Finding light in the darkness of Huntington’s disease
Our family faces immense challenges, but we do so together
The weight of my family’s history often feels like a shadow I can’t outrun. My mother battled bipolar disorder while my father fought his demons with alcohol. I lost both of my sisters far too young, and now my beloved wife, Jill, and our daughter, Alexus, are gene-positive for Huntington’s disease — a cruel inheritance that promises future suffering for them.
But sometimes life has a way of shifting your perspective when you least expect it.
During a recent evening, while Jill moved about the house with her usual energy, I checked the news on my phone and a People headline caught my eye: “Middle Schooler’s Headaches ‘Passed Off as a Virus’ Until His Mom Demanded a CT Scan: ‘Worst Possible Result.'”
The story gripped me immediately — a young boy fighting for his life against a brain tumor that doctors had initially dismissed as a virus or blood pressure issue, the family said. It was only because of his mother’s persistence in demanding a CT scan that the devastating truth was revealed.
As I read, feeling the weight of this family’s struggle, Jill walked in and noticed my expression. It was like I’d gone 10 rounds with a gorilla, as she’d say.
When she asked what was wrong, I shared the story with her. Without a word, she sat beside me and took my hand. Then, in a gesture that always touches my heart, she rested her head on my shoulder — no small feat given that she’s 3 inches taller than me and has to crane her neck to manage it.
As I continued reading, the story grew even more heartbreaking. This family had already endured the unthinkable. They’d lost their 17-year-old daughter in a car accident the previous year, and they’d lost another son to COVID-19 in 2020. The magnitude of their loss left me breathless.
Yet there was Jill, her head still resting on my shoulder, her presence a calming anchor amid the storm of my emotions. In that moment, I felt a profound gratitude wash over me. Despite our own trials — the specter of Huntington’s, the loss of my sisters, my mother’s mental health issues — we have each other. Jill has been my foundation through countless dark days, her strength and empathy lighting the way forward when I thought I couldn’t take another step.
We’ve learned, through all our struggles, that while we can’t choose the challenges life presents, we can choose how we face them. We can surrender to despair, or we can find strength in each other and meaning in the midst of pain. With Jill’s head on my shoulder and her hand in mine, I was reminded that even in our darkest moments, we’re never truly alone.
Looking back at my phone, I said a silent prayer for that family while holding Jill’s hand a little tighter. Their story reminded me that even on our hardest days, there’s always light to be found. Sometimes it’s as simple as the comfort of a loved one’s presence, the quiet understanding in their touch, and the courage to keep moving forward together, one day at a time.
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.
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diane
I always love your posts, Carlos. thanks for sharing your family's journey with us.