My ALS Strategy for National Eat What You Want Day
Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught me by surprise.
Her post said “May 11 is National Eat What You Want Day,” and even though I know it’s just a pseudo-holiday and meant to spawn memes, jokes, and fun food photos, I felt twinges of anger because even if I had wanted to participate, I simply couldn’t. Eat what you want? I wish!
My eating challenges
Dysphagia is scary. One day you’re calmly sipping a coffee, and suddenly the hot liquid is headed straight down into your lungs. If you’re lucky, you’ll experience only a few minutes of gagging, coughing, and gasping for air. If not so lucky, you get to meet your local EMTs.
We patients adjust by changing the consistency of our food and drink by blending it or relying on pre-mixed formulas. In my case, I can still chew and swallow normal foods. But I add a powdered thickener to all my liquids. However, I’m constantly frustrated that some foodstuffs defy modification. And I sure do miss them.
Ask me what I would choose to eat on National Eat What You Want Day and I’d answer a big bowl of ice cream, some hot, buttered popcorn, and, oh, yeah, a beer.
Because once it’s in my mouth, ice cream turns into an unswallowable liquid. Because popcorn smells and tastes so good, but I can’t handle those bits and pieces of kernels anymore. And because when I sit down to an enchilada dinner with a side of rice and beans, having to wash it down with a glass of thickened, flavored water is, well, OK. But I remember the old days, when a cold, Mexican beer with a twist of lime made the meal superb. Early on, I found out that thickening powder mixed into beer results in a Mentos and Sprite experiment.
Of course, I’m grateful that I only have to deal with thickening liquids and the loss of a few favorite beverages and snacks. Many patients have totally lost the ability to take in food or drink altogether and rely on a feeding tube surgically implanted into the stomach.
I believe the symptom of dysphagia is not only a physical loss, but an emotional one as well. It’s one of the many losses we experience when living with ALS. Taking the time to grieve and process each loss — yes, even for ice cream, popcorn, and beer — is essential to helping me cope with life’s ongoing changes.
What are the steps I follow?
- Name the loss: “I can’t have ______ anymore.”
- Name the feeling: “I’m angry, sad, and feeling excluded.”
- Give permission to feel the emotion: Here’s where I clench my fists and let loose a yell.
- Discuss possible strategies with family, friends, and caregivers: For example, in the column “Meet Me for Dinner! Dining Out with ALS,” I share strategies I use to enjoy dining out with friends despite my eating restrictions.
I won’t let National Eat What You Want Day get me down. Instead, I’ll spend the day laughing at all the funny photos people will be sharing. Learning to process change while maintaining my sense of humor is one more way I’m living well with ALS.
Readers, I’d love to know what you would eat, if you could. Please share it in the comments below.
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