From defeat to victory: My journey with SMA and GI health

There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the moment. Yet, a gut feeling told me otherwise. The story wasn’t finished yet. There was more life to be lived before I could confidently tell this story.

Five and a half years later, I’m ready to share it.

It was late 2018 when I had my yearly gastroenterology appointment. Despite having an infectiously energetic doctor whom I loved, I dreaded these appointments. Gastrointestinal (GI) issues have always been my biggest hurdle while living with SMA.

That year, my mom and I decided to rent a hotel room next to the hospital the night before my appointment. I was the first appointment of the day, and early morning rush-hour traffic into Boston is a nightmare. So we decided to skip the morning commute and make an adventure out of the visit.

Our night in Boston was spent wandering around Fenway Park with our cousins, going out to a delicious dinner, and visiting one cousin’s college campus and dorm room. It was all fun and games, but that was about to quickly change.

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Twelve hours later, I was back in our hotel room, fighting back tears. My mom was packing all of my medical equipment to go home while I tried to distract myself by watching television. But there was so much noise in my head. After a two-hour appointment, there was a lot to process and I couldn’t focus on anything else. After trying to make sense of everything to no avail, I confessed to my mom that I felt like a failure.

My GI issues likely have been due to my SMA. However, these issues also run in my family. So, genetically speaking, the odds for a healthy GI tract were never in my favor. At this particular appointment, I was reminded that everything was working against me. My doctor, who was so caring and supportive, was running out of options for me. I felt hopeless and no longer in control of my own body. In my mind, I had failed.

Nevertheless, life carried on, and I gave my best when it came to eating and nutrition.

Victory made possible

Fast forward five and a half years. It was March 19, 2024, and I was back in the GI office for the first time since before the pandemic. Life was so different for me now. Two years prior, this doctor had saved my life during a monthlong hospitalization. There, I had an nasojejunal feeding tube placed per her request and was on my way to becoming nutritionally healthier than I’d ever been.

Even so, no matter how much time had passed or how much progress I’d made, those unsettling feelings from the past crept in the moment I entered those four walls. My body was tense and my palms were sweaty. Just as I took a deep breath to brace myself for what was to come, my doctor walked in and exclaimed, “Alyssa, you look amazing!”

I was completely speechless and on the verge of tears — again. This time, I felt like I was in an alternate reality, one where I was winning with SMA instead of always going to battle against it. Sure, I fought like hell to get here, and I have the battle scars to prove it. But this was the moment I desperately needed five and a half years ago. This was the moment I never thought would be possible for me.

I left that appointment without racking my brain for answers or feeling defeated for the first time. Instead, I left with the reassurance that I was doing everything right. If I could go back in time to the girl who felt like a failure, I would tell her the following:

Life wasn’t handed to you on a silver platter, but that doesn’t mean you should just give up. You’ll have hurdles to jump and big, rocky mountains to climb in the future. Just remember to jump high. Climb fervently. When you fall flat on your face and scrape up your knees, rest. Then, get back up again. You may feel like a failure right now, but someday, that failure will turn into a victory. Please remember that the journey doesn’t have to end here.

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.