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This week, the ALS Association commemorates Feeding Tube Awareness Week to highlight the vital role feeding tubes play in the lives of people with ALS. Feeding tubes help maintain proper nutrition and improve quality of life, but there are still things people miss, like the texture of a bagel.  

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Jessie Towbin was diagnosed with ALS at just 47 after noticing weakness in her hand. Sharing the news with her sons, just 14 and 9 at the time, was difficult, but she found strength in their support. A dedicated teacher for over two decades, Jessie also enjoyed many hobbies like knitting, ice skating, and kayaking, things she misses but can no longer do. Now, Jessie channels her energy into writing and sharing her story, hoping to connect with others and raise awareness. 
 

 "I chose to have a feeding tube inserted in 2019 in anticipation of the day I would no longer be able to swallow comfortably or effectively. I haven’t eaten food by mouth since early 2021. At first, I didn’t miss eating, because it was so unpleasant—I would gag and choke. My last meal was oatmeal. 

I remember early in my time of not eating, I read a blog post by another person with ALS who had no appetite but craved the texture of food. At the time, I didn’t get it. I had an appetite, but didn’t crave the texture of food. Now I understand. 

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I long for the delightfully hard outside and chewy inside of a freshly baked New York bagel—better still if it comes with lox and cream cheese from Russ & Daughters, the best in New York. My mouth waters at the thought of silky, thinly sliced cured salmon with a hint of saltiness, perfectly paired with double-whipped cream cheese. Heaven. 

As I reminisce about the food I miss most, I can’t forget my all-time favorite dishes. First, there’s Nime Chow (Cambodian fresh spring rolls). These are similar to Thai fresh spring rolls, but instead of peanut sauce, they’re served with a special sauce made from white vinegar, sugar, lime juice, hot water, and fish sauce. It’s tangy, sweet, and salty. My mouth waters imagining it. 

I also desperately miss my favorite breakfast: granola with yogurt and blueberries. The blueberries were preferably fresh from the farmers' market or from the farm where my boys and I picked them ourselves. I miss the texture of crunchy granola and nuts, along with the creamy, plain yogurt and plump blueberries. I must credit my dad for introducing me to this breakfast. He ate it nearly every morning of his adult life. 

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But most of all, I miss whatever my family is eating. I’ve found that the cravings aren’t as strong if I’m already full, but I still long to join them. 

It’s hard to fully grasp the reality that I will never eat or drink again. I know some people wouldn’t want to live such a life, but I’m not one of them. I want to continue living, even with all these losses. I’m still having too much fun and not done with everything I want to do. Besides, I eat in my dreams."