During our most difficult health journeys, life can teach renewal

Regardless of how dire things become, we all deserve to fight for our best life

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by Alyssa Silva |

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Once upon a time, a pandemic enveloped the world and put my life on hold for years. With a weakened body due to SMA, and without knowing what the virus that causes COVID-19 was capable of, I decided to hunker down and prioritize my health. But while I was busy staying home and staying healthy, another storm was brewing that would throw my life further off course.

In early 2022, I was hospitalized with a previously scheduled admission. For much of the previous year, my health had taken a nosedive. My body had slowed down significantly since the start of the pandemic, and I began to experience the repercussions. The goal of my hospitalization was to get a nasojejunal feeding tube that would provide me with better nutrition and IV medications for other issues I was experiencing. However, shortly after I was admitted, I learned that my issues were actually life-threatening.

From that moment on, my body became my top priority. After a month in the hospital, I spent the next year fighting my hardest to regain a semblance of what life had felt like before my latest health issues had begun.

Eventually, I had to face reality: Things had changed. My body had weakened. I was overwhelmed, exhausted, and feeling hopeless about the future. Once again, my life felt as if it had been put on hold. This time, however, I didn’t know if it’d ever resume.

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I carried this energy with me into 2023. It wasn’t until the unthinkable happened that I realized I needed to stop living with this mindset: I lost five family members in less than a year. With profound grief came perspective and introspection. Having conversations with my loved ones during the end of their lives prompted me to face my own mortality. It prompted me to reevaluate how I had been living.

Between the pandemic and dealing with all of my health issues, I realized that I had lost pieces of myself along the way. While living with SMA and all of its baggage is a full-time job, there’s still so much more to my life. By being so hyperfocused on my health, I had lost track of that truth.

So, during the most difficult moments, I spent a good deal of time getting reacquainted with myself. I decided I was no longer willing to be sidelined from my own life and needed to learn how to live again. This time, it would be in tandem with my health issues. I had finally reached a place of acceptance. I was finally ready to see what could be.

My story is still unfinished today. Moving forward, I know now that regardless of how dire things become, we all deserve to fight for our best life. During these moments, the resilience of the human spirit reveals itself.

Although some days will require me to put my life on hold to protect my health, striking a balance is possible with grace and the right mindset.

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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