Waiting for Fireflies

Dusk was settling in. The sun had clocked out for the day, and as it traveled farther and farther away toward its sleeping quarters, the moonlight grew radiant in the stillness of the evening. 

I stared intently at the tall grass of the tree line. I waited patiently for my eyes to adjust and focus on the shadowlands surrounding me. I searched for one spark of light within the plush landscape, but the only colors I found were silhouettes and shades of night. 

Depending on where you live, you might call them “fireflies,” or you might call them “lightning bugs.” As a kid, they were lightning bugs to me. Now that I’m an adult (as defined by my age rather than my heart), I like the wild and enchanting ring of a fly distinguished by fire. 

Wherever you fall on the spectrum of this regionally influenced linguistic quirk, it can be agreed upon that summer’s brilliance is partly attributed to these glowing aviators of nightfall.

I camped with my family at Harrington Beach State Park last summer. Camping is one of my favorite outdoor pastimes, and some of the state parks in Wisconsin offer ADA cabins that can be reserved only by people with disabilities who need to use the cabin in order to experience a retreat in the wilderness. After all, tent camping isn’t the most friendly environment for wheelchairs and caregiving routines. 

These barrier-free cabins are equipped with a large roll-in shower, two functional hospital beds, lowered kitchen and bathroom countertops, and elevated campfire pits. They also provide a shower chair and patient transfer lift (such as a Hoyer) if occupants wish to leave their own equipment at home. Some cabins have a beach wheelchair available for a relaxing stroll along sandy shores.

The first night, we sat around the fire overlooking Puckett’s Pond. Meadow grass surrounded us. Frogs chanted, toads bellowed, and crickets chirped in a nocturnal ensemble that rang vociferously from within the dense wetland reeds below. The rustic aroma of campfire smoke clung to the humid air. And then, an electric pop of tiny green light. 

After a moment, another spark. Followed by another. Now, the declaration was clear. The discussion commenced. Five more sparks. Ten over there. Another, right by my side. Dozens more in the distance, twinkling in time with the canopy of stars above. Blinks of luminous telegrams. Twilight messages written in a language of love.

Each night thereafter, I looked for the fireflies. Even when we returned home from our camping trip, I went outside at night and saw them everywhere until well after the summer solstice.

The firefly population is a threatened one. These magical bugs are facing extinction due to things like pesticides, loss of habitat, and excessive light pollution interfering with flash patterns — a communication breakdown. If their community is broken down, it will disrupt the delicate symmetry of an entire ecosystem. Fireflies may only speak light-language to each other, but their presence and well-being influence the soundness of other species.

Advocacy is a driving force for many of us who cope with the daily challenges of SMA. At times, it can feel daunting. It can feel like others aren’t listening to the changes that are needed to improve our quality of life.

As in nature, the ecosystem of the human spirit is intricately woven. It’s important to advocate as a fellow human — to look outside our own lives and communities, and understand how we’re all interconnected. The health of one group will surely impact the collective ability to thrive. Different fires of injustice burn everywhere and our proximity to the fire affects the degree to which we feel the heat on our skin. 

Our ideas, actions, and values are like fireflies. When one illuminates, others can be enlightened by the notion. The signal is seen, and others catch on. Because the firefly shines from within, its light inspires awakening and communication.

I’ve been thinking about fireflies lately. A vision of fellowship, unity, harmony, and peace — I’ve been waiting for them.

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