Hot Air Balloons Adrift: Appreciating My Pulmonary Function With SMA

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by Katie Napiwocki |

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I gotta go climb some mountains, and I gotta do it now.

That was the thought I focused on as I emerged from the pulmonary unit waiting room, weaving my wheelchair among sandstone fabric chairs arranged in a labyrinth of novice scale.

Another six-month checkup appointment with pulmonary function tests (PFTs) was behind me. During these appointments, my anxiety runs high. My lungs show up ready for a workout, donning sweatbands, water bottles, and an electrifying playlist that could hype up a turtle in wintertime.

My body felt tired. The previous 90 minutes began with a stint of repetitive breathing exercises measuring expiratory strength, inspiratory strength, and overall lung volume. During some exercises, I envisioned I was a teakettle blowing off the strongest whistle of steam I could muster. Other times, I pictured myself as a superhero sucking every last star out of the night sky in one magnificent inhale. Mostly, I visualized my lungs as great rainbow-zested hot air balloons, filling to a capacity that could sustain a launch to the highest mountain peak.

My mind felt tired, too. All week, I’d been stewing on this appointment and telling myself: If the news is positive, I’ll be golden. My brain runs away with justifications like that, leaving my spirit to commandeer the voyage and consider an alternative perspective: I choose peace before knowing the results. I trust in the flow of life, and I’ll still be strong no matter what the numbers on a piece of paper reveal. 

I entertain these renegade thoughts, allowing them to swell in renaissance proportions of innovation, oomph, and clout within the hallways of my mind.

The next portion of the visit involved introduction and training with a petite exercise device called an inspiratory muscle trainer. After my PFTs, the respiratory therapist calibrated the device to accommodate my current strength and helped me understand how to use it each day. If it allows me to improve or maintain function, that will be a win. And if it doesn’t turn out to be a good fit for my lungs, at least I tried.

My appointment wrapped up with results and open discussion from my healthcare provider. My numbers were slightly lower than the previous measurements, but my provider felt it was a general plateau, and the slight variation was likely due to having an “off” day in terms of strength rather than a new baseline. I accepted this perspective, asked a plethora of questions, and was on my way to live another day.

Rounding that corner from the waiting room, the mountains were vivid to me. I noticed a pattern. Immediately following these pulmonary appointments, my thoughts rarely travel toward the safest corner of the map. I don’t often think to myself, “Whoa, I need to hunker down and do everything I can to protect myself even more.”

No, my thoughts shine a spotlight on all of the elevations I wish to reach while I have the time and ability to do so. I drift to the realm of feathered wings and periwinkle heights, where raindrops are born and the sun hisses into the wind. I feel vibrations rising from my core. From such heights, I can see a majestic face of rock, fractured of reinvention and empowerment in the same way “I’m Possible” bursts forth from “Impossible.”  

Like all things in life, this requires some balance. Don’t mistake my words — I work hard each day to be mindful of my health. I participate in the well-being of my SMA body. I take accountability by engaging in the level of care necessary to offer myself optimum quality of life within my power. My language of self-care is diligently translated across a multitude of mediums, from personal advocacy to caregiver recruitment, to nutritional considerations, and far beyond.

In tending the garden of my mental health, I consider what makes me feel alive. I’m tethered to my SMA, but I don’t wish to be subservient to it. We’re not firmly planted at all times; rather, my SMA and I are woven together in a wicker basket at unknown altitudes. 

I weigh risks and precautions. I ponder what I’m willing to forsake in the name of living and adventure, to explore this one glorious life I have beneath my fingertips. I show up for myself every day, while recognizing which stretches of time require me to strip my raincoat and soak up the sunlight of the moment. I sometimes wear the makeshift halo and bite the apple, all in the same breath.

Whether grounded or adrift, I hold gratitude for these lungs of mine — hot air balloons inflating and deflating to carry me across each new endeavor from which I’m gifted by the hands of time. In a sky of bountiful and life-giving oxygen, we’ve come so far together. 


Note: SMA 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 SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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