Seeing the rhythm of my life as I navigate ALS

I keep playing a new song by Bon Iver. Once my husband, Todd, who has ALS, is set up on his computer after breakfast, I turn my attention to household chores until he needs my help again. My new find, “There’s a Rhythmn” [sic], has a reflective, melancholy feel that resonates with me in this season of my life, so I ask my smart speaker to play it.

“Can I feel another way?” Bon Iver croons.

“No, not really,” I reply out loud, as I put plates in the dishwasher.

Of course I’ve tried, but I can’t escape the grief that entered my life after Todd was diagnosed with ALS nearly 15 years ago. I can’t exercise my way out of grief. I can’t pray my way out. I can’t medicate my way out. I can’t talk my way out in therapy.

Can I really still complain?

To be back here once again

There are miles and miles of tape

You can watch it, it’s been saved

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As I hand-wash my cast iron pans, I consider the miles and miles of tape of my adult life. I can read it; I’ve saved my journals from over the years.

Recently I was organizing my attic and found my journal from my first year away from home — a three-ring binder filled with notebook paper. I analyzed my thoughts and feelings as an 18-year-old, delving into the angst I felt as I navigated friendship and romance. I was trying to figure out who I was.

“There’s a rhythmn [sic] to reclaim,” Bon Iver sings.

Thirty years later, I still journal. It’s hard to believe Todd has had ALS for half of my adult life. I still analyze my thoughts and feelings. I still delve into the angst I feel as I navigate friendship and romance — but now with terminal illness. I am, once again, trying to figure out who I am.

There’s been a rhythm to my life from when I was a young adult until this day. In each chapter, I’ve reflected on questions of meaning and purpose, and I imagine I’ll write again about these repeating themes when I finally experience widowhood, and again when my kids are fully launched into adulthood, and probably again in my old age. Again and again.

I could leave behind the snow

For a land of palm and gold

But there are miles and miles to go 

And I’ve been down this road before

There are miles and miles to go before I’m out of the winter of ALS. So as I walk through this one, I’ll listen on repeat.

There’s a rhythmn, there’s a rhythmn

There’s a rhythmn, there’s a rhythmn

There’s a rhythmn, there’s a rhythmn

I find solace in that.

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