My Gene-positive Wife Wants Me to Live Fully After She Dies
Columnist Carlos Briceño struggles to imagine life without his wife, Jill
I’m a journalist, so my mind always wants to figure out the “why” of things. That means I ask questions about everything.
Sometimes I get answers I don’t want to hear. Here’s a recent example.
My wife, Jill, and our daughter, Alexus, both of whom are gene-positive for Huntington’s disease (HD), have a unique way of talking. They jump from one topic to another rather abruptly, and sometimes their train of thought is a little hard to follow. It’s like watching a beach volleyball game with six balls flying through the air.
Jill told me it’s a family trait, and after spending time with all of her extended family, many of whom also have attention-deficit/hyperactivity disorder, I agree. The number of topics covered in one conversation can be mind-boggling. It’s quite entertaining, but can sometimes be confusing.
Early on, Jill explained that her mind races so much that she sometimes blurts out a thought without explaining how she got there. Most of the time, it’s obvious what she’s thinking about. Other times, she knows I won’t understand the path her mind took to reach whatever it is she’s saying.
Instead of walking me through her mental process, she starts with “No segue” and ends with “Don’t ask.”
The problem is, I like the segue. I like knowing why she said what she said. I like hearing what’s going on in her mind. So I ask follow-up questions.
This time, when she said don’t ask, I wish I’d listened to her.
A painful thought
Last November, we made the three-hour drive to Pennsylvania from Maryland for Thanksgiving. Jill’s mom, Edwina, moved there after Jill’s father passed away in 2011 after a long battle with Huntington’s.
On the way there, I could tell Jill’s mind was racing. As I started to ask her if she was OK, she said, “How long after becoming a widow/widower do you think it’s normal for someone to remarry?”
I assumed she’d come across a story on her phone that made her wonder about this. When I opened my mouth to ask her why, she said, “Don’t ask.”
As usual, I decided her warning wouldn’t stop me from getting to the bottom of her train of thought. She followed up with, “You don’t want to know.”
I did want to know.
As she started to walk me through her process, she started crying.
Jill said she’s always wanted her mom to be happy. She said that if her mom met and married someone new who made her happy, Jill would be so excited for her. But Edwina always tells Jill she won’t because she already had the great love of her life and she’s happy being by herself now.
Jill said her mind then floated to people she’d met over the years who’d lost a spouse and remarried. Then she thought about her HD, and how one day, when she dies, she’d want me to find someone who makes me happy. She said she wouldn’t care if I remarried one day.
“You should live fully while you’re alive,” she said. “And if there’s anyone who can help you with that, you should go for it.”
As difficult as this column was to write, it was harder hearing what Jill shared. She didn’t want me to reassure her or tell her that would never happen. All she asked me to say was that no matter what happens in life, I promise to be happy. With or without her.
I couldn’t answer her. All I could do was cry at the thought of life without her.
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
Peter Ellis.
Carlos,
I feel for your present situation. Last year my wife died of hd, the end came fairly sudden due to an infection. I didn't think about this when she was alive, but I wish we had discussed it. It's almost 6 months now since Linda passed away, I spend some time each day thinking of her and what might have been a great life for us both if Huntingtons hasn't of come along. I talk to our dog about her sometimes. I have decided that if love comes along in the future I won't :pass it bye: but embrace it, I think my wife would have done the same. But I don't think I will go looking for someone else. I am almost 67 years old now, and people look different than 30 years ago, if you know what I mean. My wife is now in a place where Huntingtons is not affecting her any more, but I do miss her every day.
All I can say now is talk to your wife as much as you can, tell her how much you love her, and give her loads of hugs. One day you will not be able to. Good luck, and god bless you both.
Carlos Briceño
Peter,
Jill and I feel so sorry for your loss. I know what a hole that leaves in your life and in your heart. I can’t imagine that feeling goes away, but I hope as time goes by, you heal and find peace. You sound like such a kind person, and I am sure your wife would want you to find happiness. Although Jill talked about me meeting someone, her overall meaning was she wants me to enjoy my life if she is no longer in it. I would want the same for her. As hard as it was to hear, I am glad we had that talk. Jill has had a lot of loss in her life and is determined to share all of her love and kindness while she’s on this earth. She also said she never wants me to guess what she would “have wanted” after she is gone, even if we must have uncomfortable talks.
I am happy you have your dog as a loyal companion. They bring us such joy and love even on our worse days. Take care.
Bonnie Cordova
Your column really helps, Carlos. My daughter has HD and your column makes me feel less alone; but at the same time, I wish you weren't going through this.
Carlos Briceño
Bonnie,
Thank you for following our story and sharing yours with us. Your daughter is so very lucky to have someone who loves her as much as you do. Every time you reach out, we are reminded and encouraged to keep writing this column. As difficult as it is to share, knowing readers like you are being supported makes it worthwhile. Being a caregiver is overwhelming, so I hope you are taking some time for you. Self-care is so important. Take care.