Honoring loved ones lost to Huntington’s disease

As the holidays draw near, I find myself glancing at the table and noticing what’s missing: There’s an empty seat where a loved one once sat.

Grief takes on a unique shape in the Huntington’s disease community. It’s not just about death; it’s about watching pieces of someone you love slowly slip away, long before they leave this world. We grieve the sparkle in their eyes that dimmed too soon, the laughter that became less frequent, the conversations that grew shorter as the disease advanced. And yet, even in that slow fading, we carry forward their essence, their humor, their resilience, and their fierce will to keep going despite what life took from them.

When I think of those we’ve lost to Huntington’s, I don’t just remember the final chapters of their stories. I picture them in motion, dancing in the kitchen, telling bad jokes, or cheering for their favorite team. I remember the warmth of their hands, the cadence of their voices, and the way they made ordinary days feel extraordinary.

Sometimes, I light a candle in their honor. But more often, I just talk about them. I say their names out loud. I share their quirks, their sayings, their lessons. Because to speak their names is to remind the world that they existed, and still do, through us.

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For anyone grieving this season, I want to gently say this: It’s OK to feel everything all at once. Joy and sadness can coexist. Gratitude and grief can sit side by side, or hold hands across the table. You can laugh through tears, or stay silent while everyone else sings. There is no right way to carry loss.

In the Huntington’s community, our shared stories create light where darkness tries to settle. When one of us remembers, all of us remember. At support group meetings, in online spaces, or even through columns like this, we weave a collective tapestry of remembrance, each thread representing a life that mattered.

There’s beauty in knowing that even after someone is gone, their story continues to ripple outward. The way they faced each day with courage inspires us to keep going. The way they loved, even through pain, teaches us how to love better. Their lives remind us that we are part of something larger, an unspoken legacy of resilience, compassion, and hope.

For those of us who’ve lost family members to the disease, there’s another kind of family that forms, the one we build within this community. These are the people who understand without needing an explanation. They’re the ones who reach out on the hard anniversaries, who send you a text when you post a memory, who say, “I get it.”

We share our grief, but we also share laughter, advocacy, and a sense of purpose. The Huntington’s community has taught me that healing doesn’t mean forgetting; it means transforming pain into something that connects us.

At events and conferences, I’ve met people who carry their loved ones’ legacies like torches while advocating for research, raising awareness, or simply being present for others navigating the same path. Each story I hear reminds me that while the disease may claim lives, it can never erase the love that shaped them.

There are countless ways to honor the memory of loved ones lost to Huntington’s. Some people donate to research or volunteer for organizations working toward a cure. Others create art, write poems, or start foundations in their loved one’s name. Even small gestures, like lighting a candle, wearing their favorite color, or visiting a place they loved, can become sacred acts of remembrance.

For me, writing has become a way to honor those who came before me. Every word I share is a tribute to the voices that can no longer speak. I write to give shape to the grief that so many of us hold quietly. I write to remind others that our loved ones’ stories don’t end; they evolve within us, carried forward with every breath, every act of kindness, and every moment of courage.

The holidays will never be the same, but maybe they’re not supposed to be. Maybe they’re meant to be a time of reflection, an opportunity to blend sorrow with gratitude, and to remember that the people we miss most are the ones who taught us how to love deeply in the first place.

To those carrying loss this season, may you find comfort in knowing that you’re not alone. The Huntington’s community holds you close. Your grief is seen, your love is remembered, and your light, like theirs, continues to shine.

As we move through this season together, let’s honor the empty seats not with silence, but with stories. Let’s fill the space with laughter, love, and remembrance.

Note: Huntington’s Disease News 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.