Tuesday, September 7, 2010

The Dinner Party

Our friends R. and J. were here at South Davis for dinner again, dinner such at it is. We wrote about them some time ago. Roger has ALS. The first time they came for dinner, Roger looked at Brooke, lying in the bed, on the ventilator, motionless, and said, “That’s where I’ll be in two or three years. If I’m lucky.”
Roger’s physical being is deteriorating, though his organic-chemist brain remains completely sharp. He’s the kind of guy who, when describing the problems that ALS causes with balance, doesn’t talk about trying to stand up so that his center of gravity is poised just so, but about his “center of mass.” He’s been engaged in furious research about ALS and has developed genuinely radical new theories of the etiology of ALS, publishing various papers, even as the disease takes his body out from underneath him, so to speak.
So we had dinner. A dinner party, sort of. Brooke is lying in the bed, but telling Roger that he’s been feeling pretty good and about the progress he’s made in wearing the trach cap for many hours a day, breathing just the way an ordinary person does, in and out through the nose and mouth. The cap makes the trach irrelevant, and makes it more likely that even this last small-size trach can be removed some day. Brooke’s trajectory is slowly upward; Roger’s is slowly downward, and they’ll cross at some future point, maybe in a couple of months, maybe longer, no one exactly knows what’s in store for Brooke or for Roger.
Roger and Brooke had done a lot of hiking many years ago, including the usual hair-raising mountain escapades.
“We’re brothers in adventure again,” Roger says to Brooke. The four of us, Roger, Jane, Brooke, and Peggy, discuss whether it would be more accurate to say, "We’re brothers in adversity." We talk about what it’s like to frame something as an adventure or as a disaster, even if it means death for one and permanent disability for the other. Even though eventual paralysis will take away even his facial muscles, Roger still has this wonderful, infectious smile. Brooke smiles his own wonderful smile too. They agree: “We’re brothers in adventure again.”


Lorraine Seal said...

Thanks for the peaceful picture. Poignant as it is, it made me smile.

Keep on keeping on.


Elisabeth said...

A poignant post and for me quite sobering. I broke my leg a few days ago and have been lamenting my lack of physical freedom, but a broken leg is a hiccough compared to this. Thank you.

Sondra Aggeler said...

Oh, my gosh, I imagine Roger and Jane and Brooke and Peggy having dinner, and my heart both aches and dances. This evokes so many fond memories of the 4 of you. The few times I went along on an adventure, I held things up, but you were always kind about that. Although we will check out in our native state, part of my heart will always be in Utah. Carry on, dear friends. . .