As people living with ALS, we often encounter people who seem desperate to say something to let us know they sympathize with us. I realize they mean well, but too often they do not understand how their attempts at empathy may hurt us.
When I was diagnosed, I was at the top of a career I loved, entering the years of my highest earning potential, at least ten years from retirement. I had to leave my career, and my family began planning for the inevitable. We sold our beautiful dream home on the east coast and moved to Ohio to be near our parents. We paid off debt and moved into a 960-square-foot rental (four of us—my wife, two boys, and myself) in a lower-working-class neighborhood. But it’s okay. It’s affordable, it’s one floor, we’re comfortable, and it’s 30 minutes from my ALS clinic at the University of Cincinnati.
When my brother and his wife came to visit, I said that it has been a challenge for the family to downsize and move into a tiny home. My brother’s wife said, “Oh, I know how you feel. Our condo is only 700-square-feet, and we had to build a loft to have a second bed.” This condo is their third home, on a pristine lake in the Rockies, with a private dock for their large new boat. Their second home is a two-bedroom, two-bath condo at a ski resort, where they can hit the slopes right from their door and jump into a heated pool in the middle of winter. Their primary home is a sprawling house on four acres in Denver. The covered, timber-framed deck, with a large stone fireplace, bar, and big-screen TV, is 1,200-square-feet and has a stunning view of the mountains. So, I don’t think she knows how we feel.
I should add, I still feel grateful. There are people who have it worse than I do. I have a swing on the back patio where I can sit and hear the birds and watch the squirrels play. What more does a person need?