I could tell you this year has been difficult for me, and I’m certain you’d reply with a swift hitchhiker’s thumb and a comment to the effect of, “Yeah? Welcome to reality. Back of the line, lady.”
A perfectly understandable response. To your point, I’ll quietly make my way to the back of the line, but I’d consider offering you a hug first (if only hugs were safe again).
This winter, I’ve felt like worn-out clothing. In the same way a sweater that was once comfortable and nostalgic has grown ragged, graceless, and unsuitable for my needs, I desire a change of scenery. Stale air has replaced the space where only a moment ago, I wistfully craned my neck for the lingering scent of soft perfume.
I look out the same familiar set of windows each day to see the beauty of a vast snowscape, but I don’t appreciate it as I should. I move to a new window with the tinge of a wish on my tongue, hoping a new landscape will fancy my optics. Eyes pinched tight, I envision a beach oasis dovetailing a jungle-like seam of demarcation, or a meadow of wildflowers bowing down in reverence to a sacred old mountain.
Instead, I see a northern cardinal nestled within frosted beards of sapient winter pines. The feathered flame of winter sits confident and unflappable — a thrust of color, fogging up the windows of a blanched world.
In winter, the cold air saturates me. I feel thin as vellum.
I tend to get cold easily — that is, when I’m not overheating. I have trouble regulating my body temperature, and I suspect this is a common SMA symptom based on discussions I’ve had with my healthcare providers and some of my friends with SMA. Regardless, regulating my body temperature is more difficult when the weather imposes extreme conditions.
Because of its frigidity, winter might not afford me the ability to adventure in the great outdoors that I yearn for, but it does allow me ample time for reflection.
I often say I’m thriving, but what does that mean?
Some aspects of my life are steeped in fulfillment. Other areas are difficult to manage. Some days receive a stamp of greatness in my memory, while others are embossed with frustration and sadness. I can be thriving in some areas of my life while merely surviving in others. Winter is a time of survival for creatures who do not migrate or hibernate, but instead hunker down in glacial patience.
The winter sun sleeps long hours. It never fully rouses. It stays in lounge clothes and carries its cup of coffee around until the final drops of afternoon blend with the ink of twilight.
The concept of thriving is like the sky of a winter sunset. As it billows and shifts, the final scene reveals breathtaking radiance. Holding a desire to thrive does not mean I must hold it all together, all of the time. I can bend, blend, evolve, bleed, and incandesce. I can choose to trust the process.
Trusting in the process brings forth a reminder that spring comes back, full circle. Like the meditative sun climbing higher and higher into the budding vernal sky, I’ll reclaim my fire. My wardrobe will be rejuvenated. My partner, Andy, will help me put on a favorite hoodie, lace up my Chucks, and I’ll hit the accessible trails with Mother Nature once again.
When I’m at one with nature, I set out on a pilgrimage of golden silence. I don’t anticipate grief. Rather, I make amends with the pain and trauma of my past days. I yield to gratitude, joy, and the serendipitous direction of time.
Mother Nature sees the diversity I bring to the table, and includes me in the discussion. She listens quietly without passing judgment. She accepts and welcomes me for who I am.
Most of all, she is the postmaster of love notes between my heart and my brain, issuing candy-coated notices of magic in the mundane.
In the transition between seasons, she reminds me that my life’s energy remains valuable and worthy, whether my body is in a state of vibrancy or rest. With a robust breeze, she prompts me to take deep breaths. With the glinting ice of a frozen lake, she encourages me to look in mirrors and recognize how the work within myself is never finished. With a cardinal in the pines, she inspires me to be the burst of brightness in a downtrodden world.
With the bold semblance of a winter sunset, she assures me that change is both inevitable and beautiful. And through it all, I can thrive.
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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