The ride of my life


My muscles are weightless, and my mind is empty. Outside the window, a pair of older Japanese women chat quietly. I close my eyes and breathe in the steam that floats up from the geothermal water beneath me.… knowing I won’t ever again waste a single heartbeat fills me with hope that while the sun is setting on this chapter, it will rise again brighter than ever in my future.

I’m sitting in a natural hot spring in Japan, a centuries-old tradition that is believed to have healing powers. I slide deeper into the onsen in quiet meditation and hope the mineral-rich water is doing what it’s supposed to.

I’m the luckiest girl in the world, I think and then stop. Luck didn’t bring me halfway around the world. A series of events, decisions, and my own two legs did.

Routine

My muscles are tense, and my mind is running a hundred miles a minute. There are no windows in the tiny, sterile office, and I shift my weight nervously, white paper crinkling loudly on the cushioned table beneath me.

I’m sitting at a routine doctor’s appointment in my early 20s, and my new physician just heard a glitch in my heartbeat. She tells me it’s “probably nothing,” but hands me a referral to get an echocardiogram just in case. “Do you have any questions?” I open my mouth to ask one of a hundred, but no words come out.

After a variety of tests, it’s confirmed I have a congenital heart defect that’s gone undetected for two decades. I monitor it until one day, under a rectangle of harsh florescent light, I’m told my overworked heart is headed toward early heart failure.

adult congenital heart disease
Beth in Vietnam

Recovery

Every muscle above my midsection is in searing pain. Snowflakes fall outside the window, turning the gray New England landscape white. My home is bursting with family members who’ve dropped everything to temporarily care for me.

I’m sitting on the couch, propped upright with a pillow, five days after my chest was cut open, heart stopped and blood mechanically pumped, sinus venosus septal defect and pulmonary vein repaired, breastbone subsequently wired, and half a foot of skin stitched back up. I can’t do anything I normally do, like stand up straight, pull pants up by myself, ride in the front of a car, laugh or go to the bathroom. I don’t feel sorry for myself — I feel fortunate to be alive.

Biking, my passion, occupies my thoughts, and it’s not long before my dreams of long rides through the forest turn into dreams of long rides through foreign lands. It’s only a fantasy though, until one day I voice it out loud to my husband.

adult congenital heart disease
Beth in Nepal

Ride

My calf muscles are cramping, and my mind is equal parts ecstatic and terrified. I’m sitting on a leather Brooks bicycle saddle turning over the first pedal strokes of an open-ended international bicycle tour. After Dr. Emani very possibly extended my life at Boston Children’s, I became motivated to live with more passion.

Following surgery, and receiving the green light from my cardiologist Dr. Opotowsky, my husband and I sold our car, rented our house and purchased a one-way ticket out of the U.S. On the road eight months after open-heart surgery, my chest still twinges a bit, but I feel more alive pedaling the streets of Munich than I ever have in my life.

Over the next 24 months, we pedal through 24 countries and over some of the tallest mountain ranges in the world — drinking dunkels in Germany, savoring pizza in Italy, outpedaling sheep dogs on Turkey’s back roads, sampling fermented mare’s milk in Kyrgyzstan, gasping for breath over the Himalayas, temple-hopping in Myanmar, tuk-tuk riding in Thailand and weaving through thousands of motorbikes in Ho Chi Minh.

We learn the world is a beautiful place filled with equally beautiful people who are exceptionally hospitable to two strangers on bicycles. We are consistently offered food to eat, tea to drink and a place to sleep. Despite language, religious and geographical barriers, we have made countless friends who have in turn made the world a smaller, friendlier and more welcoming place.

adult congenital heart disease
Beth and her husband, Justin, in Japan.

Rise

Back in Japan, I take advantage of the onsen’s serene surroundings to reflect on what has quite literally been the ride of my life. While I’m heartbroken to see this part of my story come to an end, knowing I won’t ever again waste a single heartbeat fills me with hope that while the sun is setting on this chapter, it will rise again brighter than ever in my future.

About the blogger: Beth Puliti is a writer and photographer whose open-heart surgery motivated her to travel the world by bicycle for two years. Follow her travels: @bethpuliti and bethpuliti.com 

Learn more about the Boston Adult Congenital Heart Program.