Train Your Eyes to Find the Light

Kristin Neva avatar

by Kristin Neva |

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Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday.

We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the mall to buy a new Coach purse. After buying the purse, we sat on a bench under the summer sun and ate kettle corn and drank fresh-squeezed lemonade.

“The day is a beautiful memory I will always have of our family,” I wrote in my journal.

There have been many good memories made during this difficult decade since his diagnosis.

The other day in the car, my daughter and I were singing along with JJ Heller’s song “This Year”: “Let’s fight the good fight. Train our eyes to find the light. And make this year the best one yet.”

On many days, the song’s lyrics feel overly optimistic as Todd’s disease progresses, as he loses more independence, as it becomes increasingly risky to leave him for any length of time, and as the world around us seems to be going up in flames. But I’m finding meaning in her words “train our eyes.” It’s not just about looking for the light, but actively training, like the kind of discipline needed to strengthen muscles.

Training is such an active word. It is full of intention — of action.

Now, after a decade of living with Todd’s ALS, life is harder than we ever expected, but we still made an effort to get out for my 43rd birthday last week.

We planned the day around Todd’s toileting needs. I loaded him in the back of his accessible van and drove the kids and him to Michigan’s McLain State Park, making slow turns and avoiding bumps to keep Todd’s head from jostling around.

Todd watches his son swim in Lake Superior. (Photo by Kristin Neva)

The park has an accessible path down to the beach, where we sat in the shade of a birch tree while the kids swam in Lake Superior. We visited with an old friend who met us there. My daughter hung out with friends, and I built a sand castle with my son. He engineered a sand bridge, using sticks and leaves as a foundation. And then we went up to the snack shack for ice cream.

The day is a beautiful memory I’ll always have of our family.

So much has changed in a decade. It’s been 10 years of trying to find the light that still shines through the shadows of ALS.


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Lucy Newton avatar

Lucy Newton

Beautiful story. Thank you. One of my best friend's was diagnosed in April, 2020 with ALS. She lives 400 miles away from me. I have sent her some care packages and messages. I want to be there for her. She is not doing well. She is already in a wheel chair. Already has a feeding tube and is nauseaus every day. How else can I do anything for her. I have never been good at this.

Kristin Neva avatar

Kristin Neva

It is so hard. That is nice that you send care packages and messages. Continue to do so--often times support drops off as time goes on. If there are financial needs that aren't being met, you could offer to organize a fundraiser through Go-Fund-Me or another service.

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