Letting go of material things as ALS progresses

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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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.

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