Revisiting the past is bittersweet when living with ALS

As we head into the new year, I’ve been in decluttering mode. I sorted through my linen closet and discarded worn sheets and pillowcases. I sorted through files and found old tax returns, bank statements, and receipts, and I burned sensitive papers in my mom’s sauna stove.

And then I came across old files that my husband, Todd, had kept from when he went to college in the ’90s and from when he started work at SC Johnson in the early 2000s.

Todd wasn’t able to sort his papers because ALS has taken away the use of his limbs, but he was interested in looking at some of them. I placed a couple dozen documents in a folder, along with several old pictures that were printed from film, and set them in his office. I’ve been scanning the documents whenever I have a chance.

Todd had held on to his old college transcripts from community college and the University of Minnesota for his undergraduate degree and Master of Business Administration.

Recommended Reading

January 2, 2025 News by Esteban Dominguez Cerezo, MS

Muscle mass biomarker is associated with risk of developing ALS: Study

In Todd’s files, I also found his SC Johnson employment papers, including his confirmation of employment letter with instructions for his first day of work. With that was a summary of employee benefits, including a fitness center with a pool and access to a vacation resort in the Northwoods region of Wisconsin.

Among those old employment documents was a “Climber Certificate” to certify that Todd had “successfully climbed to the summit of the Sydney Harbour Bridge 2 October, 2006,” when he traveled to Australia on a business trip. Along with that was a photo of Todd waving from the top of the bridge with his co-worker and random tourists. The Sydney Opera House is in the background.

What a different life we lived before his diagnosis nearly 15 years ago, and what a different life we would’ve lived had Todd not gotten ALS!

Saved memories from post-diagnosis

Several of Todd’s documents were medical records from the Mayo Clinic in Rochester, Minnesota. After being diagnosed with ALS at the Medical College of Wisconsin by the neurologist who ran the ALS clinic there, Todd wanted the opinion of another movement disorder specialist. After a battery of tests and clinical examinations, Mayo confirmed the diagnosis.

Another document was an early floor plan of the accessible house that we had built after Todd’s diagnosis. The basic layout was similar to the house we ended up building, but it lacked important features for accessibility, such as a cul-de-sac at the end of the hall that allows Todd to turn around in his wheelchair, as well as angled doors into each bedroom.

We’d written notes on the plan based on reviewing our design with a woman who’d lost her husband to ALS two years earlier. She showed us the accessible features of an addition to their home. Next to our master bedroom, Todd noted the dimensions of their accessible bedroom. Ours would be smaller, but we thought there’d still be room to maneuver a wheelchair.

On the back of the sheet, I’d noted things she’d found helpful, such as installing many outlets for medical equipment. I’d also written “Where will you look in a hospital bed?” because the woman’s husband had spent much of his time in bed with ALS, looking out a window of their addition.

Among my files I found absolute treasures — handwritten cards from loved ones who’ve passed, artwork from our children’s early years, and from Todd, poems that he’d written to our then 3-year-old daughter before he went to work.

These handwritten notes I’ll revisit from time to time.

Decluttering wasn’t just about tidying up my home; it also reminded me of the arc of life I’ve shared with Todd, of the dreams we realized and the realities that redefined our lives. As we enter the new year, I cherish the good memories we’ve made.

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.