I was going to say this…
I wrote that piece, so thanks very much, gang. I’m happy with how it came out. It wasn’t easy to write but I think it does what I wanted it to do in terms of putting Tyler and his life in a certain perspective.
There’s some good news in that mailing as far as the research goes, too. I think the foundation is building up some steam and getting nibbles from some bigger fish (government agencies, companies in R&D). There’s still so damn much to do. They’re still in their early years and chordoma is a rare, unknown disease and its behavior is very complicated. Since Tyler is already gone I do sometimes find myself wondering about staying involved with this whole thing. If I do, other people I know are going to die. And if people get saved later on, none of them will be Tyler. But to the extent you can get revenge on a disease, that’s a perfectly good reason as far as I’m concerned, and I do like the idea that Tyler and his family and friends will continue the work he was doing.
December’s always going to be a hard time for us, I guess. I know the holidays are generally a hard time for families going through this kind of thing. My father’s birthday was last week and we went out for a nice, but very quiet, dinner. (It was just the three of us; my other brother was busy with an internship.) Then we did the usual holiday gift stuff. Two days later, Saturday, it was the fourth anniversary of Tyler’s chordoma diagnosis. The idea that this clock started counting down back then and now he’s not here at all… it’s extraordinarily sad to think about. I can’t articulate it exactly. My mom’s birthday is next week and that’s going to be just as difficult. I do feel better, but the process of recovering or whatevering from this is also very complicated. I find there’s a lot of emotional repetition; as things like shock and incomphrension go away, I think I’m experiencing the same feelings I experienced in the first days and weeks after he died, but in a way that feels more permanent.
I’m continuing with the book and making progress. I have some space left to write about some of the things that happened in late September and early October, and then the process of revisiting his life starts. Last week my mom told me a funny story - I’ve already told almost everyone I know - that went like this: Tyler played the trumpet in middle school and hated practicing. So one time he went to her and said he couldn’t play because the trumpet was broken. My mom took it to a music store, and when she picked it up and asked what was wrong… the guy said there were marbles jammed into it. I think it’s really funny, anyway, and it sums him up pretty well.