Learning to Shine: What Being a Woman with SMA Means to Me

Learning to Shine: What Being a Woman with SMA Means to Me

I’m a strong, 30-something woman with SMA who feels beautiful, inside and out. 

One of the most meaningful compliments I’ve ever received was scrawled across the top of an essay written for a high school English literature class. In bold red ink, my graded paper exclaimed: “Finally! A dissenter who thinks on her own!” 

Those words have been imprinted on my mind ever since they met my eyes — words I’ve been proud to live by. I’ll never forget the uplifting teacher who wrote them to me.

I’ve been invited to speak at a Wisconsin Department of Natural Resources event, hosted in celebration of women who explore the outdoors. I’ll be speaking on the topic of “Adventure & Accessibility.” As an adaptive recreation enthusiast and accessibility advocate, I’m thrilled to be acknowledged as a resource in the realm of women adventurers in my quiet corner of the world. 

As I’ve been crafting the pillars of my speech, a recurring thought shoves at my brain: What does being a woman with SMA mean to me? 

As a little girl, I was enthralled by the thought of beauty. During toddlerhood, I never walked independently, but I used a walker sparingly. One of my favorite photos of myself shows me standing with my tiny-tot walker, donning a pair of my mom’s high heels that swallowed my dainty feet; a beaming smile lit up my face. My mom never made me feel like beauty was off-limits to me because I moved around differently than most other girls. I’ve always loved makeup and wearing a style that is uniquely mine.

True beauty, positive self-image, and confident sexuality extend far beyond the skin. Women with physical disabilities are not often viewed as sensual beings with intimately amorous qualities. There is a vast difference between feeling beautifully desirable in your own body and promoting your sexuality in an objectifying way. It’s empowering for any of us to feel desired, but the reasoning behind wanting to be desired should stem from a healthy mindset, a place of wellness. Throughout dating, I held standards for what I sought in a partner, knowing I was worthy of a healthy relationship.

In part, I owe this growth to the love that my companion has shown me over the years. Being loved and given the opportunity to reciprocate that love encourages us to see our own beauty more readily. 

For over a decade, he has also stood at the helm of my caregiving team. When we started dating, I never thought I would allow a significant other to engage in any major role of caregiving for me. After a while, my life changed, as life does. My companion rose to the occasion, being a rock that braced my quality of life. I was fearful of mingling my cares with love; I thought I might be wounding our relationship and tossing it into the open ocean for frenzied sharks to ravage. But caregiving has helped both of us to grow. We communicate effectively and respect each other, knowing that we need to allow other caregivers to step in and help keep our daily life afloat. Living with SMA requires us to be intelligent and courageous — both of which contribute to beauty.

Every season, I learn more about how to be myself, how to dance with my SMA, knowing some fantastic choreographers along the way.

Sitting outside during the darkest nights and looking up to a sky that is rambunctious with stars, I’ve often thought about how different aspects of our life — or characteristics of who we are — are similar to the night sky. Some attributes dazzle in the limelight with an energy so radiant it catches and inspires the most apathetic of eyes, while other features smolder with a lethargy so dim they cannot be revived. But bold or faded, the dots connect into constellations that tell the stories of who we are. And if your lucky stars align, your heart is tethered to people who are your North Star, your way home — people who teach you how to shine and how to help others shine.

It takes courage to be yourself, to evolve through failure and pain. The women who have always kept my eyes tilted toward the sunrise are those who have lived their story, being a positive voice; women who are dreamers, living with a heartfelt connection to the world and sprinkling magic to make it more beautiful than they found it.

To me, being a woman with SMA means following my heart and finding my path in life, even if it requires great channeling of creativity, effort, and time. If you feel a spark within your soul, find a way to ignite it. In doing so, beauty will radiate outward.

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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.

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