I’m Wondering About How SMA Influenced Me as a Child

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by Alyssa Silva |

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A banner for Alyssa Silva's column "Life, One Cup at a Time," which depicts hands holding a cup of coffee — beside them are various desk items like a planner and plant

Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately.

Kids look at life through rose-colored lenses. I see that in the way my little niece and nephew are so carefree today, and I remember how I used to be like that, too. Living with SMA didn’t give me added stress and anxiety because I wasn’t old enough to grasp the disease’s complexities. But it still affected me deeply in ways I may not have understood at the time. And lately, I’ve been trying to figure that out.

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Recently, a classmate from middle school reached out to me. She was cleaning out some stuff and came across the poetry book our class wrote in eighth grade. At the top of a page she shared was the title “Life in a Wheelchair,” written by yours truly. And while the poem was elementary (my writing skills as a 13-year-old were cringey), it really spoke to me. It read:

From where I sit
I must admit
The world is different

But I can’t live life being sad
Because it’s the only chance I have
To live life better than anyone has.

After reading it through, I wondered at how I perceived my world as different back then. Did it affect my confidence? Was I scared of my world being different? Why did I infer that it was sad my world was different, and why did I say I couldn’t live that way?

Unfortunately, I don’t remember much about those days to seek out the answers. In fact, I don’t remember much of my childhood. While I grew up with a loving family, friends, and many happy memories from what I can see in photos, I wonder if my brain repressed memories due to my physical struggles with SMA. This is the excuse I use when my brother gets aggravated that I can’t remember something from 15 years ago as he can.

Nevertheless, I’ve started thinking about experiences such as these and how they’ve affected who I’ve become today. Constantly being in the hospital and fighting for my life, growing attached to home-care nurses only to have them leave, and being the only person in a wheelchair throughout my schooling — all of my experiences likely left a mark on me as a little girl. After all, I viewed my world as being different, according to that poem.

I’m learning that I may not ever make sense of what happened to me as a child with SMA and how living with a debilitating illness influenced my pivotal years of growing up. Fragments of memories in the form of poems or storytelling will have to suffice.

But here in this moment, I’m confident in the woman I’ve become (and am still becoming). I’m a firm believer that there’s a plan for my life. And while questions about my past may circulate in my mind, I have no doubt everything is unfolding exactly how it’s meant to.

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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