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My late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> in July and his illness was confirmed in October, backed by a second opinion in November. Because there&#8217;s no definitive test for ALS, for many living with the disease, a diagnosis can take a year or more.
Heading into the holidays that year, we felt many things, none of them festive. We were shocked, reeling, and devastated. We were not yet at the point where we’d developed the resolve with which Jeff, and therefore I, approached his ALS fight. That would come, but in those early weeks, we were bereft and, even together, feeling alone.
We were also living about 500 miles away from most of Jeff’s large family, the Sarnackis; they were in Michigan, and we’d recently moved back to Maryland. We’d kept his family apprised of his concerning <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> and all the things they could possibly mean, but that process was enveloped in sadness after the second opinion at <a href="https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/als-specialty-care">Johns Hopkins</a>. Once his illness was confirmed, I remember that telling his family this devastating news — especially his adult daughter and son — was the thing he dreaded most.
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<h3>Ready for some joy</h3>
Jeff was one of seven children, born exactly in the middle, a fact that he laughingly said made him the most well-adjusted of the bunch. As adults, everyone was pretty close, sharing holidays and gatherings as geography and growing families would allow. I can’t remember if we’d already decided to go to Michigan that Thanksgiving or not; we’d been so preoccupied. But I do remember the elation with which we headed to see his family that year. We were ready for some joy.
On the journey out, Jeff was more quiet than usual. We’d both been lost in our own thoughts for weeks, and his ALS diagnosis instantly and completely reframed our world and seemingly everything in it. I knew intuitively that reassuring his family and sharing with them the blueprint for how he wanted to approach life going forward was important.
Jeff’s sister Janet hosted Thanksgiving dinner that year, and there were at least two dozen of us gathered, from Jeff’s dad, who was in his 90s, to our youngest great-niece, who was 2. It’s a family tradition to hold hands and pray together before the Thanksgiving meal, and after we did this while standing in a loose circle around Janet’s kitchen, Jeff asked for some time to speak. He acknowledged the difficult diagnosis, which by then he’d shared individually with his loved ones, and then doubled down on his intention to live.
By live, Jeff didn’t mean he was going to physically survive ALS, although that was our fervent hope. What he meant was that for as long as he could, and for as well as he could, he was going to live his life, and he wanted us all to join him. Jeff didn’t want pity or to be handled with kid gloves. He didn’t want to be protected. What he wanted was to experience life fully and joyfully and with abandon. He wanted to embrace each day and for us to do it with him.
I’ll forever remember that scene as one of the defining moments in our nearly two-year experience with ALS. Many memories from those years are seared in my mind; some are traumatic, some are beautiful. That moment in Janet’s kitchen will stay with me forever as a moving moment of courage and grace, two attributes Jeff displayed in abundance during our family’s journey with ALS.
The rest of the evening was joyful. We enjoyed dinner together, told stories, and exchanged barbs on college sports rivalries (the most intense in our family being <a href="https://mgoblue.com/sports/football" rel="nofollow">Michigan vs. Ohio State</a>). Jeff’s niece had made blue bracelets emblazoned with “Sarnacki Strong,” and we all donned one in solidarity. Many of us never took them off again during Jeff’s fight with ALS. The evening set the tone for how his family showed up for us, and for one another, during what could have been the darkest days of his life.
Jeff’s ALS progression was faster than average, and he died at home in May 2020, surrounded by family. But for the life in between, there was laughter, time together, and gratitude.
It’s hard to find anything to be grateful for about ALS. It’s an insidious, cruel disease that robs individuals of their autonomy and cuts short cherished time. But in our case, it could not change the important things: love, commitment, laughter, and family. The first time I truly understood that was during that early Thanksgiving of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
This holiday season, my fourth without him, I&#8217;m honoring Jeff with thanks and gratitude for the love and lessons he left 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, 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.

Amid the loss caused by ALS were important lessons on how to live

Being told I had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> felt as if a rug had suddenly been pulled out from under me. My world changed all at once, with no possibility of turning it back.
That happened in 2010, and it was certainly a major curveball in my life. But I’ve been living with curveballs for a long time now. Each one offers a similar lesson: I can’t control everything around me. The first such lesson I remember was hiding in an empty paper bag when I was 11 years old.
A few days before Halloween, the kids on my elementary school playground were buzzing with excitement. We were having intense debates about the best costume to wear; dressing as a hobo won the popular vote. We also tried to guess who would win bragging rights for having collected the most candy while trick-or-treating.
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<h3>Pursuing candy dressed as a hobo</h3>
The big night finally arrived. At dusk, I met up with my best friend, who lived nearby, and then we joined her older siblings to trick-or-treat down the sidewalk. Our comical gang of hobos rang the doorbells to the houses on our side of the street, then the opposite side, and even ventured to the unfamiliar block of houses beyond our street.
All the while we laughed, guessed who was giving out the best goodies, and marveled at the increasing weight of our trick-or-treat bags. Mine was a recycled brown paper bag from a grocery store, the kind with two thin paper handles. I remember how the handles dug into my fingers at stops as the bag grew heavier and heavier.
Several hours later, filled with high spirits, we shuffled home, gathering at my friend’s front door to examine our booty. I heard oohs and aahs from the others, but when I opened my bag, I couldn’t believe my eyes. I was staring through a large hole in the bottom. All I could see was the doormat below — not the Halloween candy I was expecting.
I suddenly realized that during the evening, the weight of my bag — plus my short stature — caused it to drag on the ground. Since I was also trekking through damp grass, it all caused a hole that allowed my bag&#8217;s contents to dribble out along our route.
The shock and disappointment of this loss put a pit in the bottom of my stomach.
My brain swirled with thoughts of “That’s not fair!” But turning to look at the dark sidewalk behind us, I knew I couldn’t retrace my steps, replace the lost treats, or wind back the clock. The moment was gone.
<h3>Stay and play the game of life</h3>
That’s the thing about curveballs. They teach us the lessons that life happens and we can’t always be in control. As I wrote in my column “<a href="https://alsnewstoday.com/columns/als-game-board-life-change-adaptability-diagnosis-challenge-new-perspective/">The ALS Game Board of Life</a>,” we can’t stomp away in anger. We have to move on, making the best of our changed circumstances and new perspectives.
Like that disappointing Halloween, ALS teaches us lessons.
Let’s all continue to transition through life’s changes and curveballs with ease and help each other live well while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</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, <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: life lessons

Amid the loss caused by ALS were important lessons on how to live

A childhood curveball at Halloween guides me in living with ALS