Revisiting the past offers perspective on ALS progression

A social media video prompts a reflection on the selective memory of suffering

Kristin Neva avatar

by Kristin Neva |

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A memory from 12 years ago popped up on my Facebook feed. It was a video we had made for a benefit my husband’s co-workers organized for him after his ALS diagnosis.

“When I was diagnosed I thought of Danny,” Todd says at the start of the video, accompanied by photographs of a family friend who had just died of ALS. “He lost muscle function so fast that he could never adapt. He was always one step behind. He died a year and a half after his diagnosis.”

The video continues with clips showing Todd’s morning routine to get ready for work. I shave his head with an electric razor. Todd shaves his cheeks using both hands. I put on his belt.

Todd explains that his form of ALS is relatively slow progressing, “which is to say I lose function month by month rather than week by week.”

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Next, Todd awkwardly takes morning pills out of a 28-compartment pillbox and then swallows a handful of vitamins and supplements I had given him in a desperate attempt to stop the disease’s progression. With his weak arms, he tosses the pillbox back onto the second shelf of the cupboard.

“On most days, I don’t feel like I have a disability,” he says. “Routine tasks, like getting dressed, are difficult. But I adapt.”

He flings his arms to get a long-sleeved pullover shirt over his head. By that point in his life, he couldn’t do buttons, and he wore elastic waistband pants.

Todd sits down and puts on his cowboy boots — the easiest footwear for him to manage at the time — and talks about how the doctor had detected weakness in his left leg and suggested a sporty walking stick.

“I’m not ready for the walking stick. That, and the wheelchair, will come soon enough,” he ponders. “And when that day comes, I know our 1925 bungalow is not going to work. It is not handicap accessible, and renovations would be too expensive.”

Todd puts his computer bag over his shoulder and says goodbye to me and the kids. Our daughter is only 4 years old in the video, and I’m holding our toddler son in my arms. They were so little when our world turned upside down and our dreams were shattered.

Todd drives his truck across town and walks up to his office, ending the video with an expression of his appreciation for his co-workers and the benefit they had organized.

The stories we tell ourselves

Before Facebook reminded me of that video, I had thought back on those days as being much easier than things are now because Todd was more independent then. But watching the video brought me back to the grief and uncertainty, and the difficulty adapting to Todd’s ever-increasing disability.

The stories we tell ourselves about the past don’t always accurately reflect what we felt at the time. I sometimes forget that those days after the diagnosis were some of the hardest of my life.

I was recently going through some papers and found a notebook from 2020, when Todd had a bad cold and we were charting hour by hour the various medications I was giving him: guaifenesin, acetaminophen, DayQuil, Robitussin, and ipratropium bromide and albuterol administered through a nebulizer. The log starts on Feb. 10 and ends on March 1 — three weeks of intensive care as he struggled to cough and breathe and I wondered if he’d pull through. I don’t know why I saved the log, except that I felt a need to hold on to documentation of the horror we had experienced.

Todd often says that God gives us an amazing ability to forget pain. Perhaps our ability to forget is a coping mechanism to deal with trauma. Not remembering, or selective memory of suffering, can be a gift.

However, revisiting loss can offer insight into why we’ve become the people we are. And it can even be an encouragement as we continue to face an uncertain and difficult future. I feel apprehensive as we head into the new year, not knowing what we will face in the weeks and months ahead. But we’ve survived much, so perhaps we will be able to find the strength to keep going.


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.

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