I wrote the Dinner Party blog myself, says Peggy—as I realized later. I’d asked Jane if we could post something about the dinner we’d just had together, and then as Brooke was having his bedtime nursing cares I wrote most of the text (this isn’t the way we usually work; we usually do it more closely together); and then I ran it past Brooke. He said uh-huh. I thought I’d run it past Brooke, that is, and but I now realize Brooke was mostly asleep when I read it too him just before I posted it.
We’ve just reread it, together, one night later. Brooke says he doesn’t like the ending—it makes too light of Roger’s problems. Brooke says, “I used to say about my own situation, ‘this is going to be such a journey’ and ‘I look at this as an opportunity,’ stuff like that—but I don’t think I knew what I was talking about. I regret saying those things. There’s something about the ending of the blog about our dinner party with Jane and Roger that disturbs me—it seems to wrap it up with a rhetorical bow, just like some of my earlier attempts to buoy myself. The Dinner Party blog entry ends too neatly, given what Roger has got to go through. I don’t think you can compare back-country ski adventures to the “adventure” Roger is on—it just trivializes it. I don’t think you were aware of Roger watching all the things I have to go through, the kind of pain I was in while you and Jane were talking last night, and Roger was just watching, watching, his eyes bugging out as if to say ‘I can’t believe all the crap you have to go through with all that suctioning and cathing and stuff.’ I want to demure from that account of our dinner. It gives me trouble. It’s a false note.”
In fact, some of the neat endings to various entries in this blog are a problem for me, Brooke goes on to say. There’s such an irony here in this account of our dinner. The hiking and skiing adventures we went on together took a great deal of physical and emotional stamina. But now we in our different ways are both faced with a trial that will take a thousand times the kind of stamina and emotional sanity and physical strength than what we did when we skied together. I keep saying to myself, this is a hundred treks. This is a hundred marathons. Even the FES bike, the new functional electrical stimulation bike that’s used to shock the muscles in my legs into riding in a bicycle pattern, is harder than almost any exercise I’ve ever done. The reason we come together, you and me and Jane and Roger, is because we’re fortifying each other, not just adventuring out in the wilderness when we choose.
Would you call Huntington’s disease an adventure? No, the word doesn’t work. It’s the contrast between our youthful selves and the situations we never knew we’d be in, facing challenges beyond petty little ski tours. How could we have known back then that we’d be in this room, going through what we’ve been going through and are about to go through? That’s the ultimate irony, that we knew so little then, we were such innocents, we really did have adventures, and now we have to struggle to maintain enough realism to recognize that that word doesn’t work anymore, even as we all also struggle to try to make the best of what’s going on. These adventures are adventures in a sense, and they’re what Roger and Brooke smiled to each other about, but they aren’t anything like the ones we used to have.