Finding ‘space in the middle’ to deal with life’s challenges

Before her Huntington’s disease (HD) diagnosis, my wife, Jill, worked with children between the ages of 5 and 15. Every afternoon, when she came home, she carried stories about the little dramas that had unfolded at school that day.

There was always something — a Lego taken without permission, an argument over who should lead the group, or a misunderstanding that boiled into tears.

Each story seemed to start with a small spark that turned into something much bigger. Jill would pour a cup of tea, sink into the couch, and tell me about the fallout she had to manage. What amazed me most wasn’t the drama itself but how she approached it. Every incident became a teaching moment.

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When Jill sensed things had gotten out of control, she would gather the children together and share an age-appropriate story from her own life. She’d tell them about her brother’s accident — how he’d been in a coma, and how, before it happened, the two of them had an awful argument. Jill described the guilt she carried, wondering for days if her harsh words had been the last he ever heard from her.

Then she’d look at the students and ask them to think about how it feels to hurt someone, even for a moment, when all we really want is to be understood. “It might feel good right then,” she’d tell them, “but what if that was the last thing you said?”

Jill never scolded; she reasoned. She believed that empathy could be taught, but only if people learned to see beyond their anger. She’d have the kids face each other, look each other in the eye, and explain not what the other person did, but how it felt. The first few times, there were eye rolls and dramatic sighs. Some would mumble or shrug. But day by day, something changed. Jill said that many of them started pausing before reacting. Some even apologized on their own.

The lesson stayed with her, and now — years later, after her HD diagnosis — it stays with me, too.

Huntington’s creates chaos

Huntington’s has a way of creating friction in families, even when love runs deep. Frustration, fear, and helplessness can make people lash out. Emotions flare up over things that have nothing to do with what anyone said or did. It’s the disease creating chaos, but it’s still hard not to take it personally.

Jill once told me that the HD community could benefit from that same exercise she practiced with her students. “We need to look at each other and remember that we’re all scared and tired in our own ways,” she said. “We need to find the space in the middle.”

That phrase — “the space in the middle” — often echoes in my head. Whether you’re a patient, caregiver, or researcher, every one of us carries a different kind of pain. Sometimes, amid the challenges of appointments, symptoms, and impossible choices, we forget that the person standing across from us is fighting, too.

Jill sees this truth clearly because she lives it daily. When she talks about the HD community, she speaks of grace — not the kind that demands perfection, but the kind that meets people where they are. She reminds me that anger and fear, if left unspoken, will always find their way back into the room. “The only way out,” she said once with that dry humor I love, “is through a conversation — preferably one without any Legos flying.”

Watching Jill navigate this journey has shown me that compassion doesn’t disappear because of disease. It deepens. Her insistence on finding that middle ground between pain and peace, between despair and hope, has taught me that healing — the emotional kind — is possible, even when the cure isn’t immediately at hand.

So now, when I feel overwhelmed by the heaviness of Huntington’s, I try to follow her lead. I ask myself the same question she once asked her students: Is it worth holding on to the anger? And if not, where’s the middle ground waiting for me to stand with someone else?

As it turns out, that’s where the real community is — not in perfect understanding, but in our shared willingness to try.

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.