Discovering surprising new ways to release the stress from ALS

What started as an incredibly frustrating day held an important message

Kristin Neva avatar

by Kristin Neva |

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One morning last week, I turned on my phone, but it powered down almost right away. I turned it back on and checked the battery. It was at 0% after being plugged in all night. I just had the battery replaced the previous week, and now the phone wouldn’t charge or stay on for more than 10 seconds, even while plugged in.

Being without a phone is problematic. My husband, Todd, has ALS and is paralyzed, and he pairs his phone with his computer to contact me if he needs help. My phone allows me to do chores around the yard or run quick errands in town. Also, I communicate with his night caregivers via text, such as when they need to cancel due to illness. It was time to get a new phone.

The rest of my day was filled with annoyances and logistical challenges — attempting to write down my contacts with a phone that wouldn’t stay powered on, arranging with my mother to borrow her phone while I ran to town, and letting my teenage son know I might be late picking him up from school.

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Todd talked me into getting another battery, just for the convenience of transferring all the data, and the technician kindly replaced it free of charge since it had lasted less than a week. Then I went to the phone store and selected a new phone, but the data transfer failed because the new phone had only half the memory of the old one.

I left the store without setting up my new phone and was late to pick up my son. “Let me tell you about my day,” I told him as he got in the car. I gave him the play-by-play description.

He looked amused. “There are wars going on in the world,” he remarked.

“I know, I know,” I replied. “It’s not a big problem. It’s not my biggest problem. Dad having ALS is a much bigger problem. But it’s still frustrating.”

“I get it,” he said. “I get frustrated when my computer isn’t working. Let’s go back to the store.”

We returned the new phone and purchased another one with adequate memory.

Later that evening, I related my phone saga to my daughter and my husband. It’s a story about nothing important. It was a manageable problem — not even a problem, just a tedious afternoon — but it felt good to vent about a situation I could control.

In life with ALS, I often feel defeated by situations beyond my control.

It was nice to deal with normal, everyday frustrations instead of trying to find last-minute caregivers so that I can sleep, fighting with medical supply companies to get my husband the equipment he needs, running to the house to help Todd in the bathroom before I have a mess to clean up, or handling life-and-death scenarios in which I race to clear his lungs so that he can breathe.

I write about my frustrations in some of my columns, but I often hold back when talking with friends and family. No one wants to hear me rant about the same unsolvable issues that come with a progressive disability and incurable disease. Sometimes I journal about my frustration, and I cry, but it’s emotionally draining and exhausting to grieve.

A few days after the phone incident, I chatted with my friend Jana. “I don’t know why, but it feels good to vent about something little,” I said.

“I think it’s a way to deflect the grief we feel,” she replied. “Some things are too much for anyone to carry, but venting about the little things is like opening a release valve on a pressure cooker. It’s a way to let out a little steam.”

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, and are intended to spark discussion about issues pertaining to ALS.


Shane avatar


I have found having ALS I now can fully appreciate the little things. Your writing is beautiful in numerous ways. Transparency. An economy of words. The unraveling of life's truths. Thank you.

Kristin Neva avatar

Kristin Neva

Shane, thank you for the kind words!

Sharon Visser avatar

Sharon Visser

Kristin thank you for your honesty and transparency. I often read what you have written and it seems as though you have it all under control. I think to myself :"why is your life so chaotic?". My husband still has use of his legs, but not his upper body (arms and hands) and his speech is getting worse day by day. I'm slowly taking over all the household tasks he used to do including the driving, which he found so hard to give up. Some days I feel totally overwhelmed and that's the truth! It was a relief to realize that I am not alone in the struggle to look after my precious husband.


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