I ran/walked the equivalent of a 5K this past weekend in Houston, TX at Memorial Park. It has a popular jogging trail in one of the largest urban parks in the United States. About 3 million people visit it annually according to Google.
I can’t tell you how many runners and walkers read my #MOVETHATLYMPH for Lymphedema & Lymphatic Health t-shirt. Several hundred or maybe even a thousand? Possibly more. So many curious people, and a few seemed to actually recognize the word lymphedema. One person did a double take but kept walking. No one directly asked me about LE, but many stared at my shirt when I came to a section where many stretch out and drink water.
As most of you know by now, Lymphedema has run in my family for at least 3 generations and over 100 years.
If you follow my blog, you know that my family accidentally found treatment for LE in the late 90’s when it is said that CDT first started becoming popular in the United States. Germany was way ahead in LE treatment. Even almost 20 years later, you will not find treatment centers across the US in small towns. There remains a lack of awareness and doctors who can properly diagnose. Some people have to travel for hours for therapy, which is why so many struggle. This problem is not just unique to the US either.
To recap the story for new readers, in 1998 I saw a billboard on the Southwest Freeway in Houston with two legs that looked like my Dad’s left leg. My right ankle was just puffy at that point, and I was still unilateral (Sigh). I was 4 years in, and Dad was 24 years in respectively. That night I called my parents and said “I think we have something called lymphedema.”
What would have happened had I not moved to Houston? Or had that person not agreed to be on the billboard in the first place? I shudder to think. That billboard was a saving grace for us in many ways. It put a name to something that was previously unknown and dismissed. It VALIDATED that what we had was REAL which is a relief in and of itself.
Today in 2017, I’m still 4 years younger than he was when he was officially diagnosed with LE in 1998. He was 46 yrs old and symptomatic for decades.
In the last years of his life, Dad walked with a cane due to LE combined with osteoarthritis. Walking with a cane or walker is common in the LE community for those affected in the lower extremities, especially with older Lymphies who were either misdiagnosed or completely ignored for decades like him.
This is Dad with his cane in August 2015.
When I first started running in late 2015, I did an Insane Inflatable 5K with some friends in my hometown. I went to Dad’s house for lunch afterward. He had made some homemade chicken soup. Sidebar: Dad liked to cook with what he called the 5 minute method – 5 minutes standing and 5 minutes sitting. All chopping was done sitting. His walking was basically a shuffle, but he always kept moving.
He sat down after I had served myself and asked me, “Mind if I ask what you are running for?” He knew me. He knew I had never run a race in my life and probably wouldn’t run unless someone was chasing after me. Ha!!
Thinking I could preemptively guess the joke about someone chasing me, I laughed and said “Nothing.” Unexpectedly he responded “What? Not Cancer, Alzheimer’s, or ALS? That’s dumb to be running for nothing. If you want to run, you can run and do some laundry for me. Hmmm..come to think of it, some dusting and mopping needs to be done. You can run all over the house. I have plenty of stuff for you to do if you want to run.”
He was joking and laughing with a twinkle in his eye, but I knew deep down there was a kernel of truth to what he was telling me.
When it came to cooking, he often said that people (namely me haha) had a tendency to mess up a good salad making opportunity by drowning it in dressing, mayonnaise, mustard, marshmallow creme, vinegar, oil, or whatever to the point of not being able to recognize the main ingredient. Why make a fruit salad if you can’t taste the fruit?…
Why do anything without a sense of purpose when there is an opportunity to do so?
Knowing this, I read between the lines, but I joked back, “Well, heck, let me practice. How am I going to sign up for a race for a cause just to pass out? I’ll be THE CAUSE of an ambulance rolling up and hauling me out of there.” He roared with laughter, and I almost fell out of my chair from laughing so hard.
Just because I laughed doesn’t mean I forgot. It really gnawed at me for some reason. A week or 2 later, I told him “I’m going to run for Lymphedema. Nobody runs for Lymphedema.” He said “Damn straight. Do it! Run for both of us, ok?” I said “Of course I’ll run for both of us. You have my word.” That, my friends, is how my LE advocacy journey was born.
Eight months after that conversation, he passed away from cancer. This is me keeping my word to him in heaven. Now I’m the walking, talking, writing billboard for LE. I want to say thank you to that person that agreed to have their Lymphie legs photographed and mounted on a freeway billboard in 1998. This is my way of paying it forward.
I will commit to #MOVETHATLYMPH for Lymphedema and Lymphatic Health and advocating in general for as long as I can for all types of LE. You have my word.
Will you commit to spreading LE awareness too? Please give it some thought and consideration. It will take all of us together to crush this #Lymphedemic. There are all kinds of LE activism and advocacy opportunities today. Something as simple as posting information on your social media accounts or wearing a shirt can go a long way.
If you have a #MOVETHATLYMPH shirt now, I encourage to post an awareness moment or reactions you had while wearing it. As always, I’m wishing you awesome lymphatic health. 💜