In North America, where I reside, an equilibrium springs forth this time of year.
Because of the spring equinox, the dance of dominance between daylight and nightfall is at a point of viridescent intermission. The sleep-wake cycle rises and sets in mutual agreement. Together, the crescent moon and diluted sun lock eyes without a ripple of contention — one does not loom over the other in authority of the skies.
During a recent weekend, I set my wheels on the first accessible trail of the year.
The landscape around me was not yet verdant or sprightly, but callow and sleepy. The sun was shining with all its might, poking at the belly of a lethargic countryside and urging it to rouse for Saturday morning cartoons. Brown matted grasses lay hushed and wild-eyed with winter’s bedhead. By dinnertime, the tenderfoot earth would be ready to enter twilight’s doorstep, kicking off a pair of muddy sneakers, and zephyr flowing freely from rejuvenated lungs.
The shades of brown in March emit a different vibe than those of November. In March, nature is waking up instead of going to sleep. Vernal vibrations force dewy-eyed buds to burgeon from the tips of naked tree branches.
Even though I see balance all around me, I don’t feel it within me.
Even though the season is unearthing prolific harmony, my thoughts are skewed toward the most pressing matters of my life. My blood flows green with envy for the orchestration of symmetry that nature seems to grasp so effortlessly.
Health challenges and personal advocacy issues related to my SMA tend to swell in rainstorms. When the storms crash down, they crash hard and roar interrogations at me.
During this fluctuation in seasons, my life is undergoing great changes. To name a few, I’m in the midst of growing my caregiving team, facing chronic nerve pain, and advocating for a new wheelchair. More often than not, I feel overwhelmed. Amity and contentment seem to have strayed beyond my reach.
In growing my care team, mapping out my daily needs has rendered me feeling like a burden at times. My senses have been heightened to the awareness of how much I need help to live my daily life. While needing help from others is a natural part of human existence, the personal tasks I can’t accomplish on my own are frustrating to me — they are menacing splinters of petrified wood, festering beneath the tissues of my dignity.
Chronic pain is not unfamiliar to me while living with SMA. Over the years, I’ve managed it effectively through nonabrasive methods of massage, physical therapy, stretching, and range-of-motion exercises. But a recent uptick has settled within my lumbar region, hips, and lower extremities. Some of my friends with SMA can relate to this, while others cannot. Not only am I attempting to mitigate the persistent nature of my pain and neuropathy, I’m also working with my healthcare providers to uncover its roots and etiology.
With the process of obtaining a new wheelchair in full swing, I sit with uncertainty and bristle at the degree of self-advocacy I’ll soon be required to exercise. I attempt to remain grateful for the opportunity to acquire new medical equipment. Living in a world that wasn’t built for me or my SMA, I’m prescribed to flex strong muscles in the spirit of autonomy when my physical body has already endured atrophy.
As longer daytime hours shed light on all of the benevolent aspects of my life, I’m working on tracing new thought processes into the sandy shores of my mind.
Instead of riding the airwaves of negativity and despair, I think about the characteristics of springtime. I wonder how I can tune into these vibrations to enhance beauty within small moments.
I allow the increased sunlight to flood the pupils of my eyes. I look around at the shades of browns, which seem so mundane at first glance, but cultivate energetic life. Digging deeper into rich soil, brindled tree trunks, and tawny leaf carcasses, I notice these are habitats for the birth of new beginnings — snug chrysalises that will open outward to release a flamboyant montage of reawakening.
I consider the ephemeral storms of the present. I allow myself to feel intensely sad and worrisome about how I’ll overcome this one. I remember all of the other storms I’ve adapted through, and I allow the emotions to pass. Sometimes, it’s less about overcoming and more about persevering. Like a clothesline of fresh linens succumbing to a warm breeze, the tears on my cheeks will dry.
Birds, butterflies, and bees are ambassadors of spring. Taking their cues, I move forward every day as the harbinger of my own vernal equinox. Somewhere in between the highs and lows, I’m thriving to the best of my ability.
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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