Letting go of material things as ALS progresses

Chronic illness has a way of shifting what's important in life

Kristin Neva avatar

by Kristin Neva |

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A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS.

Over the years, I added other random documents to the box, such as vaccination records and even a few love letters Todd had written to me.

Retrieving a document from the box earlier this week, I noticed a foul odor. I flipped through the items and found Todd’s old watch bands covered with a dusty brown powder. Mold had infested our passports and the boxes holding my pearl necklaces, and everything in the box had a musty smell. With sadness and frustration, I sorted through the documents and memorabilia that I’d preserved for the future.

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Living With ALS Is a Matter of Letting Go and Keeping On

The love letters had black splotches on them. I don’t know why these four letters ended up in the fireproof box. I scanned them and printed new copies and added them to a decorative cardboard box where I keep others letters from Todd, including those from the first year of our marriage, when he wrote a letter to me every month.

I scanned other documents and put the originals in a box to burn.

I cut off the watch bands and cleaned the timepieces. When Todd was diagnosed with ALS, our son was only 9 months old, and Todd wanted me to give the watches to him when he got older. We didn’t think Todd would survive to see our son approach 6 feet tall and 15 years old, but he ended up with something more valuable than a watch: time to know his father. In all that time, he’s never seen his father wear a watch, and he’ll probably never wear one himself since we’re in the digital age with mobile phones always within an arm’s reach.

I threw out the boxes for my pearls and washed the strands. Since my 33rd birthday was within a couple months of Todd’s ALS diagnosis, he was still reeling when he gifted me a pearl necklace, forgetting that he had given me the same gift of a premier brand years earlier. I didn’t let on at the time that I already had a pearl necklace until years later, when our daughter needed something to complement her prom dress. I offered her the beautiful but less expensive strand, and Todd was completely surprised by his repeat gift. He only could remember giving me the first strand.

“I can’t believe I did that,” Todd laughed at the time. “I was in a fog for months after my diagnosis.”

For some documents, I need the originals, so I attempted to salvage them. I set those papers under rocks on my patio table in the sunlight to air out. I dipped our Social Security cards in a diluted bleach bath.

I flipped through our expired passports with feelings of sweet sadness. It’s fun to see the stamps of the places I’ve been, like Mexico, Guatemala, Taiwan, and France — the last two trips with Todd before he got ALS. Todd had a few more stamps in his passport, because he traveled internationally for work. His last trip was to Argentina, a year after he was diagnosed, which was difficult on him physically.

I wanted to salvage my passport, as it would be easier to renew it if I could submit the old one.

“Should I bleach your passport?” I asked Todd.

“I’ll never travel again,” he said. He is paralyzed, and his neck is so weak that he doesn’t even like to leave our home.

I cleaned my passport. I added his passport to the box to burn. I tasked my son to burn it all in our outdoor chiminea.

Watching it all go up in smoke, I asked Todd if he felt sadness letting go of his old passport.

“Not really,” he said.

I asked him why he thought that was, as I was feeling sad about it.

“You imagine the future when your passport will be useful, either to get a new one or to flip through the old one,” he said. “But my hands don’t work for anything material to have value, and I have no future use for it.”

We all have to let go of material things eventually, but ALS speeds the realization of the fragility of life.

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.


Karen avatar


I'm a new addition to an ALS household; he was diagnosed 8 years ago. Similar to my deceased Husband, Nick isn't yet ready to let go of things. I'm ok with that: I DO want to organize a little better, allowing me to find power tools as well as hand tools when I need them.

Patrick Nowlan avatar

Patrick Nowlan

Lovely, so glad I took the precious time to read this. Trying so hard to continuously find the courage to handle the days ahead. Most importantly, trying to make this as best possible for my family. Here I go again, making sure everyone else is comfortable, happy and healthy.
Sincerely and whole heartedly,

Bettye URBAN avatar

Bettye URBAN

He is a brave man, and you are as his wife and caregiver. I am older and recently diagnosed and I dread facing the burden this creates for my only child, and long for a peaceful way out of it. Good for you both as you still make memories together with your son.

Donna Keaton avatar

Donna Keaton

Great to hear what others experience with COVID. I feel so isolated by myself down in Fla. Thanks for your input.🌺

Rob Reynolds avatar

Rob Reynolds

The various power tools, blades, and tool bits were picked up by Habitat for Humanity two weeks ago as my hands will never build furniture again but perhaps someone else's will.


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