Redefining progress in life with SMA and assistive devices

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by Alyssa Silva |

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After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in plain sight, from a moment when life felt so different to me. It was hard to accept that I’d written them just a year earlier.

My progress is often hidden in the daily nuances of spinal muscular atrophy (SMA). Health battles, chronic fatigue, and the many challenges I face often cloud my judgment of how far I’ve come. However, an old column I’d published here recently shifted my perspective and prompted me to reanalyze my growth. To my surprise, it came in the form of learning to accept help.

I often have a hard time accepting that I need assistance if I want to enhance my life with SMA. Though I’m completely dependent when it comes to my physical needs, I struggle to accept circumstances where I have to ask for more help. At times, that might mean bringing a new medical device into my regimen.

In my mind, using new medical devices means I’m more dependent than I was. It means SMA is winning. I don’t know how I arrived at that intrusive thought, but I know it’s something I’ve struggled with for years.

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In the column I wrote last year, I shared that I had trouble speaking at my normal decibel level and needed a voice amplifier. Yet for so long, the amplifier sat on my desk while I continued to strain my voice.

In my refusal to accept help, I was only hindering my ability to flourish. I was hurting my voice more and choosing to stay silent. Eventually, I unwillingly gave into the harsh reality of SMA muscle weakness and begrudgingly used the amplifier.

But here’s the irony of the situation: One year later, I was rereading this column while proudly using the device.

In the past year, I’ve grown to love it. Every time I put on my headset, I feel like I’m Britney Spears circa 1999, and I’m ready to burst out one of her top — wait, never mind. Those are just my daydreams talking.

Jokes aside, my voice amplifier has given me a newfound freedom to speak articulately and at a decibel that’s right for me. I no longer have to worry about being heard because the speaker projects my voice. In fact, I bought a second one to keep in my purse at all times. That way, I never have to worry about being out in public and straining my voice for others to hear. Turns out this little device has made a huge impact on my quality of life.

My voice amplifier is a testament to the progress I’ve made in the past year. It’s proof that I can grieve lost abilities and still learn to thrive in a meaningful way. What was once a symbol of reluctance is now redefining my measure of progress. It’s proving to me that it’s OK to ask for help, and I’m learning to accept that.

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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