“The emphasis on awareness as a means of sharing only CF factoids inhibits others from
connecting with us as fellow human beings. Bridging the gap between education and the human connection begins with nourishing desires to develop understanding. The goal of awareness is to draw closer to each other. The knowledge of how our bodies operate fulfills only a slice of our need to be seen in our entirety.

Our souls cry out to be seen beyond our invisibility. What we long to have people see is not our unseen disease itself, but the parts of us that have been changed because of it. Every breath taken is a gift; we combat anxiety, depression, and trauma daily; we power through neverending surgeries, tests, or hospitalizations. Sometimes breathing is our only feat of the day, yet surviving is enough. Our tenacity, perseverance, and valiance propel us forward into living each day despite how we feel.”

- Lara Govendo, from CF News Today article, The Story Behind Awareness

Recently the CFLF launched a new “STROLO Star” program, where we spotlight bright stars in our CFLF community. This program aims to share more stories from members of our CFLF community, including Grant Recipients, Volunteers, CFLF Board Members, CFLF Blog Writers, STROLO U Instructors, Sponsors and More. 

In June we had the honor of speaking with Lara Govendo. Lara is a long time volunteer at the CFLF, a CFLF Blog Writer, a Champ’s Challenge Event Coordinator, and a writer at CF News Today.

I recently had the opportunity to sit down with CFLF Founder and Executive DIrector, Brian Callanan, and Lara, to talk about her life with cystic fibrosis after transplant, her new job with CF News Today, and her dreams for the future.

Here is a glimpse of the interview I had with Lara.

Julie: What or who inspires you

Lara: I would definitely say other people in the CF Community and Transplant community. I just see so many individuals who are rising up and doing things that people thought we would never be able to do and it’s pretty amazing to be part of a community that uplifts each other and wants to see each other win and encourages each other along whatever journey they’re on. And Brian, of course.

Brian: You’re such a good liar, haha. :) What are some of your favorite sports or activities to do, to stay active with CF?

Lara: Well post-transplant I’ve got into so many things I’ve either never done before or haven’t done in years, so I’ve been kayaking, mountain biking, hiking, and just getting outside to work my new airbags and be able to do all the things I haven’t been able to do. That is such a huge part of my everyday routine.

Brian: You’re in such a beautiful place in Vermont to be able to do that.

Julie: So follow up question to that. How has exercise in general impacted your health?

Lara: It’s always been a significant part of my life, but pre-transplant and getting involved with the CFLF was a huge influence for me because they really drove home the mission of how important it is, not only on a physical level, but the mental and emotional piece. So before transplant even though I was in the hospital a lot, I was running with 6 liters of oxygen in tow and still getting outside and doing stuff, and I think that really kept me strong physically going into the transplant. But the mental and emotional piece, doing things that didn’t make sense for my body to be able to do, but the mental emotional piece is so much stronger and kept me going. Every day was a challenge to do something that my lungs were failing, but also committed to making it happen.

Brian: The mental/emotional part is one of the biggest challenges of living with CF because it’s not physical, it’s not concrete, it’s not something you can do more vest therapy and clear out or more enzymes and digest better. It’s abstract and it’s unseen sometimes. Ever since I’ve known you, which I think was shortly before your transplant, and since then, I’ve known you as one of the most positive people I’ve ever met, and so I’m curious how do you stay positive? I’m sure there are down days too, but what keeps you positive, what pulls you out of those down periods, what is some of the positivity for you?

Lara: Yeah, there are definitely days I don’t want to get out of bed, and days that are challenging, but what has been really monumental in my life is developing coping skills to have in my arsenal all the time, whether it’s journaling or listening to music or listening to positive podcasts or talking with people that are in my circle. Getting outside and immersing myself in nature and going for a hike or mountain biking. The main thing is to just have your goals crystal clear. I want to envision the life that I want and to be able to follow through with that. It is hard, but everyone is struggling and I also think that is a key element knowing that we’re not alone, that everyone has something on their plate they’re challenged with. You just have to get up every day. Immediately before I get out of bed I go through what I want for the day and declare positive things out loud. Because you can think things, but I think the power is speaking it.

Take a look at the full interview below, and get to know our STROLO Star of the Month, Lara Govendo!

Help Others Live STRONGER and LONGER-

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***