Learning to accept the unexpected loss of my ability to swallow
Because nothing is guaranteed with SMA, a columnist celebrates the small wins
While living with spinal muscular atrophy (SMA), losing physical abilities is expected due to the progressive nature of the disease. Yet, even though I’ve been accustomed to this grim prognosis, sometimes I’m caught off guard. Although I know my muscles inevitably weaken and my abilities diminish over time, every once in a while, that reality is hard to accept. Losing the ability to swallow two years ago was the hardest.
No longer being able to eat or drink orally was certainly not on my bingo card for 2022. After all, I had no trouble swallowing for most of my life. There was a period when I had an esophageal stricture, which prevented food from sliding down into my stomach. Another time, I had a paralyzed vocal cord that caused me to choke when swallowing liquids. Though daunting experiences, both instances were easily corrected by surgery.
So, when eating and drinking became more troublesome a couple years ago, I refused to believe it was something serious. I thought it’d be an easy fix with surgery. It all happened so quickly that I didn’t have time to truly process it.
A reminder that SMA is in control
It started on Thanksgiving the previous year, a holiday that now brings bittersweet feelings. The night before, I was swallowing well. The following day, I didn’t have enough strength to eat my mashed potatoes. With such delicious food all around me, I felt too weak to eat.
What I thought was a bad day energy-wise turned into my worst nightmare. Soon enough, I no longer had the strength to suck through a straw to drink. I was aspirating with meals. And worst of all, I was growing more frail by the day. I couldn’t keep up with my nutrition.
I took several trips to my ear, nose, and throat doctor to check my vocal cords. More than anything, I wanted to find out that I had vocal cord paralysis again. I wanted there to be a solution for swallowing woes. I didn’t want to face the fact that I might be experiencing disease progression.
Ultimately, I was hospitalized and given a nasojejunal (NJ) feeding tube to start getting adequate nutrition. My health was deteriorating quickly, and I needed critical care. I spent the next month fighting for my life.
Despite losing many abilities in my lifetime, I thought I could hold on to my ability to eat and drink independently forever. These were muscles I used every day to sustain myself. I didn’t think I’d suddenly lose them. Even so, it showed me that I could be at risk of losing everything someday. It showed me that no matter how much I use my muscles, SMA is in control at the end of the day.
Today, my swallowing function remains unchanged, and I continue to use an NJ tube for nutrition. More importantly, I have a greater appreciation for life and my remaining abilities.
The truth is, I took swallowing for granted all my life. But now that I see nothing is guaranteed with SMA, I know better. I celebrate the small wins. I thank God for the strength I have left. I appreciate the little moments in my life so much more now that I know I could be robbed of them someday.
SMA has taught me many lessons, but perhaps the most eye-opening is the importance of cherishing every moment and ability I still have. Losing the ability to swallow forced me to confront the progression of my disease, but it has cultivated more gratitude within me than ever before. Even in this moment, I’m grateful despite what SMA has robbed me of.
And that can never be taken away.
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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