Snapshots of Life With ALS

“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota.

A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said.

He was doing fine when I left, but sometimes his lungs fill up with mucus without warning. At some point when he was on a call with his mom, he got congested and then struggled to talk. He managed to tell her to hang up and call me. Fortunately, I was almost home. I raced the rest of the way and ran into the house.

Todd looked panicked. I placed my hands below his sternum, counted to three as he stacked his breath, and then I pressed hard, like doing a Heimlich maneuver from the front.

Screenshot from ALS 411 video. (Courtesy of the Neva’s YouTube channel)

I could hear the mucus come out of his lungs on the first press, but it took several more attempts to clear them entirely.

I try not to think about what might happen during those times when the mucus doesn’t come out easily. Instead, I picture a pretty scene in my mind like a beach or my mom’s flower garden while I count and press again and again, letting my machine body take over while my mind goes elsewhere so I don’t get too upset.

When Todd was breathing freely, I called his mom back and told her he was fine.

As disturbing as it was for her to hear him struggle to breathe, it would’ve been more disturbing for his mom to watch me wail on his stomach, so we were glad Todd didn’t have issues with his lungs while his parents were visiting.

(Courtesy of LeAnn Neva)

She got to witness the more pleasant parts of his life. Todd engaged in normal conversation. He played Scrabble, and quite well considering he can’t rearrange his letters. He just tells us which tiles to pull off his tray and where to put them.

His mom told me that Todd is doing better than she had imagined before the visit, when she was at home thinking about him having this awful disease. We try to make sure she knows Todd has many good days, too.

Yet others aren’t at all aware of the rough aspects of Todd’s reality, and they comment on how well Todd is doing. I try to let them know that life isn’t all roses. ALS is hard, and it’s sad, so I say, “Yeah, he’s doing well for living with ALS for a decade — but I do save his life at least once a week.”

A single snapshot in time can’t tell the whole story of life with ALS.

One moment, it might appear that life is smooth sailing. We’ve got this thing mastered. But in another moment, the monster is in control as Todd’s jaw cramps, his muscles twitch uncontrollably, or he aspirates and struggles to breathe.

(Courtesy of Lani Siirtola)

We have impossibly hard moments, but also beautiful moments, that create the photo album of our life with ALS.

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