Hi, I’m Nicki Zeller. Welcome to Nicole’s Notes – The Podcast, where I try to find clear thinking about the messiest things.
I’m about to tell you a story that spans 50 years. It’s a story about being told, at age four, that you probably won’t make it to first grade. It’s a story about a village that decided you were worth keeping alive anyway. It’s a story about learning to hide a disease so well that the world forgot you were sick. It’s a story about losing everything — your weight, your identity, your breath, your future — and thinking you were done.
And then it’s a story about getting a miracle drug that was supposed to fix everything. Except it broke me in ways I never expected.
This series is the pre-miracle drug. This is the before. This is the 50 years I spent preparing to die, building a life I never thought I’d get to live, and learning what it means to survive when survival is supposed to kill you.
I was diagnosed with cystic fibrosis in 1976 when I was four years old. The doctors told my parents not to expect me to make it to first grade. I made it to 54. I made it to a career. I made it to a foundation that has raised $3.5 million. I’ve had a lab named after me. I made it to climbing mountains on 40 percent lung function. I made it to being a public face of hope while privately wondering if I was going to make it to tomorrow.
And through all of that, I never knew a future was coming. Not until the drug worked.
This is the story of how I learned to hide. How I learned to perform. How I learned to be fierce. How I learned to survive. Starting with a four-year-old angry girl who had no idea that she was about to become the foundation for everything that came after.
I will drop a new episode each week on ‘No Apology Wednesday”. Feel free to hit me up with questions and/or comments.
Stay fierce. The world will adjust.
If anything I have confessed or created resonated, please let me know