Living with SMA means embracing the art of adaptation

To have a more accessible life, I often have to create my own solutions

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by Alyssa Silva |

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When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice amplifier, a small piece of equipment I found on Amazon for a reasonable price.

The other day, as my mom was pulling items out of my bag one by one and helping me with this necessary gadget, my aunt had a question: Had a doctor sought out what to purchase and recommended it to me? I chuckled and told her that I had to figure it out myself.

I started searching for an amplifier as my voice was getting weaker, and my first thought was to find something similar to what fitness instructors use in large classes or a speaker might use at a conference. I needed some assistance and had to adapt such devices to my situation somehow. My aunt couldn’t believe that I thought of such a trick on my own. I told her that with SMA, adapting was all I’d ever known.

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Living with SMA, or a disability in general, means I have to be willing to adapt and get creative in my surroundings when needed. Throughout my life, I’ve had to navigate a world that wasn’t designed to accommodate all my needs. Simple tasks that many take for granted can be obstacles for someone like me, whose lifestyle depends on accessibility. From inaccessible buildings to a lack of accessible transportation, the barriers are numerous and frustrating.

Of course, these barriers aren’t why my voice weakened and needed an amplifier. Rather, it was growing up in an inaccessible world that taught me how to continually find ways to adapt and overcome these obstacles and, therefore, apply them to my personal needs.

Recently, while traveling with my parents, we stayed in our first Airbnb home. Though accessible homes are available on the Airbnb website, we couldn’t find any in the beach town where we were staying for the week. Therefore, my creative thinking skills were put to the test — especially when it came to showering.

Both showers in the house were too small for me to be able to lie down in them, which left me with one last option: the spacious outdoor shower. I came up with the idea to use a lounge chair (since my shower bed is too large for traveling) so I’d at least be comfortable. The lounge chair, however, was longer than the shower. That meant I’d have to leave the door open and risk getting fined for indecent exposure.

I figured that wouldn’t be a good look for me, so I improvised further. I recruited my dad to hold up a privacy towel near the open door, and my mom bathed me as quickly as possible. It was cumbersome and challenging, but we adapted and made it work.

As I reflect on stories like these, I’m reminded that living with SMA requires more than just adapting; it demands resourcefulness and resilience. Though I’ve encountered numerous obstacles, I’ve risen to each challenge with creativity and determination. From finding solutions for showering to discovering my voice amplifier, I’ve learned to navigate my circumstances and break down barriers, shaping a path to a more accessible world.

What adaptations have you made to help with your SMA? Please leave your comments below.

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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