Cycling is a mix of disciplines: mountain, road, BMX, cross country, downhill, touring, fat tire, tandem, leisure/urban, cycle cross, and the latest new thing, gravel. If you ask a cyclist what they ride, they normally identify as “I’m a roadie, mountain biker”, etc. And, of course, each discipline has its own vernacular and clothing styles, with jargon orbiting around the common nomenclature of frame, wheels and tires, handlebars, seat, and the drivetrain components that make a bike go. Derailleur sounds the most exotic.
“The Bicycle is a curious vehicle. Its passenger is its engine.” – John Howard
As an adult, I became a serious cyclist in 1991, transitioning from distance running to cycling enthusiast to becoming a passionate, devoted wheelman. And, like most cyclists, as I became more skilled and fit, cycling seemed to become part of my personal DNA, bestowing both mental and physical benefits during my life’s journey.
“Life is like riding a bicycle. To keep your balance, you must keep moving.” – Albert Einstein
Most cyclists, regardless of their niche, end up joining and riding with like-minded bikers. As the saying goes, “misery loves company”. A strange irony is that you can ride with your “tribe” a zillion times, for hours on end, covering many miles. And, upon meeting them away from the bike, you barely recognize the man or woman whom you drafted behind for miles (like in NASCAR) because they are wearing “civilian” clothes with no helmet.
“Anyone who rides a bike is a friend of mine.” – Gary Fisher
Over the years, fellow cyclists and I have ridden charity rides to raise money for noteworthy organizations. These include the Pan MASS Challenge (cancer research), Cycle for Shelter by Emmaus (fight homelessness), Muscular Dystrophy, Granite State Wheelman Tri-State (MA, ME, NH) Seacoast Century (local charities), and Multiple Sclerosis to name a few. The objectives were first, the scenic course and covering the distance (often a metric Century [100km] or a Century [100 plus miles]); second, putting the hurt on your riding buddies by upping the pace, especially on the hills (securing bragging rights), and; third, raising money for the cause. Despite our participation, we lacked a personal connection to the cause. This list of objectives suddenly and permanently changed for me.
“It is by riding a bicycle that you learn the contours of a country best, since you have to sweat up the hills and can coast down them.” – Ernest Hemingway
My daughter Sarah, now 40, was diagnosed with lymphangioleiomyomatosis (LAM) in August 2018. Earlier that June, she called one afternoon to cancel our spontaneous weekday dinner. I thought my disappointment was only because she was promising to pay!
“Dad, I cannot make dinner, I’m in the hospital with a collapsed right lung.” You can imagine my shock.
Following hospital discharge, the initial diagnosis was Stage 4 COPD. This diagnosis was illogical, COPD is predominantly caused by inhaling pollutants, such as cigarettes. Sarah was perplexed, being a non-smoker. An appointment was scheduled with Tufts Medical Center in Boston for a second opinion.
“It is the unknown around the corner that turns my wheels.” – Heinz Stucke
While Sarah waited for her Tufts appointment, a follow-up appointment with a second doctor in the pulmonology group changed the diagnosis to LAM. After CT scans and extensive diagnostic testing, Tufts confirmed her lung disease as LAM.
The specifics of LAM:
- an ultra-rare respiratory disease
- can be difficult to diagnose due to its rarity
- affects mostly women
- THERE IS NO CURE
- Sarah’s lung capacity ~ 35 percent
If there is severe respiratory decline, the only option for survival is double lung transplantation.
As Sarah’s Dad, I was overwhelmed. Besides my love and support, what could I do to fight this disease? I had no meaningful answer.
Shortly after Tuft’s diagnosis, Sarah learned that the LAM Foundation was holding an informational event in Portsmouth, NH for new “LAMMIES” and their families. We discovered that the LAM Foundation fosters a global ecosystem of LAM patients, families, clinicians, and medical researchers. Together, they care deeply for all LAM patients. Most importantly, there is an urgency to raise funding to advance the science and stay on task to find a cure.
Luck prevailed that day, as Drs. Lisa Henske and Souheil El-Chemaly of the Lung/LAM Center at Boston Brigham and Women’s Hospital attended the meeting. Dr. El-Chemaly expedited the transfer of Sarah’s care to Brigham and Women’s, one of the world’s premiere LAM research and treatment centers. Sarah is, fortunately, being treated by its team of extraordinary care providers today.
A major annual fundraiser for the LAM Foundation is the UPENN MILLION DOLLAR BIKE RIDE (MDBR) to raise research dollars for orphan diseases. An orphan disease is one where the rarity of the disease means there is a lack of support and resources for discovering treatments. With MDBR in its tenth year, the LAM Foundation has fielded the “Easy Breathers” Team since year one to raise awareness and funding for LAM. This event provided my answer to “what can I do to fight this disease”? My cycling passion steered me right into the MDBR to raise dollars for LAM research.
In 2020, Covid forced the MDBR into a virtual event. Two friends and I rode the MDBR locally, distancing 72 miles along the NH and MA seacoast. That year, I was tearfully inspired by Sarah’s big heart and grit as she committed to riding indoors on her exercise bike. On her own, at home she rode 72 miles, covering 4-6 miles a session, utilizing portable oxygen to overcome her deficit of only 35 percent lung capacity. Her positive outlook as a LAMMIE, reflecting, “72 miles, no problem, I got this, I’m Sarah strong” is why I ride. Together we are fighting the good fight. If she can ride with 35% O2, I must and I will.
“We each carry our own Tour de France inside us.” – Philippe Brunel
PLEASE JOIN THE LAM FOUNDATION AND TEAM EASY BREATHERS by riding in or supporting the 10th annual MDBR Saturday, June 10 in Philadelphia, PA. Sarah and I will be there. Will you? It takes all of us.
This is why I ride. I ride in support of LAM, with my legs, my lungs, my love, and my heart.
“There are three ways to pedal a bike. With the legs, with the lungs, or with the heart.” Mandible Jones
Join or support the Easy Breathers team at: https://charity.pledgeit.org/t/IUGy1MomcL