What I’ve Learned From Sharing Stories About My Life With SMA

What I’ve Learned From Sharing Stories About My Life With SMA
5
(4)

January marks the eighth anniversary of when my blog came to life.

I was never much of a writer prior to launching my blog. In fact, when I announced that I’d be blogging in between classes and schoolwork during my final semester of college, my family was inevitably perplexed. Their reaction wasn’t surprising to me. I could trail on, story after story, about how much I struggled when it came to fleshing out words onto a blank screen. Sometimes my old tendencies still creep up on me today. However, years of unpacking my unexplainable fears about stringing words into sentences have led me to the most enlightening revelation of my life.

Simply put, words heal. They heal us, and they have the ability to heal others. But only if we first show up.

When I started blogging in 2013, my goal was to write about life with SMA. At the time, content like this wasn’t widely accessible. After doing a deep dive into Google and falling short of what I was looking for — more real-life stories and less medical jargon — I decided to take matters into my own hands.

I wanted stories of struggle and strength, stories that weren’t found in a textbook in a medical office but in the hands of those actually living with this disease. Little did I know on that fateful day in January I’d be laying the foundation for my future.

What simply started as short musings on my everyday life (friendships, health, navigating college and post-grad life) turned into something greater. With every tap of the publish button, I gained confidence, clarity, and reassurance as I journeyed through this foreign territory of writing. Suddenly, I found a platform to pour my emotions into and cope with the battles that life with SMA dealt my way. It became cathartic to flesh out feelings from my heart and into words before me. And to my surprise, people were actually reading them.

These past eight years have taught me how powerful our words can be when we choose to show up and use them. I was merely a shy girl with little confidence in myself and in my writing when I arrived at the scene. Writing certainly comes more naturally to me now than it did back then, but I’m still not perfect. Even so, I continue to show up in spite of my imperfections.

Sharing stories about living with SMA has connected me with so many people from various walks of life that I cannot imagine how vastly different my world would be if I hadn’t declared I was starting a blog on that cold January night at dinner. It has been eye-opening to discover that even though our stories differ, we are more interconnected than we realize. I don’t need to be the best writer in the room or have the best stories to tell. I only need to show up, and I need to do so with gumption. That is my intention for the year ahead, to show up with gumption, and it is with great honor that I get to do that here.

***

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.

Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.
×
Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.

How useful was this post?

Click on a star to rate it!

Average rating 5 / 5. Vote count: 4

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

Leave a Comment

Your email address will not be published. Required fields are marked *