Lessons From a Hive: Honeybees and Caregivers Remind Me to Grow

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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

Spring is a magical time of awakenings, a flagship season of gentle nudges and reminders from the natural world outside my window.

Lately, I’ve felt like a honeybee, and I happened to be visited by one in the midst of enjoying springtime vibes the other day. Suddenly noticing the kindred spirit buzzing near the crown of my head, I felt the prevailing attitude of conviviality between myself and the bee, embracing its wisdom more than ever.

Life has been busy. I’ve been launching a new entrepreneurship endeavor, pursuing certification in reiki therapy, polishing and buffing the grand architecture of my care team, adjusting to independent living, and embracing new love since entering the dating scene again — which has involved many serendipitous dates of the coolest creative sorts, like adaptive yoga sessions, accessible bowling, indoor camping, and becoming better acquainted with my fantastic neighboring state of Illinois.

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While the dating portion of that list is where one might assume the mention of “juicy” in my previous column is derived from, it surprisingly isn’t. Romance has certainly illuminated my life over recent months, but the greatest entanglement of havoc I’ve endured has revolved around my caregiving team.

I’ve been writing about the lengthy process of building my care team since last year. Running such a team requires great effort, time, patience, and strategy. As I began to employ more people at the beginning of the year, I was relieved to see the pieces falling into place. 

Two months into my new living situation, imagine my dismay when the position with one of my main caregivers evolved into an unexpected poison apple. I knew I’d encounter rough patches and bumps along the way as I acclimated to new people in my care routines, but I didn’t anticipate how one of my caregivers would prove to be a disturbance in the force so rapidly after being hired. 

While I haven’t had a care team of this magnitude since my college years, I’ve required daily caregiving throughout my entire life with SMA. Even though the primary roles shifted and evolved as I met different milestones in my life and ushered in new seasons, needing consistent care is all I’ve ever known. 

Addressing uncomfortable circumstances by way of difficult conversations is a necessary evil when hiring multiple caregivers. As this scenario unraveled and my frustrations augmented, I attempted deep breaths and urged myself to grow instead of wilting beneath the raindrops of my eyes. 

As my good friend Kevin Schaefer has recounted in his columns, we must take the good with the bad (and the crazy) when employing a care team. Often, the only way to figure out if a person will be a positive fit as a caregiver is to give them a whirl and see how it goes. 

Sometimes, caregiver relationships arise of the most unpredictable occasions, as if they’ve come to fruition after being scribbled across the canvas of the stars long ago. Personalities click, and the rest is history. Other times, caregivers who appear very promising on paper as highly experienced certified nursing assistants or healthcare workers actually turn out to be the worst possible fit. 

Like the noble honeybee, I’ve reminded myself that I can do hard things — things which people so readily believe I cannot do based on my disabled exterior, because they fail to look at the glowing strength of my heart and spirit. Overcoming this spell of adversity has fortified my ability to actualize autonomy, determining my preferences for caregiver personalities and backgrounds. My body is not an easy place to be, so open communication with my caregivers is crucial in helping them understand the hum of my life with SMA.

I’m the queen bee of a tightly woven honeycomb ship, directing everything I need to thrive from moment to moment. In a rotation of schedules, I’ve assembled a dynamite crew of some of the most upbeat, kind-natured, genuine gals and dudes I’ve ever encountered. I strive to display my gratitude for their service and dedication to this job with me by offering scheduling flexibility, advocating for fair wages, and consideration of what works for both of us. 

Within the community of my team, I encourage healthy dynamics and hope it resonates with my employees. Each member plays an integral role. And although everyone might or might not like each other, we must all respect one another and consider how our actions and outlook affect the entire landscape of care.

The myriad personalities of my caregivers punctuate the monochrome tasks of daily living with colorful palettes of talent and laughter, robust strokes of compassion and understanding. A constructive and uplifting team of caregivers can yield the sweetest honey, daring to coat my life in a raw nectar of empowerment.

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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