runners treading on it all day, Kati warned us that we should slow down. Because the course loops, we’d gotten to know the trail fairly well and, though there are many sections I remember fondly, this particularly steep, muddy incline is one that stands out.  In this section, everybody has to slow down.  And I mean everybody, even the speedy race-leaders, which is pretty awesome because throughout the day it’s a place where we got to interact with some of the other folks on the course.  Even exhausted and sliding in thick mud, people encouraged each other.

Now, careening down it with Kati felt awesome.  We were sharing part of the journey by foot, we were nearing the accomplishment of one of our goals, and I could feel the joy from all three of us.  The entire weekend was wonderful—so many kind and cool people had turned out for the awareness hike; over $14,500 had been raised for lymphatic research; and we were in the process of enjoying another component of the weekend, one about which I had been excited and anxious.  In the last mile, we talked about happiness. Big happiness about lymphedema awareness and openness within our communities, and a desire to continue to cultivate this awareness amongst wider circles.  This project has confirmed for me that community—love, support, awareness, the profound sense that people care and want to help—can have phenomenal, positive impacts.

As we sprinted toward the finish line, chasing Becky, Elizabeth and Erica who were waiting around a corner for us, I felt the jubilation of having run a long distance, a feeling I always love, but my state of joy was beyond even the usual elation.  My body fully in motion, then careening to a stop past the finish line, seeing my parents and husband, close friends and sisters, seeing in my mind’s eye all the folks who joined in the hike, I felt a deep sense of serenity.  There is so much good in the world, so many people that want to answer a call to help if only we ask, and it is that sense, from this fundraiser, that I want to hold onto always.  What a wonderful world. 

Click here to see lots of photos from this weekend! 
Click here to visit our Donation Page.

From Kati: On Limits

The other day I opened up my Yogi tea bag at work and draped the paper tag over the lip of my cup. I love tea tag quotes, and I was excited to get my daily dose of optimism alongside my steaming mug of ginger brew. What I read, however, was thoroughly disappointing.

“You are unlimited,” my tea tag read. I laughed and might have actually replied aloud that I begged to differ.

I expected wisdom from my tea bag, but found what I was searching for the in the transcription of the 1912 meeting of the HomeopathicSociety of Ohio (wahoo history!). Dr. E. H. Pratt of Chicago contributed this poetic wisdom to a discussion of the importance of considering nervous disorders in surgical cases:

It is opposition that helps people. A bird cannot fly without the resistance of the air; a fish cannot swim without the opposition of the water; an engine cannot pull a train up grade without sand on the track; a violinist cannot make a sweet sound on his violin without rosin on his bow, and the things that we call trouble are the stuff out of which the steps of the Golden Stairs are made.

I am limited, and (how do I put this gently?) so are you.  Resistance and opposition lend movement, beauty, and meaning to our existence. Our bodies are limited, are brains are limited, our lives are limited, and this reality is at the beautiful heart of being human.

This weekend, Marissa and Christine will fight to overcome the resistance of their bodies, to see whether their limit lies after the 31.07 mile marker. Pushing our limits is an act of faith and hope, faith in our ability to leave the known world behind, and hope that what we find past the borders of comfort will be worth the struggle of the journey.

Some limits we push past alone; others we defy together. Take the fundraiser- certainly $10,000 was past the limit of what my immediate family could scrap together, and we know your pocketbooks certainly have their limits imposed by income, need, and the many other excellent causes you support. We set an optimistic goal of $10,000. I am so proud that the $12,010 that we’ve raised has been spread over 134 donors, rather than one donor with unlimited coffers.

Lymphedema is an unceasing reminder of my limitations. My skin itches, my bandages and garments chafe, and my tissue aches with the burden of unrelieved pressure. If I stay too long on my feet, small sores open up on my legs, releasing extra lymphatic fluid. My condition forces me to pause in the pursuit of my goals and put my legs up instead. While I’m resting, I often find myself enjoying the time it affords me to look back at how far I’ve made it and plan where I want to go next.

My lymphedema, my limitation, is both my rose and my thorn. Knowing my body and my life are limited spurs me to work for the change I want to see in the world, to overcome the challenges of today and get to work on tomorrow. 

There is such sweetness in limitation, too. My daily reminder of what I cannot do also reminds me of all the capabilities I took for granted when I thought I was unlimited. What a miracle a body is! To walk, to run, to laugh and jump—not everyone can do these things, and for all of us they are the gift of just a lifetime, too short a time to be taken for granted.

Perhaps best of all, knowing and embracing my limitations encourages me to lean on others for support. Christine's shoes bear donors' names to power her up the trail.As Marissa shared in her last post, thinking of someone she loves for every mile of a race turns the pressure of distance markers into welcome meditations on the people who share her joy and struggles. Like Dr. Pratt’s bird, we needed the resistance of the air to fly, but you have joined our flock and shared the work, and together we have covered more distance than we ever thought possible. Thank you for joining our team- for the love and for the message of hope. The limitations of lymphedema won’t disappear after this weekend, but thanks to your support, the search for a cure will press on. We won’t run from our obstacles but towards them, relishing the chance they provide us to grow, learn, love, and live fully. 

From Anne & Dan Vastola: Universal Parental Emotions

“Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body.”  — Elizabeth Stone 

We are parents.  We hope, we worry, we love.

Always, we hope for you— for good health, bright minds, strength of character and positive relationships throughout life.

From the moment of conception, we worry over your physical well-being.  From our first contact, we worry about your emotional well-being.  And from your earliest interaction with others, we worry about your social well-being. 

We love through the amazing joy of discovering your uniqueness, and learn over and over again how this love will continue to alter us, as a river unceasingly alters that over which it flows.

When you encounter challenges, regardless of their nature or source, we hope, we worry, and we love.  And so, we question you, nag you, and avail ourselves to you.  But, we also thank you— for the energy you give to each other and to others, for your willingness to do the hard work to bring about change, for your enduring childlike delight in discovering and accomplishing, for the amazing and wonderful friends you have brought into our lives.

And, in our family tradition of cheering, we will end simply with a resounding “Lymphedema Run & Hike 2013!” 

Cheers!

From Marissa: In Anticipation of the Coming Weekend

I’m excited for the coming weekend on so many levels. 

I first conceived of running a distance longer than 26.2 miles to fundraise for lymphedema, while running the Big Sur Marathon, last April.  A runner/writer whose blog I follow has written about dedicating each mile of a marathon to people in her life.  So, when I was tired in high mileage along gorgeous Highway One, I thought about some of the many people for whom I’m grateful, and about the strength they demonstrate.  Around mile 19, as I rounded a particularly windy and foggy outcropping, the idea came to me that I could run an ultramarathon to raise money for lymphedema research.

The couple of months prior to the race had been tough as, through many consultations with some of the nation’s leading experts, it was confirmed that the swelling in Kati’s leg is lymphedema.  It frustrated and confused me that there is no known cure for this condition.  Thus, the prospect of offering something of which I’m capable—running—as a means to support research excited me.  And, to me, running a 50k (31.07 miles) made/makes perfect sense.  I’ve run marathons, but I’ve never run further.  Now, I want to go longer, and dig deeper, to express my belief that a cure for lymphedema is possible and that I am committed to help moving toward it.  

I understand that, likely, the cure won’t be discovered tomorrow.  Nor the next day, nor the day of the race, nor the day after that.  Perhaps there will still be months, even years, of research and trials.  But I believe that better treatments and, ultimately, a cure for lymphedema are possible.  And, as I wrote in my second blog, Accretion, I also believe in the cumulative efforts of many people.  Together, we will help to propel medical research of lymphedema toward a cure.  Because, in our efforts and our giving, not only are we sponsoring research at the Lymphatic Research Foundation, but we are also making a statement, as a collective: a lot of people care about finding a cure for lymphedema.  

Almost exactly one year since the notion of a run for lymphedema occurred to me, I am so looking forward to a full weekend of lymphedema awareness, through the Hike + Run to Cure Lymphedema.  Next Saturday (rain or shine!), a group comprised of friends and family will hike in the Oakland Hills.  And on Sunday, Christine and I will run in the Grizzly Peak 50k, in Berkeley. In the two months that we’ve been fundraising, a cohort of 120 people have raised over $11,570 to support lymphedema research.  It brings me so much joy that we’re able to send this sizable contribution to the Lymphatic Research Foundation, where postdoctoral fellows are working to better understand this mysterious and under-researched condition.  I’m also really excited about the fact that this means that the word is spreading about lymphedema. 

This is an exciting time and, as the Lymphatic Research Foundation says, “There has never been a time of greater optimism in the field of lymphatic research.”  Thank you and I hope to see you next weekend!

With love,

Marissa

Hike Sign Up here: http://www.lymphedemarun.org/#!hike-sign-up/c1rd5

Donate here: http://lymphatic.donorpages.com/LRFFriendsandEvents/lymphedemarun/

On the Grizzly Peak course!

From Christine: Learning to be comfortable with being uncomfortable

I’ve been a runner for most of my life, since age 11 to be exact. However, we didn’t always get along so well, running and I. It began as more of a love-hate relationship to be perfectly honest.

In junior high, in P.E. class of all places, I discovered a hidden talent – my ability to run the mile. Now, for those of you who have erased these painful images from your memory, let me give you a quick refresher. The mile was one of the most dreaded days in all of P.E. class. Four laps around the track felt like f-o-r-e-v-e-r. Thus, any and all excuses to avoid being exposed to such evil pain and torture were exhausted. There were definitely some Oscar worthy performances, my favorite including one of my classmates who made her own splint out of cardboard and masking tape to go along with her ‘broken wrist’ story. Still to this day, I give her props for creativity.

In all fairness, I never wanted to run the mile either. I tried coming up with a creative excuse to get out of this dreadfully uncomfortable task every semester. Yet, to no avail, I always chickened out at the last minute. So, my backup plan you ask? Lace up my shoes and regretfully approach the starting line. Then run the mile as fast as possible so I could just be done with this vile task as fast as possible! Foolproof right? Or so I thought…

The first two laps were usually pretty friendly. However, the second half of the race was when the real test would begin. That painfully winded feeling with the burning taste of blood in the back my throat would start to creep up around lap three and keep increasing exponentially as I approached the final bend of the track. As I sailed across the finish line, a wave of relief would wash over me, or was it actually sinking in?

Towards the end of eighth grade, I had come to terms with the dreaded mile, and had actually grown to enjoy it (shhhh…don’t tell anyone). After the numerous trials I had completed in my young running career, I had learned to be comfortable with being uncomfortable. I pushed myself outside my comfort zone. I faced something I feared with a fiery passion, and made it my mission to conquer it (even if it was only subconsciously in the beginning). I realized there was nothing wrong with being afraid or scared, it was all about how you internalized those feelings, and in turn chose to respond. Ironically, I chose to join the cross-country team freshman year, and have been a proud runner ever since.

This idea of learning to be comfortable with being uncomfortable is something that has stuck with me all these years, and has helped motivate me when faced with life’s challenges. I’ve never run 31.07 miles before, all at one time, on a trail, in Berkeley, CA. Sure I’ve had my moments where I wonder if my legs will be able to carry me for that long, if the hills will be too steep, or if I’ve gotten myself in way over my head to be perfectly honest. And just as quickly as those fears surface in my mind, so does the friendly reminder of learning to be comfortable with being uncomfortable. I know the Grizzly Peak Trail will put up a good fight on April 7th, but so will Marissa and I as we embark on our adventure together. I know there will be moments along the course where I feel uncomfortable, and I’m ready to accept the challenge of being comfortable with that ☺

From Kati: Other Voices - AZ Goes to Wal-Mart

A few months ago, I discovered a collection of insights and testimonies from people who are affected by lymphedema. Though I have met very few people with lymphedema in person, these stories have been a great source of companionship and wisdom.

Many of the book's contributors have lived with lymphedema for decades. Some live in areas of the world where their condition was so little understood as to go untreated or improperly treated for most of their lives. Authors talk candidly about the challenges of travel, exercise, garments, and insurance reimbursement. Some of them are still obviously angry, and others have come to accept their condition as a molehill next to the mountain of blessings in their lives.

Not everyone's lymphedema is a molehill in need of a little shift in perspective. AZ's story, below, reminds me that lymphedema is a serious, disabling medical condition when left untreated. Thank you for your support in bringing hope to people with lymphedema everywhere!

AZ Goes to Wal-Mart

I have been a therapist about seven years now and patients are always inspring me. One who is especially significant to me is AZ.

When I first met him, AZ was 57 and had been bedridden for about 30 years. Both legs and feet were huge. It was estimated that his right leg alone weighed between 300 and 400 pounds. The swelling was from the knee down. In all other areas, he was a normal size with some abdominal swelling. When he would try to stand, the weight would pull down so hard that blood vessels would break and he would be in severe pain for days.

It was impossible to reach around the leg to apply the bandages so it took two therapists, working as a team, to treat and bandage his leg. The first thing we did was to massage him and then wrap the legs. I then pulled the weight up with bandages and attached this to the thighs being careful not to restrict the fluid. This allowed him to stand without having the weight break the blood vessels behind the knee.

I then asked him to get out of bed each day and touch the wall. With treatment and movement the fluid began to reduce and finally we could apply the bandages with only one person. His fluid seemed to stabilize so we began to use the Komprex Binde (padding) stretched tightly under the bandage. Again the fluid reduced. When it stabilized, I decided to use Komprex foam chips. His legs were so fibrotic that the chips barely dented them. I thought I would make bigger chips so I would roll Komprex Binde into rolls about 1 to 2 inch diameter and place these under the Komprex Binde that was rolled on. The tissue would soften and then reduce.

He was now walking more. He went to the kitchen and back, then around the house, then to the street and then to the end of the block. After a year he and his wife were walking on the beach most afternoons. He reported they would usually walk between one half to one mile. He was now small enough that his wife could bandage him.

In the beginning it took 75 bandages to cover one of AZ's legs from the foot to the knee [I use 6 from foot to thigh, for comparison's sake]. His wife would wash and have these rolled for every visit. He never complained and did everything he was asked to do without complaint. My biggest problem was slowing him down so he would not overtire the leg.

On his first day of treatment, I asked him what he wanted to accomplish and he said he would like to see what was inside a Wal-Mart since he had never been to a big store like that. Now, I hate going to Wal-Mart and always used to complain about standing in line for such a long time to check out. AZ achieved his goal. He went to Wal-Mart and had a ball -- and I've stopped complaining about shopping or standing in line.

Thanks to AZ, many people around here have a whole new look at a lot of things.

Submitted by James Morrow, AZ's therapist

And the winner is...

In the past week, like in the weeks preceding, many generous individuals donated to support lymphedema research!  This morning, after the contest closed at midnight on St. Patty's Day, Anne and Dan Vastola randomly drew a name from the pot...

And the winner of the Lymphedema Run + Hike t-shirt contest is... Julie!

Julie is a Bay Area physical therapist who specializes in lymphedema therapy, among other treatments. 

Thank you, Julie and everybody, for your support!  

Julie!

And the...

winner is...

Lymphedema Run + Hike T-Shirts

If you'd like to order a t-shirt to wear your support of lymphedema research, please visit our site here!

From Marissa: Sprinting

I don’t like sprinting very much, and I’ve also never been very good at it. 

It makes me think of the taste of blood, wheezing and losing—none of which I like all that much. 

Perhaps that’s why I tend to prefer longer running events.  I get to set my own (slower) pace.  It’s about endurance and not rapid bursts.  And, if I can simply keep going, I’ll eventually make it to the finish.

This fundraiser, though, is teaching me to love both the sprint and the long-distance journey, metaphorically.  Together, we are going the distance and raising a large sum of money for the Lymphatic Research Foundation.  At the same time, we are full-on, full-throttle, heart-thumping, breath-gaspingly sprinting toward our financial goal of $10,000. 

In this instance—the instance of fundraising for lymphatic research—everyone who has supported this cause, who has given generously and deeply, who has reached out lovingly and perhaps unexpectedly, has shown me that sprinting is actually completely awesome. 

I have no doubt, we will sprint right through and past our goal.  Let’s appreciate that milestone, and then let’s keep going.

If you would like to support, it is never too late and nothing is too little. 
Our Donations page: http://lymphatic.donorpages.com/LRFFriendsandEvents/lymphedemarun/

www.lymphedemarun.org

"Runner" by Nathan Oliveira.

Lymphedema Run + Hike T-Shirts!

Donate ANY amount between now and midnight PST on St. Patty's Day (Sunday, 3/17),  for a chance to win a green Patagonia Lymphedema Run + Hike t-shirt!

Make a donation to support lymphatic research here... 

You'll be giving to a good cause and getting a chance to win!
We are fundraising for the Lymphatic Research Foundation.

May the luck of the Irish be with you!

***

These Patagonia short-sleeve tees are made of a lightweight athletic material, with 15-UPF sun protection.  Here's part of their awesome design, by Kati's dear friend, artist Marlee Bruning.  

Or, To Place An Order:

Cost: $25 Donation

Sizes: Women's S, M & L

           Men's M, L & XL

Delivery: Pick up at the hike or pay $3 for shipping 

Place Your Order: By emailing Marissa. 

Payment: Via Paypal to mari.eiseng@gmail.com; OR mail a check payable to Marissa Eisengart; email for address.

                       

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!