Thanks to SMA, I’ve Acquired a Wealth of Medical Knowledge

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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

If I had to choose the top three places I frequented prior to the pandemic, they would be the local coffee shop, Target, and Boston Children’s Hospital.

Thankfully, I mostly frequented the hospital for appointments and procedures, not hospitalizations. Even so, I have spent a good percentage of my life in fluorescent-lit exam rooms, stuck in city traffic en route to the hospital, or in waiting rooms, where I impatiently anticipate my name to be called for a doctor who is always behind schedule. Sometimes it’s a lethal combination of all three.

Being well acquainted with my condition and hospital life means I have acquired an encyclopedia of knowledge about SMA and random medical facts over the years. For most of my life, I never really considered the fact that not everyone knows how to read a pulse oximeter, or what things like “chest physical therapy” and the “Trendelenburg position” are. In other words, I didn’t realize how my vernacular developed from a life with a complicated illness, and that much of it wasn’t common knowledge.

On a beautiful spring afternoon, my mother and I decided to decompress after a day of appointments at the hospital and walk next door to Harvard Medical School, where we’d sit in the quad for a bite to eat. We’d never been there before and jokingly wondered if we could pass as students.

Like the sassy daughter I’ve always been, I decided to tease my mom by repeating loudly, “She doesn’t even go here!”

It’s a reference to the movie “Mean Girls,” and I thought I was being pretty funny. To my surprise, though, she turned the joke on me and said, “You know what? I could probably earn a medical degree after everything we’ve gone through!”

“Touché,” I thought, while laughing uncontrollably. She had made an excellent point, and I had no argument.

Living with SMA is all I’ve ever known. Because of this, it’s sometimes difficult for me to differentiate between what I’ve learned from personal health experiences and from simply being a 30-year-old adult. My mom has really made me think about this since that day.

Sure, along with my dad and brother, my family has been through a lot, thanks to the fragility of my disease. I have never lost sight of that. But in the midst of trying to balance it all, I never grasped the magnitude of how much knowledge we’ve gathered over the years, and how it has impacted our lives for the better.

Family and friends often come to us for medical advice. My decision-making skills have sharpened over the years as I take care of my medical needs. My family provides optimal care for me, which often means avoiding hospitalizations. The list goes on.

I can’t say for sure if it’s a good thing to have as much medical experience as my family and I do. Some may argue this is simply indicative of a life full of challenges and complications. To an extent, I agree. But I would be remiss to ignore that my world is infinitely better with the knowledge I’ve gained as a result of this complicated life I’m grateful to call mine.

I think I’m ready for my honorary degree from Harvard now.


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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