Why I continue to volunteer and stay involved in ALS causes

Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with or has died from ALS.

The flags are beautiful, blowing gently in the breeze near the foot of the Washington Monument. They create an impactful visual tribute to those affected by ALS and help to educate passersby about the magnitude of this disease. Seen individually, the flags are even more impactful, as each bears a name, an age at diagnosis, and other details. My late husband’s flag is there, too: Jeff Sarnacki, diagnosed at 58, died at 60.

The community summit and flag display is an annual beacon for me during a tough month. May is the anniversary of both Jeff’s birth and death. Volunteering at this event has become a meaningful way to observe these dates, honor friends who are living with or who have died from ALS, and connect in person with others in the community, some of whom I’ve met only on Zoom calls or social media.

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A lot of people quite understandably want nothing to do with ALS after their loved one has died, an instinct I understand on a visceral level. ALS is cruel, random, and unfair. This terminal diagnosis can bring despair, anger, and hopelessness. It can progress with ridiculous speed, as it did in Jeff’s case, or it can be slow. Either way, it’s erratic and unpredictable. It’s hard on the person living with ALS, as well as their caregivers and families, who are often one and the same.

For all of these reasons and more, after Jeff died, I didn’t engage with anyone in the ALS community for months. Sad and exhausted after caregiving and then his death, I felt like I had nothing to give, and I needed space to begin healing, both physically and emotionally, from the most profoundly anguishing experience of my life.

After a few months, though, I found myself wishing for “my people.” They’d supported me in the worst of times, and I missed having ongoing connection with them. At the same time, I discovered that I still cared passionately about the issues surrounding ALS: the need for quicker diagnosis, access to clinical trials and ALS care, and caregiving topics. After consideration and with intention, I decided that returning to the community could be a healthy thing, and it was possible that I could help others going through what I had.

Staying involved with I AM ALS was a natural first step. I’d discovered I AM ALS at its inception less than six months after Jeff’s diagnosis, after reading an article about founders Brian Wallach and Sandra Abrevaya. Brian and Jeff had occasionally crossed paths while working years earlier in the White House, and the connection for me was meaningful. I’d originally volunteered — for the first time in my life, at age 50 — as a way to get to know others in the community. I joined an I AM ALS community team, attended a focus group, and helped edit a few documents — modest contributions that helped me feel connected to others who were experiencing the same thing as our family was.

I came back after Jeff’s death with a few principles for myself, the first of which is that it wasn’t about me. I’d give more than I took, understanding that those currently living with ALS and their caregivers and loved ones took precedence. I’d be an open book and wouldn’t sugarcoat anything, including the scary things. I’d answer the phone for strangers the way so many had picked up the phone for me. I don’t have a lot of money to donate, so I’d freely give my time instead.

My decision to remain involved has been a healthy one for me, but it’s completely individual. Over time, my volunteerism has expanded to include other organizations, including Hop On A Cure, Live Like Lou, and Her ALS Story. I stay because I value the connection with individuals, and because I see the collective power and change that people working together can bring, and the difference these organizations make to those living with ALS and their families. And, as is typically the case with volunteering, somehow it’s more rewarding to give than to receive.

During this tough month, I take stock of what ALS took from our family, and whether staying involved can help. As long as the answer is yes, I’ll still be here.

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.