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What Family Means to Me

Growing up, my grandparents and I drove every summer from Florida to Pennsylvania to visit our extended family. I spent time with their siblings, nieces, and nephews who still lived in the state. I adored my family, and in turn, they adored me. At the time, family was…

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.

I’ve Lost Many Things Because of Huntington’s

During the holidays, the small, wood-paneled dining room was full to bursting with my family members. Ten or more people squeezed around a table meant for six, with just an inch of elbowroom between us. My dad sat at the head of the table, which was covered by a cream…

Caregiving Is a Marathon

My mother-in-law, Edwina, visited us right before Christmas. I’m proud to say that I’m her favorite son-in-law. (That’s a family joke. I’m her only son-in-law.) Her husband, Ken, died from Huntington’s disease in 2011. During her visit, I asked her what it’s like to be a caregiver for someone you…

Yeah, It Could be Worse, but So What?

“It could be worse” is a sentiment I hear fairly often. It’s often said after I express sympathy for someone’s situation — such as when someone worked until 10 p.m. instead of leaving at 6. It’s as if the sympathy is unwarranted because it wasn’t the absolute worst…

Cultivating Patience Requires Patience

Patience doesn’t just happen. It takes work. Would you enter a weightlifting competition, run a marathon, or perform stand-up comedy without planning and practicing? You probably wouldn’t. So why do we expect ourselves just to be patient? When my wife, Jill, learned that she carries the Huntington’s gene, we started…

How Huntington’s Affects My View of Christmas

Every family, regardless of religion or background, has at least one time of year that is special to them. A time when they get together and celebrate, repeating rituals that have been passed down through the generations. For my family, that time is…