The Author

Joachim Zuther, Lymphedema Specialist. Read more
Lohmann Rauscher
MediUSA

Tactile Medical

Cross Country Bicycle Ride for Lymphedema Awareness

The Route

 

April 2011 marks the first anniversary of my bicycle ride across the United States, which covered 3262 miles and took 42 days (37 riding days). I thought this would be a great opportunity to share some of the impressions of this ride with my readers, especially in light of the fact that the mission of this journey was to raise awareness for lymphedema.

Around January 2010 I contemplated the idea of riding my bicycle across the country in order to educate as many people as possible about the condition of lymphedema. Being involved in the field of lymphology for almost 30 years, I know that awareness for this common and serious condition is poor, to say the least, despite the great advancements made during the past years.

While the lymphatic system was already described by Hippocrates and Aristotle before the beginning of the Christian era (BC), the first detailed descriptions were made by Jean Pecquet, a medical student from Dieppe, France in 1627, which means that we are approaching the 400th anniversary of the first description of the lymphatic system. Despite the fact that the lymphatic system plays an important and active role in fluid regulation, transport of immune cells, and pathological processes such as inflammations and cancer, it remains to this date a poorly understood and often neglected essential biological system.

Although lymphedema can be very effectively managed with Complete Decongestive Therapy (CDT), and despite great efforts of countless dedicated individuals and organizations such as the National Lymphedema Network (NLN) to raise awareness for lymphedema and related conditions, it is a sad fact that many patients in the 21st century still have to hear from uneducated physicians that there is nothing that can be done to reduce the size of the swelling, and that the patient has to live with this condition.

I know from experience that any effort to familiarize the public with lymphedema and its treatment is a worthwhile endeavor, which is why I decided to have a friend of mine stitch the following words on the back of my cycling jerseys “I Ride For Lymphedema Awareness” and go on a cross country solo bicycle ride to make as many people as possible aware of lymphedema and its treatment.

Yuha Desert, CA

As an avid cyclist I knew that I was capable of riding distances, however, I live in Florida, and although the weather permits riding pretty much all year long, there are no mountains in my home State. I was aware of the fact that I had to conquer great changes in elevation with mountain passes exceeding 8000 feet during this ride (my first day out of San Diego brought me from sea level to

Near Emory Pass, AZ

almost 3500 feet), so with my limited exposure to mountain riding I was not quite sure if I would be able to finish this project.

For this reason I decided not to seek any sponsorship and cover all related expenses for this trip out of my own pocket and left San Diego, CA for a 3262 mile adventure to Wabasso Beach, FL on April 8, 2010.

One of the lessons I learned during my 42 day cross country ride is that the only way to fully explore this country – any country – is to experience it on a bicycle.

Pecos River, TX

There is simply no other way to take in the terrain of the land, the smells, sounds and sights so completely than exploring it on a bike. It became clear to me that the direct exposure to many of the essential fabrics and observations that help us understand the make up of a country are lost in a car on any other motorized vehicle.

Snakes slithering away from me in the grass on the roadside, the different melodies of birds, the sounds of leaves and tree trunks in the wind, smells of different grasses and wildflowers – even the creaking sound of metal guardrails warming up on a sunny morning, were pieces of a puzzle, each of which provided me with essential input to complete the new picture of this beautiful country that I was able to see at the end of the ride.

Texas Hill Country

Sure, crossing the country on a bicycle can be hard at times, some rough roads can be a real pain in the butt (pun definitely intended), crossing mountain passes on a loaded touring bike can be very challenging, and some smells and sounds I came across on this journey have to be filed in the “unpleasant” category. Most cars just stink, and there is nothing more disturbing than the loud exhaust pipes of motorcycles disrupting the peace of a beautiful and serene countryside – I also learned to identify the species of road kill by the smell it emanates – most interestingly the coffee smell of dead vultures, which actually was quite pleasant.

Louisiana

Here is what also became clear to me – crossing the country in a car limits the experience to the sights immediately surrounding the Interstate. When stopping at a gas station most people use a credit card on the pump to pay for gas, which prevents direct interaction with the folks running the place. I learned that gas stations, especially those on back roads are often meeting points and hangouts for locals, and most of my interactions with people happened during my “refueling” stops at these gas stations. Conversations usually started the moment I walked in with my helmet and cycling clothes, or dismounting my loaded bike in front of the building – most people were curious and asked questions about my journey, the bike, and what the word on the back of my jersey (lymphedema) meant. Not only were my answers frequently a reason to draw more people into the conversation, they also lead to other topics that provided me with a lot of insight into understanding the make up of the local communities.

A very positive side effect of these interactions was the opportunity to educate people about the nature and symptoms of lymphedema and its treatment, which helped to make this mission of the ride really easy to accomplish. It was not surprising to me that many individuals knew of a friend, family member, or neighbor with a “big” arm or leg, and they were grateful for the information and the little index cards with useful web addresses about lymphedema, I provided them with.

I can’t say enough about how refreshing it was to experience that almost all people I met were genuinely friendly and helpful. In this time and age we are exposed to many things that make us believe that the goodness in people is getting lost, and I feel very fortunate that I was able to confidently push my personal restart button on this issue. There are still many good people out there who offer help without being asked, especially when they are approached with a friendly smile, which always goes a long way and makes life so much easier.

Somewhere in Alabama

I freely admit to the fact that there were times I seriously contemplated quitting. Relentless headwinds on days 10 and 11 and the hot day in El Paso with a broken chain are two of these examples.

However, being a realist I expected moments like these even before I started, and decided that I would deal with these situations when they arise – one way or another.

The realization that it can be difficult to stay motivated every day, and that there would always be a better day tomorrow, helped me overcome these moments.

But what really kept me going were all the people following me along from a distance during this ride – above all my wife and number one fan Susanne. We have known each other for a very long time and it is not new to her that I tend to follow through with some of my crazy ideas, and it always surprises me that she lets me do whatever I want, as long as it is not too crazy.

My friend and colleague Sara Clarke, Operations Manager at the Academy of Lymphatic Studies, set up a fan page on Facebook, which allowed friends, as well as people I have never met, to follow and encourage me. Hundreds of people also followed my daily blog reporting and enjoying the pictures I took along the way.

Back in Wabasso, FL

Knowing that I was able to share so many of my experiences with all these individuals who were with me on a daily basis, and spreading the word on lymphedema throughout my ride, provided me with a lot of motivation that made it easy to overcome these few low points in my journey.

I received the biggest reward when I arrived on my final destination,

The Cake!

Wabasso Beach, FL. To see so many friends waiting and cheering for me was much more than I expected, and I will be forever grateful to all of the people who welcomed me home that day, especially to my friend Rebecca, who made the most amazing “Cross Country Bicycle” cake I have ever seen.

If you would like read about the “Lymphedema Awareness Cross Country Bike Ride” you may go to this blog address: http://joebikes.wordpress.com/category/prologue/
It starts with a prologue and leads through the entire ride on a daily basis (click on the respective days under “categories”)

Click here for a PDF Version of this Article

Do you need more information on other topics on lymphedema? Use the “Index” list on the left side of this page and select the article you are interested in. You can also use the “Select Category” window on the right of this page and select the topic you are interested in. Once selected, a new page will load with a number of articles related to the topic you chose. Click on any headline of the articles and the entire article will load up for you to read.

You may also visit the Facebook page “Joe’s Cross Country Bike Ride

8 comments to Cross Country Bicycle Ride for Lymphedema Awareness

  • Dan

    Joe – sounds like this was a wonderful, and obviously very worthwhile, experience. Well done.

    Came across your blog post, as it touches on some themes related to a program we’re running. Reunite America! Perhaps there’s someone you met along the way that was very helpful, or someone who supported you but that you’ve never met. Perhaps you’d like to see them again to thank them. Well, I encourage you to go over to our Facebook page and share your story of a special person that you’d really like to see again. A friend, a family member, anyone special. We’re going to make some of these reunions happen!

    http://www.facebook.com/Tostitos?ref=ts&sk=app_158498747530557

    Give it a look, share your story, and congrats on the ride!

  • Thank you! Your work is very important and much appreciated. Cancer and it’s side effects touches all of us in some way, shape or form! Education, awareness and prevention on diseases such as Lymphedema is critical.

  • Well done! Congrats. You accomplished something most can only dream about. I depart June1, riding TransAmerica Trail to Western Express. In honor of a dear friend who passed away from Melanoma. I’ll be raising money for the Melanoma Research Foundation.

  • Kim Velie Klein

    Hello Joe,
    I am new to the lymphedema world….newly certified as a CLT and a 7 year breast cancer survivor. I was intrigued by your x-country bike trip! Are you going to do it again? Could this be an annual event? I am a biker and would be very interested!
    Hope to hear from you,
    Kim Klein, PT,MS,CLT

    • Joachim Zuther

      Hello Kim,
      I probably won’t do a cross country again – thank you for your interest!
      Joe

  • Sarah

    I know this is an old post, but it sounds like you might know more about the answer to this question than most:

    How would I find a lymphedema-preventative compression sleeve suitable for wearing while long-distance biking? I just had some sentinal lymph nodes removed from my armpit (thankfully all cancer-free!) and my doctor said I should wear a compression sleeve on that arm during all exercise as a preventative measure. But all the lymphedema-specific sleeves I find seem to be more business/daily-wear than outdoors — I’d want something with real sun protection and sweat wicking etc.

    Whereas the sport ones aren’t the sort of graduated compression one wants for helping lymph drain, they’re more muscle support (and tend to cut into my upper arm if they’re small enough to not be loose on my forearm) .