Just Breathe: Dealing with Chronic Stress

Just Breathe: Dealing with Chronic Stress

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.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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5 comments

  1. Dave Reckonin says:

    The church visit was a very demanding one given those circumstances. Human compassion genuinely goes out to all of us who have to deal with our loved ones suffering through ALS.
    I am reliably informed that God will forgive our sins if we genuinely repent.
    The more relevant and pressing point would involve the question: Are we able to forgive God for creating everything in his universe, which, of course, includes the horrific brutality of ALS?

    • Kristin Neva says:

      The problem of suffering is one of the biggest questions in my mind. It’s hard for me to imagine another version of our world where being human didn’t include pain–I often think that would be preferable until I drill into what that world might look like and find I can’t conceive of a humanity other than the one we experience–and I am glad I have the chance to live this life with all its beauty, painful though it is.

  2. Dave Reckonin says:

    A world of outstanding natural beauty and concurrent horrific pain is quite understandable, even acceptable, if we allow ourselves to imagine, for just one moment, that the 5 Natural Sciences dominate the creation of the Universe as we know it, and that no other entity – creator or deity- is involved. In fact it makes infinitely more sense that way.

  3. john king says:

    I also have been suffering with ALS, diagnosed seven years this December. My heart goes out to you both. This disease makes it feel like we have been the brunt of a terrible injustice. As someone who has also pondered these issues, I have found satisfying answers to the question of human suffering in the Bible.
    The Bible does not teach the concept that God is testing us or punishing us. It does explain why he has allowed suffering for so long, and it comforts us with clear information showing that God will eliminate human suffering on earth very soon.
    I pray you will find comfort.

  4. Dave Reckonin says:

    “The Bible does not teach the concept that God is testing us or punishing us. It does explain why he has allowed suffering for so long, and it comforts us with clear information showing that God will eliminate human suffering on earth very soon.”

    Please could you give us your (chapter/verse) reference in the bible for this statement, John ?

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