‘Her Voice’: How Cystic Fibrosis Affects Vocals

Nicole Kohr avatar

by Nicole Kohr |

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Her Voice” from Disney’s “The Little Mermaid” is one of the most beautiful songs. In the Broadway show it was sung by Sean Palmer as Prince Eric, and his voice hits me right in the hormones:

“And her voice
It’s sweet as angels sighing
And her voice
It’s warm as summer sky”

I used to flitter about my room, romanticizing that Prince Eric would chase after my beautiful voice. Unfortunately, my voice was rarely sweet like angels sighing. My voice was usually hoarse and wavering like a 90-year-old with emphysema.

Vocal changes

When I was little, maybe 6 or so, I had the voice of an angel. Musical theater melodies would come to life when I moved notes from page to stage. Years of coughing, however, began to weigh on my vocal cords.

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My doctors said it was common for an active cougher to experience vocal changes, especially in cystic fibrosis patients. Throw puberty and medication on top and there was nothing stopping me from becoming my elementary school’s first female baritone.

Performance

By the time I reached middle school, my voice had become so fragile that the ends of my sentences would dissipate to a whisper.

The annual choir auditions were coming up. Although I really enjoyed participating in my school’s performing arts programs, all the girls in my grade were auditioning for choir, so I knew I didn’t have a chance of getting in. I auditioned for kicks and giggles and managed to squeak out most of the notes the director played.

“You’re a soprano 1!” my friend exclaimed as she read the choir posting the next day.

“Wow!” I replied in shock. “Everyone else must have sucked.”

I have no memories of choir outside of the director singling me out to critique me.

“You’re flat, Nicole.” “Louder, Nicole.” “You’re breathing at the wrong time, Nicole.”

I pushed my voice past its breaking point trying to keep up. It dulled my love of singing and reminded me that my voice was a standout in choir, and not in a good way.

By high school, I developed an internal brick wall that separated me from other people’s opinions about my voice. I knew they could hear the cracks in my voice. They could hear me clearing my throat a million times a day. It was embarrassing, but there was nothing I could do about it.

Vocal rest

After I graduated from college, I was admitted into the hospital for vocal cord surgery. Years of nebulized and IV tobramycin, acid reflux, and self-inflicted trauma resulted in a painful mass that grew between my V-shaped vocal cords.

“It must be torture not talking,” my mom repeated as I began my three-week journey of vocal rest. On the contrary, years of vocal strain made vocal rest feel like a vacation.

Friendship

I experienced one saving grace during my vocal journey — friendship.

I met one of my best friends, Heather, in elementary school. She’s like personified sunshine — bright, warm, and giving. Her voice is naturally set high, so she could hit mezzo-soprano notes with little effort.

We performed in choir and community theater productions for years. I always ended standing next to her, which was helpful because I struggled with every note. I’d hum a wide range of notes up and down until eventually Heather would lean in and hold the correct note for me to copy. It was a huge help, but she never made a big deal of it.

Heather also visited me during my vocal cord surgery. We communicated via my mini-whiteboard, and she stared enthusiastically at my X-rays. She’d been studying vocology and speech pathology in school, so she was familiar with the terminology. Now she’s the founder of Live Vocally Virtual Voice Studio.

My second saving grace was Ashley. She’s a fellow cystic fibrosis patient and the founder of Breathe Bravely, a nonprofit that gives voice to CF. I admired her for quite some time before I asked her to join “Fall Risk The Musical” in 2019. She was onboarded as a vocal coach and quickly became one of my best friends. I still send her videos of me attempting to sing Broadway songs on my way to Duke University Hospital. She’s like personified poetry — poised, encouraging, and inspiring.

I’m back on tobramycin as of Feb. 12, but I’m not afraid. In recent years, I’ve come to love my voice. It makes me feel like a veteran of the CF community.

When I listened to “Her Voice” the other day, I danced around the room, knowing that my husband had held my hand through three weeks of vocal rest. My friends whisper notes to me and encourage me to sing. Most important, some of the lyrics finally apply:

“Pure and bright, it’s always near
All day, all night
And still, I hear it calling 
Her voice.” 


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Paul & Debbie avatar

Paul & Debbie

What a great story Nicole, and you are a great story teller! Thanks for this pearl.
I can relate to the voice problem, I was not very satisfied with my voice either for a long time in my life.
Coughing can cause disasters to the chords indeed. I was preparing for conservatory when I was 17, classical piano.
One of the reasons I didn't push it through was my total inability to sing. And I was interested in playing piano only, so I chose another career and kept the piano as a dear hobby. Played every day since.
Talking about the voice of a 90 year old:
Recently, because of not coughing much anymore on Kaftrio, my voice improved. I shot a little video of myself (it's on our web page. look for Paul Jordaans on google, you will find us) and to my surprise, I sound a bit like the old David Attenborough at the moment. He is currently 96, so that should not be a good thing to recognize, but his voice is not bad at all - so at 58, I am willing to settle for that comparison happily. And his English pronunciation is to die for.
Ciao!

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Nicole Kohr avatar

Nicole Kohr

Thank you for the kind words, friend! Cheers to your new voice! And to every note on the piano!

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