It’s late August.
The songs written by crickets in May have been arranged into full summer soundtracks, playing on loops of background music from dawn to dusk and moonrise to moonset. The aroma of sun-baked leaves swirls about golden afternoons.
By now, that usually means my outdoor patio is a menagerie of plants that have exploded into lively blooms. I savor the vibrancy with every chance I get, before the stillness and dormancy of the cold months insidiously creep toward my tiny parcel of the earth.
Late August also means that my annual pulmonary function tests (PFTs) are on the docket.
On a recent Thursday morning, I had a few moments to spare before heading to an appointment with my pulmonary doctor. My nerves were feeling tousled and abuzz with anxiety. Around this time last year, my heart was writhing from the news that I had lost all of my respiratory-centered Spinraza (nusinersen) gains.
I didn’t know what news would be delivered to me that day. I’ve come to believe that news is simply life unfolding before us. It is not inherently good or bad in nature. Though it may thrust feelings of happiness or despair upon me, I have a conscious choice about how I react to it.
Yearning for a few moments of calm, I headed outside into the crisp sunlight to gather my thoughts. I inspected the foliage surrounding me and noticed something else was abuzz in the air.
Bumblebees. A handful of genial bumblebees with too plump an agenda to pay me any mind.
Like master florists who adore their craft, the bees circumvented each blossomed bouquet as they pollinated. Bumblebees rotate their wings in the motion of minuscule hurricanes, granting them the complex ability to fly. They diligently tended to each petal, leaving no speck of pollen left unaccounted for. I admired the energy they poured into their endeavor and found myself smiling in gratitude for the genuine goodness they were so intent on spreading — their entire life’s mission a humble culmination of integrity.
At the moment, the vibrations of my life resonate with that of the bumblebee. I find myself within a mellow period of reflection and conscious complacency in its best possible form. I’m offering my energy to all of the beauty around me in hopes of propagating more beauty. I’m connecting with my fellowship of SMA mates and meeting new friends within the disabled community more than I ever have. I’m hustling at endeavors that nourish my soul. I’m stoking the fire within the hearth of my heart’s castle. I’m engaging in a life most meaningful.
I’m not actively pursuing treatment for my SMA, nor am I discounting it. I’m researching it in quiet contemplation. I’m keeping my heart open, my eyes bright, and my ears piqued to listen. I’m taking time to be Katie.
When my PFT results revealed that my respiratory function is exactly where it was last year, I accepted the news. I reveled in contentment because it means that I can carry on as I have been. It means that, for the time being, I don’t have to be a warrior.
Every time I’ve endured a major hardship, it’s required me to channel my inner shield-maiden and suit up in armor. Some people with SMA don’t identify as warriors and wish not to be labeled as such. Those are perfectly valid feelings to have about oneself.
I am here to tell you that I absolutely do. I try to consciously live my truth, and my truth is to be a warrior.
It’s not solely because of my SMA, though. My overtone of SMA and tenacious complexion are not mutually exclusive features of my being. I happen to have SMA, and I happen to channel the heart of a lioness. It’s who I believe I’m called to be across all facets of my life.
When I’m in warrior mode, I’m not spending time wishing that I’d been assigned to an easier battle at hand. I strategize my next moves in the most cunning and whimsical, and strongest way possible. I like how I duel with adversity. I own it.
At times, people might find that intimidating about me. They might find it inspiring. They might see it as curious. They might even wonder if I’m romanticizing my SMA. They might disagree with the positive light I shed on my life with SMA.
Each perception is all right by me. Why? Because I can’t control what others think about me. When my precious energy is in short supply at the demands of my SMA, I must wisely choose how to manifest it. I’ve found that my shield is especially dynamic in ricocheting harsh criticism and negative vibes.
But even warriors need time to rest.
For now, I am the bumblebee who is joyfully pollinating.
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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