Having Grit Matters in Choosing Medical Interventions With ALS

Just because help is possible doesn't mean it's without costs, a columnist finds

Kristin Neva avatar

by Kristin Neva |

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My 16-year-old-daughter, Sara, watched a TED Talk by Angela Duckworth on grit in her AP Language class. Sara was not impressed.

“I don’t want to have grit,” she declared.

Many of her high school friends are taking college math classes while she is on the standard math track. She sees how stressed many of her high-achieving friends are, and she doesn’t want that pressure. Sara is a smart kid, but she’s not a math genius, so she has to work for her grades.

“I don’t want to work any harder than I am,” she said.

I pointed out that she has grit when it comes to other things, like studying dance and participating in every musical theater opportunity that’s available in our small community.

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Duckworth, a psychologist and scientist, defines grit as “passion and perseverance for long-term goals.” It’s about having “a goal you care so much about that it organizes and gives meaning to almost everything you do.”

At this time in my life, my primary goal is to raise my kids. They motivate my husband, Todd, and me to keep persevering, even while life becomes increasingly difficult as his ALS progresses. ALS is a monster of a disease that has resulted in Todd’s paralysis and weakened lungs. It takes a considerable amount of grit for him to keep going, and it takes grit for me to take care of him.

As the disease progresses, we have to evaluate how much grit we want to muster for each escalation in medical intervention.

People make different choices when it comes to medical interventions. Some people choose none. Todd chose to get a feeding tube. He didn’t, and still doesn’t, want to be “trached.” But at the beginning of the year, after having difficulty breathing, Todd agreed to get noninvasive ventilation.

He told me he’s living a much more disabled life than he ever imagined he would.

“You thought you’d draw the line differently?” I asked.

“I just thought I would die before I’d be this disabled, but it happened gradually,” he said.

Just as my daughter and her friends have different math abilities, ALS is not a level playing field, and people have varied abilities to manage the disease. It matters whether one has the support of friends and family, or wealth, or the support of Veterans Affairs.

And even if one has the ability to navigate our complicated healthcare system, the disease progresses so differently for each person, and some people don’t have time to get medical interventions. Some people with the disease retain their ability to walk. Some continue to talk. Some can sleep independently. Some caregivers can handle the physical and emotional challenges of the disease better than others.

And it depends on the goals. For us, it’s the well-being of our kids. We want to maximize Todd’s time with them while also considering the toll the interventions would take on us. I see the stress many of those who choose more interventions experience, and neither Todd nor I want that pressure.

It’s not that we have more or less grit than those who chose differently; rather, we have different desires, goals, abilities, and resources.


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

Pete avatar

Pete

This is a horrible disease, but we must persevere. Make the most with your time and seek enjoyment in everything you do.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Pete.

Gwen McMartin avatar

Gwen McMartin

Thank you so much for sharing your family's story experiencing ALS. All the decisions re: medical intervention are individual and personal. I am 72, a mom, grandma and artist diagnosed a year ago. I've had a good life and at this point do not feel the need to prolong it at all costs with medical interventions, such as a trach or even a feeding tube. I am taking each day as a blessing, doing what little I can do and enjoying being with my grandsons. I recommend a wonderful book: "Learning to Fall The Blessings of an Imperfect Life" by Philip Simmons who was diagnosed in his mid 30's-it is a series of essays reflecting on life imperfect and death. Many blessing for you and your family!

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Kristin Neva avatar

Kristin Neva

Thanks for sharing your experience--and for the book recommendation!

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