Some exciting news to report from our Team Standing Cyclist camp! Early in 2013, encouraged by a handful of interested supporters, I had begun compiling my various Standing Cyclist trip notes and soon after organized them into a simple manuscript. The content developed as part adventure-log, part memoir with regards to my own personal struggle with Allergic Asthma.
We’ve all been there. It’s the end of a long day, everyone’s asleep, and it’s time to thumb through new movies streaming on Netflix or available on iTunes. There’s always that one compelling movie that begs to be clicked on. Still, you pass it by, night after night. Once in a while you may click through for more information, but you never end up watching it. You’re just not feeling the title, promo photo, or subject matter itself. It’s a little too heavy or hits too close to home. Then, one night, something deep inside tells you to go for it, or rather, makes you go for it. You click on the play symbol without even realizing it and the results are life changing. For me, that night was last night and that movie was called 65_RedRoses. 65_RedRoses is a very true story. A documentary. A work of art. A teaching. It’s a very real representation of perhaps the most challenging period in the lives of three special young women, all suffering from Cystic Fibrosis (CF). This is not Reality TV, this is reality. A raw view into the out-of-control chest congestion and lengthy hospital stays that often accompany CF. In 65_RedRoses, Eva Markvoort, part warrior, part sage, exposes her great pain and vulnerability but also her great zest for life. She opens up and extends her creative mind and adventurous heart for us all to experience. We are brought deep within her inner circle to ride a roller coaster of emotions.
Eva, along with her loving and supportive family and two fellow CF fighters Meg Moore (aka megmucus) and Kina Boyce (aka Spirit_of_Kina), helps us to better understand this disease and the organ donation process associated with a skillful but risky double lung transplant. A process full of on-call waiting, waiting and more waiting. Through online journal entries and footage shot during excruciating moments, we share in their struggles, join along in their friendships and cry with relief when they shine. Shine, a good word. Even in her worst condition, Eva couldn't help but shine on family, friends and everyone else who crossed her path.
For those of you who are unfamiliar with CF, in short simple terms, it’s a disease that causes heavy mucus to accumulate in the lungs and other organs, eventually impacting the digestive system. Among other things, this results in severe breathing issues, infections and fatigue. Treatments are improving and the miracle of organ donations and lung transplants may extend a Cystic Fibrosis patient’s life, however, as the American Lung Association puts it, “People with CF have a shorter-than-normal life expectancy.” That means, that as of today, there is no known cure for Cystic Fibrosis.
Through my Standing Cyclist projects and my own Allergic Asthma challenges, I was somewhat familiar with CF, but my understanding was very limited. I only knew that CF patients had trouble breathing. That’s all. But it’s far more than that. During one of my adventure cycling fundraising trips, I had the opportunity to meet a child with Cystic Fibrosis. I chatted, trailside, with his parents. I listened to their story, impressed by their positive attitude and strength. In that moment, I got to know them, but I never really got to know CF first hand. Not until now. Not until I clicked on that one movie I had been passing on for many months.
In June 2014, Eva’s 65-year old father Bill Markvoort participated in a 9-day cycling event called GearUp4CF. He rode in honor of his daughter and to raise awareness and funds for the CF cause. This was Bill’s second time riding in this particular Cystic Fibrosis event. His first ride back in 2008 was a celebration of Eva’s successful double lung transplant. Eva later joined the team as chief cheerleader while still recovering from surgery. This year, Bill and 21 other team riders completed the 1,200km route from Vancouver to Banff, Canada on June 29th. This was the 9th annual GearUp4CF. This year’s event was a great success, thanks to Bill, his team members and the many generous people who donated. Over $370,000 was raised for CF research and care.
While here with us on this Earth, Eva wanted to make a difference. She wanted to raise awareness for CF and for the organ donation process. As it turned out, she accomplished this, but so much more as well. Beyond the 1 million plus dollars raised as a result of Eva’s story, she has made an even deeper impact on millions of people. Anyone who sees this movie, anyone with even the slightest hint of empathy and compassion within them, will see life differently going forward. Eva’s challenges will inspire young people to never take their ability to dance, work, study, laugh, love and breathe for granted. Parents will hug their children just a little tighter and a bit longer because of her willingness to share both her pain and her magical smile. For generations to come, Eva’s perseverance, potent triumphs and her brilliant shine will remind us all to live this magnificent life to its very fullest, each and every moment, with every single breath we take.
You can find the film on iTunes, purchase it via the official movie website, or stream it via Netflix. To learn more about Eva, 65_RedRoses The Movie, her dad’s tribute ride and CF, visit:
65_RedRoses Movie - http://65redroses.com/
More About Cystic Fibrosis - http://www.cff.org/
Eva’s 65_RedRoses Online Journal - http://65redroses.livejournal.com/
Bill Markvoort’s GearUp4CF Ride - http://65for65roses.blogspot.ca/
Article - Bill Markvoort Rides for Daughter Eva - http://www.newwestnewsleader.com/news/252329451.html
Great Strides – CFF Walking Events - http://fightcf.cff.org/site/PageServer?pagename=gs_homepage
This past week I had the opportunity to go back and review an interview I did during my Pittsburgh to DC Standing Cyclist Mesothelioma Challenge Event in September of 2010. One section in particular stood out to me. At one point I stated that "we don't need to be afflicted with something to get involved and make a difference". I've since played that section over in my mind many times, to better understand exactly what I meant (I had just completed a 320 mi "seatless" bicycle tour on a single-speed, fixed-gear bike, for the cause and was a bit fried to say the least). I've revisited this subject with several supporters since and have decided to blog about this topic to add clarity and depth to my point. When it comes to supporting non-profit organizations, we tend to get involved because we ourselves or someone close to us has suffered from a related challenge. I believe this to be an important reason behind our actions and it should be encouraged whenever possible. But there are other, more subtle, reasons to get involved. I would like to encourage everyone, cyclists and non-cyclists alike, to consider the strangers you encounter on your life's journey and their challenges. Open your mind and hearts and consider how they inspire you. Imagine how you can get involved and make a difference in their lives, in your own unique way. Like the young person with a prosthetic leg you pass on the street. Perhaps you can get involved with CAF (the Challenged Athletes Foundation), a wonderful organization that helps physically challenged athletes pursue their passions. Consider the article you read about the visually impaired mountain bikers who stay on-track by reading the sounds reflecting off passing objects. You may be inspired to Google - blind mountain bikers - where you will discover the World Access for the Blind, an organization that hosts a special event called Mountain Biking with the Blind, that you can contribute to. You don't need to personally know a challenged individual or physically connect with a cause to "feel" something or to "do" something. Often, these random connections and amazing people I meet in passing are my greatest inspiration and fuel my adventures. Let's strive to open our eyes and see past our own lives. Then...get on your bike and ride! Make a positive difference in the world around you.
- Cycling Up 70 Percent on London's Bike Superhighways (streetsblog.net)
- Livable, Bikeable Pittsburgh: The Streetfilms Tour (streetfilms.org)
- The bike snob's guide to cycling tribes (guardian.co.uk)
- The True Spirit of Standing Cyclist (standingcyclist.wordpress.com)
Cyclists come in all shapes and sizes, and from all walks of life. Some of us shred, some meander, others camp. For true self-propelled fanatics, it doesn’t much matter which flavor is favored. In the end, we are all simply cyclists. Through the years, I’ve enjoyed labeling myself a downhill mountain biker, bikepacker, racer, adventure cyclist, roadie, bicycle tourist, and most recently…a Standing Cyclist. A riding style I sometimes catch heat for practicing. For those of you who do not know me personally, and do not follow my Standing Cyclist web site, this may sound a bit confusing. To set the record straight, let’s start with the basics. I had been riding since I was 9 and loved every form of the sport. I rode hard and frequently and I was bulletproof. I rode for the personal rush and reward of it. For me, it was a self-oriented activity. It was a rush, a freedom, and all about…me. Then, in my late thirties, I began to lag. My heart and lungs were working overtime, with not much to show for it. Then came my first attack and the brick wall behind it. I was soon diagnosed with Allergic Asthma and my wheels slowed to a halt. Many months, pounds and meds later, I was totally wrecked. A pathetic echo of my former self. After about two years of doctor appointments, “poor me” syndrome, and damaging side effects from powerful asthma meds, I hit bottom. On the bounce back up, I knew I had to do something special both mentally and physically. I turned to natural mind/body remedies and focused back on my true passion of cycling. It was always my best medicine. First, I tried to ride as I always had. In a seated, hunched over position. Between my weight gain and lung issues, I literally couldn’t breathe well enough to propel myself forward and still avoid an attack. As a seasoned product developer, I tapped my experience and intuition and began modifying my bike. Nothing helped until…I removed my seat and seatpost, and raised my handlebars. This opened up my diaphragm and allowed me to use gravity more to my advantage. A few miles led to ten miles which later led to overnights and eventually international bicycle tours. I just kept standing. Many pounds less, with a rock solid positive attitude, I became The Standing Cyclist. Somewhere along the way though I realized I was no longer the same cyclist, or person, I was before my diagnosis. I wasn’t enjoying the rush and attention I was receiving while out on the road, saddleless. I was changing. I found I was now riding more for the pure experience rather than for the achievement and bragging rights over beers and pizza. I no longer tracked my miles as carefully as I tracked my attitude, road relationships, lessons learned and the sharing of my asthma experiences with children and adults with similar challenges. I became more self-aware, grateful and like many other “bouncebacks” I decided to redirect my energy, from my own ego, to the needs of others. I began riding to raise awareness and funds for special causes such as Stand Up To Cancer and the Mesothelioma Applied Research Foundation. I founded www.teamstandingcyclist.com to encourage other cyclists to train for, participate in, and even organize bicycle fundraising events. Now I could redirect the attention I was receiving, while training and touring in my standing position, to more important pursuits. I had found my new niche and I felt, and feel, better than ever. Through it all, I still admit, it’s all fueled primarily by my raw, child-like love of a bicycle. Any type of bicycle. The icing on the cake is doing what I love for causes that can benefit from how I do it, and that is the true spirit of Standing Cyclist. For me, it just doesn’t get any better than that. Peace.
- Copenhagen plans bike superhighways (grist.org)
- Bill would give bicyclists three feet of space -- or five (seattletimes.nwsource.com)
- Knoxville cyclist looks to the South for new riding guide (knoxnews.com)
- Bringing Bicycles to the Big Screen (iheartpgh.com)