The invisible mountain my wife climbs to complete everyday tasks

My wife, Jill, who is gene-positive with Huntington’s disease (HD), told me recently that she has to “pump herself up” to do almost anything now. It’s not just the big things, like medical appointments or social events, but also the simple, ordinary tasks that most people move through without thinking, such as taking a shower, answering an email, or going to the store for milk.

From the outside, it can look like procrastination. From the inside, for her, it feels like preparing for a climb.

Before HD, Jill was the kind of person who lived in motion. She would joke about being lazy if she stopped moving before midnight. If something needed to be done, she did it — no warmup required. Her engine was always idling and ready.

Now, the engine still exists, but it doesn’t start as easily. There is a kind of hesitation at the edge of everything. She stands in the doorway before leaving the house, takes a breath, and tells me later that she is quietly telling herself: “You can do this.”

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She also tells me she often sits in the car in the parking lot at the grocery store, hands on the steering wheel, letting a song finish before she walks inside. Sometimes she will text me from another room, not because she can’t get up, but because she is trying to gather herself to move.

When she says “pump myself up,” what she really means is that she has to work herself past the friction.

Some of that friction is physical. Movements are less automatic. Balance takes more attention. A task that used to be one step, such as get up and go, is now a chain of smaller steps she has to mentally line up. Some of it is cognitive. Starting, switching, and planning each comes at a cost of extra effort. And there is only so much effort in a day. And some of it is emotional. There is a constant awareness that simple things are not simple anymore, and a quiet grief that rides alongside that knowledge.

What amazes me is that she does it anyway.

Jill has developed a kind of private ritual around this pumping up. She picks out her nail polish the night before an appointment, like armor in bright colors. She sets out her clothes in the order she will put them on. She makes little deals with herself: “If I go to this appointment, I get to stop for iced coffee on the way home.” “If I send this email, I can watch one episode of a favorite show.”

She breaks the day into small, negotiable pieces, because facing the whole thing at once feels impossible.

But there are days when even the pump-up doesn’t work. On those days, we adjust. We move the appointment. Or we reschedule the call. In other words, we decide that staying in pajamas is a perfectly acceptable use of the day.

The fact that she has to psych herself up doesn’t mean she is weak. It means the world is heavier than it used to be, and she is still choosing to lift pieces of it.

As her husband, the hardest part for me has been unlearning the reflex to judge the delay. If I’m not paying attention, it’s easy to think, “Why is this taking so long?” Or, “We’re going to be late again.” What I’m trying to see instead is the invisible work. To notice the inner pep talks and the energy she spends just getting to the starting line while the rest of us are already halfway down the track.

So I’ve started joining the ritual when she lets me. I say, “What’s the first tiny step?” instead of, “We need to go.” I get her caffeine while she gets dressed. I give her the quiet she requires to gather anything she needs before we head out. Sometimes I’m the one saying, “You can do this,” and sometimes I’m just the person who waits without sighing.

Jill’s admission that she has to pump herself up for everything could sound like a confession of limitation. I hear it as evidence of courage. She’s not pretending that things are easy. She’s naming the struggle out loud and still choosing, again and again, to step into the day.

I remind her that she’s brave, not because everyday things are hard for her, but because she does them anyway. She shows up in a world that doesn’t see how hard she had to work just to be there. My job is to remember that, when she finally walks into the room, she has already climbed a mountain I didn’t see.

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.