Keeping the ‘Wild Green Thorns’ of Advocacy Fatigue at Bay

Have you ever felt the sensation of the wild green thorns? 

In times of overwhelming frustration, they slither toward the pit of your inner sanctuary from outer reaches. Their barbed tendrils gouge trails of apathy across the stone walls and humble cottage windows surrounding your heart. They bludgeon through glass and slide beneath doorways, parading a pathway of turmoil with utter disregard for the welfare of your cherished personal effects. 

Born from a place where cold mists roam aimlessly and every corner conceals dark deeds, they emerge to devour things that bring the faintest touch of joy — entire fields of sunflowers, golden afternoons, bluebirds, outdoor movie theaters, and bad dad jokes.

I named the wild green thorns on a Friday morning. 

In some combination of working and waiting, I sat at my desk. Warm spring winds and tree pollen spun through the screen of an open window beside me. Like a bumblebee rousing from a nightmare, my cellphone erupted in a frenzy. 

Extending my forearm at the speed of a sloth after its daybreak cup of coffee, I tapped the notification and began skimming the new email with eager eyes. I exhaled a robust sigh of disappointment. The wet blanket of an out-of-office reply smacked my shiny spirit on the apple of its cheek. This time, it left a bruise.

For several weeks, I had connected with a prospective new caregiver. After accepting the position with me, we agreed upon a schedule that was tentatively set to begin on the following Tuesday. I’d done my part, but the remaining piece of the puzzle involved the processing of her paperwork by a third-party caregiving coordination service in which I’m enrolled.

So far, my new caregiver and I had delayed her tentative start date numerous times to accommodate paperwork processing. My Friday morning email was an assertive knock on the ominous doors of disservice and oppression that people with disabilities often face throughout daily life. With gentle conviction but strong will, I issued a directive of urgency, and a respectful reminder of how my daily cares allow me to engage in every facet of life the way nondisabled people do. 

Care coordination programs are my bridges to vast landscapes of independence. Matters of lackluster diligence and untimely paperwork processing can disrupt the entire flow of my life. Pen and paper, organizational charts, and efficient administrative processes all seem cold and contrasting to the warm nature of hands-on care that I receive. But such desk-oriented functions are critical in heralding my opportunity to roll from one day to the next with some degree of ease, structure, and dignity. 

Although these tasks begin in an office, they require heart and compassion in understanding the heightened caregiving needs some people require. 

I turned my head away from the clamor of life and stared out the open window. I could feel the presence of the wild green thorns stalking me with salivating tongues, whetting their appetite for any ray of light within me.

Within the infrastructure of my quality of life, my decree of caregiving needs is written in wet cement. There exists no template for an out-of-office message, no parameters for vacation days. My disability doesn’t offer the coveted benefit of a flexible schedule. My SMA body doesn’t honor weekends, holidays, or paid time off. When it gets sick, we go down together. And we always require another human to help us get back up again.

In these moments of fierce self-advocacy that so often accompany life with a disability, it’s not uncommon to feel drained from advocacy fatigue. 

Moments engulfed by wild green thorns render us panicked, unheard, distraught, and afraid. We swallow in audible gulps and sense our body vibrating with indignation. We’re distracted by clammy palms and grievances against the heartless processes of a shoddy system. We feel discouraged with vexation from the perpetual need to be the squeaky wheel, demanding access to equity in the machinery of society. 

Within the confines of these moments, when my insides feel chaotic and spent with advocacy fatigue, I seek alignment between my head and heart. I remember the people who have my back. I remind myself of the allies I’ve forged through my adventures with SMA, and how those relationships have bloomed in fortification of empathy, unity, and perspective. I lean on loved ones who help me prune the wicked vines.

The wild green thorns operate with malice and intent to make our world feel small. At times, they succeed. Yet, they’re ignorant. They underestimate the wisdom and strength we gather from the tribulations imposed by their crude philosophy.

For every disheartening notion that infiltrates our way of life, there is also boundless goodwill and ways to grow abundant gardens in place of wild green thorns.

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