A new experience at home is especially meaningful with ALS
How a special meal rekindled my husband's passion for cooking
Life at home with ALS becomes like “Groundhog Day,” the 1993 film starring Bill Murray, in which the main character, Phil, is stuck in a time loop and is forced to live the same day over and over. But there’s something in us that craves novelty, and Phil goes so far as to learn piano and French.
Being homebound is hard on the psyche in later stages of ALS. We don’t go out now that my husband, Todd, needs noninvasive ventilation to breathe and his neck is so weak that it’s uncomfortable to ride in his accessible van. We miss life before ALS, when we had new experiences like vacations to faraway places and interesting food at new restaurants. Since moving to northern Michigan 12 years ago, one of the things Todd misses most about city life is having access to food of various ethnic origins.
Last week, we had a novel experience brought to our home, and Todd got to rekindle his old passion as a home chef.
Our friend, who was returning from Chicago on Thanksgiving Day, texted Todd: “I’m at the Japanese grocery store Mitsuwa Marketplace. I can bring back wagyu beef.”
Todd replied that wagyu beef would be fantastic and that he would ask our teenage son to cook it, because he has perfected the art of cooking the perfect steak.
Our friend texted pictures of packages of seafood. “How about shellfish?”
“I do miss large prawns,” Todd replied.
Our friend arrived later that afternoon to have Thanksgiving with us, and he deposited in our refrigerator the wagyu steak, eight large fresh prawns, and a 16-ounce jar of medium fresh Pacific oysters. Todd suggested that he return the following night, and our friend and teenage son would then cook the meal.
Todd knows that I’m too busy with his care, finding nighttime caregivers, managing snow removal, and making wreaths to take on learning how to cook new things, and I especially wouldn’t be up for it the day after preparing and hosting a Thanksgiving meal. But I said I would cook white rice for the meal along with grilled chicken for the less adventurous eaters.
In the meantime, Todd shared videos with our son on cooking wagyu steak and making tempura shrimp, and he asked our friend to pick up peanut oil and cake flour from the grocery store.
On Friday night, I told our son, “You better not mess this one up.” The 8.6-ounce strip steak was imported from Japan with a price of $64.79. “That’s about $120 per pound,” I said. “This may be a once-in-a-lifetime experience.”
Wagyu is Japanese cattle with a higher proportion of marbled fat than what would be seen in a typical American Black Angus. It is so rich that it is generally eaten in small quantities.
Todd came to life coaching the guys.
He had our son make the tempura batter while our friend cleaned and cut the prawns. Todd asked our friend to set one prawn aside for me because I’m gluten-free, and I grilled that along with the chicken. Our friend poured the bottle of peanut oil into a wok and preheated it to 350 F, and our son coated the prawns in the batter. As our son fried the tempura shrimp, Todd had his friend mince garlic and then sauté the garlic and the oysters in butter. Finally, our son fried cubes of wagyu steak until he had a dark brown crust on the tops and bottoms and a slight bit of pink along the sides.
It was fun to see Todd create new dishes like he did in the days before ALS. And all the food turned out excellent.
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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