Last Updated on 30th December 2018 by Sarah and Justin
June 17 is a pretty big day.
Eight years ago today, I learned a very long word. Lymphangioleiomyomatosis. That word would answer questions like why I was struggling to breathe walking a flight of subway stairs or at my normal New Yorker pace. It was the scariest word I’d ever heard (its length didn’t help). Every year this date feels significant and is emotional, but today especially so. Eight years ago, if you Googled that word, you would read (as Justin did, selflessly taking on that burden) that the median life expectancy for women with this disease was eight years. And here I am. My disease is stable. I am happy and feel healthy, which can be a weird word for someone with such a disease to use. And I’m writing this from Romania – the 50th country Justin and I have visited together.
On the same day two years ago, life changed yet again, as we packed up our lives and hit the road for 13 months. We didn’t pick our departure date of June 17 on purpose, but once we realized the coincidence it helped validate the decision we’d made.
And so, we’ll always think of this date – June 17 – as a catalyst for us. We will reflect on what we’ve been through, what we’ve accomplished, and the positive changes we’ve made in our lives. And we’ll hope and try to continue making them.
You are both amazing people. Sarah you are such an inspiration to so many xx My diagnosis was 5 years and when I read that life expectancy was 8-10 years I was scared. for what I might miss out on. I didn’t think travel would be one of the things I could do. Thank you xx