What might Huntington’s disease rob from me?
A look at how Huntington's disease progression affects a spouse
The other day, a lightbulb went off when I thought about the things that Huntington’s disease might rob from me.
I’m married to someone who was diagnosed with Huntington’s in 2018, and I often focus on what the disease will steal from her (or us). But I hadn’t previously considered what it will rob from me.
All of this was prompted by a question my wife, Jill, asked me: “Do you ever feel like you missed out on something?”
She asked me this after a phone call we had with our daughter, Alexus. Alexus and her husband, René, were planning to rent a boat with some friends for a day trip off the coast of Maine.
Their plans included riding jet skis. “Wow, cool!” I exclaimed upon hearing about it.
After explaining that the word “cool” is no longer cool, Alexus said she wouldn’t be participating in the jet ski excursion.
Jill laughed. I didn’t get the joke, as it wasn’t in the form of a pun, my preferred avenue of humor. I wondered aloud why she didn’t want to do something “hot” (not cool).
Alexus paused for a second (she never laughs at my dad jokes) and then asked, “Have you ever been on a jet ski?”
She seemed dumbfounded when I said no, and then asked a follow-up question: “Didn’t you grow up in Florida?”
I did, but Jill moved the conversation along. She understands that I was a serious kid while growing up, and then became a serious adult. This was the result of being raised in a dysfunctional home, which prevented me from fully enjoying life and all that the world had to offer.
No Disney, no ‘Sesame Street’
Even something as simple as jumping in a puddle in the rain was too “juvenile” for me. Jill taught me about the freedom that comes from jumping in a puddle just to be silly.
So, yes, I did miss out on things when I was younger. I never watched an episode of “Sesame Street,” for example, I didn’t go to my high school prom, and I never watched Disney movies.
Jill’s love of life showed me a different way of living. Now that we live near Washington, D.C., we’ve visited several museums. During the Fourth of July holiday, we watched the city’s famous fireworks display, something I haven’t done since I was a kid. And I’ve almost caught up on watching every Disney film ever made.
As my contemplation of the past switched to thoughts about our future, I was struck by the knowledge that Huntington’s could rob Jill of her zest for life. And in doing so, Jill will cease teaching me how to enjoy life.
Jill looked at me and knew what I was thinking.
“We’ll cross that bridge when we get there,” she said.
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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Comments
Brian
Hi Carlos. Always enjoy your posts . My wife has just recently tested positive for Huntingtons at 56 years of age. We have two adult children whom to date have decided not to test. Its comforting reading your posts and realizing we are not alone. We treat each day as a gift and like you are living life to the fullest while waiting to cross that bridge !!!
Carlos Briceño
Thank you for your kind words. I will continue to share our journey, so we can all feel less alone.
Elizabeth S. McCabe
My husband tested gene positive in 2017 at 54. Shocking as we had no idea HD was in his
family. He is 1 of 5 and the only one with HD.
I love your comments Carlos. Quick, encouraging (if there is any encouragement
with this disease) words whenever I can steel a minute and read your comments.
Thank you so, so much for sharing your family's journey.....it sure is a tough one.
Of note, we have two son's 23 and 27. Neither has shown any interest in
being tested. After all, there is no cure : (