A Wildflower in the ‘Wheelderness’

We are all affected by changes that call for us to acclimate to the seasons of our lives.

Year after year, a wildflower finds its place under the sun. Spry leaves will droop in heavy sorrow during the drenching spring rains. A sturdy stem will bend in summer whirlwinds that dishevel the flower’s petals, but rebound in triumphant revival. 

From time to time, the wildflower might be trampled beneath the thumping paws of a woodland creature on the run. Still, a wayward backpacker will stop for an awestruck moment in admiration of the charming bloom before trailing on. As a wildflower weathers the elements of its landscape, its story will always tell of thriving in sun-soaked afternoons.

My story began in the heart of Wisconsin during that lovable decade defined by boomboxes, geometrical shoulder pads under sweaters, jazzercise, and really big hair. As an infant, I met all the typical milestones of development, until the ticking of the clock signaled my body to walk on its own. It simply didn’t happen; that’s when my parents began to worry. I was diagnosed with SMA type 2 at 18 months old.

Months of testing eventually revealed a neuromuscular disorder; but in 1987, the medical climate was not as saturated with knowledge about SMA as it is today. During childhood, it appeared my strength level aligned with a stronger type 2 on the physical spectrum of SMA. I like to introduce myself to my mates in the SMA community (SMAtes) as Katie, SMA type 2.6 — and they usually understand exactly what I mean.

Where you fit along the SMA spectrum can be difficult to articulate. Those of us who fall into the same broad category may display differences in physical function, so our abilities and caregiving needs can vary greatly.

As time rolled on, so did I. I began piloting a power wheelchair during my toddler years. I grew up in a tiny town where I was the only kid with a physical disability who attended mainstream classes. (As you might imagine, that scenario in itself lends for some pretty interesting storytelling.) 

Over years of being immersed in the beauty of the Great Lakes region, I developed a deep appreciation for the splendor of the natural world and a strong connection to the outdoors. 

Fast-forward to the present day. I’ve meandered a winding route of detours, alluring roadside attractions, highlands, valleys, and uncharted territories. Becoming an adult burdens us with responsibilities and expectations, but also allows us to choose our paths. 

From a young age, we are pressed to answer the question of what we want to be in life. After much contemplation, I decided long ago that I didn’t want to be only one thing. Do any of us, really? 

Understanding the circuits we travel throughout life has often piqued my interest; fittingly, the curtains of my college years closed with a background in Human Development & Family Studies. My past experience includes working in healthcare; leading a support group for individuals and families coping with an array of neuromuscular diseases; and writing about accessible recreation across Wisconsin.

Through it all, my connection with nature held true, soundly planted within my soul. My heart was fortunate to find a companion named Andy who shares the same zest for the wilderness. Discovering the accessibility of the outdoors became my pastime of choice, and I wanted to leave the wheel prints of my purple Permobil (named Violet) wherever they could possibly go. Not only did I wish to continue exploring as an adaptive recreation enthusiast, but I wanted to share my knowledge with others who cope with mobility challenges.

When I engage in adaptive recreation, I am in my element, feeling free and adventuring in my very own way. SMA can feel like the glacial grip of a ruthless giant, thrusting us into the shadows. But I have found that life isn’t about scrambling around after scattered flecks of happiness that are dimly glinting on the ground. It’s about grasping onto the sources of light that cast enough radiance over the vista of my life to keep the SMA shadowlands at bay.

Those of us with SMA are as different in our life paths and backgrounds as an entire field of wildflowers, yet we journey along a common thread. I am grateful to be a part of this community, and I invite you to join me in a reflection of ventures under my column, “A Wildflower in the Wheelderness.” May we flourish together in our place under the sun.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.