When I say, “I don’t need my SMA to be fixed,” I mean it from the bottom of my heart.
Last month, I set sail with my first dose of the new disease-modifying therapy Evrysdi (risdiplam). It was a choice that required careful consideration of my options and the possible outcomes.
Over several weeks, I idled a wave of contemplation. I paid attention to the seagulls flying above me. I felt the motion of the tide surrounding me. I took notice of the creatures sharing my freshwater habitat. I surveyed distant shorelines. I kept an eye on the skies.
Eventually, I needed to swim.
For more than three decades, my body and SMA have coexisted without the availability of a disease-modifying therapy. I’ve flourished through mighty happy eras. I’ve wandered through morose forests. Along the way, there has always been light.
Let’s revisit those decades for a moment.
There were surgeries — over a dozen before the door of adulthood opened to me. There were hospitalizations for respiratory infections, blood clots, and kidney stones. At times, my body felt war-torn with a blitz of medications coursing throughout the fields of my veins.
Perhaps it’s the trauma, perhaps it’s the way my threads are sewn together — whatever the reason, I’ve become increasingly sensitive to side effects as I’ve grown older. Chasing side effects is a lot like chasing cantankerous ghosts. They’re relentless and difficult to reason with.
I find peace in listening to my intuition. I find healing in embracing my SMA. If I chose to avoid treatment, I knew the “what ifs” would lurk in my neighborhood. They’d loiter in the moonlight of my doorstep, knocking fervently, brandishing a bottle of wine in my face and robbing my wee hours of much-needed rest.
No, I don’t need my SMA to be fixed, and I’m comfortable acknowledging that. My SMA has been integral to shaping me into who I am in this very moment — this gal who is eating her Greek yogurt, watching a snowflake ballet outside her window, and padding fingertips across a keyboard to the cadence of her heart.
Saying I want to fix my SMA implies that disabilities are inherently bad things — things that deserve to be abolished from existence. That notion doesn’t sit well with me (and I consider myself an expert at sitting).
Disability and chronic disease are an organic part of the human experience. If we look upon natural parts of the human experience with scorn, how can people feel acceptance to be themselves?
I can have it both ways. I can pursue treatment for my SMA while upholding my end of the deal to treat my SMA with dignity, reverence, and gratitude.
Throughout this medical journey of mine, I’ve focused on my body through a holistic lens. Medications and treatments are staples in my SMA toolbox, but staying on top of small, everyday measures that promote wellness and healing is a way for me to nurture my body in essential ways.
The regimen of my days is infused with natural ingredients. I fortify my body with fruitful choices in nutrition and hydration. I pay close attention to what foods my body is more or less receptive to. I engage in meditation to mellow my anxieties. My caregivers help me with daily stretching, massage, and exercise. It’s an attempt at self-love that is rarely seamless and never perfect.
I sing and dance. I inhale twinkle and exhale laughter.
Who’s to dismiss the value and wonderment each of these elements lends to my overall well-being? Who’s to say I’m not slowing the progression of my SMA by doing what makes me feel alive? The reason to love is to feel alive, and I’m beguiled by many things that flush my cheeks rosy with love.
These novel treatments have shifted the SMA community into an unforeseen epoch of diversity and unity. We must support one another and honor our unique perspectives rather than forming a chasm of discontent between those who do not envision the exact same horizon.
We approach our SMA care in a multitude of ways. We each hold a palette to paint from. Our sunsets will swirl in different colors. Puffy clouds drifting through our skies will take different shapes. Hot air balloons ignite an exploration of different compass arrows.
Treatment choices aren’t always easy. I write with hope of helping others, knowing somewhere out there, someone feels the same way I do. I might be the lantern for someone in need of a stone cottage with a blazing hearth on a cold night’s journey. (Let’s throw in some freshly baked cookies and invigorating coffee for good measure.)
For you, my friend, this is a gesture of love. It is a shroud of warmth, tenderness, and understanding as you make the choices that are congruent with your heart.
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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