Realizing the Power Behind My Voice

As a professional vocalist, for most of my life I tried to hide my CF. But, after opening up about my disease and creating a program to help others through singing, I realized just how powerful my voice really is.

| 4 min read
Ashley Ballou-Bonnema

Singing has always been a huge part of who I am, and so has cystic fibrosis. But, for much of my life, I felt my identities as a singer and someone living with CF could never intersect. I remember the frustration of having a passion for singing -- something that filled my soul and gave me so much happiness -- while living with a disease that seemed to fight against it. However, I also realized that while CF limited my singing ability at times, every phrase I sang also allowed me to become increasingly more aware of my own respiratory system. Singing helped me to be “in tune” with my body and how it all felt even if the slightest thing was off.

So, instead of focusing on how CF limited me, I decided to see how singing could positively impact my life with CF and carried on with my dreams to become a professional vocalist by pursuing graduate school. But, even when I decided to take the next step in my education, I continued to hide my CF because I didn't want special accommodations or to be seen differently by my peers.

Although I began to appreciate my life as both a singer and someone living with CF, I didn't think the world would have the same positive outlook.

At the age of 27, with lung function of 25 percent, I thought my song had ended. My health began to decline, and it was then I realized that I could not hide my CF anymore. I was hesitant to open up to others around me, but the support I received was remarkable. After months of tears, fighting to breathe, and the incredible care of my doctors, nurses, and pharmacists, with a lung function of 54 percent, I stood on a stage and gave my final graduate voice recital. Two days later, I graduated with my master's degree in vocal performance.

I'm continuously amazed at the power of singing. Singing wasn't just a passion, but a catalyst for connection and building empathy and understanding. Singing helped me physically, but it also provided an outlet and support system that I never knew was missing from my life. I remember thinking, “What if I could share the art of singing with others who also had CF? Could singing positively impact their life both mentally and physically as it has my own?”

It was from this realization that I decided to create sINgSPIRE -- a program to combat the effects of cystic fibrosis through the art of singing. Through sINgSPIRE, individuals with CF -- at all levels of singing ability -- from around the world are paired with professional voice instructors for private voice lessons via video call to work on building respiratory strength, breath management skills, respiratory and body awareness, and utilizing those skills to sing.

Around this time, the Foundation launched the Impact Grants program, which provides grants for programs that benefit the CF community. I excitedly applied for the program and sINgSPIRE was graciously awarded an Impact Grant, allowing me to launch my first session in 2016. Today, sINgSPIRE has had a profound impact on the lives of 41 students … and counting.

After creating sINGsPIRE and seeing the effect that it has had on the confidence, happiness, and health of others, I realize just how important it is to share your voice -- and that your life's purpose comes from combining your passion with your self-truth, whatever that means to you. Anything is possible when you find your own voice.

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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.

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Ashley Ballou-Bonnema is a professional vocalist and private voice instructor. She serves as the executive director of Breathe Bravely, an organization passionate about giving voice to CF. Diagnosed at 1-month-old with CF, Ashley is a passionate advocate for the CF community. Ashley was inspired to bring her life as a musician and life as an individual with CF together through a program called, “sINgSPIRE,” an innovative approach to combating CF through the art of singing. Ashley and her husband, Mark, along with their dogs, are lucky to call Sioux Falls, S.D. home.

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