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What has living with SMA taught you?
I wrote a column a few months back about how SMA has influenced my life and the lessons I’ve learned. It’s interesting to think how this disease has shaped the experiences I may not have otherwise had without it. You can read all about that here but I’m curious…
What has living with SMA taught you? Share as many lessons as you’d like!
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2 Replies
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Nice article Alyssa! I always enjoy your perspective. When a feeding tube was recommended for my weak swallow it was jarring as well. I remember nurses reiterating it was only temporary. Knowing how SMA works I knew otherwise. Still, I can now appreciate all those smells you referred to, and I enjoy that others can enjoy the foods that I can’t. So, maybe SMA has taught me to be less self-centered? I have my moments of being envious, but for the most part I can appreciate when others can do what I can’t.
Even though you miss food did you find the feeding tube a little freeing? It’s easier to track nutrition, you don’t have to worry if the food will be challenging to eat and you don’t have to meal plan. I was kind of surprised with those aspects. It’s still not something I adore, but it’s not all bad.
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Absolutely. I know this sounds funny but I absolutely love and hate my tube at the same time. I think maybe I’d feel differently if I had a permanent tube— something my doctors and I are going back and forth about. But I don’t love having a tube coming out of my nose.
That being said, this tube saved my life. And it is SO much easier not to have to worry about calories and nutrition anymore. That used to be the biggest stressor in my life. So I can’t complain too much. 🙂
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