In My Nights With SMA, a Spider Helps Me Consider the Life I Construct

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by Katie Napiwocki |

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

My vision bloomed as I blinked my contacts into their daily parking spaces atop my corneas. I looked around, gathering my wits. Then, I noticed it.

It hung over my tea kettle, gleaming in the haze of dainty stovetop lights that cast an aura across the morning darkness of my kitchen. Even from a distance, its intricacies caught my eye and earned my admiration.

I peered out into the kitchen through my bedroom doorway. Moments prior, my overnight caregiver helped me sit me up in my bed as dawn broke through the clouds. Light on her feet, she moved in swift choreography to the tempo of coffee grounds and water droplets — a lovely dance fueled by the sunrise and a desire for caffeine. 

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My caregiver brought me a cup of coffee and said, “Someone was very busy last night.”

I sipped, smiled, and nodded. I knew she was referring to an impressive spiderweb that stretched from a corner of my kitchen cabinet up to the overhead range of the stove, and down to the adjacent microwave perched on the countertop. In the web’s backdrop, a canvas art print of the tea party scene from “Alice in Wonderland” clung to the wall.

Once I was situated in my wheelchair for the day and finished with my morning care routine, I made my way over to the spider. She sat in the center of her web. Considering the sheer size of her freshly furnished abode, she was both regal and humble, tiny and fierce.

The web was meticulously spun, tethered this way and that. I thought about the conversation I had with my caregiver earlier while she helped me shower, dress, and get ready to greet the new day. We talked about the significance and symbolism of elements in nature, contemplated the universe sending us messages, discussed the tireless work of spiders, and agreed how neither of us wanted to destroy this beautiful masterpiece that hadn’t existed merely seven hours earlier in the timeline of our reality.

As any amazingly qualified caregiver would do, mine suggested we name the spider Charlotte.

I went about my morning. Charlotte remained on my mind, beckoning me to bring meaning and tangibility to an untouchable world.

Charlotte was a spider, yes. She was in my personal space, yes. I generally don’t prefer those two scenarios to blend. But here we were, together. I decided to leave her for the day, then set her free to roam in the great outdoors where she could be her glorious arachnid self. This apartment was not built for her, and I know the feeling of trying to fit into a scenery that is wildly unsuitable for my needs.

Charlotte was the sole architect of her abundant existence. She owned her joy and sorrow, her pain and prosperity. Her craft appeared flawless, emitting an illusion of perfection. She maintained keen awareness of outside forces with the capacity to destroy or influence what she builds. Yet, she spins resiliently without hesitation, because the alternative is grim. If she casts more web, imagine the places she’ll visit and the things she’ll see!

Over the past year, I’ve moved away from an entire reality I once knew. I’ve dared myself to refrain from perceiving the difficult events of my life as unfortunate circumstances, and accepted the many ways in which these hard moments are twists and turns in a transition toward beauty and refocusing through new lenses. 

I work tirelessly to keep my care team running. I manage a disabled lifestyle with as much integrity and grace as I can. I deal with maddening self-advocacy matters on a daily basis. I’m often functioning in survival mode, thinking in next moves and what-ifs. I’m planning my schedule weeks and months in advance, acknowledging outside forces that could be a wrecking ball to my passionately woven life of wonderment at any given time.

To nondisabled folks, my life might look clumsy, undesirable, and disheveled. The beauty of a life like mine is really only something my loved ones, my fellow SMA mates, and I can understand or relate to.

I’m a woman who knows what she wants and how she feels, while trying to hold myself and my web together every single day and night. I live and love with the best of intentions in hope of attracting all that nourishes my soul. 

Like my friend the spider, I build and rebuild. I assure you, it will take me longer than seven hours beneath the moonlight. But we all must move at our own pace, in a way that is best for our bodies, and without concern for how others might harmfully judge or assume false narratives regarding disability.

So far, I’ve survived every one of my worst days. I continue on, weaving to my strengths.

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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