Facing the Pain of Dying Younger

Facing the Pain of Dying Younger
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I saw a pig fly the other day.

OK, that’s a lie. But it sure felt like one did because my wife, Jill, cried. It’s rare for her to cry. Crying makes her feel worse than whatever made her cry in the first place, so she tries to avoid it.

For someone living with Huntington’s disease, a terminal illness, Jill is remarkably composed. She has this incredible ability to accept whatever curveballs life throws at her. As a result, she lives with peace and joy. Does she get sad at times? Of course. But for the most part, Jill lives as she normally does: full of humor, love, and care for others.

If anyone has an excuse to make life about herself or to break down more often because of stress or anxiety, it would be Jill. Everyone would understand. So it shocked me when I saw her break down the other day.

We had just finished grocery shopping at Walmart. Jill told me on our way home that she had talked to a grandparent earlier that day. He shared some typical stories you might associate with grandparents. It hit Jill that she would not experience any memories as a grandparent — something she couldn’t share at the time because she didn’t want to cry in front of him.

As it stands, no cure exists for Huntington’s. And the life expectancy for someone with Huntington’s is not long. At an educated guess, Jill has 15 to 20 years to live, which means she will probably die in her 50s.

All of this weighs on a person’s mind. And it flashed through Jill’s mind while conversing with the grandparent at her job. When Jill shared this with me in the car, it hit her so hard that she started to cry — which, of course, made me cry.

It’s sad to think about it. In a country where the life expectancy is 78.7 years old, growing old means that, if things were different, Jill would live to be as old as a grandparent.

Jill’s reaction was to be expected.

As Jill’s caregiver, I’m learning to be there for her. So I cried with her. I listened to her. I offered my hand, squeezed her neck comfortingly, and hugged her when she arrived home. I told her it was OK to be sad.

After I wiped away my tears, I thought, “I hope there’s a cure one day, but if not, I will always be present for her, listening, loving, and comforting.”

This thought gives me hope. I do not doubt that my constant presence gives her hope, too. We won’t dwell on the thought that Jill probably won’t live to be a grandparent. Our love for each other will define her future.

***

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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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2 comments

  1. Patricia Treffry says:

    Thinking of you both with warm thoughts and much Love keep going some times there are no words to say! A couple of years ago I bought my Darling husband a pice of wood! It said we may not have it all together but together we have it all! Hold on Loves!❤️🦋🌈 the HD lived with us for 14 yrs and 4 months! So in my ❤️ I know we’re you both are and you will get through this together because we did. xx

    • Carlos Briceño says:

      Thank you for your beautiful sentiments. It sounds like you and your husband had an amazing relationship. What a blessing! My wife and I are grateful for every minute, every moment, every day together. It sounds like you and your husband did too. Thank you again for writing.
      Carlos

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