How Music and Meditation Shaped My CF Journey

When my daughter, Nani, was born, I got to know the routine for her cystic fibrosis and was able to introduce her to the practice of meditation. Years later, when I began to lose my singing voice and could no longer perform, I was surprised to learn I have CF, too.

July 30, 2024 | 10 min read
A headshot of David Cecil
Dave Ray Cecil
David wearing sunglasses and playing the guitar next to his daughter Nani, who is wearing sunglasses and playing the harmonica

From a very young age, I felt aware that life was not limited to just what I saw. There was a mystery around me that was palpable and obvious, even though no one talked about it. I was a normal kid getting into occasional mischief, but this feeling of something deeper about life never left me. 

I went to a Catholic school just around the corner from my house, where I was given a language to begin to talk about this great mystery. While it acknowledged its existence, what I learned about it was never quite as accurate as my direct experience. Music brought me closer to it than anything else and I spent long hours in my room escaping into it.

Unfortunately, at age 5, my brother went through major health issues and was confined to a wheelchair. He was a year older than me, and I remember feeling like my family was crumbling during this time. Not long after that my father left, pushing me further into music. While there was constant turmoil within my house, I immersed myself in music, bringing me closer to this deeper sense I longed for.

During all this time, I didn't have many health issues apart from occasional heartburn, environmental allergies, and the typical colds and flu that any other kid would have. Any health concerns of mine were overcome and were understandably overshadowed by my brother’s challenges. My passion for music grew, and so did my desire to find this deeper mystery. My interest in music stayed strong through my teenage years, and I began playing guitar and writing songs. I lived abroad, played music, and traveled in my 20s, but I eventually returned home and continued studying religious texts and spirituality. 

After so much exhaustive intellectual seeking, it was natural for me to move into meditation. I stayed in a deep cycle of meditation off and on for two years. I held a meditation workshop at my house and met my wife. We were married on June 6, 2010, and our daughter, Nani, was born four years later. Our blood tests had revealed that my wife and I were both carriers of the F508del CF mutation and we received a prenatal diagnosis, but this didn't matter to us.

Although unsure how it would unfold, we were very excited about our journey with our little girl. Nani was the most beautiful baby with a full head of black hair and every one of the nurses in the NICU would continually fight over who got to hold her. She went through a successful surgery for meconium ileus, and after two months we brought her home. My wife and I enjoyed the first years with her, doing manual chest PT and getting used to the meds and therapies for her CF. I introduced a meditative practice to her at age 5, mainly to help her get to sleep when she found it hard to stop thinking. The simple practice of moving her attention to her breathing when she noticed her thoughts worked well for her, and it wasn't long before she began utilizing this practice on her own. This eventually carried over into her daily life, using the practice when she felt overwhelmed to release the tension in her body. 

Her quarterly checkups were always very good, and her pulmonologist was continually impressed with her numbers, weight, and growth. She only had one hospital visit before age 6 for a blockage, but her coughing gradually increased, and at times she would cough for most of the night. She got sick fairly easily, but her pulmonologist was always swift with antibiotic treatment. I was still playing music during this time, and a radio show in Kingsport, Tenn. invited me to play on a show. Gunnar Esiason, an adult with CF, happened to be a guest on that show. During the interview, all he talked about was this new medication called Trikafta®, and how his life had drastically changed because of it. I mentioned my daughter to Gunnar during the show, and while on air he told me that my daughter would have a very long life. I cried for most of the five-hour trip home that day. 

At age 7, Nani began taking Trikafta and sure enough, her life completely changed as did my wife’s and mine. I continued to play music pretty regularly during the following five years, singing the songs I had written for folks who would listen. But I began struggling to keep my sinuses and respiratory system clear. A sticking in the back of my throat caused me to cough. I began having to load up on over-the-counter meds before my shows — and even went as far as using one of my daughter's albuterol inhalers before singing. 

It continued to get worse over two years with hacking and coughing through the night. I was experiencing continuous nauseous feelings and severe constipation until eventually, the swelling in my throat would not allow me to sing and I had to stop playing music for people. This sent me on a journey to figure out what was happening with my body. I did test after test with every kind of doctor and found nothing until one day, my wife suggested I try my daughter’s pancreatic enzymes, and to my surprise, they worked very well. I spoke to my daughter’s pulmonologist about these findings and she advised me on what tests to have done. Through an elastase test, I discovered a pancreatic insufficiency, my sweat tests were high, and a DNA test revealed a second unknown CF variant. 

I was diagnosed with cystic fibrosis by the end of the year. Things got better for me health-wise as I began taking all the same medications I had been administering to my daughter for the last 10 years. I knew how to care for CF, so it wasn’t alien to me, but it was ironic, to say the least.
 

After a few months, I began taking Trikafta and miraculously, my voice returned. I was able to sing, write, and play again. Having something returned to you that was lost is a wonderful experience, but I should mention that losing it was wonderful as well. Music is not who I am — it’s something I love doing. Losing it somehow confirmed the obviousness of this truth. I don’t think I could've seen this had I not endured the loss of it. 

While my experience of life has changed, CF has brought me closer to my daughter and my family. It has given me a deeper appreciation for life and its mystery and wonder. I would say having a consistent meditation practice brings me a feeling of ease that carries through every experience in my life. Life is constantly filled with outward movements, which are like the exhale of a breath. But the exhale is brought into balance with an inhale. Meditation for me is that inhale. Without this balance, I become exhausted, tense, stressed, and overwhelmed more quickly and easily. It is clear to me that life really isn't about what happens to you, it’s more about how you choose to handle what happens to you.

Having CF can be very challenging. CF can be intensely demanding and needy at times, causing the experience of my life to be very difficult. But CF is not all my life is, even when things are tough health-wise. Yes, it can get most of my attention during these times, but I've found that if I allow it to consume all my attention, it will consume me as well. So, it has become clear that I have a choice. When I notice it becoming consuming, I can choose to gently bring my attention to my breathing for a few conscious breaths. This brings me back to the present moment and away from consumptive thinking. When my attention moves away from my thoughts about what is happening, and I focus on my breathing, suddenly there is a slight ease. As I experience this slight ease so does my taxed body. Not only is my body challenged by CF, but it’s also challenged by my resistance to whatever challenge it's attempting to deal with. That's tough on it, so I've learned to give it this slight ease when I can. To love and care for my body enough, to have the courage to remove my attention from whatever compelling story I'm telling myself, and take a nice conscious breath. To stop following thoughts that are often very resistant and negative.

I’m not implying for one second that I ignore what is happening, nor am I saying that what I'm telling myself isn't happening. It’s not like it's going anywhere if I remove attention for a few breaths. Sure, it’s only a slight ease and a few brief moments in time, but if you multiply that by the days, weeks, and months out of a year, you start to see how much rest this adds up to be for anyone’s body.
 

To me, meditation has become one of the most important parts of my daughter’s and my therapies living with CF. CF has surely brought us closer and it’s not a curse to us or something we feel needs to be fought. In fact, it seems to teach me daily how lucky I am to have life in my body. How fleeting this all is, and how wonderful. 

Sure, I will die one day just as everybody else will, but I prefer to live while I'm alive regardless of the conditions. To pay attention to that luckiness no matter how small it is. I am blessed to be a part of the CF community with all of you.

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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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A headshot of David Cecil

Dave is father to his daughter, Nani, who was born with cystic fibrosis. Dave was also diagnosed with CF in 2023. He works as a real estate broker and musician, and he is also a meditation teacher. He resides in Greensboro, North Carolina with Nani, his wife Brittany, and his dog Boogus. You can contact Dave via email or through his website anytime.

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