Some days, I wish I were a bird

A columnist with CF imagines living in a body that can fly

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by Kristin Entler |

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A pod of pelicans flies over my head, then out over the ocean waves, where they skim the surface of the water. One in the middle of the mass pumps its wings, and the formation follows suit like a ripple effect in both directions. I’m struck by the gracefulness it takes to avoid crashing into each other or the water. By how, as individuals, they move as a singular unit. In this moment, I wish I were a bird, too.

The sand along the Gulf Coast, where I am vacationing, is so white — a product of millennia of quartz being deposited from the Appalachian Mountains — that it almost hurts to look at without sunglasses. I try to count the pelicans, but as they pass one another and swoop up and down with the ebb and flow of the waves, I keep losing track around 17, or 20.

A quick Google search informs me that pelicans fly in formations like this for the primary reason of conserving energy. Simply, by using the wind and an updraft that they manipulate with the shape of their bodies, they can coast, something called a wingtip vortex (which, in my opinion, is one of the coolest scientific terms). It’s like how we humans let gravity pull our cars downhill to conserve gas. The dysfunctional nature of my singular body in contrast to this interdependent flight feels heavy in my lungs.

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The U.S. Food and Drug Administration approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for patient use just over five years ago, and I’ve been on it for almost as long. For a combination of reasons, I opted to wait to start taking it until the end of my semester in a master of arts program at college that December. Now, I’m amazed at how sick I used to feel waking up every day, my body struggling to function as an independent unit.

Before Trikafta, my oxygen saturation levels dropped low enough to require supplemental oxygen anytime I got a cold, which flared an existing lung infection, causing an exacerbation. The pattern was so consistent that catching a cold still sends my mind-body into a dissociative state. In other words, survival mode.

Now, it takes only a few days of forgetting Trikafta doses for my lungs to feel junky like they used to every day, which makes me remember the hours of breathing treatments I used to do, now prescribed “as needed.” My resting heart rate jumps high. I am just one body struggling to function without outside intervention, which in this case takes the form of years of science coming together in three pills a day that, for the first time in my life, make my body functional.

And I am just one body. One mass of organisms working within a unit that was born barely surviving.

The pelicans’ heads dip, barely noticeable, to watch the water. I imagine what the wind against my feathers might feel like, recalling weekends on the lake when I was a kid, the boat pushing us against wind gusts. I envision a vast plane of ocean stretching out around me for miles, diving into the deep blue to scoop up sustenance. And, much like we do, waking up every day to do it all again. I imagine living in a body that can fly.


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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