Finding light in the winters of life with SMA
A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The view was mesmerizing and misleadingly beautiful all at once.
The truth is, winters in New England are anything but beautiful to me. Because I live with spinal muscular atrophy (SMA), the cold weather stiffens my weakened muscles and makes the most menial tasks, like driving my wheelchair or moving my head, more difficult. Viruses and respiratory infections, which are harder for me to fight off and recover from, run more rampant, resulting in me staying home and feeling isolated. My bones ache more. I feel more sluggish. The list goes on.
Amid these long, brutal months, I rely on apricity — the feeling of warmth from the sun on a winter’s day — to fill me with hope when the world around me feels cold and harsh.
I recently stumbled upon the meaning of apricity. Until then, I never knew there was a word to define what keeps me going in winter. After all, the sun has always been my fuel to recharge. It has healed my solar-powered soul, strengthened me, and reminded me of the small joys around me. So, during the winter months, the sunlight feels different to me than at any other time of the year. I have a greater appreciation for it.
As I stared out at my icy backyard and cursed Mother Nature that day, I simultaneously felt the sun beating down on me through the window. It was as if it were nudging me to still feel the joy surrounding me, and at that moment, I realized that apricity was more than a feeling; it was a metaphor for how I’ve lived life with SMA.
Throughout my lifetime, I’ve endured many of my own winter seasons. There are days, weeks, and even months when my muscles and overall mobility feel more fatigued. Health issues take precedence over everything. Energy becomes finite, and my ability to complete the simplest tasks feels seemingly impossible. It is during these times that my world becomes bleak and gray, much like winter.
Nevertheless, just as the sun persists in blanketing the Earth with her warmth on a chilly day, there are moments of warmth despite my winters, too. They often come in the form of a text message from a friend or the way my dog waits outside my door every morning to give me kisses the second I wake up. They come from hearing the laughter of my niece and nephews, a first sip of coffee, or a new reality show I can’t stop binge-watching. These are my moments of apricity, my reminders of the hope and joy that still exist when SMA is trying to tell me otherwise.
Today, my backyard is thawed. Daylight saving time has returned, and the sun’s persistence lingers longer. There’s a quiet hope in the stillness of the air whispering that winter can’t last forever. As I feel the apricity, I bask in the perseverance it has taught me. My hardest moments with SMA aren’t about resisting the winters of life. They’re about learning to recognize the sunshine in spite of it. Despite all the challenges that come my way, there is still a way for light to pour through.
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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