Though she’s lived with cystic fibrosis since she was 17 months old, Olivia never thought of it as something that made her different.
Growing up, her daily medication routine was just part of her normal childhood. Most of her attention was focused on gymnastics, theater, and singing. After starting flute in the fifth grade as a way to help her lung capacity, she developed a deep love of music. By high school, she was playing guitar and writing her own songs. Life was good, and CF was only a minor part of it.
That changed when Olivia began college. As she threw herself into her studies, she made less time for her health. Early in her sophomore year, Olivia got so sick that she returned home and went to the hospital. Her pulmonary function test (PFT) scores had dropped to a personal low of 53%, a sign of her drastically reduced lung capacity and overall health decline. She spent two months recovering in the hospital, followed by another month at home.
For the first time ever, Olivia understood just how much CF did make her different. This was a frightening and difficult realization, and it forced her to stop and re-evaluate her life. During the emotional, lonely winter of her recovery, she started capturing her feelings in song, particularly her frustration, anger, and helplessness. Songwriting helped her find some peace with her situation. Even though she struggled to regain her lung function in the months that followed, Olivia chose to embrace patience and positivity.
Today, Olivia feels she “owns” her CF. She isn’t hiding from it, and she’s not angry either. In a way, she’s back to viewing it as a part of her—albeit a part she can’t ignore. With a new sense of purpose, Olivia has embraced her musical career and is trying to help raise awareness of CF.
She recently recorded her first album, The Starting Line, an alt-country EP that explores her emotional journey with CF. One of the songs on the album, “I Choose Life,” is the theme song for CysticLife and its Community Driven Research Fund. The song’s lyrics speak of choosing life and a smile over overwhelming sadness and negativity—it’s a philosophy that fits perfectly with CysticLife’s goal of helping the CF community take control of its destiny.
And it’s a philosophy Olivia has embraced for her own destiny, too.
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members of their awesome community! CysticLife.org sprang from a blog started by CF patient Ronnie Sharpe to track his life and exercise routine. Since then, it has grown into a vibrant social network boasting over 8,000 members exchanging tips, ideas, and encouragement. Along with providing resources like educational videos and reading materials, CysticLife.org is collaborating with the Mayo Clinic for a community-driven research project investigating the benefits of exercise for CF patients. If you’re interested in contributing to the CysticLife Community Driven Research Fund or want to become a CysticLife member, drop by CysticLife.org today!
