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

My memories visit on their own schedule, but the love never leaves

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by Juliet Taylor |

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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.

A middle-age man clasps his hands behind his head while leaning against a boat, with a blurry background showing sky, greenery, and water. He has sunglasses moved back atop his bald head and wears a white football jersey showing the number 16 in navy blue with a yellow outline.

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.

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.


Jean McElwee avatar

Jean McElwee

My brother was diagnosed with ALS a week ago after so many tests. I feared this was going to be the outcome but waited for the doctors to finally figure it out. Somehow I just knew because he had all the symptoms. We are still gutted about it and feel frozen in time. He is almost 75 and his wife is in a wheelchair because of her disability so his daughter will be overwhelmed with taking care of the both of them while trying to run her full time business. I just don’t know what to expect and am so heartbroken.


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