The healing power of writing on my journey with SMA
For me, the practice has been both a creative outlet and a form of therapy
Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through words, expressing empathy, kindling hope, and leaving an indelible mark on hearts I may never meet.
Living with spinal muscular atrophy (SMA) means that physically stepping out into the world isn’t always possible. In addition, the quiet solitude of a town with few opportunities for connection makes the challenge of building relationships even greater. Yet, through writing, I find a way to transcend these barriers, creating bonds and sharing my voice in ways that make the world feel just a little bit smaller and more connected.
Creative writing has always been my sanctuary, where the endless waves of ideas in my mind could flow freely and come to life. As a child, writing by hand made those ideas feel alive and tangible — a valid extension of myself. In fifth grade, I would fill tiny scraps of paper with colorful short stories written in felt-tip markers, making each tale as vibrant as my imagination.
Rediscovering my voice
But as SMA gradually weakened my muscles, I lost the ability to write by hand. It felt like a part of me had been taken away, leaving me devastated and searching for a new way to channel my creativity.
Then, in eighth grade, everything changed. I received my first specially adapted computer, and with it, the world of writing opened up again. While my stories no longer flowed from pen to paper, they found a new home in the digital realm — proving that even when one door closes, creativity finds a way to soar through another.
Writing has always been my art and therapy — a way to process the world and express my inner self. But when I started college in 2019, the rhythm of my life shifted. Caught up in the whirlwind of new routines and responsibilities, I drifted away from writing. Being a college student while managing multiple disabilities demands an incredible amount of energy — not just for academic success but for navigating the unseen challenges of daily life with resilience, adaptability, and determination. In the chaos of it all, my creative outlet faded quietly into the background, waiting patiently for me to find my way back to it.
Eventually, I rediscovered my voice and realized I could use it to speak not just for myself, but also for others.
Writing has become an essential part of my healing journey, a way to manage feelings of stress, anger, and sadness. Putting words onto a page, whether by hand or electronically, brings a sense of clarity, transforming abstract emotions into something tangible and real.
Through writing, I can adequately process and validate my feelings, allowing me to confront emotions that might otherwise feel overwhelming. When I feel abandoned, misunderstood, or invalidated by others, writing is a refuge, offering a safe space to find solace freely.
Self-care comes in many forms, and writing can be one of them, as the activity is accessible and always available, no matter your limitations.
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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