Living My Dream — With CF

We are honored to share voices from the Cystic Fibrosis (CF) community as part of our blog series for CF Awareness Month. Today’s guest writer is Steve Bell, healthcare brand strategist, husband, father, and adult with CF. Steve shares some of the perspective he has gained living with CF and what he would like those without CF to know about life with a chronic disease.To learn more about EE’s CF Awareness Month campaign, visit www.emilysentourage.org/crossoutcf.

I recently took my son Landon to buy his first baseball glove. We tried on the red one, the blue one, and the grey one. We played a mini game of catch in the store to see which one caught the ball best. We decided on the grey one because it matched his sweatpants that day. It was such a small thing. One blip of his life that he won’t likely remember. 

But for me it’s a milestone that I most likely won’t forget. 

Little things like this happen every day. Sometimes I’m able to take a step back and enjoy the gravitas of the moments and other times, the moments rush by. That’s how my life has been shaped. Living with a chronic illness is like walking around balancing a glass on your head. You don’t know when you’re going to slip. You don’t know when it’s going to break. And you don’t know how deep the cuts are going to be when you step on it. 

Living with a chronic illness is like walking around balancing a glass on your head. You don’t know when you’re going to slip. You don’t know when it’s going to break. And you don’t know how deep the cuts are going to be when you step on it. 

My life with CF has brought a unique perspective. People sometimes joke that I’m a 65-year-old man trapped in a 37-year-old body. And a lot of times I feel that. CF makes you grow up fast––have conversations that kids shouldn’t have to have, do things that kids shouldn’t have to do. It makes you realize what’s important at an early age. With that, what I think is important for those without CF to realize is: we still have dreams. Goals. Aspirations. We still want to make the most of what we have. We have a zest for life just like everyone else. But we are challenged with something that literally takes life away from us. 

Like most people with CF I have spent and continue to spend a lot of my time combatting this disease. I’ve also been fortunate enough to experience the benefits of Trikafta, a life-extending miracle that has put me back on the path of life I envisioned as a kid. What I didn’t realize then was how my dreams would change. That the simple dream of being a husband to my wonderful wife, Megan, and a father to my two amazing children, Landon and Mackenzie, would become a reality. And a reality that I’d be able to experience with breath.  

I think is important for those without CF to realize is: we still have dreams. Goals. Aspirations. We still want to make the most of what we have. We have a zest for life just like everyone else. But we are challenged with something that literally takes life away from us. 

 I wake up every day and fight with two toddlers to get them to daycare. Most mornings it’s a battle, but it’s also something that is special.

I get to say, “I’m a Dad.” 

I get to say, “That’s my son out there.” 

I get to say, “Yes, Mackenzie is big for her age.” 

I get to live my dream.

EE extends a huge thanks to Steve for his beautiful piece, a wonderful contribution to EE’s CF Awareness Month campaign! 

Special thanks to Vertex Pharmaceuticals, Inc. for sponsoring the #MyCFStory series.