Columns

Huntington’s Is Not My Secret

A few months ago, my boyfriend’s Philosophy of Technology class planned a debate about the ethics of gene editing. I told him that I was a perfect case study to bring up since gene editing opens avenues for a potential Huntington’s disease cure.

My Wife Makes Every Day Feel Like Valentine’s Day

Valentine’s Day, a holiday my wife doesn’t believe in, has come and gone. Jill sees the day as a manufactured holiday. She believes that every day should be like Valentine’s Day — in other words, you should show love every day to the ones you love. We don’t make grand…

My Daughter’s Grit Will Serve Her Well

As most of you know, my wife and daughter tested positive for Huntington’s disease. They have witnessed the brutality that Huntington’s can inflict, and they have every right to curl up in bed every day and cry. But they don’t. They get up and continue forward with what I…

I Have a Unique Background as a Caregiver

I’m not a nurse or a social worker. In other words, I haven’t received formal training in caregiving from a college or a university. But I do feel that I’m prepared to do well as a caregiver because of the training I received as a child. I grew up in…

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.