Guest Voice: I have a new battle plan in my ALS food war
I've finally decided to fight less and instead get a PEG tube
Nancy Muirhead looks forward to getting a feeding tube so that she can have more positive food memories. (Courtesy of Nancy Muirhead)
I was never a foodie. Never one to order the lobster gnocchi, a bone marrow rice bowl, or smoked mackerel wrapped in bacon.
My preferences were always more pedestrian. Chicken nuggets and tater tots. Fast food hamburgers with a pile of stringy fries. Giant mall cinnamon buns as thick as a brick with extra butter and gooey sugar frosting.
Some of my happiest memories involve food. Like my mother’s homemade cheesecake for my childhood birthdays, with her radiant face beaming behind the lit candles. Or toasting another anniversary with frosty margaritas and a basket of warm, salty tortilla chips with my husband at our favorite Mexican restaurant. And plates upon plates of fragrant food prepared by our adult children at family events, every dish as special and unique as they are.
It appears that a different type of food memory is needed now. My bulbar-onset ALS is steadily progressing, with my mouth, tongue, and throat muscles weakening a degree or two each day. Eating food has become a colossal chore.
Lips that used to be the focus of so many romantic gestures — not to mention the recipient of expensive creamy colors — are now flaccid and nearly useless. Like iron security doors now converted to tissue paper, fluid and food will uncontrollably dribble down my face when I’m eating, with the occasional dramatic projectile of foodstuff into the airspace around me.
I found out that close friends and family can be surprisingly forgiving when this happens, but cats and computers? Not so much.
My loose lips have forced me to hold a tissue to my mouth after every bite in an attempt to catch as much undigested food or drink as possible. Since my tongue is mostly nonfunctional at this point, I use my index finger to unstick chewed food from odd corners in my mouth. I pull a tissue from discrete hiding places like a sleeve or a pocket and start dabbing away at my lips and wiping sticky fingers. It makes me feel like a stuffy old lady from the Gilded Age maintaining her modesty with a crumpled and soiled handkerchief.
Mealtimes are now tedious instead of anticipated, which I mitigate by watching TV to take my mind off my plate. I have found that certain genres are best while eating. Suspense and thrillers help me forget the tiny bites, the double swallows, the need to alternate solid food with liquids, and the constant dabbing with a tissue that is soaked by the end of the meal.
Despite all my efforts to make mealtimes slightly enjoyable and to find things that I can eat given my current physical limitations, I continue to lose weight. Not good. For the first time in my life, everyone around me is encouraging me to eat more often, to immediately and dramatically increase daily caloric intake, and to pack it on already.
“How about if I make you a peanut butter protein smoothie?”
“What’s your calorie count at right now?”
“How about some chocolate cake after breakfast?”
I woke up recently and stared at the ceiling. All the advice from different ALS professionals competed for space in my brain, voices talking over each other, until there was only one clear message: Enough with the food torture; it’s finally time to proceed with a feeding tube.
In less than one month from writing this, I will have a percutaneous endoscopic gastrostomy (PEG) feeding tube surgically implanted. This will allow me to get all the nutrition and fluids I need channeled directly into my stomach. I can finally say goodbye to the tedium of choking down food and instead eat and drink by mouth, only if and when I want to. And it’ll be food and beverages I enjoy and can swallow without a problem.
I have already given the feeding tube a nickname, Pegster, and I imagine her as a partner on my ALS journey — a hard-working bee who will remove from me one heavy burden while granting me the invaluable gift of connecting food to happiness again.
As I make new food memories with Pegster, my plan is to eat with conscious intent. I will seek out foods and drinks that bring forth happy memories from my past — foods with the consistency that I can swallow — like brown sugar oatmeal from my early days as a new parent, mashed potatoes with extra butter from our family holiday feasts, creamy butterscotch smoothies from weekend getaways, and homemade guacamole shared with best friends.
The memories that these foods evoke will swirl around me like translucent scarves while I (finally) enjoy every little bite and sip again.
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