Finding the words to express my grief about my husband’s ALS

When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent “Freakonomics Radio” podcast episode, “Swearing Is More Important Than You Think.”

The host, Stephen Dubner, is struck that there seems to be more swearing now than ever, and often in places we wouldn’t expect. He introduces the topic, and then says, “Let’s start by hearing from a few of our listeners.”

My daughter’s eyes grew wide as she realized she was hearing her mother’s voice:

“I tell my kids they need to save those words for when something really bad happens, instead of saying, ‘I’m so effin’ happy,’ because otherwise you have no language left to express extreme frustration or sadness or grief.”

My son’s face showed disbelief, but it was me, and I’ve told him that. I grew up in a culture where we didn’t swear, and my husband, Todd, and I have maintained that culture in our home. I didn’t even swear when I sent the recording into the network; I said the euphemistic letter “f” followed by “-ing.”

Recommended Reading

March 23, 2023 Columns by Kristin Neva

As an ALS caregiver, I’m learning and adjusting as we go

But I did swear after Todd was diagnosed with ALS. I felt compelled to use the worst language I knew as the most honest expression of my emotions from experiencing one of the worst things imaginable. Because swearing had been a lifelong taboo, the language could approach the depth of my anger and sorrow.

I still don’t swear around other people often. It’s not helpful for my husband or kids to hear my unfiltered grief, but I sometimes scream expletives when I’m by myself in the car, and my journal contains a fair amount of curse words because I often write when I’m upset.

ALS is a brutal disease that involves a series of losses, and while I do experience moments of joy and gratitude, I need to process the ongoing grief that’s part of my life.

I’d submitted a longer clip in which I explained that backstory, but Dubner only used the part that I reference above. Todd was amused that I was on a popular podcast that could’ve possibly set the record for the number of swear words used, although they were all bleeped out. I delighted in my 15 seconds of fame, as I wondered whom I might share it with.

And then I thought about my ALS family, many of whom share their frustrations on social media, often punctuated with expletives. Since we are all dealing with this **** disease, I think you’ll get it.

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.