A Life That’s Worth Being Seen

During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Ashley Ballou-Bonnema, who reflects on living with cystic fibrosis and pancreatic cancer behind a veil of “normalcy”—and what happens when that invisibility gives way to the realities beneath the surface. 

Invisibility isn’t about a lack of existence; it’s about what we deem to be imperceivable. 

Symptoms hidden beneath a poised exterior paired with the conscious effort to mask any sign of disease make for a powerful veil of illusion. The effects of cystic fibrosis (CF) can go unnoticed to the unsuspecting eye, allowing those of us living with it to project a sense of ‘ordinary’ to the outside world. 

I was diagnosed at one month old due to the late diagnosis of my older brother, Nathan. Back in the 1980s there was no mandatory testing and CF was often only suspected due to complications associated with failure to thrive. 

For years, my cough could be stifled or written off as a simple “cold.” Even my scrawny arms and legs growing up could be excused away as just a gangly kid. When I was younger and healthier it was easier to live within this veil of illusion—quietly living in a world that would never suspect what lay beneath my surface.

To most people, I was an ordinary, rambunctious child. But while my classmates came home from school and watched TGIF in front of their living room TVs, we’d drive the twenty miles into the next city to visit my brother in the hospital.

My brother, on the other hand, suffered for many years without a diagnosis, and by the time he got one, a lot of irreversible and life-impacting damage had been done. He tragically passed away at the age of 17 from complications associated with end-stage CF.

I’m continually humbled by the fact that my early intervention and diagnosis came at the demise of my brother’s suffering. I have no doubt that is part of the reason why I am still here today. 

Amidst my own periodic stays at the hospital and courses of home IV antibiotics, I was still afforded the health and freedom to live a ‘simple rural girl from Iowa’ life. It was a life filled with swimming lessons, proms, theatre productions, and Friday night football games, a childhood where CF was invisible to the world around me. 

As my disease has progressed over the years, CF has become increasingly visible to the outside world. 

As I’ve aged, CF has played a more significant role in my life: declining lung function, lung bleeds (hemoptysis), recurring and incessant lung infections, and antibiotic resistance. For years it’s felt as if my world was shrinking and CF was taking center stage.

While I am grateful to be a part of the CF population who is eligible to take a modulator, its full effects and potential have been limited due to the extensive lung damage I’ve sustained through the years and the antibiotic-resistant bacterial and fungal colonizations in my lungs. 

With that said, modulators did have a stabilizing effect on my CF, causing its once rampant progression—and my overall rapid decline—to slow. The deafening roar of the disease was quieted and the persistent ticking time bomb I heard growing louder with each passing day became a simple beat set to the rhythm of the life I never thought I’d live.

Medical advancements like the modulators have been tremendous game-changers when it comes to combatting CF.

In my lifetime alone, it’s humbling to look back and see the significant medical milestones that have made it possible for people with CF to dream far beyond the realities of a deadly diagnosis. These advancements, however, are not ‘one-size fits all’. Those ineligible or unable to benefit from the modulators can often be left feeling invisible, something no one in our CF community should ever feel. 

But everything changed for me in the summer of 2024 when I was diagnosed with pancreatic cancer. My world was completely turned upside down. As if CF alone wasn’t enough, it turns out those with CF are at increased risk of a variety of gastrointestinal cancers, including pancreatic cancer. Living most of my life embedded in the healthcare system, this world of oncology felt foreign to me. I was in disbelief. When I looked in the mirror, cancer was seemingly invisible—just like CF. 

That would change. I went through nine rounds of chemotherapy and, in January of 2025, I underwent a Whipple surgery, a complex surgical procedure to remove the tumor on my pancreas. During this time, my lungs took a significant beating and the once invisible disease became glaringly present: a need for constant supplemental oxygen, sunken eyes, and ashen skin. My already low lung function dropped by an additional 10%, which I could never recover again. In addition, I gained a twelve-inch incision on my mid section left by the Whipple.

Those were all visible marks of disease. That doesn’t begin to mention the invisible impact left upon my heart and mind. 

Gratefully, my life looks very different today. Some might even call it  “boring” in comparison to the last few years. Too much of the outside world, the scars of the past, are hidden beneath perceived normalcy—a resiliency that holds the power to silence a storied truth. A disease like CF touches every part of life and ultimately becomes entangled in every breath that’s graciously given.

With every passing day, I learn more about what it means to live alongside this disease, and I have come to realize the uncontrollable circumstances have brought some of the most beautiful relationships, opportunities, and truths to my life—a life that is worth being seen. 

 

About the Author:

 

Ashley Ballou-Bonnema is a professional vocalist and private voice instructor. The founder of Breathe Bravely—an organization passionate about giving voice to CF—Ashley serves as the current Executive Director. Diagnosed at one-month-old with CF, Ashley is a passionate advocate for the CF community. Ashley was inspired to bring her life as a musician and life as an individual with CF together through a program called, “sINgSPIRE”—an innovative approach to combating CF through the art of singing.