Why Dependency Is a Reality of Life With ALS

A holiday spiritual reflection on ALS, dependence, and kindness

Kristin Neva avatar

by Kristin Neva |

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Dependency is a difficult reality of ALS.

My husband, Todd, fought to preserve his independence as long as possible, but he lost each battle to progressive disability. When his legs became noticeably weak, he got a walking stick, and then a scooter, followed by a power wheelchair. He lost his ability to feed himself, go to the bathroom on his own, and adjust his position in bed so he can sleep through the night.

As his spouse and caregiver, I’m also dependent on the help of others. I can’t handle 24/7 care for Todd on my own. Nighttime caregivers wash Todd at night and put him in bed, and they turn him every hour so that I can sleep for six hours. I depend on the generosity of many people to help fund that care, and I try to find ways of supplementing our income at home while I care for Todd during the day.

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The kindness of others

This year, a couple people I had never met contacted me to buy wreaths that I make and sell during the Christmas season. They had read our blog and wanted to support us. Others sent Christmas cards with financial gifts. One such gift made me laugh — the giver jokingly wrote in the memo line of her check: “belly dancing lessons.” Another person I haven’t met included a handwritten note: “Hope this brings you some small piece of comfort in knowing that God sees your struggles and is with you in them.”

On Christmas, I was reflecting on the biblical story of how God entered this world as baby Jesus, totally dependent on the care of his mother and stepfather. “Silent Night” is a pretty song, but any mother will tell you the silence doesn’t last long with a newborn. Jesus no doubt cried when he was hungry, and his mother had sleepless nights comforting and feeding him.

We think of God as being the ideal, above and outside of everything — independent. But in the village of Bethlehem over 2,000 years ago, the God-baby had to have his butt wiped.

I would much rather be independent, but as English poet John Donne wrote, “No man is an island entire of itself; every man/ is a piece of the continent, a part of the main.” It’s a humbling position to be in, but if even God put himself in a situation where he was needy and dependent, then maybe it’s not such a bad place to be.

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.


Linda Dieken avatar

Linda Dieken

What a beautiful story. Just what I needed to hear. I have had ALS for 2 years now and learning to adapt. Thank you for your story.

Kristin Neva avatar

Kristin Neva

Thanks Linda!

Kathy Faye avatar

Kathy Faye

Thanks for sharing!! My husband was diagnosed on December 5th, 2022. But he showed symptoms for almost 2 years before being diagnosed. He walks with an upright walker but not as much as he used to. His right side is paralyzed for the most part and he drags that foot. Now the left side is showing similar signs. We use to walk the mall every day but we haven't in weeks now. I try to encourage him to keep moving and not giving up. It's been a difficult process to say the least. He is on Radicava for a few months now. I did get a prescription for when he wants a medical bed. I don't want to push the issue too soon. One step at a time.


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