Hope, Oxygen, Acceptance, and Other Essentials in the Anatomy of a Cold

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by Katie Napiwocki |

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SMA caregivers | SMA News Today | Main graphic for column titled "A Wildflower in the Wheelderness," by Katie Napiwocki

Most days, I try not to worry about my SMA to the extent that I forget to breathe and live. I attempt to construct a balance in which I’m tending to my health and wellness, fulfilling my desire for disability advocacy, and mindfully living my life as a cool human with an identity that involves a multitude of interests and attributes. (The cool part being subject to those I keep company with.) 

But every so often, it happens.

I awake in the middle of the night to be repositioned by a caregiver. In my groggy stupor, I’m struck with a fearful realization: My inflamed throat is being ravaged by an ominous lump of yuck.

I caught a bug. 

Balance falls to the wayside, and survival mode ensues. My mind becomes lucid, executing blueprints for responding to the assault on my immune system.

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The implications of a respiratory illness on the flow of my entire system are an undeniable nuisance, and the routine of my daily life sails into great upheaval when I’m sick. Internally, my system is coping with higher levels of fatigue from coughing and engaging in a lung treatment regimen. Externally, increased care is required of my caregivers to assist me with this unsolicited endeavor of outwitting and knocking viciously minute beasties to their knees.

I’ve regarded this routine with cordial familiarity throughout my life. Each time a virus settled in my lungs during childhood, my parents engaged in a care regimen to thin and expel my secretions by cough or suction, while promoting healing so that I could return to my baseline — hopefully unscathed in overall physical strength. A nebulizer with albuterol and manual chest percussion at regular intervals throughout the day were common components of care orchestrated for me.

When my pediatrician took notice of increasing respiratory infections, it was hastily speculated that I wouldn’t survive beyond my teenage years. I strived to hold true to my innate desire for individuality and decided to do it differently than everyone else intended or predicted, hoping the universe would embrace me sweetly with linked arms and flushed cheeks in favor of my bold ambitions.

Soaring through my teenage years, I was introduced to a pediatrician who specialized in cystic fibrosis and contributed new tools to my respiratory arsenal: the Vest system for airway clearance and the cough assist device. While my insurance company would argue otherwise, these pieces of armor were essential to my ability to overthrow the threat of secretions within my lungs.

Working through the most recent round of a respiratory virus, I tuned in to all of the methods I’ve accumulated and grown comfortable using at this point in my life with SMA — not only tangible mechanisms, but abstract and emotive ones alike.

Because clear lungs and flowing oxygen are tethered to vitality, I often ponder my own mortality to the greatest degree when I have a respiratory illness. At times, my mind wanders toward difficult feelings related to a burden complex born of internalized ableism. I become fixated on my weak cough; I feel a tinge of disappointment in myself for being unable to cough harder and fight stronger. 

As a war was underway between microscopic entities within my body, I administered doses of wellness elements to nurture my spirit. Healing is multidimensional. When our bodies are confronted by sickness, it’s important to center attention on our emotions and heart in addition to our physical condition.

On autopilot with lung treatments, I thought about the ample amounts of hope that have guided me through the darkest moments of my life. I honored my lungs and diaphragm muscles, ushering sentiments of gratitude toward them and accepting them as nothing less than perfect for how far they’ve helped me travel so far. My cough is weak compared to medical standards, but it’s mine nonetheless, and it’s OK if I require help to infuse a robust vigor of leverage. 

It’s my responsibility to adapt and keep going, to test what works for my body now as an adult with SMA versus when I was a child. I keep an open mind and recognize how my body may change over time. I must continue to strategize ways to best support my body.

As humans, we know ourselves best. It’s up to us to validate ourselves and acknowledge all of the power embodied within, regardless of daunting outside forces or opinions that attempt to defile our sense of worth. A self-defeating attitude will only disempower; it will not nurture a radiant spirit, healthy mind, or wild heart.

We all need oxygen to heal, thrive, and provide a life force. Each of these elements exists not only in the resources available to us, but in our ability to dream endlessly and harness hope unapologetically for what we envision our story to be.


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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