Celebrating Works Created by the CF Community

People in the CF community do so much every day. Beyond doing treatments, going to clinic appointments, and doing countless other things to stay healthy, some of you are writing books and music to help others with CF and give thanks for your loved ones. Read about what three people with CF have created this year. 

| 5 min read
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Bethlehem Horn
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Olivia Davis
Singer-songwriter, For Mother

I wrote this song for my mom, the strongest person I know. When I was 19 years old, my cystic fibrosis started getting serious, and I began to face the frightening reality of what it means to live with this disease. But I realized that I wasn't alone in this feeling -- my mother had been dealing with this reality since the day I was diagnosed. When I was too young to understand the gravity of my disease, my mother handled the fear, anxiety, and grief with grace, humor, and hope. For the first time, I reflected on how difficult it must have been to make a small child feel safe when there was a constant threat looming. I can't imagine the strength it must have taken to remain the brightest source of joy and comfort in those times when she felt helpless. 

As a child, when I was in the hospital for weeks at a time, my mom would pack suitcases large enough for me to fit in and decorate the room so beautifully that no one would recognize it as a hospital room. She would bring puzzles to pass the time, essential oils to combat the hospital smell, and enough books and CDs for a lifetime. We made pro and con lists about being in the hospital, and she helped me see that everything has a good side if you pay enough attention to see it. 

Now that I am older, my mother can't shield me from the fear. She is not so much my protector anymore -- she is my comrade and my confidant as we continue to navigate what it means to live with a life-threatening illness. I am eternally grateful for everything this woman has given me. This song and video is for all the mothers, fathers, and caretakers of people with CF -- we couldn't do this without you.

For Mother is available on YouTube.

 

 

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Sarina Sandstrom
Author, The Guide to Gusto

Ralph Waldo Emerson said, “Nothing great was ever achieved without enthusiasm.” Sarina Sandstrom, a 24-year-old with CF, is proving that great enthusiasm, or gusto, can be achieved in daily life through intentional self-discovery. Her new book, The Guide to Gusto: 20 Ways to Learn, Love & Leverage Yourself to Unlock a Life of Happiness, Purpose & Productivity is an ode to the individual. Through 20 experimental strategies and action-oriented resource evaluations, she guides readers to learn, love, and leverage their unique selves to reclaim their enthusiasm for both work and life.

“CF has given me the enlightening perspective that every single day is a gift. I've too often witnessed people living miserable, passionless lives, doing what they believe they think they should do rather than pursuing what they want and love to do. This book is my effort to inspire others to use their unique gifts to supercharge their happiness and purpose in both work and life,” Sarina said.

CF has motivated Sarina to live with great enthusiasm and clarify her mission to inspire others to do so as well. Her book is a combination of her passion for living a full life, her experiences supercharging productivity and effectiveness in business, and her love of writing and sharing ideas.

Gusto is available on Amazon. To learn more about Sarina and her work, visit her website.

 

 

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Jessica Pena
Author, Embrace Yourself

Living with cystic fibrosis was the lesser of my worries as a child, having grown up in an abusive home. By my 23rd birthday, I'd not only lived with cystic fibrosis and learned to cope with, and even embrace, my mortality and physical limitations, but I had also escaped and healed from the past abuse and traumas of my childhood. I found strength and passion after I broke free of the limiting beliefs that I was carrying around based on the poverty and abuse I once endured. I started my own business, wrote and published my first book, and started coaching other CFers to embrace their lives and to be exactly as they are. I help them open up to the joy surrounding them and use the weight of their journey to fuel a brighter future.

Embrace Yourself is a book about recognizing how incredibly powerful and resilient we innately are. The book is a source of power and inspiration that reminds us to dig into what makes us who we truly are, get real with ourselves, and overcome the struggles and beliefs that have us hesitating instead of stepping forward and living a joyful life.

This book and the accompanying online course are meant to guide my fellow CFers and survivors of abuse and trauma into recognizing their own power and overcoming the burdens of shame, guilt, and fear.

Embrace Yourself is available on Jessica's blogAmazon, and most online bookstores.

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Bethlehem is a senior web content coordinator at the Cystic Fibrosis Foundation. In her role, Bethlehem manages the editorial calendar, contributor relationships, and production process for the CF Community Blog. She also works to implement the editorial calendar for other areas of the site, and maintains a consistent look and feel throughout cff.org. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family. Her guilty pleasures? Watching YouTube vlogs and eating tons of chocolate.

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