‘Life Is Pain’: Living Day by Day With ALS

How one caregiver copes with 12 years in a 'space of no resolution'

Kristin Neva avatar

by Kristin Neva |

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Months after my husband, Todd, was diagnosed with ALS, our church’s worship leader asked us to participate in a Sunday morning service with “Cardboard Testimonies.” We watched an example on YouTube in which music played while people stood in front of the congregation and shared their stories.

Presenters didn’t talk. They just took turns holding up pieces of cardboard with words written in thick, black marker. One side named a hard situation the person had experienced, and the other side declared the resolution that God had provided. A couple might write “infertility” on one side, then flip the cardboard over to reveal “adoption.” A person might turn from “addiction” to “sobriety.”

But ALS has no cure, so the worship leader suggested we might write “Diagnosed with ALS; 3– to 5–year life expectancy” on one side, and on the resolution side write “My home is in heaven.” At the time, I didn’t find much comfort in the idea of Todd being in heaven. We had two young children who needed their dad here, on earth. Instead, I wrote, “Learning to live day by day.” That’s all the faith and positivity I could muster.

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Perhaps when Todd is gone, I’ll find comfort in eternity, but for now we are here. After 12 years with the disease, I’m glad he’s outlived the early prognosis and has been here for so much of our children’s childhood. But living with ALS is hard, and especially now that Todd has difficulty breathing.

Living with progressive disability is isolating for both Todd and me. Todd has lost his independence, and he has to tolerate aches and itches. I’m his caregiver, and in the United States, there’s little caregiving support for a disease that’s so demanding. It feels like we’re living on the edge of death. I never know when I’ll need to clear his lungs with a manual assist cough so he can breathe. We’ve been through years of trauma, and yet the hardest times are still to come.

How do we live in this space of no resolution?

In the movie “The Princess Bride,” the Dread Pirate Roberts tells Buttercup, “Life is pain, Highness. Anyone who says differently is selling something.”

We live in an often pain-filled, broken world, but it’s the only one we’ve got, so we navigate the best we can. Can we find value in living, even with suffering? Can we still find ways to contribute to society and love those around us? Can we find bits of joy in the midst of sorrow?

My faith hasn’t provided the healing or even the comfort I’d hoped for, but I’m still trying to learn to live day by day as I seek out purpose and beauty.

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.


Carrie Newhard avatar

Carrie Newhard

While I am not living with ALS my daughter’s partner is. He was diagnosed at 38 with ALS and now 1.5 years later is dependent on her for all his care. Their dreams of marriage, children and life’happily-ever-after’ are gone. She is his caregiver while she also works full time and their life is unbelievably hard in all the ways you mention.
When I read your blog, I see so much of what you share happening to them, too. The pain, frustration, fears, loss, exhaustion. Oh how my daughter is constantly and forever exhausted. I try to fly there to visit every 6 weeks to help but seems like it is never enough.
Thank you for your honesty and words.

Kristin Neva avatar

Kristin Neva

Thank you for commenting, Carrie. Yes, it is exhausting and so hard to lose dreams.

Gwendolyn Gordon avatar

Gwendolyn Gordon

Kristin, I am so sorry Todd got ALS so young. My husband was diagnosed October 2019 with Bulbar ALS. I am a retired GI nurse and he is a retired Respiratory Therapist. He is still walking but has similar issues with too much saliva that he has difficulty clearing. He is on a Trelogy bipap machine at night. And a Peg tube for nutrition and meds. He is not able to talk now or swallow. It scares me to think of what’s to come. Thank you for being so upfront with the problems you and Todd are having. I think it will help me plan for the problems we will have in the future.

Kristin Neva avatar

Kristin Neva

Thanks for commenting!

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