How music has helped me survive the emotional roller coaster of CF
I could build a timeline of my medical history using nothing but a playlist
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Music has always spoken to me. I don’t remember a version of myself that didn’t have a song for whatever I was feeling. Before I had words for grief, I had a melody that held it for me. Before I could explain fear to a doctor, or anger to my mother, or the particular loneliness of being sick in a body that was just supposed to be a kid’s healthy body, I had a radio playing music that understood me better than I understood myself.
That hasn’t changed in 55 years. If anything, it’s only become more essential to me.
People sometimes talk about music like it’s background noise, something pleasant playing while real life happens. For me, it has never been the background. Music has been the foreground. It’s been the thing I reach for the way some people reach for a friend’s phone number, or a journal, or a therapist.
There is a song for every emotion I’ve ever had, and every situation life with cystic fibrosis (CF) has ever put me in. Whether it was the pulmonary exacerbations, the hospital admissions, the need for supplemental oxygen, the intensive care unit, the transplant, or the long, slow climb back to life, there is a song for the array of feelings that accompany each one. I could build you a timeline of my whole medical history using nothing but a playlist, and it would mirror my medical chart.
The songs I sing
What music does that talking can’t is let me feel something all the way through without having to explain it first. When I was too exhausted to describe what an exacerbation felt like, music allowed me to close my eyes and withdraw from the outside world to rest. Or I could put on something loud and furious and let it be angry for me. When I was scared in the way only the unpredictability of CF can bring, there was always a song that could hold that shapelessness better than any sentence I tried to form.
And when things were stable, I could belt out gratitude at the top of my lungs, even if it led to a coughing fit. Mentally and emotionally, it would be worth it. The lungs I’ve had for almost six years now, the ones gifted to me through organ donation, allow me to sing at times in a way that feels like praying. I feel the music and words in my cells, and they help me process all my emotions.
My musical taste spans nearly every genre, and I think that’s not an accident. CF has never let me feel just one thing at a time. A single day could hold fear and defiance and frustration and sadness and rage, sometimes within the same hour, and music has a library big enough to match that. Some days call for something aggressive enough to match how unfair it all feels. Other days call for something soft enough to let me finally cry about the thing I’d been too busy surviving to cry about.
There’s a song for the 2 a.m. IV pole and a different one for the first day I walked without oxygen after transplant. I’ve never needed just one kind of music, because I’ve never had just one kind of life. CF life is a roller coaster, and music has helped me ride all the ups and downs.
I don’t think of this as a coping mechanism in the clinical sense, but I know it functions like one. I think of it as a type of translation. Music has always been able to say what I couldn’t say for myself, and somehow it teaches me the words I was lacking. I’ve learned more about my grief, fears, and hopes by paying attention to which song I reach for on a given day than I ever have by sitting quietly and trying to name it directly.
Long play
Fifty-five years in, I’m still breathing, and still listening. And I’ve come to believe emotional regulation isn’t always about calming down. Sometimes it’s about being handed permission to feel the whole size of something, loudly, for three and a half minutes. Then you can set it down and keep going. Music has given me that permission more times than I can count.
I hope everyone reading this has found an outlet or a coping mechanism that helps express and release all of the feelings that come with living with CF. If you haven’t found one, I’d highly recommend being open to exploring different genres of music.
If you’ve found something else, I’d love to hear about it in the comments. It might just help someone else as well.
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.
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