Feeding Tube Foodie; or How I’m Being Lured to the Dark Side

The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able to steer Ruby, my beloved power wheelchair, myself) Just as I suspected, Evan was warming up some leftover pizza.

“Hey, hun. Is that your dinner?” I asked. I knew I had to play it cool to keep Evan from becoming suspicious.

“That’s the plan,” he replied, settling in at the kitchen table.

“I think I’ll just hang out here while you eat,” I said, rolling up to the table. “Hey, as long as I’m here, can I watch you eat?” I grimaced. Real smooth, Rachel.

“Um, I guess.”

“Cool, cool, cool.” Yes, keeping it casual. This time, I would control myself. I would NOT make it weird.

Evan took a bite, then another. I was riveted.

“You’re really starting at me.” He shifted in his chair.

I made a conscious effort to blink before saying, “You know, I was just wondering if you can try chewing slowly.”

With obvious discomfort, Evan complied with my request. One bite later, he stopped. “You’re leering at me. It’s freaking me out. I am going to eat in the living room.”

I huffed in frustration when he walked away. I miss food desperately, and I am always looking for ways to hold onto at least the memory of the joy of eating.

At my most recent clinic, my speech therapist put me on a pureed foods diet after she discovered that I can no longer move my tongue from side to side. Losing that motion makes me unable to sculpt my food and move it between my teeth. As a result, I have little control over where the food in my mouth goes. I am at risk of choking if I deviate from the pureed foods diet because anything I eat can slide to the back of my throat and block my airway. Even crumbs are a danger. Then there is the possibility that tiny particles of food may slip into my lungs without me even knowing it. This puts me at risk for pneumonia, which can be fatal to someone with ALS.

To protect my lungs and prevent choking, I get most of my food all of my hydration through my feeding tube (I can’t drink water because it moves so quickly that aspiration is inevitable). I eat orally at dinner, usually a pureed soup my mother-in-law Brenda made for me that morning – she concocts everything from broccoli and feta soup to savory butternut squash puree – or a fruit smoothie. I get a decent variety of flavors, but the lack of texture is starting to get to me, I fantasize about chewing on a piece of cheese or sinking my teeth into crisp slices of tomato, bell pepper, zucchini, and apple. Lately, I am nursing an obsession with all things toasted, specifically paninis. The longing keeps me up at night, and I suspect it’s chipping away at my sanity, which led to this, ahem, eccentric text exchange with a friend. Read on to witness the burgeoning madness of a Foodie on a feeding tube…

Me – I would do unspeakable things for a panini.

Melissa – Has anyone ever invented something like a chew toy for humans?

Me – Someone really should. I want to bite something and feel it crunch.

Melissa – I feel like I could put a panini in some mouth safe baggy and hold it in your mouth to feel on.

Melissa – Or I could just put a panini in your mouth and then take it back out, over and over, with purée in between so you get full.

Melissa – These might be very foolish, even offensive ideas. I just would love to please your mouth. I feel so strongly for food and I can just imagine the panini longing.

Me – no, I love it! I would drool all over a panini bag.

Me – I am desperate and the more desperate I get, the more violent I am willing to be to get what I want.

Me – I am like bargaining with some powerful dark force. ” if you let me eat a panini, I will burn down Chicago.”  **

Melissa – I can’t say I know what you’re going through, but i know it can’t be easy! When I’ve had to not eat solid food for just some period of time, i went mad.

Me – I always saw myself as a force for good, but it has taken so little to push me over the edge. Am I truly a slytherin when all my life I thought I was a hufflepuff?

Melissa – Serious hunger can push any human to the brink.

Me – Exactly. My teeth are depressed. They have lost their purpose and they are not taking it well. I think I feel at least two spite cavities forming.

Me – Can I put this conversation on my blog? I think it is a wonderful representation of my life as a feeding tube foodie

Melissa – I’d be honored.

 

 

 

2 thoughts on “Feeding Tube Foodie; or How I’m Being Lured to the Dark Side

  1. kellykago says:

    Oh my goodness you just made me laugh out loud. I have bulbar onset als (diagnosed in Dec 2016) and am experiencing early issues with moving foods. So I totally get this post. I’m sorry that you have to deal with this but thanks for the moment of laughter. I’m not looking forward to sharing this fate but I know it’s coming.

    Like

  2. Josie says:

    Oh my goodness! You damn near have me in tears over your text conversation. Hufflepuff turned Slytherin, eh? Someone get this woman a pinini! “Chicago is at risk, guys!” Oh, you are hilarious.
    I know it is hard having to deal with one too many changes. You are literally such an inspiration to me. You continue to make the best out of things. It’s quite okay to get mad sometimes, too. We are human afterall. My grandma used to always make me blend up damn near anything she had a taste for to put through her feeding tube. Including threatening me to order her old favorite drink, “Rum and Coke”.. i had no choice, she wrote down what she wanted and gave me the look. I don’t compete with THAT look. Anyways. But i understand wanting the texture. Ugh! You and Melissa may have been on to something. 😉 You are AMAZING, Mrs. ❤ Thank you!

    Like

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