Finding humor lifts our spirits in life with ALS
Two other things that are constantly required are love and patience
My husband, Todd, and I work New York Times puzzles while we eat breakfast. Because Todd is paralyzed due to ALS, I feed him.
We start with the Spelling Bee puzzle, which offers seven letters for you to make words with. There is always at least one word that uses all the letters, called the pangram. We try to find that one first. Todd usually spots it before I do.
One morning, I cooked up some leftover steak with onions and fried a couple of eggs. I poured Todd some coffee and put a straw in the cup. I brought everything to the counter-height table where Todd eats, and I sat down next to him. I pulled up the Spelling Bee on my phone and set it in the phone holder where we could both see it. I stabbed some steak and onions with a fork and put it to Todd’s mouth.
“Another bite,” he said when he finished chewing.
I stabbed more steak and onions.
“Mega-bite,” he said.
I added some eggs to the fork.
“Mega-bite,” he said more forcefully.
“Sheesh,” I thought. He was being a little picky and more demanding than usual, but I’d try to accommodate him. I overloaded the fork, adding a huge piece of egg and tried to get it to his mouth without dropping anything. The egg dangled, barely hanging on.
He chewed the mouthful. “The word is MEGABYTE!”
I laughed. “I thought it was ridiculous how much food you wanted,” I said.
“I just thought, ‘Why is she stuffing so much darn food in my mouth?’”
We laughed together. I chuckled over that scenario all day. It still makes me laugh.
Because Todd’s limbs are completely immobile, he needs help with everything — eating, drinking, brushing his teeth, turning in bed, moving an uncomfortable arm, adjusting his glasses, toileting, bathing, scratching an itch, and adjusting his ventilator nasal pillows.
Paralysis is difficult. It’s hard for Todd to be fully dependent on others — mostly me — for his comfort. He lacks autonomy.
It is also difficult for me as I’ve lost a lot of independence, too, as he became dependent on me to meet his needs.
It takes a lot of love and patience from both of us. Life with ALS can be tedious, but it lifts our spirits when we find humor, such as our “mega-bite” miscommunication.
Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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