Living With SMA Taught Me to Think Efficiently

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by Alyssa Silva |

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baby formula shortage | SMA News Today | 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

Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I take my time and carefully examine the circumstances and craft well thought out plans. However, when it comes to the everyday mundane decisions I need to make, efficiency and timeliness are key.

I don’t necessarily consider this a bad trait. Over the years, my efficiency in decision-making has improved my ability to think quickly and effectively. And my impulsivity has led to some great stories.

Just the other week, I decided I was fed up with having long hair. I hadn’t had a haircut in over two years, and my hair had become unruly and exceptionally tough to manage in recent months. However, there was a problem: Because I’m still keeping my exposure to others low due to the pandemic, I couldn’t go to a hairdresser.

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This detour didn’t sideline me for too long, though. My impulsivity overtook me, and after showing my mom a quick YouTube tutorial about how to cut hair, we took matters into our own hands. Twenty minutes later, my hair was 12 and a half inches shorter.

My friends found my impulsive behavior and faith in my mother — who has no experience cutting hair — equally admirable. They were shocked by how quick and willing I was to give the scissors over to her. As for me, I didn’t think twice about it. I needed a haircut, and the most sensible — and safe — way for me to do that was to ask the only woman whose hands I completely trust with my life.

That being said, their feedback led me down a trail of thoughts, and I realized that much of managing SMA requires me to make quick decisions. It also requires me to have faith in my mom, who is not only a rock star human but also my main caregiver. The reality is that living with SMA has always meant being prepared for whatever happens at any given moment. It has meant learning to expect the unexpected and knowing the next right move in order to be one step ahead.

Personal care assistants (PCAs) sometimes cancel at the last minute. Unexpected illnesses happen at inopportune times. Wheelchair batteries die while out with friends on a Saturday night. (This might just be me.)

These are some of the many examples of where quick, or impulsive, decisions needs to be made. If a PCA cancels, I immediately have to find someone to fill in. If I can’t, my day is negatively affected, and I must quickly adapt. If I get sick, my parents and I have to be proactive and start implementing a treatment plan. If my wheelchair battery dies when I’m out, I have to think quickly and creatively about how to get home.

When I look at how impulsivity plays a role in my life from this perspective, I can understand why it would affect my everyday decision-making as well. It’s as though I’ve been unintentionally programmed to take action fast. After all, if I want to ensure that my needs are met and my quality of life is fulfilled, I don’t always have another choice.

Of course, there are pros and cons to this. My impulsivity doesn’t always make the most rational decisions. And being hypervigilant at all times can’t be healthy for my mental health if I’m always on high alert for something to go wrong. But it can also help me make the best choices for me and my overall well-being.

It can also work in my — or my hair’s — favor. I’ll let you decide.

decisions and SMA | SMA News Today | A photo stitch shows Alyssa's hair before and after being cut and styled. On the right, Alyssa's hair is long, on the left, it's short

Alyssa’s hair, before and after a recent cut. (Courtesy of Alyssa Silva)


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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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