I was 8 years old, standing in our family dining room with my dad, setting the table for my baby sister Jill's 2nd birthday celebration. Always older than my years, I remember so clearly saying to my dad, "I can't believe Jill is 2 years old. Before we know it, she will be 3, 4, 5, and as old as me." Dad turned ashen, and his expression became cold, his eyes squinting as they did when he was angry. I wanted to crawl under the table, having no idea what was so offensive about what I said.

What I didn't know at that innocent moment was that my parents had just learned that Jill had cystic fibrosis. The life expectancy at the time was shockingly just about 2 years.

I wasn't able to truly process the gravity of this news until years later. What I understood was that it was my responsibility to be the perfect daughter — to cause no trouble, stay out of the way, expertly help with household chores, and ensure my behavior and opinions aligned with those my parents valued. The cloud that descended over our home was heavy and foreboding. We had to conceal Jill's condition as it was instilled in me that it would cause the family to be stigmatized. I recall countless nights lying in my bed, listening to Jill's frightening cough, praying she would stop, praying she wouldn't die.

Yet, against all odds, Jill wrote a different story. She didn't just survive — she thrived. She built a beautiful life with extraordinary grace and resilience that defied every medical prediction. She married her high school sweetheart, gave birth to two remarkable daughters, and eventually witnessed the birth of a granddaughter — achievements that were considered nearly impossible for someone with her diagnosis.

When we lost Jill in 2014 while she was waiting for a double-lung transplant, she was 53 years old — a rarity among cystic fibrosis patients at that time. She had lived a life filled with love, purpose, and meaning despite the daily challenges of her condition. Her legacy is one of courage and defiance of limitations.

I should tell you that in the years leading up to this, I had been tested for cystic fibrosis at Boston Children’s Hospital as a child. Negative. Before starting our own family in 1976, my husband and I went to the National Institutes of Health for genetic testing. We were told we both tested negative as being carriers, only to learn years later that the test was inconclusive.

As I continued my own journey of self-discovery and growth, I began experiencing nagging symptoms that became increasingly concerning. After countless doctors’ visits seeking explanations for GI challenges, unexpected weight loss (ironic after years of recovery from an eating disorder), excess mucus production, and recurring respiratory infections, I inherently knew something was wrong. 

Thanks to my professional training and connections as a board-certified health coach and functional nutritionist, I gained access to comprehensive testing, which revealed issues strikingly similar to what Jill experienced. With a mixture of fear and determination, I reached out to the acclaimed adult cystic fibrosis department at our local hospital. After being evaluated in November 2023, I was diagnosed with cystic fibrosis. 

The diagnosis hit me hard. I fell into a deep funk as I absorbed this new reality. My daily routine now includes nebulized inhalants and pancreatic enzymes, regular lab work, and sputum cultures. I've experienced several bouts of bacterial infections requiring strong antibiotics. The nights when I lay awake coughing bring back heartfelt and triggering memories of listening to Jill all those years ago; only now, it's my own coughing that asks for my prayers.

However, in this challenge, I've found unexpected blessings. My clinic visits bring me into contact not only with my pulmonologist and physician's assistant but also with a supportive team, including a social worker, dietitian, and pharmacist. I'm fortunate to be eligible for the newest class of medication — Alyftrek, a gene modulator that has proven to ease symptoms and extend life expectancy. 

With this caring clinical team, I generally feel stronger and more optimistic. And with this community, my heart is constantly experiencing new levels of fullness as I receive the care and support of so many dedicated individuals who help make this path easier for me to navigate.

As I enter my seventh decade, I find myself in a place of profound gratitude that once seemed unimaginable. I am blessed with a family that supports my journey and actively encourages me to stand in my values every day. Their love and understanding have been a steadfast anchor as I navigate this health challenge.

My experience has transformed my work as a health coach. I bring not just professional expertise but lived understanding to my clients, especially those navigating the complex relationship between health challenges and self-worth.

I've learned that healing is extremely nuanced. It isn't just about medical treatment — it's about finding purpose, joy, and connection amid uncertainty.

When I radically accepted my reality — my body, my patterns, my grief, my relationship with food, and, most recently, my diagnosis — I freed myself from the emotional energy previously consumed by resistance, shame, and judgment. This energy became available for genuine healing and growth.

In honoring Jill's memory and embracing my own journey, I've discovered that both our stories speak to the resilience of the human spirit. We are connected not just by genetics but by the shared experience of choosing life, love, and hope in the face of a diagnosis that once seemed insurmountable. Today, I carry forward her legacy and my own, transforming our challenges into messages of hope for others walking similar paths.

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