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The Reward of Presence Introduced That means and Like to Life With ALS

I bear in mind the occasions earlier than ALS, when after a day away from the home at work or working errands, I might drive house in anticipation of seeing my late husband Jeff’s blue pickup truck within the driveway. Jeff and I might usually arrive house at about the identical time every day, and my coronary heart would leap a bit after I’d see that he’d already arrived and we may begin our night collectively.

Most nights, we did not have particular plans, we would simply watch TV and revel in one another’s firm. Jeff was an excellent prepare dinner and he would possibly grill a steak for himself and a chunk of salmon for me, or we’d order a pizza and calm down on the sofa with the canine. Jeff’s grownup children would possibly cease by, at all times a welcome deal with. We might spend a number of hours of quiet time collectively in one another’s firm, usually saying little or no. Jeff would possibly make us smoothies, and we’d discuss a home mission we wished to deal with that weekend.

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

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Whereas Jeff and I prioritized enjoyable throughout our relationship — journeys to out-of-the-way seashores, epic rock live shows, and dinners out in our favourite cities — I notice now that it is the quiet occasions spent stress-free collectively that introduced us nearer as a pair. I got here to know and outline this time of peace and contentment as presence. It is exceptional how a lot sitting collectively in silence and understanding can construct relationships, whether or not romantic or in any other case.

Jeff’s ALS prognosis in 2018 modified how we skilled presence. As his bodily weak point progressed and he required extra help, our time collectively, whereas nonetheless joyful, grew to become busier. Steaks on the grill gave method to system meals via a feeding tube, and home tasks had been changed by buying and studying to make use of the medical tools that comes together with dwelling with ALS.

After Jeff’s prognosis, we spent extra time in one another’s bodily presence than ever earlier than, but our moments of quiet, emotional presence had been fewer—a perform of nothing greater than the relentlessness of ALS and the busy, fixed necessities of caregiving. When Jeff was capable of get snug and sleep, whether or not in his recliner, energy wheelchair, or mattress, I used to be hesitant to wake him. I wished him to have the ability to relaxation.

Proper round this time, our family members, in some way intuitively, started gifting us with their very own presence.

A touching facet of our life with ALS was the individuals who confirmed up for us. We had an abundance of family and friends who introduced groceries, helped within the yard, hung Christmas lights, and moved us into a brand new house with sheer manpower. Throughout the early days of COVID-19, these family members staged a drive-by birthday parade, with costumes and indicators for Jeff. We each knew how lucky we had been to be surrounded by love and assist. We’d not have made it with out this kindness and assist from family and friends.

Equally priceless, although, had been those who got here to easily supply their presence.

We cherished those that constantly introduced Jeff the present of quiet companionship that we might been lacking. Jeff was a reserved individual, deeply loyal, and when he made a buddy, it was normally a buddy for all times. Throughout his time with ALS, his highest pals of his, and mine, appeared to instinctively perceive that displaying as much as simply sit and be with Jeff introduced deeply wanted normalcy, a reminder of who he nonetheless was. They’d arrive with a cigar for him, or new music to listen to, or some information to share about their children.

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 pals on the porch of his house in the summertime of 2019. (Photograph by Juliet Taylor)

The easy presence of those household and pals helped Jeff really feel regular. They had been individuals who may hear his voice from him though he may not converse. They understood he was the identical individual he’d at all times been. They weren’t afraid of his altering physique and bodily capabilities of him.

I like to consider all the individuals who confirmed up for us as those that ran towards worry fairly than away from it. ALS is a scary illness, and it may be onerous to see these we love experiencing its ravages, each bodily and emotionally. But it is throughout these occasions that we’d like them essentially the most.

To be clear, these guests would possibly put away the dishes for us, or definitely not make extra. The bodily calls for of ALS and caregiving make assist welcome and obligatory. However for us, presence introduced love and which means, too.

As we start this vacation season, I replicate on essentially the most significant presents I plan on giving, and the most effective presents I’ve ever been given. No doubt, as I take into consideration our time dwelling along with his ALS of him, the presence of these we love is the best.


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