October 28, 2019, by Kristin Neva
ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below his sternum.
On Sunday morning, Todd needed several assisted coughs as we were getting ready for church. On the 10-minute drive there, my stress level rose as he struggled to breathe in the back of the van. I asked if I should stop. He shook his head no.
When we arrived, I told my daughter to grab my guitar and head upstairs. Sara and I were scheduled to lead preschool music.
Todd backed out of our accessible van, and a friend asked, “How are you doing?”
“I’ll be better when I can breathe,” he said through the gurgling in his lungs.
In the parking lot, Todd reclined his chair. The church shuttle bus pulled into the lot and stopped short of Todd. A stream of people got off the bus as I gave Todd several more assisted coughs.
Todd inclined his chair, and I told our son, Isaac, to come and get me if his dad needed help coughing.
Todd and Isaac wheeled into the sanctuary, and I joined Sara upstairs.
One minute I was acutely aware of the precarious nature of Todd’s health. The next, I focused on capturing the attention of rambunctious preschoolers between the two services.
I played guitar and Sara led motions. I delighted in the children singing and dancing. They were eager to wave scarves, shake shakers, and take a turn drumming on the cajon. A 4-year-old girl wanted to help, and she boldly took a place between me and Sara. This made me smile. Singing with the kids is a joyful break from stress.
After music time, I joined Todd and Isaac in the sanctuary. While I was upstairs, Todd had needed another assisted cough, and a paramedic friend helped him. Todd’s lungs filled up again during the sermon, so he wheeled into the lobby to get help.
He had an occasional weak cough throughout the rest of the service. I anxiously looked his way.
“I’m fine,” he whispered.
After the service, he said, “I think my lungs finally cleared out.”
“This is why people use the cough assist machine every day,” I said.
“Maybe I should,” he halfheartedly agreed. He doesn’t like how the device fills his stomach with air and makes him feel like he’s going to throw up. “Maybe it would be better now that I have the PEG tube. You could open the valve and relieve the pressure in my stomach,” he said.
I was able to relax on the drive home, but then I realized I had a headache. It was not surprising, considering the adrenaline that had been pulsing through my body.
We ate lunch, and I set him up on his computer. I hoped he would find time to edit the audiobook we recorded. Even though it was a cool fall day, we kept the windows closed and turned on the air conditioner in his office as it seems to improve his breathing.
It feels surreal to be living on the edge of life and death when breathing is compromised. It’s an absurd normal for me, and I must find ways to release the chronic stress. I exercise while I listen to podcasts or audiobooks, I journal, and I find outlets to be creative.
Todd’s lungs were clear, so I drove to the gym.
I jumped on the elliptical and listened to a chapter of my audiobook. As I pedaled, I felt the tension melt away in my mind and body. When I was done, I wiped down the machine and got myself a cup of tea. I drove home feeling calm and sane.