For most of my life, I wore exhaustion like a badge of honor. If I wasn’t busy, I felt behind. I learned early on that to be seen as capable, especially as a Black woman, I had to show strength at all times, no matter how depleted I felt inside.
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…
When I was diagnosed with Huntington’s disease (HD), I thought the hardest part would be the symptoms: the involuntary movements, the mood changes, the balance issues, the unpredictable fatigue. But I learned quickly that the stigma surrounding a rare disease can weigh just as heavily. The stares, the whispers,…
When I stepped off the plane in Boston, I felt a wave of gratitude. Everything about this trip felt first class, from the thoughtful arrangements to the sense that every moment had purpose. I had been invited to speak at Wave Life Sciences, a biotechnology company devoted to advancing…
Walking into the same lecture hall at Case Western Reserve University where I spoke last October felt like déjà vu in the best way. The rows of white-coated medical students, about 200 this time, buzzed with that unmistakable energy of first-year enthusiasm. Their notebooks were open, laptops glowing, faces eager…
October feels like a month that breathes differently. The air turns cooler, the light softens, and the energy shifts from summer’s urgency to something gentler. Trees let go of their leaves without hurry, the days shorten, and a stillness settles in. For me, living with Huntington’s disease, that stillness…
Some days, the world feels too far away, too cold, or simply too heavy to face. With Huntington’s disease, those days come more often than they used to. Sometimes it’s because my balance feels off, and icy sidewalks feel risky. Other times, my movements are unpredictable, and I’m not…
On September 2, the Huntington’s disease community lost one of its brightest lights: Carlos Contreras. Born on May 22, 1976, Carlos’ journey was filled with joy, resilience, and an unwavering commitment to love. His life reminds us that even in the face of a devastating disease, it is…
When the first cool breeze arrives amid the fading hours of daylight, I feel a pull toward home. Fall invites me to create a space that’s not only beautiful but safe, comforting, and easy to move through — a home that feels like a soft blanket at the end of…
Some changes arrive quietly, like leaves shifting one shade at a time until the whole tree glows with color. Friendship has been like that for me: not a single dramatic ending or beginning, but a gradual reshaping. One day, I looked back and realized the landscape of my relationships was…
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