I’m often in a little bit of a bad mood before lunch. I remind myself that it’s just because I’m hungry, and that I’ll feel better as soon as I eat. Still, it’s not a good time for me to talk to other people, and that includes the people who are here in the house with me. Before lunch, I am often very quiet and secretly simmering. This never used to be a problem for me before ALS, when I had a predictable appetite and could attend to all of my own concerns. But now that I move so little, I’m rarely hungry…until suddenly I’m famished.

I try to take in a lot of calories during the day, but my stomach is the size of a child’s fist, and it tightens around half a bowl of soup. They say to eat often when you have ALS, to keep your energy and your weight up. I do my best. I miss snacks – – a concept that really only applies if you can eat without assistance. If someone else is feeding you, it’s not a snack, it’s just someone else feeding you between regular meals. And so, in yet another way, ALS renders me not quite myself. I don’t know who I am anymore, I’ve said more than once. So much of my identity was wrapped up in my physical abilities, whether it was long-distance running or near-professional tortilla chip consumption. Read More>