Facing the Pain of Dying Younger

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.

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