My gene-positive wife and I battle Huntington’s disease together

The quote that best describes my wife, Jill, is “Hoping for the best, prepared for the worst, and unsurprised by anything in between,” from Maya Angelou‘s “I Know Why the Caged Bird Sings.”

When the love of my life started showing early signs of Huntington’s disease (HD) in 2018 — slight twitching of her eyes and toes, depression, and anxiety — she didn’t notice. Given her family history, she’d always prepared for the possibility of developing HD, but she also didn’t want to let fear define her. But she wondered, because she’s human, if she’d suffer from the disease that had devastated her father and a number of his relatives.

With each year that passed, Jill hoped for the best, but prepared for the worst.

When she finally asked me the question I was dreading — “Do you think I may have Huntington’s?” — I felt like I was going to fall on the floor from the heaviness I felt in my heart.

“Yes,” I replied.

In that second, I knew nothing would ever be the same.

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What came next was a slow and agonizing waiting game. Waiting for appointments. Waiting for an evaluation. Waiting for genetic testing. And then waiting for the results.

Once we heard the life-shattering news that she was gene-positive, Jill told me that it felt like a giant cloud had been lifted from her life. She had wondered and worried for so long that the fear was worse for her than getting the diagnosis. At least now she finally knew.

Because she’d helped take care of her late father for years, she knew how horrible this rare disease was, and she needed me to understand the difficulties of being a caregiver.

I kept telling her I understood caregiving because my late mother suffered from mental health issues my entire life.

“I’m prepared for anything,” I told Jill.

“No, you’re not,” she countered.

I rarely argue with Jill because, early in our marriage, she looked at me and said, only half-jokingly, that I could be right or I could be happy. Of course, I chose to be happy. But this time, she was wrong.

I wouldn’t have any problems taking care of her because I love her, and I know she would do the same for me.

When she started to explain just how hard taking care of her could be, I told her she had nothing to worry about, and I meant it. She started to protest, but I put my finger on her lips and shushed her. Then I kissed her forehead.

After she recovered from the shock of me stopping her from talking, she understood the meaning of my shush. She collapsed into me as I held her and said, “I know you’re right.”

It’s not often I hear that from Jill, and even though I love her stubbornness, she needed to lose this argument. She needed to see my love for her and hear me say I’d be there for her. She needed reassurance that I’m hoping for a cure for HD, but am also prepared for the worst if it doesn’t come in our lifetime. And naturally, I’ll be unsurprised by anything in between.

Jill may not have chosen HD, but she can choose to face it with me because her battle is also ours.

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.