A snapshot in time prompts a flood of emotions and reflection
A columnist vividly recalls where her late husband was with his ALS progression
A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an accessible home. His ALS was advancing rapidly at the time, which prompted our move. He could no longer walk, but I could still transfer him unaided to a scooter, power wheelchair, or reclining armchair.
In the photo, which I don’t remember taking, Jeff is driving our riding lawn mower, which we called “Ferdinand,” and caring for our new yard just as he’d cared for every place we’d ever lived together. It’s late afternoon, nearing the golden hour of daylight, his favorite time of day. He’s using his arms, which were still working but waning, to steer the mower. His head is tilted slightly forward in concentration. To a viewer who didn’t know Jeff, the photo is simply of a man working in his yard. You’d never know that he was living with ALS.
Given the timing of the photo in relation to his disease progression, I would’ve needed to transfer him to the lawn mower. Although I don’t remember that day specifically, I know I used to do this happily, because keeping as much normalcy as we could was important to both of us while he was living with ALS. Normalcy for us meant, among many other things, him caring for the yard, preparing our coffee, and otherwise making our house a home.
Jeff Sarnacki mows the lawn in November 2019. His ALS was rapidly progressing at the time. (Photo by Juliet Taylor)
On the day of this photo, I would’ve also been balancing the conflicting emotions of wanting him to find joy in every moment that he could and enabling him to do so in any way that I could, while fearing him getting hurt. That meant that while I would’ve transferred him to the mower, I’d be watching while he worked, which probably explains why he was unaware that the photograph was being taken.
His falls from ALS were becoming more common during those months, and I could no longer help him up from them. We’d already called 911 several times for lift assists. He was frustrated each time we had to summon help, but I couldn’t lift him unaided, and he couldn’t help me try.
Falls can accelerate ALS progression, and Jeff’s progression was already heartbreakingly faster than average. A fall from a lawn mower could have dire consequences, so I wouldn’t have taken my eyes off him.
Given the time of year, the length of the grass, and Jeff’s advancing ALS, it’s likely this photo captures the last time Jeff ever mowed our lawn, which gives rise to so many feelings more than five years on. The first is, as always, the shock and sadness of the diagnosis, which time doesn’t seem to change. It strikes me viscerally even today. Then there’s the pain of his loss and the feeling of theft that he didn’t have many more decades of life. Along with those emotions, however, are awe at his resolution, fortitude, sense of humor, and frankly, courage in the face of fear, which was evident in so many quiet ways while we lived with his ALS.
Living with ALS requires people to make choices that are as individual as they are. There are no accurate generalizations about how people approach living with this disease. There is no requirement to live with ALS in any particular way. In our case, we lived with both bravery and fear every day.
What I remember, and what this photograph reminds me, is that finding normalcy in the traditions and activities of our daily lives was reassuring to both of us. Jeff wanted to mow the lawn and grow flowers and feed the birds and ducks for as long as he could, enjoying nature and beauty and the pride of caring for our home, and for me. I wanted to help him make this happen. We approached so many things in ALS this way.
By the time the grass grew again the following spring, Jeff’s ALS was advanced. He could no longer sit upright unaided, so mowing wasn’t possible. He died that May.
When I came across the photo this week, I was moved that he had tended the lawn at our new home so late into his ALS diagnosis and with the physical limitations he was experiencing at the time. I was grateful I’d had the presence of mind to recognize the beauty of that moment to take the photograph. While I don’t remember the moment, I will never forget the feelings.
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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