Finding the Good in Being

Kristin Neva avatar

by Kristin Neva |

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In “12 Rules for Life: An Antidote to Chaos,” Jordan Peterson writes, “People can survive through much pain and loss. But to persevere they must see the good in Being. If they lose that, they are truly lost.”

Now that my husband, Todd, has ALS, I am more attuned to suffering in the world. Poverty. War. Other devastating diseases. Witnessing my husband’s decline has brought me to consider the existential questions Peterson explores in his book. Is Being worth it?

I read the Peterson quote to Todd. “What good do you see in Being?” I asked him.

“Being able to provide emotional support and guidance to you and the kids,” he immediately replied.

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I’m thankful Todd is here to help parent our kids. He brings a different and much needed perspective, especially as we guide our 12-year-old son through the challenges of middle school. Seeing as how I’ve never been a teenage boy, I feel especially unqualified to be a solo parent to our son. And our daughter needs her dad’s affirmation.

Todd and I both find purpose in parenting our children, and with that there is good in Being.

But ALS is hard, and it only gets harder. I’m keenly aware that there will come a time when Todd will have no choice in Being. So far, Todd has survived a number of horrifying events that are etched in my memory.

Todd fell and bloodied his face when his legs weakened and he wasn’t yet in a wheelchair. I worried he would end up with head trauma in addition to the disease.

Todd has aspirated food and mucous multiple times. The last time he took his nightly pills orally, they got stuck in his throat, and he thought he was going to die. The caregiver didn’t understand what was happening, but fortunately, one of the pills dislodged and he managed to get a gasp of air. All meds now go through his feeding tube.

And just last night, we had a big scare due to his weak lungs. The trauma is still too raw for me to expand on what happened, but suffice to say he stopped breathing.

After I stabilized him, he told me, “I wasn’t scared for myself. If it was just me, I would’ve just stopped breathing and it all would have been over. But I have you and the kids, so I kept trying to breathe until I couldn’t, and then all I could think about was that this would be too hard on you, for me to go now, like this. I have more I want to tell you, like how good you are and how much I love you.”

Is there good in Being? Love is good, and where there is love there is good in Being.

It’s hard to be a spouse caregiver. Even when we aren’t in crisis, caregiving is often isolating and mundane. Some days, I have to fight to find the good in Being. I press on hopeful that moments of joy will break through in the quiet beauty of falling snow, a cup of hot tea, or love and laughter in our home.


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

Ipek avatar

Ipek

Thank you for writing your perspective. My mom was diagnosed July 2nd and I fear she isn't far from where Todd is today. In the past she has said she doesn't want a feeding tube, but I can't imagine letting her starve. Todd's statement makes me want to convince her to get a tube because he is alive and there for you. We aren't there yet but I'm hoping she will change her mind.

Ipek

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Ipek. Even though Todd still isn't using his tube for nourishment, it has been very helpful for medications and for comfort when he has air in his stomach. (I can burp the tube.) We made a video about Todd's decision and experience getting the tube on our YouTube Channel: ALS411 https://www.youtube.com/watch?v=BHf0N0Bup1Q

Kathleen B avatar

Kathleen B

Thank you Kristen,
I am only 6 months into ALS diagnosis, but I can relate to what you say as 'Being'...especially as I think of my husband caregiver. Though the roles are reversed, and we are MUCH newer to the path forward, it is good to know that our care & concern for each other (& our 3 young adult children) is 'all as it should be' for our ALS circumstance that is an unspoken (but recognized by both of us) devastating diagnosis. Thanks for your ability to articulate difficult things for new pALS...even your 'Joyful Sorrow' title has more meaning as time goes on in this journey.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Kathleen. I'm glad the columns are helpful. Yes, joyful sorrow, every step of this journey.

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