Huntington’s progression has made travel difficult for my wife
The joy of visiting family has been hampered by fatigue
My wife, Jill, comes from a big family. She likes to joke that if she threw a dart at a map, someone from her family would live there. She loves to visit them, but lately, there’s been a cost for doing so.
I always appreciate her family because my two sisters and parents have all passed away. One reason I fell in love with Jill was her love of family. As I met each of them, I instantly felt like I belonged. I’m touched by their ability to make me feel like I matter.
After Jill was diagnosed with Huntington’s disease (HD) in 2018, I knew we needed to live closer to them. At the time, we were living outside of Chicago, but most of her immediate family lived on the East Coast.
I was blessed to find a job in Virginia in 2021, so we moved to Maryland. We’re happy to have more opportunities to see Jill’s mother, brother, and cousins in Pennsylvania, and our daughter, Alexus, and Jill’s other brother in Boston.
Travel is now exhausting
Sadly, Jill’s recent travels have not gone well for her. The last two trips to Boston were with her mom, Edwina, as I was unable to go because of work. Each time Jill came back, the usual energy boost she gets from seeing family had changed. Instead, she felt drained. After her last trip earlier this year, she slept nonstop for two days.
It was so unlike her that I asked if she was getting sick. She paused and tilted her head to the side. That always means Huntington’s has affected another part of our lives. She said she wasn’t sick; she was exhausted.
“Everything may take more effort as my HD gets worse,” she said.
My first reaction was to protect her, so I told her that if trips make her tired, perhaps she should take less of them. She stopped me from saying anything else and made me promise to continue making plans to do things that make us happy, including visiting family. She said HD may make her apathetic, which is one of this terrible disease’s symptoms, but she still wants to do as much as she can.
“If I stop doing things because they are hard for me or they make me tired, I will stop doing everything,” she said. “I don’t ever want to stop doing things I love because that means HD has caused me to stop living.”
If you know Jill a little, you’ll realize that she never wants to stop enjoying life and living it to the fullest.
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