What I hope you’ll understand this SMA Awareness Month

“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me.

Though everyone in the room had a good chuckle, there was also some validity behind it. Given my scoliosis, hiatal hernia, and overall anatomy, exchanging my NJ tube is never an easy procedure. So every year when a new rotation of fellows begins, they’re actually debriefed about my case and the challenges that come with it. After all, there’s a lot to cover with my spinal muscular atrophy (SMA) diagnosis.

I often wonder, though, if my complex medical history overshadows who I am beyond my diagnosis. With quite an impressive (well, lengthy) medical chart spanning over three decades and a slew of health issues, do some of these doctors think they know the real me simply because they have a comprehensive overview of my medical history?

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In the days following my interaction with a new fellow, his words ruminated in my mind. Of course, a part of me was grateful to hear him say this. Feeding tube exchanges often trigger a lot of anxiety for me, so to have the reassurance of somebody new going into this procedure already prepared allows me to find some comfort.

At the same time, I couldn’t help but wonder if the Alyssa Silva he read about had already prompted him to start making assumptions about me. Before even meeting, he had learned a lot about the kind of life SMA dictated over my physical body. He learned about my complicated respiratory history, how a feeding tube keeps me alive every day, my gastrointestinal issues, vertigo, and the dozens of other ailments that accompany me nearly every day. On paper, my life seems fragile, and in some ways it is. But as complex and lengthy as my medical chart may be, there are so many more facets to my life that are equally a part of who I am.

Outside of those hospital walls and medical histories is a daughter, sister, aunt, co-worker, and friend. It’s someone who loves fiercely, laughs easily, finds catharsis in a Taylor Swift song, and watches too many reality TV shows on Bravo. Even though most days my main accessory may be a medical ID bracelet on my wrist, it doesn’t mean I can’t chase a life of joy and love while I wear it.

August is SMA Awareness Month, a time for our community to come together to advocate for more research and better access to care, and shine a light on the everyday challenges and celebrations with this disease. It’s an opportunity to garner more awareness and understanding.

I know my new doctor is there to do a job, and I’m thankful that he took the time to learn about my needs. In fact, I don’t expect him to get to know me on a personal level at all.

However, his comment mustered up old feelings and insecurities from when people didn’t see past my physical limitations — from when they failed to understand who I really am. My life may be riddled with appointments, procedures, and health issues that sometimes feel overwhelming. But beyond the medical anomaly that I am is simply a girl just trying to navigate life with grit, joy, and maybe a little stubbornness. (OK, fine, maybe a lot.)

This awareness month, I hope to spread that message.

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.