Here we are again. I’m not sure what I want to say exactly, but on Saturday it’ll be a year since my brother Tyler died. The last couple of weeks in particular have been tough. We got back from a wonderful vacation where I was thinking about him a lot, and when we came home it just sort of occurred to me that it was the end of September and that meant the anniversary was right around the corner. That hit me hard.
I am trying to remember where I left this story. I’ve tried to continue raising money for the Chordoma Foundation and been pretty successful, mostly by selling playlists Tyler made on his iTunes. In March I went to the Chordoma Foundation’s annual conference. People were surprised to see me knowing it had only been a couple of months since he died. I was proud of that but I also found it a little odd. I don’t know what else people thought I’d be doing. I interviewed a bunch of patients as part of a documentary and I got to know some good people. They did a video tribute to patients who had died - as it happened all of the patients in the video were kids, which was awful. We sent some pictures of Tyler and had them set his portion to “Rags and Bones” by The Band, which was one of his favorite songs. I got up to talk about him afterward. I didn’t want it to be too sweet so I made a point of talking about how angry Tyler was about what his life became, at all the things he had trouble doing the last few years and all the things he wasn’t going to get a chance to do because he was dying. I said it’s important to be hopeful but that I think it’s also good to remember how our loved ones suffer, and that in between research collaborations and finding the best treatment for people who are still alive and dealing with this, that it’s good to be aware that nobody ever wanted this for a second, and that even if they do cure this thing one day, my family still won’t get what it wants because he’s gone.
I don’t know if it was being in a big hotel or if it was the emotion of the weekend - probably both - but I came down with a bad cold at the conference. The night I spoke I felt too sick to change into my nice clothes, so I was just wearing a t-shirt and jeans like I was going to a concert, which ended up feeling appropriate. On the last day I tried to come up with fundraising suggestions for people and thought up a few of my own, which is where idea of selling CDs came from.
Tyler’s music takes up a very large chunk of my iPod, the same way it does for my parents. I really get The Band now. I remember the day I felt like that clicked for me. More recently I felt like I’ve started to get jazz. I don’t know if I see in it what he did and I’d like to ask.
We’re all coping differently. My mom told me over the summer that she just cries a couple of times a day, going to and from work and whenever else. My dad says sometimes he needs to pretend Tyler’s away at college.
For most of this year I’ve been working on a book about my family, and primarily about Tyler’s life after his diagnosis. I knew before he died that I’d have to get back to it. I felt like I needed to finish it. I think I started writing in January and caught up on the last few years, and then - my dad says this was his idea and I honestly don’t remember - I started interviewing Tyler’s friends to flesh out the book. I wound up sitting down with about 25 kids and a couple of other people (nurses and doctors and a teacher) to find out about their experiences with Tyler at camp and at school, and in meetings and at other things I wasn’t a part of. I did about 30 hours of interviews and it’s one of the best things I’ve ever done. I learned so many things about Tyler that I never would have known otherwise. There were funny stories about trouble he got into and I found out a lot about how he really spent his time during all those summers at camp. I wasn’t a part of that world.
My favorite moments were from the summer he turned 16 - the campers all say that summer is the best year of their lives because they’re at the top of the food chain - but the best thing is that I gradually came to understand a lot of how he dealt with his illness, and that process of moving from pretending that everything was fine to trusting his friends enough to use the camp to help raise money for the Chordoma Foundation because he wanted to help other people. I realized he had a lot more depth, earlier, than I’d appreciated. He was more complex. I regret that I didn’t see that sooner.
There’s a scholarship in Tyler’s name now at our old high school. It’s for college-bound seniors who love music. We don’t have much to do with it, but we presented the first award in the spring. I was surprised when I saw the name of the winner. He’s the son of a history teacher who taught me and both my brothers, and we all liked him a lot. (And vice versa.) His mother died of cancer very suddenly about a year and a half ago.
Over the summer I went up to camp with my parents and my girlfriend. Maybe 10 yards from the spot where we scattered Tyler’s ashes - although the directors still don’t know about that - there’s a gazebo that was put up in memory of Tyler. This is the plaque. The kids say they hang out there all the time. We dedicated it about a week before his birthday. Afterward the campers from his year crowded into the gazebo and we sang “The Weight” together. I don’t think the rest of the campers got it (they wouldn’t have known the words), but we were told they all sang that song the last day of their waiter summer. Afterward I had some of the guys give us a walking tour of the camp, and at night, my dad and I sat in with the camp band and jammed on a few songs. It was a lot of fun.
The next weekend I was back there with my mom and my other brother. We stayed in a cabin near camp and on Tyler’s birthday we invited all of his camp friends over for a barbecue and some birthday cake. I remember the sky was purple at sunset, before they came over, and my mom mentioned she’d seen Tyler in a dream the previous night. Before he died she’d asked him to visit her in her dreams and until then I don’t think it had happened. The party was good; we listened to The Band for a couple of hours. I’d like to keep spending his birthday up there.
Right after Tyler died I had a handful of dreams about natural disasters and I realized I had another one this week. I was in a tall hotel when an earthquake hit. The building cracked so it was leaning against the building next to it and I had to run down to the street. On my way down the stairs I remember thinking “I want to see Tyler again, but not now.”
We’ve been thinking a lot about what we want to do for this anniversary. We’ll have some friends over, do some jamming, and kind of take it from there. It was hard to think of anything specific to do. My mom ruled out eating some of his favorite foods, although I may do that before I go visit them. We’ll do some cooking of our own. I asked his friends to make some posts on his Facebook page and share any pictures they could find, which they’ve been doing. I’d be happy to have them around over the weekend, but I think all of them will be at college. I ordered some new Mystery Science Theater DVDs because we always enjoyed watching those together, and maybe we’ll look at his phone. I still have the last text messages he sent me. I keep thinking about deleting them but I haven’t been able to make myself.
I think what I want to say is that I hate this. This is really hard. It takes a long time to get used to the idea you’ll never see someone again. I miss him more, not less. I haven’t talked to him in a year and what’s happened lately is that it’s started to feel like he’s been gone a long time. That hurts.