How to savor every bite while eating for pleasure

How I benefit from pleasure meals as someone with a feeding tube

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by Halsey Blocher |

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My feeding tube became a part of my life amid a series of illnesses that required hospitalization when I was 13. I’d lost a dangerous amount of weight as my body burned through every available resource in an attempt to fight off infections. I was far too weak to even think about replenishing those resources, let alone actually eat anything.

Although the timing was unexpected, my medical team had already been planning for feeding tube surgery before I got sick. SMA’s progression was making it increasingly difficult for me to chew and swallow, so maintaining a healthy weight was becoming impossible. Falling seriously ill required bumping up the timeline for the procedure to keep me alive.

Since then, my feeding tube has been instrumental in keeping me healthy and supplying adequate nutrition. My young teenage self sometimes struggled to accept the need for it, but now, I’m grateful for its health benefits and how reliance on it encourages me to appreciate food more fully.

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Learning to eat again

Following my release from the hospital, I couldn’t immediately eat by mouth. After months of disuse, my throat muscles were too weak to swallow. A swallow study conducted before my discharge revealed that when I tried, everything went into my lungs and had to be suctioned back out through my newly acquired trach before it caused another bought of pneumonia.

I began seeing a speech therapist whose primary objective was to help restore my ability to speak, which was also lost while I was sick. After that issue was resolved (a story for another day), she and my mom spent several more months helping me with techniques and exercises that might restore some functionality in my throat muscles.

While I eventually improved enough to resume eating by mouth, some of those muscles had atrophied to the point of no return, and my swallowing ability never fully recovered. As a result, I’m still feeding tube-dependent and only eat small meals or snacks for pleasure.

What’s a pleasure meal?

Pleasure meals are exactly that: meals that are eaten for the purpose of enjoying the food. Eating can still provide nutritional value, but this approach to meals emphasizes the importance of intentionally enjoying the food, regardless of what’s being eaten or the quantity.

While pleasure eating is a common way to accommodate a disability or dietary restriction, it’s something that anyone can try to enhance their eating experience. An article on Verywell Fit, “Everything You Need to Know About Eating for Pleasure, From Registered Dietitians,” further explains the concept and how to apply it in multiple situations.

One of the article’s appealing tips for making meals more pleasurable is pausing to notice positive emotions you might associate with your meal. The author, Sarah Garone, writes, “Perhaps you feel thankful for the farmers who grew your potatoes, curious about the history of the pineapple in your fruit salad, or simply proud of yourself for making a delicious lunch on a weekday.”

Getting creative to overcome challenges

While I’ve used this approach for over a decade, food still isn’t without challenges. Before I began taking Evrysdi (risdiplam), SMA continued to diminish my strength and stamina. As a result, I’m unable to chew or swallow certain textures and consistencies, and I sometimes lack the energy to eat more than a few bites. Enjoying my food, therefore, requires creativity.

Being creative with food usually means preparing it differently or being selective about what I eat. The aforementioned pineapple, for example, is too stringy and tough to chew, but I can easily enjoy that flavor in ice cream or smoothie form. And if my body is too tired for more than that, I might choose to just eat that smooth, cool treat.

In a column published on ALS News Today, Kristin Neva shares some additional challenges she encounters while preparing the meals she feeds to her husband, Todd, who has ALS. Accommodating Todd’s needs and preferences while also considering her own time and desires can be tricky, but Kristin believes it’s worthwhile because food contributes to Todd’s quality of life.

Savoring every bite

Eating for pleasure has been a positive experience for me. It allows me to focus on enjoying my food and the company I share it with. There’s no need to worry about my physical ability to meet every nutritional need. I have the assurance that my prescribed tube feedings can and will do that.

Taking up pleasure eating was something I did out of medical necessity (for illness and muscle atrophy), but its benefits are universal. We can all reap them by making a conscious effort to appreciate how we eat, enjoy the flavors of our food, and focus on the blessings around our table. Let’s do our best to be intentional about savoring every bite.


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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