The past two and a half years have been a bit of a whirlwind, during which I’ve had not one, but two refreshes. But in reality, everything started changing in 2010, so I’ll start my story there.
I very clearly remember sitting in the doctor’s office hearing the words “incurable lung disease” and “median life expectancy.” The doctor was young – probably just a few years older than me – and had this look on his face that he couldn’t believe he had to tell me these things either. The good news was I finally had a diagnosis – an answer for why over the past year and a half I had felt myself get more and more breathless with less and less activity. The bad news was the answer was incurable and fatal.
So I guess my first refresh was back then when I was told I might have eight years to live. My husband and I had only gotten married six months earlier and any plan we had for our life (including children) was shattered. Of course this wasn’t the most positive of “refreshes.” It was more like a downward spiral into fear and despair and confusion. I won’t go into what that looked like. More important is what saved us… travel.
Justin and I had taken our first international trip together a couple years after we started dating. We quickly learned that we loved seeing the world together and couldn’t wait to see more. And we did travel, but it wasn’t until I was diagnosed with an incurable lung disease that it became the primary focus of our lives. We had a trip to Spain scheduled just a few months after we found out. We almost didn’t go. We were scared I would get sick and nervous about traveling with a medical device (I need to use supplemental oxygen when I fly) and just emotional wrecks in general. But my doctor convinced us to go – and to keep living our lives – and offered an incredible amount of support to help make it happen. So we went. And it was just what we needed. For the first time in months, we stopped mourning what (we thought) we had lost and started enjoying the life we had, together. From then on, we had two priorities: keeping me healthy and traveling.
We still had full-time jobs – and good ones at that. We were both successful in our careers. So we just used every vacation day we had on travel. And we continued to live a relatively modest lifestyle so we could spend what we wanted on travel. Surrounded by family and friends, never wanting for anything, we had a good life. But we both had work stresses, and that stress and working long hours often took its toll on me physically. Some weekends I would barely leave the house. While we weren’t unhappy, we knew we could be happier and healthier. And even though I am on medication that has stopped the progression of my disease, that disease is still often fatal. We know there might come a day that I can’t travel in the way we like to, or I can’t fly at all.
So one day, we changed our lives completely. We were tired of living vacation to vacation. We wanted to be together and feel the way we did while we were traveling… all the time. So we decided to quit our jobs and travel full-time. We had been talking about it for about a year before we actually committed to doing it. And honestly, I think that day came after I’d had an especially stressful day at work and realized it just wasn’t worth it.
Of course people were skeptical. We were 36 years old and had good careers. But we’d done the math and knew we could afford it. We figured out all the important things like health insurance, travel insurance and how I’d get my medication abroad. We left on good terms with our jobs so we’d have options when we got back. And upon hearing our story, people got it.
So in June 2016, we set out to travel to places we’d only ever dreamed of visiting like New Zealand, the Faroe Islands and Vietnam. We spent 13 months traveling to 27 countries. We lived out of suitcases and were as happy as any two people could be. We also served as ambassadors for the rare disease I have. We connected with members of the community throughout the world including other patients and doctors working on finding a cure. We raised awareness and inspired people within the community to travel or to just seize the moment and do what they love.
Thirteen months later, we returned home. But we knew we didn’t want to go right back to our old lives, sitting at desks (apart from each other) ten hours a day, only traveling every few months. We wanted to do something that would let us continue to see the world, that would help people with disabilities and access needs do the same. So we hit refresh yet again. We packed up and moved to the Netherlands and started a business to help people in similar situations see the world.
This year I celebrated eight years since my diagnosis, which back then was the median life expectancy for people with my disease. And I feel as healthy and happy as I ever have. I attribute much of that to my medical care. But just as important has been hitting refresh and prioritizing my own happiness over others’ expectations and beliefs about what life should look like. I hope my story inspires others to do the same.
Sarah is 38 years old. A born and raised New Yorker, she is now living in the Netherlands with her husband Justin. In 2010, she was diagnosed with an exceedingly rare lung disease called lymphangioleiomyomatosis (LAM).
They started the blog Travel Breathe Repeat to document their journey around (some of) the world and inspire everyone to travel and do what they love. Recently, they started Accessible Itineraries, which creates unique itineraries and provides personalized support for trips to Europe for people with disabilities and access needs.