3 Ways ALS Has Changed Me

I’m not the same person I was 10 years ago, before my husband, Todd, was diagnosed with ALS. The brutal reality of the disease has changed me in three ways:

1. I swear more

I’d never done much swearing.

When I was 15, I had just gotten my driver’s permit and wanted to drive my dad and brothers home from the county fair. My dad told me I couldn’t. As I climbed into the backseat of the truck, I snottily told him, “That really pisses me off.”

My mild-mannered dad exploded. “What did you say?”

I apologized.

My dad said he didn’t expect to hear such language from his little girl. We didn’t swear in our household. From there, I went to a Christian college where any kind of foul language was frowned upon. After college, I worked with children and teens in an inner-city ministry, where we had rules against swearing.

I didn’t have to try not to swear. Vulgar words weren’t in my daily vocabulary, and they weren’t used by people around me. I used to cringe when I heard profanity in movies because I thought there were better ways to express one’s feelings — until Todd got ALS.

When I’m in the car by myself, I find swearing sometimes is the best way to express my ongoing grief.

I’m still not a fan of how swear words are casually used in the broader culture. When swearing is used to express delight or minor irritations, we are left with no words to express our anger about the worst parts of life. Fortunately, I’ve had a lifetime of saving up those special words to express my frustration over this bleeping horrendous disease.

2. I cry more

I used to cry when things affected me personally, and I cried for those I loved. I experienced deep personal grief when Todd was diagnosed with ALS, and I cry whenever he experiences further decline. It is a reminder of where this path is taking us. My personal grief has developed in me more compassion for others, even those I don’t know.

There is so much pain in the world — I am only now more aware.

Because I have so many ALS connections on Facebook, my newsfeed brings me to tears as I read of people dying or of surviving spouses commemorating anniversaries of their loved ones’ deaths.

The world news makes me cry, as I hear of tragedies in Syria or of Chinese students in Illinois being shunned during the coronavirus scare.

I also cry tears of joy when I hear stories of human perseverance through the big and small challenges of life. I don’t follow football, but I found myself crying as I listened to a story of people in Kansas City celebrating the Chiefs’ first Super Bowl victory in 50 years. Which brings me to the third way ALS has changed me.

3. I laugh more

Since I’m in a perpetual state of grief, I crave comic relief. I seek out things that make me laugh, such as funny stories our kids bring home from school. I imagine amusing scenes for a novel inspired by life events. Todd and I banter about grammar.

Before Todd had ALS, he and I watched high-stakes dramas and action-packed TV shows. We were glued to the TV as Jack Bauer raced from one crisis scene to another in “24.” But these days, our life has enough drama of its own.

Todd had a cold this week, and it was intense and scary at times. On one occasion, I repeatedly pushed on his abdomen but the mucus wouldn’t come up. I was starting to panic when he finally cleared his lungs. We had a lull before the next round of assisted coughs, so I got him some crackers and cheese for lunch.

“I need to laugh,” I told him. We streamed an episode of “Brooklyn Nine-Nine.” Two detectives are cracking jokes as they interview a psychologist who had reported a possible murder. The doctor asks them, “Are you normally so cavalier around murder investigations?” “Yes,” Detective Boyle replies. “We see a lot of darkness in our line of work, and humor is one of our coping mechanisms. It’s self-preservation through dissociation.”

Exactly.

I fed Todd his lunch, and we laughed the stress away.

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