About the Author: Katie Napiwocki is an incredible storyteller that writes about life with a disability in what can only be described as a poetic manner. Her writing connects those with disabilities from all different parts of the world. She's also an inclusive recreation and adventure advocate, and in general tries to spread disability awareness on her page. To see more of Katie's amazing writing and add her awesome posts to her feed, check out her instagram here!
"A Song of Self Compassion"- By Katie Napiwocki
When I was a little girl, my grandmother would sing a darling tune to me each time we’d see each other.
Arriving at her home, I’d wheel up the walkway and wait at the bottom of a makeshift wooden ramp. My grandmother’s face would appear from behind creamy lace curtains that shrouded her bay window from the outside world. A moment later, I’d hear the side door puff open in a welcoming upheaval. My grandmother would scurry onto the outside porch, holding the door open and serenading me in a grand gesture as I drove my wheelchair into the belly of her petite chateau.
With a jolly laugh and warm smile, her crooning was a nod to a vintage World War I-era love song that rang of beauty and adoration.
When I was a little girl, I felt beautiful.
Some of my youngest memories involve my grandmother’s potent voice singing to me. I would sit at her bedroom vanity in awe of the glamorous trinkets before me. Powder puffs coated in sweet essence of complexion-soothing fairy dust. Perfumes with bulbs that misted fine beads of elegance along collar bones. Classic pigments of rouge and lipstick. A veritable treasure trove of femininity, I now know that I didn’t need these things to feel beautiful, but I found them alluring because they accentuated my inner belief that I was.
Growing up with Spinal Muscular Atrophy (SMA Type 2), my body’s natural features became intertwined with hospital-inflicted battle wounds. I accumulated scars from surgeries intended to correct the parts of my anatomy that refused to fall in line. Hip joints that became disheveled. A spine that curved like a sleepy river. A neurogenic bladder that demanded a different outlet to allow me greater urinary independence.
During toddlerhood, I transitioned from strolling with a walker to the use of a manual wheelchair. As my SMA progressed, I relied on a power wheelchair as my sole means of mobility from here to there.
There was no hiding the brazen ways my SMA had manifested itself within the life form of my small self. I was one of the only disabled kids in my tiny Midwest hometown. And while I was hard-pressed to find many adult role models with disabilities in my corner of the map, there was no shortage of uplifting women to guide me.
As I entered young adulthood, society challenged those rosy visions of beauty staring back at me from the mirror. It made me question if I should take my innermost feelings of radiance and shove them into a musty broom closet. A society of ableism pointed out my flaws. It made me feel unsavory as a sexual partner, and I wondered if I could be a desirable human in the eyes of another.
My physical being wasn’t the only one on trial. My heart faced tribulations, and the woven threads of its fabric are a little bit loose. They’re frayed and faded in spots. The lines are crooked, the patterns inconsistent at times. The structure is antiquated yet sturdy. A heart like this has allowed me to be flexible, to move and bend in ways my flesh cannot.
I somehow remained grounded, overcoming all that had tried to make me crumble to rubble. At any given time, I was a simmering teakettle of love, frustration, strength, fear, happiness and healing. I was often worried about which medical monster was lurking around the upcoming bend, but I kept a spare needle and thread in my pocket at all times for a quick mend.
Many sunsets ago, I would never have found comfortability in posing for a boudoir session. I once thought that was a luxury of sexual expression reserved for women of a normative physique. A typical, SMA-less body that looked sensual and appealing.
Looking at these boudoir photos of myself, I notice that I have not learned to love and accept my body. I’ve grown to do so. Each curve is uniquely mine, and I want to celebrate my body. Growing to love my scars, urostomy, and even my SMA has been akin to Liberare awaiting the slow exposure of an old photograph. As the saturation deepens, each characteristic becomes a new piece of the entire landscape, breathing life into a story that only I can tell.
In a most brilliant panorama, the photos speak profoundly to my deserving soul. They tell a story of self-compassion and the realization that my body is captivating — not in spite of what it’s been through, but because of what it is. It’s the acknowledgement that I am worthy of sexual wellness, sparkling intimacy and carnal gratification as any other human being.
In this life, some people will uplift me. Some will travel beside me. Some will try to fix me. Others will hold me back from my organic sense of self. I choose the ones who sing of my beauty, and who allow me to echo their song unto others in crafting an entire chorus of empowerment.
