The Gift of Presence Brought Meaning and Love to Life With ALS

Sometimes the best gift you can give someone is just being there

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by Juliet Taylor |

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I remember the times before ALS, when after a day away from the house at work or running errands, I’d drive home in anticipation of seeing my late husband Jeff’s blue pickup truck in the driveway. Jeff and I would often arrive home at about the same time each day, and my heart would leap a little when I’d see that he’d already arrived and we could start our evening together.

Most nights, we didn’t have specific plans, we’d just watch TV and enjoy each other’s company. Jeff was a good cook and might grill a steak for himself and a piece of salmon for me, or we might order a pizza and relax on the couch with the dogs. Jeff’s adult kids might stop by, always a welcome treat. We’d spend several hours of quiet time together in each other’s company, often saying very little. Jeff might make us smoothies, and we might talk about a house project we wanted to tackle that weekend.

It’s revealing to me now that these seemingly insignificant moments are among the ones I treasure and miss the most.

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While Jeff and I prioritized fun during our relationship — trips to out-of-the-way beaches, epic rock concerts, and dinners out in our favorite cities — I realize now that it’s the quiet times spent relaxing together that brought us closer as a couple. I came to understand and define this time of peace and contentment as presence. It’s remarkable how much sitting together in silence and understanding can build relationships, whether romantic or otherwise.

Jeff’s ALS diagnosis in 2018 changed how we experienced presence. As his physical weakness progressed and he required more assistance, our time together, while still happy, became busier. Steaks on the grill gave way to formula meals through a feeding tube, and house projects were replaced by acquiring and learning to use the medical equipment that comes along with living with ALS.

After Jeff’s diagnosis, we spent more time in each other’s physical presence than ever before, yet our moments of quiet, emotional presence were fewer — a function of nothing more than the relentlessness of ALS and the busy, constant requirements of caregiving. When Jeff was able to get comfortable and sleep, whether in his recliner, power wheelchair, or bed, I was hesitant to wake him. I wanted him to be able to rest.

Right around this time, our loved ones, somehow intuitively, began gifting us with their own presence.

A touching aspect of our life with ALS was the people who showed up for us. We had an abundance of friends and family who brought groceries, helped in the yard, hung Christmas lights, and moved us into a new home with sheer manpower. During the early days of COVID-19, these loved ones staged a drive-by birthday parade, with costumes and signs for Jeff. We both knew how fortunate we were to be surrounded by love and help. We would not have made it without this kindness and support from friends and family.

Equally valuable, though, were the ones who came to simply offer their presence.

We cherished those who consistently brought Jeff the gift of quiet companionship that we’d been missing. Jeff was a reserved person, deeply loyal, and when he made a friend, it was usually a friend for life. During his time with ALS, his very best friends, and mine, seemed to instinctively understand that showing up to just sit and be with Jeff brought deeply needed normalcy, a reminder of who he still was. They’d arrive with a cigar for him, or new music to hear, or some news to share about their kids.

A shadowy filtered photo with vignette shows three men sitting on the back deck of a house overlooking a body of water; the men are visiting and smoking cigars

Jeff visits with friends on the porch of his home in the summer of 2019. (Photo by Juliet Taylor)

The simple presence of these family and friends helped Jeff feel normal. They were people who could hear his voice even though he could no longer speak. They understood he was the same person he’d always been. They weren’t afraid of his changing body and physical capabilities.

I like to think of all of the people who showed up for us as those who ran toward fear rather than away from it. ALS is a scary disease, and it can be hard to see those we love experiencing its ravages, both physically and emotionally. Yet it’s during these times that we need them the most.

To be clear, these visitors might put away the dishes for us, or certainly not make more. The physical demands of ALS and caregiving make help welcome and necessary. But for us, presence brought love and meaning, too.

As we begin this holiday season, I reflect on the most meaningful gifts I plan on giving, and the best gifts I’ve ever been given. Without a doubt, as I think about our time living with his ALS, the presence of those we love is the greatest.

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.


Lanny Kohnhorst avatar

Lanny Kohnhorst

Your column really grabed at my heart, my wife of 59 years diagnosed last February rapidly deteriorating tires so easy when friends stop by, she loves the visits although she cannot any longer speak she still has use of her arms and she writes her thoughts. She loves the visits but they are so tiring and relatives sometime get short with me when I cut a visit short . So hard to face day in day out we deeply love one another, its so hard to watch


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