About five months after a double lung transplant, I was invited to speak in front of a group of college students to encourage them to pledge as organ donors. My transplant had been urgent, unexpected, and physically strenuous, and like many survivors, I felt I’d borne witness to something spiritually ineffable and life-altering. Quite naturally, I was reaching for a deeper meaning and purpose.

Sharing my story was a start.

Having done a lot of public speaking in my youth, I figured talking to a group of students about my latest medical event seemed, on the surface, like any other gig. To the best of my ability, with all 85 pounds of me quaking at the front of the room, I detailed the brutal months leading up to and recovering from my surgery. I choked through my words. I felt suddenly overwhelmed and incapable of making them feel what I felt.

I’d been certain that by my mere survival this group would be irrevocably moved and ready to act. Instead, what I got were questions. What did my experience have to do with them? I received generous and encouraging comments, but I also encountered pushback about the organ donation process – in the end, many still had their doubts of whether they wanted to take the pledge. It was not the ovation I expected. When I got back to my car, feeling raw and uncertain of myself, I bawled over the steering wheel.

I was accustomed to treating the physical things – my lungs, the tender scars on my chest, my endless pursuit of calories – but the internal wounds were untended. I had not yet processed the trauma I’d been through nor the guilt I felt for struggling with my reality.

This storytelling experience taught me many lessons. One, I realized in that moment how much healing I needed before I could share my story. This is why I have committed my consulting career to helping people prepare for sharing their personal stories in public spaces, with legislators, and in media. It is also why I have tailored a specific training for people living with cystic fibrosis called Spit It Out, which I offer virtually multiple times throughout the year.

My training always begins with opening people up to mining their own experiences more deeply. After all, we cannot properly tell our stories without first understanding them ourselves.

Second, we cannot control how people will receive our stories. However, when it comes to public speaking, we can control the following:

If you want to learn more about storytelling and public speaking specifically for people with CF, join a Spit It Out training. You can learn more by visiting www.katherinekeepswriting.com/speakertraining

Katherine Russell is a writer and activist in Washington, D.C. She is a producer of Bold Enough to Ask, a BreatheStrong podcast on CF sexual and reproductive health, and she is the author of With Every Breath: Stories by and about people living with cystic fibrosis (2006) and Shapes of Water: coming of age with cystic fibrosis (2012). She is a member of the Cystic Fibrosis Foundation’s Success with Therapies Research Consortium steering committee. Katherine is also the founder and CEO of Transformative Justice Solutions, a social justice consulting firm that assists organizations in elevating the voices of people with lived experiences to effect change.