Empathy gets a boost when living with a Huntington’s disease gene
Acts of kindness come naturally to those who understand others' pain
As the recent heat wave baked our city and much of the country, my family found itself reflecting on simple acts of kindness. Specifically, we focused on how important these things are to me and my wife, Jill, and our daughter, Alexus, both of whom are gene-positive for Huntington’s disease. The reason why is simple: The physical and mental deterioration that’s part of the devastating nature of Huntington’s makes us deeply understand other people’s pain.
Our reflections on the subject of kindness started with a call from Alexus. She’d arranged for some outdoor work at her home, and as the crew arrived, she made sure they had cold water.
“Is that weird?” she asked. “I always do it, but people seem surprised.”
Jill and I both laughed, knowing exactly what she meant.
It runs in the family
Just the other week, I had handed out bottles of water to a group of men working to replace an organ in the choir loft of the church I work for.
The men had insulated water bottles, but the only access they had to water was a small sink in a nearby bathroom, which was not deep enough to position a water bottle directly underneath to fill it to its brim.
Because this project was going to take place over several days — when the temperatures hovered between 95 and 100 degrees — I felt for them, especially because of the difficulty they had in refilling their water bottles. So later that day, I returned with a 24-pack of bottled water that we had in our office.
When I told Jill this story, she smiled and shared her own. Recently, she was home waiting for a delivery, and before the crew even started unloading the truck, she offered them cold water bottles she’d put in the fridge that morning.
The delivery crew members were surprised by the gesture — and extremely grateful.
Jill and I agreed: Whenever we do these little things, people are usually taken aback.
‘That’s just how I was raised’
In her phone call to us, Alexus admitted, “I don’t really think about it. That’s just how I was raised. Everyone around me did small acts of kindness and cared about others. It’s what I know. But why isn’t it the norm?”
After the call, Jill and I kept talking. She told me that’s how she was raised, too — her parents were social workers who showed her that caring for others wasn’t something you “could” or “should” do. It was simply what you do and then becomes who you are.
No matter what’s going on in your life, others matter.
Even though these small gestures are part of who we are, Jill wondered if living with Huntington’s in our family has heightened our awareness of others’ suffering. Maybe it’s made us more attuned to the little ways we can help others.
Jill wishes for a day when her disease isn’t a worry for us, but she also hopes others will notice those who need a metaphorical “cold glass of water” — not just in a heat wave, but every day.
Sometimes, the smallest gestures — a helping hand or words of encouragement, for instance — are what make the world a little less harsh, a little more bearable. If we all looked out for each other, especially when things get tough, especially in families who have gene-positive members, maybe kindness wouldn’t seem so surprising.
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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