How Things Are

When I time my departure from work just right, I arrive at my parents' house while they all (parents and one or more brother and sister-in-law) are sitting at dinner and my father is up for one of a handful of such (brief) interludes throughout the day. Without my mother's insistence that he wake for meals, he would sleep more than the 22-some hours a day he is currently spending in bed. It's hard to remember that as recently as two weeks ago, he was taking brief walks around the neighborhood, trying to get his strength back. A month before that, he was riding his bike.

We don't really know what's wrong. Rather, we know a lot of things that are wrong, but we don't know why they're wrong or how to fix them. Why did this last hospitalization -- for nothing more exotic than dehydration -- spark a downward spiral from which he has not recovered? Why is he showing so many classic symptoms of liver failure when his liver blood work is really not bad? Why did he show a few days of modest improvement two weeks ago, only to backslide so precipitously that we're starting to talk about memorial services?

What we do know is that he's failing, wasting away. He's not eating enough; when he was eating almost enough, his body was rejecting food as quickly as he could take it in. His kidney function is a little impaired (ironically, his and my lab work just about match), but not enough to make him sick. We know that he has no physical energy and has lost most of his muscle mass. We know that he currently weighs a mere 10 pounds more than I do.

At the dinner table, when I lean over to kiss his cheek, my palm on his back registers every distinct rib and impossibly knobby vertebra through the thick, warm bathrobe that he wears over his pajamas. (He is cold all the time, piling blankets over comforters on his bed in an effort to insulate his emaciated body.) We gently encourage another bite of soup, maybe a protein drink, and don't forget to take your pills. We sit around the table and try to talk normally, while vigilantly watching him for signs.

My younger brother quite astutely refers to our current state as "chronic crisis." Not acute crisis, not yet. We think. But add this to what we don't know: we don't know whether he'll ever get any better. We don't know how long he can last like this.

Tomorrow, we walk for PKD, having raised $8,500 for research this year with the incredible help and support of family and friends. It doesn't feel like enough. I've been holding it (mostly) together pretty well so far, but I expect that tomorrow I will be walking through a heavy veil of tears. Whatever is wrong, whatever ends up as the official cause of death, it is PKD that is killing my father.

Tomorrow, I'll be walking for him.