Despite Huntington’s, my wife remains fiercely independent

My wife, Jill, has always been a force of nature when it comes to home projects. From assembling furniture to organizing or fixing appliances, Jill has been unstoppable.

I’ve lost count of the times I’ve gone to bed with an unopened box in the living room, only to wake up to a fully assembled item and a completely rearranged space. I’ve often joked that she could probably build an entire house if given the right tools and enough caffeine. She’s always attacked projects with an energy that’s both fierce and admirable, but recently, I wondered if that was flagging.

I awoke to find a half-assembled shoe rack on the living room floor. I was concerned, mainly because Jill was asleep. For a moment, I thought I was dreaming. Jill asleep before a project was finished? Impossible.

Was Huntington’s disease stealing another piece of her? The thought that she might be losing her ability to complete projects was like imagining American gymnastic Simone Biles being unable to complete a simple cartwheel. We’ve been living with Jill’s diagnosis for a while now, but these small, unexpected moments really drive home the reality of our situation.

Recommended Reading

July 30, 2024 News by Patricia Inácio, PhD

GFAP may be Huntington’s disease progression biomarker: Study

I stood there staring at the unfinished shoe rack, my mind racing through all the possibilities. Had she become frustrated with the instructions? Did she forget what she was doing halfway through? The questions swirled in my head, each one more concerning than the last.

Later, when Jill awoke, I broached the subject carefully, trying to mask the worry in my voice. I didn’t want to upset her or make her feel self-conscious, but I needed to know what had happened. Her response flooded me with relief. The shoe rack was missing a part, and she was waiting for a replacement.

She hadn’t given up; she had simply paused. The wave of relief that washed over me was almost dizzying.

Jill, being Jill, had already emailed the company and asked for the missing piece to be sent. They’d responded by the time she woke up, saying the part would arrive within a week.

Celebrating the present while bracing for the future

This incident served as a stark reminder of what’s to come. I’m acutely aware that one day, Huntington’s will rob Jill of her cognitive ability to tackle these projects with her characteristic determination. It’s a future I’m steeling myself for, even as I pray it’s far off. The disease is unpredictable, and while we have good days — great days, even — the shadow of Huntington’s progression always lingers in the background.

We’ve had conversations about this. We talk about our hopes and concerns. Jill has made me promise to tell her when things become too much, when her symptoms start to interfere with her daily life in ways she might not notice. It’s a promise I both cherish and dread having to keep.

For now, though, Jill remains the project master, the fixer, the one who sees things through. I’m grateful for every day she continues to be this person. I watch in awe as she effortlessly assembles complicated furniture, fixes leaky faucets, and brings order to chaos in our home. Each completed task is a small victory, a moment to celebrate her awesomeness.

And when the day comes, I’ll finish what she can’t start anymore. I’ve been paying attention all these years, learning from her determination and skill. I know I’ll never match her efficiency or knack for organization, but I’ll do my best to honor her spirit in every project I tackle.

But today is not that day. Not yet. Today, Jill is still Jill, fiercely independent and unstoppable.

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.