Monthly Archives: October 2019

Just Breathe: Dealing with Chronic Stress

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.

***

This article originally appeared in ALS News Today: Just Breathe: Dealing with Chronic Stress.

No Guarantees, but We Have Choices

October 21, 2019, by Kristin Neva

“What? But there’s a guarantee on your website,” I told the customer service representative for the herbal company. I had requested a refund of a digestive supplement because it didn’t work for me.

He repeated his scripted line: “That product is nonreturnable because it’s consumable.”

“Wow!” I couldn’t believe my ears. I appealed to his reason and asked him to look at his company’s website.

It was impressive, and so were the testimonials, but what sold me was the “180-day money-back guarantee.” I checked the FAQ page to see if there were any strings attached. “If it doesn’t work for you, call customer service and get your money refunded, no questions asked.”

“It doesn’t matter what the website says,” the rep told me.

I asked to talk to his supervisor. He put me on hold, but the supervisor didn’t pick up.

I was upset. I had been sold a lie. I was the victim of false advertising, a guarantee that the company wouldn’t back up.

It wasn’t the first time that I had been disappointed in a guarantee.

Ten years ago, my husband, Todd, and I were in good health. Todd had a decent job, and we lived in a beautiful bungalow with our two young children. We were living the American dream.

I didn’t know it at the time, but I had unwittingly bought into the prosperity gospel. We weren’t perfect, but we were trying to do good in the world. We loved each other, our kids, and our neighbors. God was blessing our lives.

Then Todd was diagnosed with ALS at just 39 years old. He was told that he’d likely live only another two to five more years. There was no cure or treatment.

I was so disappointed in God.

I found a blog by a young youth pastor I had worked with in Chicago. He lost his wife to cancer. Like us, they had two small children. I read through tears about their journey and her eventual death.

“It’s so unfair,” I told Todd. “They were following God. Good marriage. Happy family.”

“So, you think it would be fairer if only drug dealers got sick?”

Yup. If only there were a correlation. If you break the law, you get ALS. Cheat on your spouse, get cancer.

It seems like that’s how life should work. You reap what you sow. Do what’s right, and blessings will come your way.

But that’s not how life works. God doesn’t guarantee wealth and health, but it’s so easy to fall into those belief patterns because it’s almost become part of the human psyche, a promise of the American dream.

Work hard, and you’ll succeed. Take care of your body, and you’ll be healthy.

Everybody at some level buys into a philosophy of self-determination. Life does work when we make good choices — until it doesn’t.

And then disappointment sets in. We are stuck in that gap between expectation and reality — the higher the expectation, the greater the disappointment.

Life happens, and the American dream turns into a nightmare. When tragedy strikes, life becomes too complicated for easy answers and banal sayings. We may find ourselves in a crisis of meaning. Some people want to give up, and that sense of nihilism can extend to others. Some people get mean. Couples divorce.

Where do we go from here?

We must fight and refuse to give up. We keep trying and doing what’s right. But we adjust our guiding philosophy to something more realistic than cheap slogans and worthless guarantees. We find something true that still demands our agency.

Here it is: Life is hard. It’s unfair. But we can make it better than it could be by the choices we make.

Try to improve your situation. Practice gratitude. Sacrifice yourself for others.

Find purpose and meaning by living with love for the sake of our fellow humans and our own hearts.

We know that we can make it better than it could be because we see the results when people make the wrong choices.

People can make choices. That’s my message of hope. Todd and I choose to be kind to each other and our kids. We have agency, even in the dire war zone of ALS.

By the way, I did get my refund, thanks to the power of social media and a comment I made on the company’s Facebook page. The company was apologetic and promised it would never happen again. If only I had that much influence with God as I pray for Todd’s healing.

***

This article originally appeared in ALS News Today: We Have No Guarantees with ALS, but We Do Have Choices.