Grabbing Bits of Beauty to Rejuvenate

Kristin Neva avatar

by Kristin Neva |

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“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug that he’s been fighting for two weeks. His lungs keep filling with mucus, and I keep clearing them out. Just when we think he’s on the road to recovery because he has a long stretch without needing to cough, he relapses.

We both just want to get back to the old ALS normal of how he was before this cold. At least then his congestion didn’t come on suddenly, so it seemed safe for me to run to town as long as I was just 15 minutes away.

Life was hard then, but how do we keep going when the hardness of life seems unending?

I grab little bits of rejuvenation wherever I can find them.

Todd and I are working our way through the sitcom series “Frasier,” watching an episode on most days. It feels good to take a mini-break from the ALS life and laugh at the quirky characters — even if we have to pause the show for coughing or suctioning breaks.

I’m also going outside each day to walk with our dog, Comet. I’ve been posting pictures from my walks on social media. I keep my eyes open for beauty that feeds my soul in the midst of the crucible of sickness.

The moon. The trees. The flowers. The pond. A deer prancing across the field. A monarch butterfly flitting from lupine to lupine. The clouds in the sky.

I’ve shortened my walking circuit so I’m closer to our house and can get to Todd quickly if he dials my cell for help coughing.

Earlier in the week, I walked around our fields for a half hour, but then when I got back, Todd was drowning in mucus.

“You should’ve called me,” I told him.

“I was trying to let you get your walk in.”

It’s better if he calls when he needs help, and I’ll split my walk into two segments.

“Call me as soon as you feel your lungs start to fill up,” I told him last night. He called halfway through my walk, barely able to talk.

“I’ll be right there,” I said and dashed to the house. I cleared his lungs enough for him to catch his breath, and I worked on him for another 10 minutes before his lungs were clear.

I went out again, walking on a path I had mowed through a field of daisies. Comet ran into the field, and I took out my phone to snap a picture. “Sit,” I commanded, after which he bounded over to me and sat on the trail. Not the shot I wanted.

I popped a head off of a daisy and threw it in the sea of flowers. “Go get it,” I said. Eager to please, Comet ran into the field. “Sit,” I said again. It took a couple tries, but I was finally successful in capturing the picture I was after.

Comet. (Photo by Kristin Neva)

Even as Todd’s body is wasting away, even as he struggles to cough, even as I’m overwhelmed by the horror of ALS, little things bring joy and give me sustenance to keep going.

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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

Jean Zollinger avatar

Jean Zollinger

I'm so sorry for you and Todd having to deal with ALS. My sister in-law has ALS and my brother quit his job to be her caregiver 24/7. She is not doing well. She was diagnosed in 2017 with ALS. She is now on ventilator 24/7 and can barely speak. She is 60. It's enough going through ALS but now more bad news she has ovarian cancer. Now she has hospice. This disease is horrifying . I do not understand why they would not approve the ALS trial meds to possibly save ALS patients. I pray for a cure but unfortunately won't be in time for my sister in-law. My heart goes out to you and your husband. ALS not only effects the person but the entire family. I'm praying for you and your husband and all the other people who have this terrible disease. God bless you!! Stay strong. 🙏🙏

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Mahboob (Mo)Talukder avatar

Mahboob (Mo)Talukder

Hello Kristin,
I was in a similar unfortunate situation as you for a year and a half. My wife Cristina already passed away. I hope and pray that you are continuing care for your husband, Todd.
Mo

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Isabelle Zutter avatar

Isabelle Zutter

Bravo, nature as long as we protect her.
Very nice foto

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Anne Dondanville avatar

Anne Dondanville

God has given you such strength and love. He is speaking to you through the beauty of Michigan. Keep the faith. You are both incredible. Truly joyful amidst sorrow.

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Ann Thomson avatar

Ann Thomson

Good morning Kristin, This blog about finding a little time for ourselves really hit home. My husband of 37 years has ALS He was diagnosed in June of 2020. He went from a strong,active man to being paralyzed and totally dependent on me. My life is consumed by Jim. If I do get a chance to go to the store, I feel so anxious. I can’t wait to get back home even though I know he is with someone I trust. I know I need to go for my yearly appointments but I just don’t know how to be away from him that long. ALS is a horrific disease. 🙏🙏🙏

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Shannon Ward avatar

Shannon Ward

I don't know where to start in this conversation. My husband was diagnosed with bulbar ALS in May of this year and I haven't had anyone who is also going through this to talk to. I'm relieved to have found this site and read your columns. Your column about McClain State Park really touched a cord. We live in northern Wisconsin and our latest(and likely last)camping trip was to McClain at the end of July. My husband is still mobile but the decline is obvious and he has already lost his speech and swallowing abilities. I have been doing all I can to make his life easier but I feel like we're being stalked by a monster and it's only a matter of time before it overtakes us. One day at a time and trying to find some joy in each day is the only way we get through. We are fortunate to have had 44 years of marriage and our military career gave us wonderful opportunities for travel while we were young. It doesn't take away the sorrow of losing all of our tomorrows though. I feel worse for you and your young family and I pray that we can all find a way to come to some kind of peace of mind with this horrible disease. This is the worst club to be in but thankfully there are others out there that understand me. Please keep writing.

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