Why last week was special in the ALS community

I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or think about a current challenge in life. In some cases, they’ve served as mantras — easy to recall, and empowering to think about when I need to draw on inner strength.

Before my late husband, Jeff, was diagnosed with ALS, I had a framed quote in my kitchen that read, “Do one thing every day that scares you.” Facing fears made me feel strong, vigorous, and healthy until Jeff’s diagnosis, when I discovered that strength is internal, and emotional health can be just as important as physical health — if not more. I retired that quote and haven’t displayed it since.

After Jeff died in May 2020, my first instinct was to put as much distance between me and ALS as possible. ALS wasn’t Jeff; it didn’t define him, and I didn’t want this cruel disease to define the memories of our life together. What I quickly realized was that I missed the ALS community that had so fiercely supported us, our hopes, and our quest for treatments and cures. And so, I returned.

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Today, my favorite mantra is one you’ve likely seen or heard before: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” This quote by the late American anthropologist Margaret Mead inspires and drives many of us in the tightknit ALS community.

While some might view us as relatively few compared with other disease communities, we are mighty. The ALS community comes together to celebrate wins like the passage of new legislation and approval of drugs, share sorrows when we lose a member of our group, support those newly diagnosed and their families, and provide love and support however we best can.

There are many worthy ALS organizations with which to align; I volunteer with I Am ALS, a grassroots advocacy organization. Due to our geographic distance from one another and the challenges of travel with ALS, most of our encounters take place virtually, via video call. I Am ALS has, among others, teams for veterans, legislative affairs, community outreach, and even a writers’ group, and we meet weekly via Zoom. Occasionally, though, we’re able to connect in person.

Last week was one such week.

A rare and special gathering

For several days, many members of the ALS community gathered on the National Mall in Washington, D.C., for advocacy, awareness, and fellowship. Volunteers planted 6,000 small blue flags on a grassy spot of land in the shadow of the Washington Monument. There, we held a rally featuring numerous speakers, mostly friends and loved ones living with ALS, their families, and caregivers.

Six thousand flags on the National Mall in Washington, D.C., represent people diagnosed with ALS each year. (Photo by Juliet Taylor)

Each talk was moving. Speakers shared their hopes, their tears and laughter and resolve, their feelings about our collective progress in seeking treatments and cures, and what greater access to new drugs and trials has meant to them. And to be sure, we reaffirmed that we have much more work to do, and much more progress to make. In fact, immediately following the rally, most attendees headed directly to Congress, where they’d set up meetings with legislators.

Amid the blue flags, there was so much hugging and genuine joy at seeing one another. There were selfies and inside jokes about feather boas and grammar. There were impromptu social gatherings and celebrations. There also were quiet, somber walks through the thousands of blue flags, each one representing someone loved who is living with, or has passed from, ALS.

Perhaps most hopeful of all, new connections were made. New connections can invigorate us and help us to help others.

I find this is how the ALS community works. We make a single phone call, or hug, or email, or social media outreach, and before long, we’re surrounded and buoyed by compassion, understanding, and support. As someone who hadn’t previously been involved in volunteerism and advocacy, I am each day deeply moved by my friends in what we call “ALS Land.” We agree that none of us asked or wanted to be in this club, yet the love we’ve found here is sustaining and irreplaceable. Last week on the National Mall, that love was on full display.

If you or a loved one are living with ALS and would like greater support and community, please reach out to any ALS organization until you find one that feels like home. We are here to welcome you, and we hope to see you in Washington, D.C., next May.

Friends in the ALS community meet for lunch during a day of advocacy. (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.