Recognizing Works by the CF Community

Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing, a podcast, or video, their work has been shaped by their experiences of living with CF. Learn what creating these works has meant for them and what readers and listeners can take away.

| 8 min read
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Hannah Avery
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Denise Yahrling

Author, “Life Happens for You: Backpacking the World With Cystic Fibrosis"

When I was a teen and young adult learning to cope with the reality of a life with CF, I would have wished for a story that could have given me hope that leading a fulfilled life with cystic fibrosis was possible. I decided that, one day, I would write a book that might help others through this time of doubt and fear. Two years ago, the strong desire to actually go through the process of writing a book grabbed ahold of me.

Writing this book and sharing my story was a very intuitive and healing process. I have always loved writing and -- while doing so -- it felt like the words were just pouring out of me and onto the page. My book is not only about life with CF, but a travel tale about the people I met along the way, the inspiration I found, and the journey to oneself. I also write about the personal and emotional difficulties that can go along with CF life and how I dealt with -- and am still dealing with -- them.

I want to reach and inspire those who believe they have been disadvantaged in life by certain impairments, such as a chronic illness. I want to show that it is from our greatest challenges in life where we draw the most strength.

 

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Jennifer Dolan

Author, The New York Times Modern Love essay: "Face It, Mom and Dad: I'm Not Special"

Raised on self-help books, I thought anything was possible. Then, at the age of 28, I was diagnosed with cystic fibrosis and I was told that my life would be shortened. Being a CF patient who was diagnosed as an adult was a unique experience. I felt simultaneously sad, angry and guilty -- sad to be sick, angry that it took years to get a diagnosis, and guilty because I knew I had a milder form of CF than most people. The hardest part by far, though, was sharing these feelings with my parents, who are unbridled optimists. Although I craved permission to feel sad, they insisted I look on the bright side.

I decided to share the story of my family's struggle to talk about CF because I knew I wasn't alone, and I wanted others to feel less alone, too. I've met so many people with CF and other chronic illnesses who are told by others that positive thinking will solve their problems. Though it comes from love and good intentions, this brand of forced optimism sometimes makes us feel worse, as if we're letting our friends and family down whenever we feel anything besides hope.

Here's what CF taught me: One of the most powerful expressions of hope is simply being present with the people we love, without offering advice or encouragement or trying to fix the situation.

 

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Claire Wineland

YouTube Original Documentary, Claire

Claire Wineland spent her 21 years battling cystic fibrosis. Although she spent thousands of hours in hospitals and underwent multiple surgeries, that is not what defined her. Claire inspired the world to find purpose in the face of adversity.

Although Claire died last year, her legacy and story live on through her documentary, which shares her CF story through interviews and footage. In her own words, Claire shares her brave journey of facing unimaginable circumstances at a young age and how she became an advocate and activist for those living with terminal illness.

Submission from Claire's charity, the Claire's Place Foundation

 

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Jennifer Griego

Podcast, “Journeys with Jennifer Griego

I started my podcast in March 2019. Honestly, it wasn't my idea. My friends and family told me I should do a podcast soon after I started to share my story publicly. After thinking about it more, I talked to a close friend of mine, Jay Scott, who also has a podcast. He helped me get all the equipment, taught me how to edit, and showed me the ropes. But, before all this, I had to figure out what to call my podcast and what it would be about. I chose  Journeys with Jennifer Griego, because I wanted to talk to others about their journeys and that title seemed like a natural fit.

Since I started my podcast, I have learned so much and met so many wonderful people, including “Five Feet Apart” actress Haley Lu Richardson. I am so thankful to my friends and family who encouraged me to share my story and create a platform to hear others. This was something I never thought that I would do, but I have learned so much and have grown by doing it. I love talking to new people and hearing each unique story.

 

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Andy Lipman

Author, "The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis"

All my life I've been searching for hope because I have been living with a disease with such a low median life expectancy. I began to realize that others with cystic fibrosis felt the same way. I started learning about inspirational stories through word-of-mouth, social media posts, and newspaper articles. I decided that it was a good time to interview these “CF warriors” and teach others what I've learned -- that life isn't about the hand you're dealt, but rather how you play that hand.

My book was published in May 2019 to celebrate CF awareness month. Stories include people of every age group beginning with teenagers and concluding with people in their seventies. There are 65 stories in honor of the 65 Roses story -- ranging from a man attempting to climb Mount Everest, to a girl working on getting access to a breakthrough drug in her country, to a hall-of-fame triathlete. The stories are incredibly inspiring.

 

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Mallory Smith

Author, "Salt in My Soul: An Unfinished Life"

Diagnosed with cystic fibrosis at the age of 3, my daughter Mallory Smith led an incredible life despite her disease. She was a three-sport varsity athlete, prom queen, and straight-A student in high school, and then went on to Stanford, graduating Phi Beta Kappa. During her lifetime she had 67 hospitalizations, ranging from weeks to months.

Mallory would write: “I am limited in what I can do, but not in what I can say.” As her body deteriorated, she sharpened her mind, crystalized her thinking, and honed her writing skills, which led to her uncanny ability to create poetry out of prosaic experiences.

For more than 10 years, Mallory recorded her thoughts and observations about her struggles with CF and feelings too personal to share during her life, leaving instructions for me to publish her work posthumously.

What emerges is a powerful story of a coming of age. Mallory wrote about what so many young people experience: wanting to fit in; wondering if anyone will love her; feeling insecure about her looks; grappling with breaking away from her parents and being independent; wondering what the future will look like. In doing so, she teaches us about resilience, discipline, inspiration, and perspective.

Despite the tragic ending, readers are left with hope -- in part because, to our knowledge, Mallory was the first patient in the U.S. with CF to receive phage therapy, an experimental treatment to attack superbugs like Pseudomonas and B. cepacia.

Submission from Mallory's mom, Diane.

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Hannah is a senior community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Hannah lives in Washington, D.C., and in her spare time, she enjoys trail running, reading with a cup of coffee, and spending time with her friends and family.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.