Sunday, September 1, 2013

The lost pleasures of food: "A Chocolate Milkshake, Please!"


The lost pleasures of food: "A Chocolate Milkshake, Please!"

Eating for him had always been a great pleasure, the bigger and juicier the burger, the better. He had always asked for extra gravy on his plate lunch, and two scoops of macaroni salad. Any kind of chicken, pork or beef, with pasta, potatoes or bread were much preferred to salads and greens. Fruits were best served cold and sweet. It's not that vegetables and fish were banned altogether, but he preferred to go right for the heavier calories. He was not diabetic or morbidly obese, but he was heavyset and knew that a change of diet would be good for him. He would have none of it, he didn't drink, smoke, do drugs, carouse or gamble—eating was his one vice, and he loved it.

He remembered that eating had always been an important part of his life. His mother and father made it a point to bring the family together for dinners most weeknights, and definitely on Sundays. When the family could not dine together, TV dinners had been the norm. During the two years that he courted his wife, eating out was one of their favorite pastimes. Over dinner, they had learned everything about each other and had fallen in love. Whenever possible, he had continued the tradition of dining together with his small family. He cooked chicken, spaghetti, Hamburger Helper and other simple fare when his wife was too busy at work. Buying a Happy Meal at McDonald's for his son, or spending an hour over French Fries and a Coke, while his little boy played on the swings and jungle gym at the local park, was considered time well spent. Oreos and chocolate chip cookies were acceptable and common afterschool snacks. Ice cream before bedtime was a ritual he had passed on from his father to his son.

"Another bite?" His caregiver asked.

He moved his head slightly to the left and right, meaning "No."

The lukewarm mashed potatoes gave him no pleasure. "Water," he struggled to say.

He was perturbed that after every bite, he had to remind his caregiver to give him water. She knew that he had difficulty swallowing, and that he often choked on his food. He was annoyed that she seemed distracted, looking out the window rather than paying attention to him. He was depressed that he couldn't shovel the potatoes into his mouth as fast as he wanted. He had lost all patience with the tiny spoonfuls that she was intent on giving him. He wanted to take huge gulping mouthfuls like those that he used too. He wanted to taste the salted butter throughout his entire mouth. He was upset that the potatoes on the right side of the plate were clearly still warm, yet she continued to spoon him the cooler potatoes on the left. He wanted to guide the spoon by himself, choosing whatever items looked most appetizing at the moment.

He is angry that his choice of foods has been whittled down to things that are tasteless, soft, and easy to chew and swallow. He has to concentrate fully when eating. The flow of saliva, the precise placement of his food, the motion of his tongue and teeth, all have to be perfectly synchronized with his ventilator in order to prevent gagging. He cannot spend a lot of time chewing and swallowing, his energy is limited. His mouth does not open as wide as it used too – the mask covering the his nose prevents this. Long gone are the days of enjoyable conversations at dinnertime, a picnic at the park, gobbling a quick burger in the car, or even watching television during a meal. There's no more experimenting with exotic flavors and textures. Sadly, eating has become nothing more than a means to receive nourishment—the pursuit of pleasure through food has disappeared from his life.

He hates to watch restaurant and food commercials. The mixture of nostalgia and craving they bring is unbearable. He remembers dipping Ruffles potato chips during a football game, greedily licking barbecue sauce off his fingers after a rack of Baby Backs, and going back for second and third helpings at the all-you-can-eat salad bar. Imagining the unlimited breadsticks and pasta bowls advertised at the local Olive Garden makes his stomach growl with anticipation; a dream that he knows cannot be realized. The advertisements are persuasive, too clever, too invitingthey work too well. He'd rather not watch.

He now knows why babies often get frustrated in their high chairs. It's no fun at all being fed squishy slurry foods that have little spice or texture. It's difficult not being in control of the nourishment going into your mouth. He understands why they bang the table and scream when the food comes to slow or too fast. He empathizes with their cries when the baby food misses their mouths and dribbles down the sides of their necks. He understands their need to lash out when the water is too cold, the soup is too hot or the juice is room temperature. He realizes the pain that babies feel when they are hungry or too full. He knows what it's like to be unsatisfied and uncomfortable; he has had an air bubble in his tummy and not been able to stand up and move around to induce a gas relieving burp or fart.

"Thank you," he said as graciously as possible, indicating that he was done.

"You sure," she said. "How about some chocolate milk later?"

He shook his head "yes," as vigorously as possible.

Later that day, his eyes sparkled with joy when his wife unexpectedly brought him a chocolate shake from McDonalds. He is happy to be alive. He is lucky to have people who love him.

 
You see, I have ALS and even though I am perturbed, annoyed, angry, upset, and depressed –I am grateful. I am GRATEFUL that I can still be fed through the mouth, and that I don't yet have a stomach tube. I am grateful that my caregivers have found some soft foods that have taste. I GIVE THANKS for the variety of tastes that still comes my way. I appreciate the effort that my caregivers make, trying to keep me from losing too much weight and still keep a healthy balance to my meals. I am THANKFUL for the occasional joy I feel when something especially tasty slides effortlessly down my throat. I am a HAPPY when I complete a meal without aspirating. I SMILE from the cool or warm feeling emanating from my belly. There is still pleasure to be found in food.

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