A graceful reply to an inquiry about symptoms of Huntington’s disease
Children have no filter, so sometimes their questions can be awkward
My wife, Jill, who is gene-positive for Huntington’s disease, and I were recently standing in line at a grocery store when she had an exchange with strangers that reminded us of how powerful words are. It instantly reminded Jill of a hurtful question she overheard several years ago.
In that situation, Jill had also been standing in line at a grocery store, and a young girl behind her asked her mom, “Why is that woman so fat?”
That comment changed Jill’s life. As innocent as it was, the question made Jill worry about her weight from that moment on. She’d never shared this tale with anyone until she told me, but every time she thought about eating something unhealthy, the child’s voice replayed in her head.
When she told me about it, I could tell how much the young girl’s words had hurt Jill. And in a second, I watched Jill relive the experience, but with different words and a very different reaction.
“Why does that woman move so weird, Mom?” a child behind us in line asked. He had seen Jill’s chorea, or abnormal involuntary movement, and the muscle spasms in her arms and head. These symptoms are typical of Huntington’s disease. The mother shushed her son and apologized.
When this episode happened, I felt like someone had punched me in the ribs and sucked the air out of my lungs. I couldn’t compose myself quickly enough, but Jill was gracious. Smiling, she said it was OK and that she was just dancing to music in her head.
When we were outside, I hugged Jill and said I was impressed by how well she’d handled the exchange. She explained that she’d heard similar questions from children about her late father, who also had Huntington’s. These inquiries never seemed to bother him, but they did bother her, so she’d defuse the situation by saying that her father was dancing to music in his head.
“It just made me miss my dad,” Jill told me. “I don’t care what the kid said. It just made me flash back to the day I came up with that answer. I remember laughing about it with him. It made me miss how well he handled all of his issues with Huntington’s.”
Jill’s dad, who died in 2011, never complained that he had a terrible rare disease.
“I learned how to navigate Huntington’s by watching him,” Jill said. “The best thing he showed me was that it’s OK not to worry about what others think. And it’s OK to dance in public.”
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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Comments
Liz Cato
Thank you for sharing <3
Carlos Briceño
Thank you for reading!
Mary Jorgensen
Thank you for a great idea on how to share my sister’s HD dance.
Carlos Briceño
Thank you for reading the column and sharing your story. I hope it is able to give you both a good laugh instead of a good cry.
Lauren Holder
This brought me to tears. What a lovely response from Jill! And what a bittersweet memory with her dad. Sending lots of love to you both! PS - Tell Jill my dad's saying was "WOOOOSSSAAAAHHHH". After being diagnosed with HD, when he would get agitated, he would say that. My aunt (dad's sister) and I started using it, too. I can still hear him saying it to me when I start to lose my cool. :)
Carlos Briceño
I appreciate your kind words, and thank you sharing a little bit about what you have faced. It's amazing how just one small thing can make such a large impact on our lives.
I will admit that this column was difficult for Jill. She was embarrassed by what happened both times and tried hard to not let that define her. In the end, she decided to share in hopes it helps others. We also agreeded that we would be completly open and honest about the struggles we face when we started writing. Good or Bad.