Why I share with others the details of my late husband’s life with ALS

Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014.

Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living with ALS and have since died from the disease, the challenge involved being doused with a bucket of ice water, uploading the video to the internet, and challenging others to do the same, all in the name of raising awareness and funds for ALS research. That summer, the Ice Bucket Challenge went viral, with more than 17 million people sharing videos online. The challenge has raised more than $115 million since it began 10 years ago.

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Answering the call for advocacy during ALS Awareness Month

Jeff Sarnacki looks on in wonder while floating on the Athabasca River in Canada, in June 2019. (Photo by Juliet Taylor)

I didn’t fully understand ALS when I took the Ice Bucket Challenge. The challenge sounded fun, and I appreciated that it was for a good cause. In fact, I didn’t understand the gravity of ALS at all until my late husband, Jeff, was diagnosed with it in 2018.

As a young girl, I’d seen my friend Erin’s dad and her family live with the disease, and I’d felt sorrow and empathy for my sweet friend. Still, I hadn’t witnessed firsthand the devastation that ALS causes until Jeff was living with it.

I bring this up in today’s column because May is ALS Awareness Month. Each May, ALS organizations run education and awareness campaigns to shed light on what ALS is, why it’s so horrible (it’s currently 100% fatal, but not before wreaking destruction on families before it goes), and most importantly, why it’s so critical to raise money to research treatments and eventual cures.

When Jeff was diagnosed with ALS, we collaborated on many things: his care, his treatments, and preserving, as best we could, his quality of life and dignity. One area where we differed was participating in the ALS community. Jeff, for reasons I understand and respect, did not want to become further involved with ALS. Behind the scenes, he wrote letters advocating for the creation of Lou Gehrig Day in Major League Baseball, but he focused his time living with ALS on other pursuits that brought him joy and satisfaction.

As Jeff’s caregiver, though, I needed to learn. I needed to understand how to help him lead a life that was safe, enriching, and meaningful. For me, the best way to learn these things was through the ALS community. So, a few months after his diagnosis, I began volunteering with a recently created organization called I AM ALS. Founded by Brian Wallach and Sandra Abrevaya, I AM ALS helped me connect with other families living with ALS, and they became quite literally a lifeline on some of our darkest and scariest days.

Through my new friends in this community, I learned the true extent of ALS devastation: the relative lack of treatments, the absence of cures, the unbelievable financial toll the disease can take on individuals and families. I learned the ways that working together as a community can drive change through both small and large acts of education, advocacy, and awareness-building. I learned that there are many people working tirelessly and humbly to end this disease, and that they give freely of their personal time and resources to do so.

The meaning of unwavering determination

From left, Juliet Taylor, Jeff Sarnacki, and Makelle Sarnacki walk their dogs Rudder and Guy on Christmas Day in 2019. (Courtesy of Juliet Taylor)

Five days after his 60th birthday, on May 20, 2020, Jeff died here at home. His passing was peaceful and he was surrounded by family and love. In a few weeks, he will have been physically gone for four years, though I feel his presence and influence every day. He left me with the peaceful life we built together, beautiful memories, and a goofy, happy Labrador to keep me company. He also left me with determination.

I needed a few months after Jeff died to ignore everything ALS. I was sad and angry, and felt ripped off. I didn’t understand why ALS had chosen him, and why, once it did, he didn’t have more time. I hate that he didn’t get to become a grandpa when his granddaughter was born five months after he died. I had, and still have, survivor’s guilt.

It’s for all those reasons that my break from the ALS community was short-lived. Staying involved, volunteering, and taking action alongside other families helps me believe that one day soon, some future grandchild will enjoy a day at the park with their doting grandfather, some wife will enjoy a full life with her husband, some young person will live to be 90 rather than 35.

May is ALS Awareness Month, but for so many of us, ALS awareness is every day. The more we can share about ALS — in big ways or small — with others both in and outside of the community, the closer we get to treatments, cures, and one day, a world without ALS at all.

A Superman coloring sent to Jeff by his great-niece Emma. (Courtesy of Juliet Taylor)

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.