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When my late husband, Jeff, died of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> 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 <a href="https://alsnewstoday.com/living-with-als-2/">experiencing his ALS</a> and the barrage of constant losses, including the future together that we’d hoped for.
I have a vivid memory of seeing a televised <a href="https://www.spacex.com/" rel="nofollow">Space X</a> 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 <a href="https://scienceline.org/2020/05/finding-your-voice/">losing his voice</a> limited his ability to communicate. His happiness in watching, bright-eyed, was palpable.
[recommended-reading id=82413]
<h3>The missing memories</h3>
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&#8217;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 <a href="https://iamals.org/">ALS community</a> because it feels good and right to devote my time and energy to others facing this illness, and because I hope it would&#8217;ve made him proud.
<figure id="attachment_87996" aria-describedby="caption-attachment-87996" style="width: 380px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-87996 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/11/jeff-boat-380x247.jpg" alt="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." width="380" height="247" data-wp-pid="87996" /><figcaption id="caption-attachment-87996" class="wp-caption-text">Jeff Sarnacki, Juliet&#8217;s late husband, enjoys a day on the boat before his ALS diagnosis. (Photo by Juliet Taylor)</figcaption></figure>
So why do slipping memories — forgetting a love of space or passing over &#8220;<a href="https://www.imdb.com/title/tt0898266/?ref_=ttep_ov">The Big Bang Theory</a>,&#8221; 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&#8217;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 &#8220;The Big Bang Theory.&#8221; 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&#8217;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&#8217;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&#8217;ll always live with Jeff’s loss. But I&#8217;ll also forever live with his love and our memories, in whatever form and frequency they visit me.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

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

A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
My teenage <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">daughter</a> and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories from two decades ago. All three of us were living in Milwaukee at the time and belonged to an early career group at the same church. We tried to recall the date of a kayaking trip we had taken.
“I’ll check &#8216;The Dating Report,&#8217;” I said, and went to retrieve it off a shelf in my office.
My daughter and her boyfriend took an interest in the conversation when I came back with a bound book that Todd had made chronicling our romance. We met in January 2002, started dating in April, and got engaged in December. As a Christmas gift, Todd compiled the emails we exchanged that year and included photos from some of our activities. I flipped through it, and there we were in our kayaking gear on June 14, 2002.
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<h3>A split-second decision</h3>
I read excerpts from the report, which reminded us of other stories. Five months after we started dating, Todd told me he loved me. &#8220;Thank you,&#8221; I replied, not yet ready to reciprocate the sentiment. I wasn&#8217;t ready to commit, which required at least a year of dating. Nonetheless, we began talking about getting married the following summer — hypothetically, if things worked out.
A month later, I was at a thrift store and saw a woman looking at a wedding dress. “That’s a Carolina Herrera — a $5,000 dress,” the shopper told her friend before moving on to the next aisle.
I took a look at the designer dress the woman had passed on. It was my size, so I took it to the fitting room and tried it on. It fit, but I was uncertain — not only about the dress, but also about <a href="https://alsnewstoday.com/columns/limits-marriage-being-als-caregiver/">marriage</a>.
When I left the fitting room, the woman approached me. “I was going to take that dress,” she said. Well, that’s not how thrift store shopping works. My competitive nature came out, and I held on to the dress.
“Are you getting married?” the woman asked. I had to give her an answer, so I made a decision on the spot. “I’m getting married next summer,” I declared.
That evening, I met Todd at his condo. “I bought a wedding dress today,” I said. “And I love you.”
Upon hearing the story, my daughter laughed and her boyfriend shook his head.
It’s fun to remember those days, to relive them with Abby, and to share them with our daughter and her boyfriend. Our daughter was only 4 years old when Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a>, so she has few memories before ALS. Her boyfriend has only known Todd since he has been paralyzed, on <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>, and homebound.
At this stage of the disease, our daily life is mundane. It takes a long time to accomplish basic tasks of <a href="https://alsnewstoday.com/living-with-als-2/">daily living</a> such as <a href="https://www.youtube.com/watch?v=Ti23rAGdPR8">toileting</a>, dressing, eating, and showering. The present is difficult. We don’t look forward to a future with disease progression and eventual death. But there is joy in remembering the past.
We reminisced about our engagement story and how Todd had gotten the return date wrong for our honeymoon and we showed up at the airport a day after our plane had left.
At one point, Abby started recording Todd and me with her phone, so now I have 10 minutes of footage of us laughing and telling stories from our early days. It was a time filled with <a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">joy and little sorrow</a>.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Reminiscing about our pre-ALS days brings joy

<a href="https://www.gogreenlake.org/">Green Lake</a>, in northern Michigan, is verdant and peaceful. Evergreen and aspen trees grow right to the water’s edge, and the shores are dotted with summer cottages and a smattering of small docks and boat houses. If I could conceive of the perfect lake, this would be it.
My late husband, Jeff, waxed poetic about Green Lake long before I had the chance to visit there with him, and long before his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> in 2018. Looking for the perfect fishing spot, he and his brothers had discovered this 2,000-acre inland lake by happenstance about 25 years ago, and had subsequently spent several weeks a year fishing here.
Fishing to them was serious business. The brothers would rent a lakefront cottage and drive north from Detroit, pulling a fishing boat, cars laden with fishing gear, simple camp food, and cold beer. They’d get out on the water at first light, fishing until about 2 p.m. After a lunch break, over which they&#8217;d discuss adjustments to their gear, hot spots, and new fishing techniques, they’d head back out until it was almost too dark to see, then do it all again the next day.
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I’m writing this column today from a deck overlooking that same lake, just a few cottages down from the original one that Jeff and his brothers rented. Over time, the intense fishing trips evolved to include wives and girlfriends, and it’s through this that I got to know Green Lake and, more meaningfully, Jeff’s family. As a larger group, we’d spend days on the water, sharing funny stories and listening to music from <a href="https://www.interlochen.org/summer-arts-camp">Interlochen Arts Camp</a>, which is also situated on the lake.
Jeff’s last visit to Green Lake was in June 2019. He had mostly lost his ability to speak and was having trouble walking — a <a href="https://www.youralsguide.com/als-power-wheelchair-guide.html">power chair</a> would come just three months later — so his brothers would hold him up on the pier as they went out to fish together. This trip was not sad — it was filled with funny moments, inside jokes, and togetherness. When I look at pictures from the week, many of which are hanging on my walls, I feel gratitude for him including me as part of this special place and family.
Later that year, we decided to move to a home that would accommodate his medical needs. After looking at dozens of possibilities, we settled on a waterfront cottage simply because it reminded him of here. For Christmas that year, I hand-painted a sign naming the house Green Lake East. In the final days of his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, our family positioned his hospital bed in front of the French doors and opened them wide to the water.
A few months after Jeff died in May 2020, the rest of us traveled back up north. None of us remember much about the week; we were all deep in early grief, and the time together brought us comfort and the chance to reminisce. We didn’t boat that week; instead, we had nightly fires in the fire pit and more quiet time than usual.
We have returned together every year since. It’s my most cherished tradition.
What I love most about being at the lake now is that Jeff is here with us. I don’t mean he’s here in some ghostly way, rather, he’s present with us. He’s part of every story. His absence, which we all feel acutely each day in our own way, is lessened. We remark on what he’d think of a funny scene or story. We prevail on him for fishing luck, and this week, it’s working.
It would be far better if he were here with us physically, just like the old days. But since we don’t have that gift, we choose to recognize the time together that he originally brought to us, and still continues to. In that way, Jeff does and always will continue to live on.
It’s my hope that every family or group of friends with a loved one with ALS has a Green Lake — a place, whether physical or emotional, where they can be together, creating memories now and offering a bridge through which they can access their loved one at any time in the future. ALS may take people from our sight, but it cannot take them from our hearts.
I only get to Green Lake once a year, but I can and do visit my memories of here every day. Knowing that this idyllic, beautiful, and meaningful place exists, and always will, keeps Jeff close for all of us.
<figure id="attachment_85387" aria-describedby="caption-attachment-85387" style="width: 330px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-85387" src="https://alsnewstoday.com/wp-content/uploads/2023/06/green-lake-brothers-dock-1-285x380.jpg" alt="A boat sits at the end of a small dock on a tranquil lake. Three men laden with fishing gear walk onto the dock heading for the boat." width="330" height="440" data-wp-pid="85387" /><figcaption id="caption-attachment-85387" class="wp-caption-text">Juliet&#8217;s late husband, Jeff, middle, is supported by two of his brothers as they leave for a day of fishing on Green Lake, in Interlochen, Michigan, in June 2019. (Photo by Juliet Taylor)</figcaption></figure>
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Finding ways to stay close to those we’ve lost to ALS

While in town the other day, I ran into an old friend. My husband, Todd, and I had gotten to know her and her husband when they first started attending our church. We had invited them over for dinner along with a few other families.
Then we met weekly with them and a small group of other couples, but we eventually left the group after it became too stressful to get Todd out of the house for an evening. He has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and uses a <a href="https://www.youtube.com/watch?v=lCFNl7GXivw">power wheelchair</a>, and it was a hassle to set up ramps to get him into the host’s house, especially in the winter.
“I’ve been thinking about you lately,” my friend said. “How is Todd doing?”
“He’s hanging in there.” I looked down at my phone to see if Todd had responded to my text message asking if he was OK.
Todd had replied, “Pretty much; occasional rattle, but I&#8217;ve so far been able to clear on my own.”
[recommended-reading id=82413]
He was OK, but I felt too hurried and on edge to have much of a conversation. I explained my distracted state: On occasion, <a href="https://alsnewstoday.com/columns/things-change-quickly-with-als/">mucus builds up in Todd’s lungs</a>, and he needs help coughing. We had just gotten through an episode, and Todd thought it was fine for me to leave him to run errands, but I was ready to rush home if he needed my help again.
We talked about getting together, and then, later that week, we made plans for her and her husband to join Todd and me for dinner at our house.
Todd and I used to invite people over for dinner frequently, but for more than a decade, he hasn’t been able to help me clean the house or prep food, and his care takes a lot of time. I haven’t had the energy to host much more than holiday gatherings or dinners with friends and family visiting from out of town. We used to occasionally go out with friends to a restaurant, but now Todd’s neck is weak and he is on noninvasive ventilation nearly 24/7. <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">He doesn’t get out of the house</a> except to go to medical appointments.
We’ve been feeling pretty isolated.
Apart from the physical difficulties, the thought of connecting with our peers sometimes feels daunting. We aren’t planning vacations, seeking career advancement, or dreaming about the future. We are just trying to survive. We do connect with other parents on the joys and <a href="https://alsnewstoday.com/columns/parenting-children-rare-diseases-family-support/">challenges of raising children</a>, but much of what Todd and I have to share is looking in the rearview mirror.
A few friends who’ve made an effort to come and see us know that Todd is homebound and I have a lot on my plate, and so we keep it simple. If we have lunch or dinner, we often get takeout.
For this dinner with our old friends, I made split pea soup, and our friends brought bread. Our evening was filled with enjoyable conversation. We talked about our kids, our travels, and how we met our spouses. We pulled some of <a href="https://alsnewstoday.com/columns/shared-history-memories-strengthens-relationship/">our happy memories</a> from the past into the present.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: memories

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

Reminiscing about our pre-ALS days brings joy

Finding ways to stay close to those we’ve lost to ALS

Pulling happy memories into the present moment