I need to be more mindful about how my decisions affect my wife
Sometimes I, not Huntington's, am the cause of Jill's distress
My wife Jill‘s love knows no bounds. She’s patient, forgiving, and understands me deeply. Yet, I sometimes act without considering how my decisions affect her.
Here’s an example: I like to speak in public. I frequently discuss my faith, and although Jill doesn’t always share my beliefs, she regularly attends my speeches. “Showing up for their things,” she says, “is part of loving someone.”
And show up she does, time and time again.
Months ago, I was invited to address a group of young artists about my faith, forgiveness, and finding peace. I immediately told Jill. Despite the topic being outside her usual interests, she promised to attend.
Soon after, Jill inquired about the content of my speech. I was still ruminating and hadn’t decided on the specifics. I sensed her unease but attributed it to her Huntington’s disease-related anxiety. I didn’t probe further, assuming there was nothing I could do to alleviate her concerns.
As the date of the speech drew nearer, Jill repeatedly asked about my progress. Each time, I’d cite my hectic work schedule as an excuse for not having started. She even offered to help, but I politely declined, assuring her I’d get to it. Her anxiety was palpable, yet I remained oblivious to its true source.
A difficult lesson
The day of the talk arrived, and true to my procrastinating nature, I was hastily printing several handouts hours before the event. When Jill asked to see what I’d prepared, I admitted I hadn’t written anything down, explaining that I prefer to speak extemporaneously. Her disappointment was evident, but pressed for time, I said nothing.
At the venue, Jill found herself sitting behind me, uncomfortable with the interactive setup. As soon as I finished speaking, she bolted from the room. After answering a few questions, I searched for her, eventually finding her in our car, her face a storm of emotions.
“Are you OK?” I asked.
Visibly shocked at my lack of understanding, Jill explained, “You shared details of your life.”
“Uh, yes,” I responded, perplexed.
“And the DETAILS OF YOUR LIFE ARE THE DETAILS OF MY LIFE!” she exclaimed.
I reminded her that I’d shared similar information in our column, but as we drove home, I watched tears stream down her face.
Finally, Jill sobbed, “Carlos, I asked you for weeks what you were going to discuss tonight, and you gave me nothing. Then you openly shared very personal things with strangers.”
Still not grasping the issue, I admitted my confusion.
“You talked about my health, our relationship, and our daughter’s gene testing for Huntington’s,” she explained. “We’ve shared some of this before, but I was prepared then. Tonight, I was blindsided. You discussed deeply emotional topics without warning me.”
The realization hit me like a ton of bricks. My sharing, which comes so naturally to me, had deeply hurt Jill. All those times she’d asked about my speech, she was seeking emotional preparation, not just information. I had failed to protect her, to understand the real source of her anxiety. I’d forgotten that, sometimes, it’s not Huntington’s causing her distress; it’s me.
That experience taught me a valuable lesson about communication, empathy, and the importance of considering how my actions affect those closest to me. Moving forward, I vow to be more mindful of Jill’s feelings and to foster open, honest conversations about our shared experiences before making them public. Our life together is a precious thing, and I need to honor that in both my words and actions.
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.
About the Author
Lauren Holder
Sending love and hugs to you and Jill. It's such a balancing act, one I know oh so well. Effective communication is so very important, and I'm glad she was able to talk to you about it.