Paul's breathing dropped to seventy percent. The number arrived at the clinic visit on Tuesday like a weather warning — not the storm itself, but the pressure change that says: prepare.
Dr. Andersen recommended transitioning from the nighttime BiPAP to a more intensive non-invasive ventilation system. Not a ventilator — not yet — but a step toward one. A machine that helps him breathe more hours per day, that sits beside his wheelchair during the day as well as beside his bed at night.
The machine arrived on Thursday. It's larger than the BiPAP. It has a face mask that covers his nose and mouth. It hisses and pushes and the sound is the sound of air being delivered to lungs that can't pull it in on their own anymore, and the sound is constant now — not just at night but during the day, the hiss a background to every conversation, every reading, every meal.
Paul uses the eye-tracking device to type: "I SOUND LIKE DARTH VADER." The machine spoke. I laughed. Elsa, who was there, said, "Darth Vader had a better costume." Paul eye-typed a smiley face. Humor. The last unconquered territory.
The breathing assistance means meals by mouth are harder. The mask has to come off, the breathing has to manage unassisted for the duration of the feeding, and the feeding has to be brief because unassisted breathing is no longer easy. I've shortened the meals — five minutes, ten at most. A cup of soup. A few spoonfuls of puree. Then the mask goes back on.
The feeding tube does most of the work now. The formula flows at night. The nutrition is delivered. The body is fed. But the mouth — the mouth still gets taste. Five minutes of taste. Five minutes of wild rice soup or blueberry puree or the thickened coffee that Paul drinks every morning as his first act of the day.
Five minutes. I make the soup for five minutes of mouth. That's what I do. I cook for five minutes of taste. And the five minutes are worth every hour of preparation because the eyes close when the soup hits his tongue and the closing of the eyes is everything.
Fourth of July is Thursday. No fireworks this year. Not from the porch, not from anywhere. Paul's energy is too low. The breathing assistance is too constant. We'll stay inside. I'll make something festive — corn soup, maybe, sweet and American, blended smooth for five minutes of taste.
Five minutes. That's what we have. I'll make every second count.
I made wild rice soup this week, but on the days I need something even faster — something I can have ready and warm the moment the mask comes off — miso soup has become my answer. It takes almost no time, it’s smooth and gentle and deeply savory, and it asks nothing of a body that is working so hard just to breathe. I started keeping miso paste in the refrigerator the way some people keep emergency chocolate: for the days when five minutes is all we have, and those five minutes need to be perfect.
Miso Soup
Prep Time: 5 min | Cook Time: 5 min | Total Time: 10 min | Servings: 2
Ingredients
- 2 cups water or dashi broth
- 2 tablespoons white or yellow miso paste
- 1/2 cup soft silken tofu, cut into small cubes
- 1 green onion, thinly sliced
- 1 teaspoon dried wakame seaweed (optional)
- 1/2 teaspoon soy sauce (optional, to taste)
Instructions
- Rehydrate wakame. If using dried wakame, place it in a small bowl with cold water for 5 minutes to rehydrate, then drain and set aside.
- Heat broth. Pour water or dashi broth into a small saucepan and bring to a gentle simmer over medium heat. Do not boil.
- Dissolve miso. Reduce heat to low. Spoon miso paste into a small ladle or mesh strainer and lower it into the warm broth. Stir gently until fully dissolved. Avoid boiling after adding miso, as high heat diminishes its flavor and beneficial properties.
- Add tofu and wakame. Gently add the silken tofu cubes and rehydrated wakame to the pot. Warm through for 1—2 minutes without stirring vigorously, so the tofu stays intact.
- Taste and serve. Taste the broth and add a small splash of soy sauce if desired. Ladle into small bowls and top with sliced green onion. Serve immediately while hot.
Nutrition (per serving)
Calories: 60 | Protein: 5g | Fat: 2g | Carbs: 6g | Fiber: 1g | Sodium: 620mg
About the cook who shared this
Linda Johansson
Week 170 of Linda’s 30-year story
· Duluth, Minnesota
Linda is a sixty-three-year-old retired nurse from Duluth, Minnesota, living alone in the house where she raised her children and said goodbye to her husband. She lost Paul to ALS in 2020 after two years of watching the kindest man she'd ever known lose everything but his dignity. She cooks Scandinavian comfort food and Minnesota hotdish and the pot roast Paul loved, and she sets two places at the table out of habit because it makes her feel less alone. Every recipe she writes is a person she's loved.
