How being stubborn helps my wife battle Huntington’s disease

My wife, Jill, has always been stubborn, to put it lightly. She won’t admit that something is too hard for her. Ever. “No, I got it” is her favorite saying. But since she was diagnosed with Huntington’s disease in 2018, I haven’t been sure if stubbornness is a part of her illness or just Jill being Jill.

Either way, that stubbornness upsets me because I want to do things for her. I want to take care of her and make her life easier.

I was raised to be polite and helpful, such as by opening doors for others or giving up my seat on the subway to someone who needs it more than I do. Meanwhile, Jill is the epitome of the following quote from a cartoon by Bob Thaves: “Sure [Fred Astaire] was great, but don’t forget that Ginger Rogers did everything he did … backwards and in high heels.” I have never seen Jill quit or give up on anything she’s capable of doing.

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Although I have faith that my wife can do anything, I often remind her she doesn’t have to do everything. I get frustrated when she declines my help, saying she’s able to do the task herself. I know she’s capable, but as her husband, I want to help.

However, Jill reminds me that what I refer to as her stubbornness is actually her way of maintaining her independence for as long as she can. She’s not hardheaded for wanting to strengthen her mind and body so that she can fight future Huntington’s symptoms.

Lessons in offering help

I began to understand this when Jill told me last month that a group of landscapers had offered to cut our grass — for free.

Our home has a large lawn with trees that drop branches and leaves everywhere. Taking care of it is a big job, but when we moved in, we decided we’d work on it together.

I bought a reel mower, which is powered by the person pushing it instead of using fuel, electricity, or oil. I thought it would give me the opportunity to “exercise” while mowing the lawn. It was a good idea at the time, but I quickly discovered that my demanding job rarely left me enough energy to do yard work on the weekends.

Jill decided she would take over cutting the grass and use lawn care as her own “forced exercise.” She promised to do only what Huntington’s would permit her to do.

The landscapers were working on a neighbor’s yard when they noticed Jill battling the heat and struggling to push the mower, partly due to some involuntary movements caused by her disease. Feeling sorry for her, they offered to mow the lawn with their riding mowers. Jill was touched, but explained why she wanted to mow the lawn herself. She was so grateful for their gesture that she told them to stop by the following week for some of her famous homemade brownies.

Even though Jill didn’t accept their help, she was still happy they had offered.

“When I do that, you get angry with me,” I said. “What’s the difference?”

Jill’s sigh was soft, but her words were clear. “They offered to help me,” she said. “They didn’t tell me I couldn’t do it myself.”

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.