Finding the Words to Describe Our Relationship With ALS

Kristin Neva avatar

by Kristin Neva |

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I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so effectively. How am I coping?

Some days, I cope with my husband Todd’s ALS better than others, depending on the disease’s progression. Did he hit a new low that we don’t know how to manage? Did I get solid sleep the previous night? My coping abilities are sometimes stretched to the limit due to the nature of the disease. Ongoing decline. Ongoing stress. Ongoing uncertainty. Ongoing grief.

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The advertisement made me ponder the various words we use to describe our relationship to ALS.

When Todd was diagnosed, his doctor told us there was no cure or treatment. Still, I searched the internet for alternative therapies Todd could try. There had to be something we could do. I told my counselor I wanted to fight the disease. He asked me, “If you are fighting, how do you define winning?”

I said, “We win if we don’t give up.”

After more than a decade of watching Todd’s slow but steady decline, I don’t feel like we are winning. We aren’t really fighting ALS anymore, either. Todd still takes a few supplements that seem to help with some symptoms, but nothing he’s tried has stopped ALS from taking away more and more of his function.

I wouldn’t describe Todd as surviving ALS, either, at least not in the way that sometimes describes other diseases. I’ve heard of instances where people who’ve been diagnosed with ALS experience long-lasting improvement, or the disease seems to stall out, but those situations are rare. The vast majority of people with ALS experience relentless decline no matter what they do, and there isn’t a feeling of victory over a disabling disease that keeps getting worse.

People have said Todd is suffering with ALS. That is absolutely true. A disease that takes away the abilities to walk, talk, eat, and breathe results in much suffering, but even this word doesn’t tell the whole story. In our memoir, Todd wrote, “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”

Years ago, when I spoke to a women’s group, someone introduced me and said my husband was dying from ALS. I thanked the group for having me and then clarified that my husband is actually living with ALS.

There will come a point when Todd is actively dying from this awful disease — and we’ve had a few scares when I thought that time might be imminent — but today is not that day.

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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.

Comments

Nina Walfoort avatar

Nina Walfoort

Kristen, I love your writing and I so appreciate your honesty. We must talk about both dying and surviving. But, for me, false optimism is not helpful. Best wishes to you and Todd.

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Kristin Neva avatar

Kristin Neva

Thanks for your encouragement, Nina!

Deborah Baker avatar

Deborah Baker

Kristin, thank you for writing this! I was diagnosed July 2021 after nearly 2 years of symptoms & trying to find out what is wrong! After a severe fall in June , 2021 my ability to walk declined more rapidly. I can empathize with how you are feeling because my husband is my caregiver & I can feel his frustration, bewilderment, stress and grief as we watch my decline from an active, do everything woman to being wheelchair bound and needing help with everything! I know he’s exhausted and yet he’s so faithful! I love what your husband said about there being joy and suffering in the same place! And at the same time I would say! We are all going to die if something, but this disease robs you in incremental measures of so much. Thank you for your insights! Praying!

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Kristin Neva avatar

Kristin Neva

Thanks for sharing your thoughts on your experience, Deborah!

Susan avatar

Susan

Thank you Kristin! I found validation in your description of your family's journey over the last ten years. I'm into my fifth year living with ALS. I have often felt guilty for not "fighting" harder....not taking supplements, entering clinical trials, exercising enough, etc. I realize my acceptance of a no-win scenario doesn't work for everyone. But it was nice hearing someone else echo my sentiments. I wish you and your family many more days of joy.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting Susan!

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