How I’m judging myself when I don’t remember moments

When my late husband, Jeff, died of ALS in May 2020, I was awash in grief and lived in a world completely inhabited by memories. I obsessed over our every detail of our lives, large and small.

Some thoughts were comforting and reminded me of our happy life together: the relative peace of our days, our inside jokes, the sweet routines with which we lived. Other memories were traumatic: reliving the anguish we felt in experiencing his ALS and the barrage of constant losses, including the future together that we’d hoped for.

I have a vivid memory of seeing a televised Space X launch shortly after Jeff died. The broadcast brought me to tears, as he’d loved following these flights, sharing his excitement in text messages with his adult son. It seemed incongruous to me at the time, this quiet, reserved man so ebullient over space.

The launches brought him particular joy during his time living with ALS, when losing his voice limited his ability to communicate. His happiness in watching, bright-eyed, was palpable.

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Last week, I thought about his love of space for the first time in many months and wondered, what is wrong with me? How could that simple but important memory have become distant? What did it mean that I hadn’t thought recently about Jeff’s late-in-life passion? I felt guilt on top of loss.

Much of my life remains centered on Jeff’s memory. I live in a house he chose for its proximity to water, a house where I cared for him and where he stayed until the moment he died, in the very room where I’m writing this column as I look out on the peaceful creek behind me. I cherish the pets he had the foresight to help me choose during his illness, surely a gift to help me heal and bring me love and joy after his death. I stay active in the ALS community because it feels good and right to devote my time and energy to others facing this illness, and because I hope it would’ve made him proud.

Jeff Sarnacki, Juliet’s late husband, enjoys a day on the boat before his ALS diagnosis. (Photo by Juliet Taylor)

So why do slipping memories — forgetting a love of space or passing over “The Big Bang Theory,” his favorite show, as I scroll through TV channels — feel so bad? I think it’s because so much of grief is messy and vague. Holding on to these things feels tangible and grounding — proof that he lived, that his life shaped my life and continues to. Forgetting them, even fleetingly, feels like a betrayal.

Then this week, I went to Target with a young friend. We went simply to spend time together, with no agenda or shopping list. As we ambled through the electronics aisle and rounded the corner, I spotted rows of Christmas trees, lights, and decorations, the first time I’ve seen them this year.

I could feel my face light up, flooded by happy memories of how much Jeff loved Christmas and how he went out of the way to make it special for his kids, for me, and for the rest of his family. He was childlike in his love of the holidays, and each year since his death, Christmas has greater meaning to me because his presence and memory are everywhere.

Later, my mind couldn’t escape the parallels, and the lesson in them. I’d been sad to momentarily forget about Jeff’s love of space, yet jubilant to be reminded of his passion for Christmas and how it’ll help shape my own holiday season this year. I realized then that these jolts of memory, whether faint or intense, whether frequent or sporadic, have no bearing on how, and how well, I love and honor Jeff. He’s interwoven in my daily life. Our relationship changed every aspect of me; my sister likes to say it rearranged my DNA, and I agree with her.

Hopefully, the way I live, the way I move forward carrying his memory, honors him, whether or not I watch Space X launches or “The Big Bang Theory.” His memory is present in my devotion to feeding the birds, to being on the water, to building a relationship with his now 3-year-old granddaughter, whom he didn’t live to meet and whom I have the joy of loving on his behalf.

The word “journey” when used with illness is controversial, because so many of us connote journey with something positive. But ALS, I’ve decided, is indeed a journey, as is living with loss because of it. There will never be a point in this lifetime where I’ve arrived cleanly and safely at grief’s (nonexistent) destination. I’ll always live with Jeff’s loss. But I’ll also forever live with his love and our memories, in whatever form and frequency they visit me.

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