Wondering how our survival instincts will affect my wife’s future with HD
How far will Jill go to stay alive?
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My wife, Jill, was watching a show about survival the other night, the kind where people are pushed to their limits in the wilderness. When it ended, she turned it off and sat quietly for a moment.
Then she said, almost to herself, “It’s wild how far people will go just to stay alive, even when every part of them knows they should not.”
I knew she was not just talking about strangers on a screen. She’s been diagnosed as gene-positive for Huntington’s disease, so I knew she was talking about herself.
Quantity vs. quality of life
Our bodies are wired to survive. At a basic level, our brains are always scanning for danger and trying to keep us alive. That instinct can be helpful when we need to move out of the way of a car or see a doctor when something feels wrong. But when you live with a neurodegenerative, terminal disease like Huntington’s, that same instinct can make things more complicated.
Survival stops being a simple question and becomes a long list of maybes and what‑ifs.
Jill has seen a lot in her years working in healthcare, long before her own diagnosis. She has watched patients and families wrestle with impossible choices: more treatment or comfort care; one more intervention or letting go. Those memories color how she thinks about her future.
After the show, she told me that what struck her most was not the wilderness, but the determination on the contestants’ faces. “Some of them stayed even when they were clearly suffering,” she said. “It made me wonder how far I will go when Huntington’s has taken more from me than it already has.”
That is when our conversation turned to feeding tubes and other life‑prolonging measures. Jill has brought this up before, usually in a quiet, hesitant way. She worries that some interventions prolong suffering more than they preserve life in a meaningful sense. She thinks about quality of life, not just quantity. For her, those two things are not interchangeable.
“I do not want to be kept alive just because we technically can,” she said. “I am scared that, when the time comes, my body’s need to survive will drown out everything I am saying right now.”
There is a painful honesty in that fear. It is one thing to talk calmly at the kitchen table about what you would do someday. It is another to make decisions in a hospital room when pain, fear, and confusion are all shouting at once. Jill wonders which voice will be louder in that moment — the one that says, “I want peace,” or the warrior one that whispers, “Stay, no matter what.”
We also talked about how survival instincts affect the people who love someone with Huntington’s. As a caregiver and husband, I feel my own pull. Even when I know she is suffering, part of me wants to keep her here as long as possible. That part doesn’t care about her prognosis. It cares about one thing: more time with her. It is humbling to realize that my desire to keep her alive could, if I am not careful, add to her suffering.
An ongoing conversation
We do not have all the answers. What we do have are ongoing conversations. We talk about advance directives, about what quality of life means to her, about what she fears most. Some days, she is clear and firm about not wanting aggressive measures. Other days, the survival instinct speaks louder, and she wonders if, when faced with the choice, she will cling to any option that offers more time.
I have come to see these shifts not as contradictions, but as part of the emotional landscape of living with Huntington’s. It is human to want to live. It is also human to want relief from suffering. Those two truths can coexist inside the same person.
As I watched Jill that night thinking about a TV show where strangers fought to stay alive, I realized that her real survival story is happening right here at home. It is in the way she keeps asking hard questions, even when the answers scare her. It is in the way she tries to balance her instinct to hold on with her desire not to burden the people she loves.
In the end, I don’t know exactly how far Jill will choose to go when Huntington’s has won more battles than it has lost. Neither does she. But I do know this: We will keep talking about it while we can. We will keep trying to honor both her courage and her limits. And when the time comes to make those decisions, I hope we remember not just the instinct to survive but also the equally powerful need to live, and that we can let go with as much dignity and love as possible.
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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