I’ve been grieving this month.
On some days, the weather was impeccable. Morning dew twinkled on silk linens of freshly spun spiderwebs. The air smelled of sun-crisped leaves dipped in salted caramel.
Other days were filmed in grayscale. Winds howled through my window frames. Ragged clouds hung in the sky, overstretched in the same fashion a drapery of cobwebs connects the corners of haunted attic space.
No matter the weather outside, my grief was ever-present in attendance.
I hiked accessible trails. I enmeshed myself in movies and books. I reveled in the stories of others. I looked forward to plans. I laughed often. I showed love and gratitude to those around me.
The grief stayed put, a feeble menace humming in my bones. It swelled and faded as deep breaths do. But it stayed.
In the spirit of Octobers past, I pulled out boxes of photos on one of those grayscale weekend afternoons. I looked through photos I haven’t glanced at in quite some time. The flood of Halloween memories proved the precise brew of nostalgia for which my soul thirsted.
Photo after photo, giggle after giggle, I filled the cauldron. I cracked the tomb of reminiscence.
Most kids are enamored by the thought of Halloween. My feelings toward the confectionary filled horror-day were no different — the magic, the mystery, the stomachaches.
Halloween costumes lent me an outlet to shape-shift. For a day, I could choose to be anything. An immortal vampiress laughing in the face of genetic mutations. A lion whose roar of empowerment rang out across her pride lands. An enchanting maiden singing of hope.
For one day, nobody questioned the likelihood of what I wished to become. Nobody reminded me of how tall the odds were piled, high against my favor. Nobody assumed my fate had been decided by muscle biopsies, EMGs, and doctors shrugging in bewilderment.
“What’s your Halloween costume this year, Kate?” my mom would ask. Oh, the possibilities!
I never involved my wheelchair in my costumes. I wouldn’t dream of it. That degree of self-acceptance surfaced much later on. No, Halloween was my ticket to reverie and castles in the sky. Halloween was one of the many loves of my heart, rescuing me from life with SMA.
Looking at the photos of my miniature self, I couldn’t have fathomed the trauma my body would withstand. A feather of 25 pounds during much of my childhood, I wonder where the strength came from. I must’ve summoned it from somewhere grand. At so tender an age, I never saw the tribulations waiting in the distance.
I didn’t know the hours upon hours I’d spend in a pediatric unit. I didn’t know my veins would collapse endlessly, needles pulled from their sterile packages like quivers of arrows. I never knew the smell of rubbing alcohol and hospital hallways would forever evoke a fist of fear to my gut. I never knew my lungs would feel such fatigue from infectious monsters.
In those historic seasons of my life, I felt stuck within the web of my disease. Perhaps if I sat statue still, my SMA would forget I was there. If there were no vibrations from me, it wouldn’t sense me. It wouldn’t consider me a perpetual snack. I could claw my way forward, establishing some shreds of normalcy along the way.
But, what if I’m the one spinning the webs? What if my SMA inspired me to shift from survival mode in childhood to thriving mode as an adult? The webs I learned to weave were habitats for different aspects of my life and personality, shaped to cultivate durability and enrichment. Through all of the pain, I learned an exquisite trade of crafting beauty in my relationships, resilience in my endeavors.
I used to look at spiders and wonder how much silk they could expel before running dry. Now, I merely see the intricate masterpiece they pour their soul into with each twist of thread. It’s a fine art, the spider’s web. And, it’s a lot like coping with grief.
Until recently, I didn’t realize I grieve for my SMA. For those of us living with a chronic condition that threatens our vitality, feelings of sorrow are natural. Some days, it’s more palpable than others.
On a rainy afternoon, grief might knock on your door seeking refuge. Before you know it, you’re having tea with it next to your fireplace. Grab the box of old photos. Show it how far you’ve come. Give it a nod of gratitude, for you’ve moved mountains because of its existence.
If even on your best days you move about with a tinge of grief in your bones, know that you can still be anything you wish to be. You need not wait for Halloween.
Spin your web of beauty.
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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