Sometimes understanding each other means pondering how our brains work
A difference in opinion over organizing clutter leads to a revelation
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My wife, Jill, and I recently went to Target to shop for new baskets. The trip reminded us of when we helped our daughter move earlier this year, and how that trip helped us to see each other more clearly, which sits at the heart of how we live with Huntington’s disease (HD).
Jill, who is gene-positive for HD, loves baskets because she hates clutter. For her, baskets are a way to put everything into neat boxes so nothing is lost, just tucked behind what she calls “the wall.” She keeps a running inventory of those baskets in her head. This basket is for mail, that one for chargers, another for dog toys. It makes her happy to know where things live. In a life where HD has taken so much control from her body and mind, these little containers offer a sense of order that most of us take for granted.
I am on the other side of the basket divide. Clutter doesn’t bother me much. My brain seems to switch off my ability to see piles of stuff. I can walk over a stack of papers on the floor and honestly say, when asked, that I did not see them there. It is not rebellion. It is a form of blindness, born from years of being messy.
Over the years, Jill has worked hard to help me organize my things. She has bought bins, trays, hooks, and baskets. She has offered again and again to sit with me and sort through my stuff, because I admit I am not good at it. No matter how much she sets up systems, though, I slowly slide back into disorganization.
There are days when this hurts her. From her perspective, she is investing precious energy to make my life easier. When I do not use the baskets, it feels like a slap in the face, as if I’m rejecting her effort and, by extension, her.
Then came the trip to Boston.
Our daughter, Alexus, who is also gene-positive, was moving into a new home, and Jill and I went to help her get settled. Organizing a new home is Jill’s version of a puzzle. She unpacked, sorted, and assigned baskets.
At one point, Alexus watched her mother carefully placing things into bags and baskets and finally said, “Mom, these baskets and bags you use to organize everything just make stuff invisible to me. Once it goes in there, my brain forgets it exists.”
Jill told me that she froze for a second. Alexus was not criticizing her. She was describing how her own brain worked. For our daughter, baskets were like black holes. Once an item crossed the woven edge, it might as well have been thrown away. She needed her things out where she could see them, even if that looked messy to someone else.
That was when Jill understood that I am more like Alexus than like her.
Different ways of navigating the world
All those years she had assumed my failure to use the baskets was a lack of effort or care. In Boston, she realized it might be something different. My brain, like our daughter’s, stops seeing things once they are tucked away. The baskets that comfort her make objects disappear for us. It is not that we do not appreciate her systems. It is that they fade into the background of our minds.
Living with HD has taught us that brains can work very differently, even inside the same family. Jill’s HD affects her movement and energy, but her love of structure is part of how she fights back. My scattered approach is not a moral failing, and her craving for order is not a trivial quirk. They are two ways of navigating a world that often feels overwhelming.
Since that Boston trip, Jill and I have tried to meet in the middle. She still wants to utilize baskets — as witnessed by our recent trip to Target — but we talk more about which ones I can realistically use. Maybe the keys go in a dish on the counter instead of a covered container. Maybe my work papers live in a visible stack instead of a box. We are learning to distinguish between what truly helps both of us and what only works for one brain.
In other words, we have learned to see each other more clearly. The same woven containers that give her a sense of control can make things disappear for me and our daughter. Now, when she looks at a basket, she said she still sees peace, but she also remembers Boston and Alexus’ words.
That trip to Target reminded me again that, when I see a basket, I have to remember that behind it is Jill’s heart, doing its best to hold back the chaos that Huntington’s disease keeps trying to bring into our home.
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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