Thursday, March 17th, 2016

It is difficult to watch Tom be (occasionally) cognizant and (comprehensively) unable to articulate a response. We’ve been watching a lot of TV (we always do, truth be told) and he can follow the plots of the shows. When I try to change the channel, he’ll say “let them finish building,” or “not until it’s over.” Which is a good sign, or at least heartening. And occasionally he’ll pull out a narrative from the things going on around him: “why is everyone packing?” [to go to the hospital] and “are you crying because you’re afraid you won’t see me again?” [to his sister, who flew down to see him; yes].

He doesn’t understand how serious what’s going on is. When his co-workers visit, he tells them — laboriously — that he’ll be back after we figure out what this really is. He asked the doctors when he can return too — it wasn’t that he wanted to go work again (as far as I know). He was really asking when he could put this all behind him, and finished building the house, return to the diet, configure the WiFi. When I went to adjust the wheelchair foot rests, and bemoaned that they are too short for his legs — even when fully extended — he said that he could manage like this, that he’d be out of it soon.

The cognizant moments fill you with happiness that he’s still in there, but grief that he can’t express himself fully. You want to know where he’s going with the thought, what he wants to add. Because he wants to participate, converse. He wants to be healthy, to be who he is without the strictures of the tumor(s?). And you want to help him, and to say all of the things that you’re worried you won’t be able to later: “Thank you for taking care of my mom. Thank you for being there. I love you.” But you don’t because you don’t want to scare him.

I’m sure he knows anyway, but some things are just important to say out loud.

This is a part of a series of essays which I began while my step-father Tom — a good man — was undergoing treatment for particularly aggressive brain cancer. He began experiencing acute symptoms on March 6th, 2016, and passed away nineteen days later.

His family and friends started a college scholarship fund in his memory. If you would like to donate, you can do so at