Family update: five months later

Everyone here was very supportive during my brother Tyler’s illness and following his death at the end of October. I’ve been thinking for a couple of weeks about posting an update on how we’re all doing, and I seem to be in the middle of typing one now, so I guess I’ll do that. Here’s what’s going on:

Um, everybody’s still sad? OK, not much of a surprise there. My mother is seeing a grief counselor and reading books about grieving - stories by people who lost their children or what the whole grieving process is like, and things like that. She says the books are either badly written or unhelpful (a lot of them go on and on about how helpful it is to have faith, which is of no use to her or any of us). She does have good things to say about Half A Life by Darin Strauss. I saw her about a month ago and I was taken aback by how angry she was. That was better the last time I saw her. She’s angry that he’s gone, that there’s no reason for it and nothing to do about it, and that it’s so hard for anyone to really understand what she’s been through. I hadn’t realized until the last couple of weeks the sacrifice she made. I’ve had a lot of time to process what was going on and I tried to be honest with myself about what Tyler’s chances were, and while that was never easy, Mom had to go on being his mom and couldn’t distance herself from him that way. I thought it was just denial at the time, but it’s more complicated than that. I don’t know if it was really a deliberate choice or if it’s just who she is. Regardless, in that sense this has been a lot harder on her than the rest of us.

My father is more sad than angry, I think. He often goes through my Facebook account and comments or ‘likes’ old pictures of Tyler. It breaks my heart every time but I don’t want to tell him to stop. It’s been a tough month for him and for me because it’s March and the Allman Brothers were in town again. We never considered not going, or at least I didn’t. It’s one of those I’ll-be-seeing-you-in-all-the-old-familiar-places things, I guess. It was a good thing to do to reconnect with that and to focus on a lot of our best times with Tyler, and our good memories from the 2009 run. On the other hand his absence was glaring. There’s no avoiding that. Oteil (the bass player) used Tyler’s bass one more time, during their cover of Blind Willie McTell on opening night. My dad and I were there and it was a wonderful tribute. Tyler would have gotten a kick out of it. We were also at the show Friday night with two of Tyler’s closest friends, and that was a very good time. And Dr. John sat in with the band on Saturday. My mom and I were there. That was maybe the biggest ‘I wish Tyler were here to see this’ moment I have had in the five months since he died. There have been a lot of times I’ve wished I could talk to him and a lot of times I’ve imagined what he would have said or done in response to whatever situation I’m in - I thought about him a lot during the Super Bowl - but as far as stuff I just wish he’d seen, that shot to the top of the list.

It’s been a touch couple of days since the band finished up. It was something to look forward to and it was all a tribute to him in a way, and now that’s over. Yesterday evening I was in the kitchen with my girlfriend and I put on We’re Gonna Make It by Little Milton and just about broke down crying for no reason other than that song make me think about him a lot. I don’t really know why. The last couple of times I visited my family, I’ve raided Tyler’s and my dad’s CD collections. Tyler made a lot of mix CDs for his friends and for himself and I’ve ‘borrowed’ maybe eight of those to go along with the ones he gave me. Eventually I think I’m going to give copies to my friends. So I’ve expanded my own musical knowledge with some of the jazz he was checking out (I like Blue Train in especially). I had no idea how much stuff he sampled near the end. It does help me feel closer to him and much of it is just cool on its own merits. The Band is still the hardest for me to listen to.

About a week and a half ago I went to this year’s Chordoma Community Conference. I did video interviews of a few patients and other people and I met some folks I was really impressed with- patients and a guy a few years younger than me who also lost a younger brother a couple of years ago. I spoke about fundraising at one event and offered some tips and ideas. I showed off the Grateful Dead-themed ‘Cure Chordoma’ magnets that one of Tyler’s friends designed and a few people were interested, so we’ll make up a few more and sell them. They gave me (on behalf of my family) a small medal that reads ‘Chordoma Champion.’ I wouldn’t let them put that on me. I felt like it’s for Tyler if it’s for anybody. I’m not sure my parents want the thing but I’ll at least offer it to them. They thought about going but they weren’t ready.

I did go, and didn’t really think about not going, because I felt like someone should be there to talk about Tyler. There were a lot of moving tributes like that at the '09 conference I wanted to do the same. They did a video presentation on Saturday night, a video montage (not totally different from the one we did at Tyler’s memorial in November). We submitted about half a dozen pictures of him and asked them to set it to Rags and Bones by The Band, which they did, very nicely. All the tributes in the video happened to be kids. I don’t think it was by design, but that was pretty devastating. At the first conference in 2008, Tyler was one of a group of kids who signed a pledge to help raise money and awareness. There were about 10 people at that meeting; only two of them are still alive.

I talked about Tyler after the presentation. A lot of what I said would be familiar to people who followed along here. I talked about his passions, particularly for summer camp and for music. the contradictions in his life and how they reveal who he was: he loved food, both cooking and eating, and the last thing he was able to eat were just raspberry Snapple ice cubes. He loved playing and listening to music, and the disease eventually stopped him from playing and took away some of his hearing. He was a talker and it destroyed his voice, which hurt him a lot. He was a devoted athlete and over time he couldn’t play sports anymore, and I know that cut him very deeply. He was usually uncomfortable with the attention people gave him as a consequence of his illness, but as time went on, he was willing to take on that attention and draw the focus to himself so he could raise money and help other people with chordoma, and he’d decided to do research in college and become a doctor and confront his illness because he thought he’d be able to help other people. I wish he’d been able to do that himself, but I know he inspired others.

I talked about how angry and frustrated he was throughout his illness because I don’t think we acknowledge that often enough. It’s all well and good to focus on hope because I know despair and rage don’t necessary bring in the donations or make people feel better about giving, but the truth is more complicated, and I think it’s perfectly healthy to be motivated by our anger at what this disease does to the people we care about. This was not the life my little brother wanted for himself - he didn’t wanted to be a cancer hero [he said that to me, very bitterly, in an email] and it’s not what we wanted for him. And I talked about his decision to choose to die, or at least choose his own timing. The more I think about him, the more impressed I am by him.

In January I finished the first draft of the second half of the book I was writing with Tyler, completing the parts that covered his first recurrence, his Make-A-Wish experience, his college plans, his second recurrence, final months, his death, our scattering of his ashes and a little bit about his memorial. More recently I finished my first round of edits. Before it was around 60,000 words and basically a novella; now it’s around 107,000 words and it’s really a book. I’ve sent it to my parents for corrections and for additional stories and memories, and I’ll also incorporate other things I’ve remembered.

Since then I’ve started interviewing people who knew Tyler well. I’ve done eight of these interviews so far - some lasted around 15 minutes and the longest was about an hour and a half. I’ve learned a lot of funny stories and gained some new perspective on him as a young man and not just as my brother. I have a lot more of these interviews scheduled, although since spring break is over most of them will be done by phone instead of in person. I interviewed one of his friends from high school and he told me how Tyler helped loosen him up and how they planned to go into medical practice either. Tyler talked about being an ENT; his friend plans to be a neurologist. He talked about what a difference he could make if he could help a chordoma patient, and maybe catch it earlier. He didn’t say it but I felt he was thinking that that would be a little like saving Tyler; which it would and wouldn’t. Some of his camp friends told me about the things they did together over the years, what he was like as a counselor, the activities they shared, his experiences during his summer as a waiter up there (they all said it was one of the best times of their lives, and of his), they’ve talked about the insults he dished out and the way he pushed people’s buttons and sometimes got the hot-tempered kids really angry, his style as a counselor, they told me about the way he sometimes wanted everything to be normal and about some of his private frustrations. His closest friends told me about the first time they got high together. One of the guys from the Chordoma Foundation told me Tyler once sent him an email that ended “P.S. I can’t kick my chordomas ass with research so every once in a while I hit that spot with a hammer, show that bastard who’s boss.” [This was before he decided he could brave the lab after all.] That was so completely Tyler-ish that it moved me to tears.

I think my favorite story so far came from one of his camp friends. I mentioned that the first part of his last summer was difficult because he was with young kids who were new to camp and didn’t know him, so that was a bad experience. Once he was moved to a different bunk with kids who were a bit older and already liked him, they really embraced him. Those kids got together and carried his stuff from the old bunk to the new one. I’m so touched by that. The same kids, or some of them, were on the soccer team he coached to a championship on his birthday. I also interviewed two of the ABB guys about their memories of the dinner and the nights Tyler hung out onstage. They remember him as really funny, very observant of the musical dynamics (including the screwups), and of course, they remember smoking with him. Turns out that was Tyler’s idea - and the stuff he had on him was good enough to impress some of the guys in the Allman Brothers. Let that sink in for a minute. :wink: It’s not the most meaningful thing he ever did (This week or next, I’m planning to interview a girl he was very close with and I’m told he inspired her to become a pediatric oncology nurse) but it’s pretty freaking cool.

That’s most of what’s going on with us right now, I think. My parents got another dog in January, so now they have four of them. The puppy is named Bird. He’s another Gordon Setter, very friendly and handsome. We wanted to name him after one of the guys in The Band, but it just didn’t fit, so we thought naming him for a jazz guy was a good alternative.

Marley, I think about you guys every time I get new mail from the Chordoma society. I’m glad you updated us.

Of course you’re all still in the grieving process. No one with half a brain would expect you to just “get over” a loss like that so quickly.

Please continue to take care of yourself, take comfort in your parents, and try to be a comfort to them.

I was thinking about Tyler just yesterday. He left an impression on me even though I only knew him second hand. I’m looking forward to your book.

I think of you and your family often and often wonder what life is like now. Thank you for keeping us updated. Your brothers life, as told through your words, has touched more people than you know.

Marley, when you mentioned your book to me the other day I wanted to ask you more. After I lost my daughter, I immersed myself in writing. It seemed it help me cope with grief. I had a lot of energy it seemed, and I needed to channel it into something. I did a lot of freelance work during that period — many, many interviews and thousands of words. I read thousands of words too — complex novels that took my whole concentration. It helped too.

I of course relate most to your mother and know her pain well. Self-help books are mostly awful (though I’m no expert; I’ve looked at very few of them) but I hope she finds something that will help her. The unfairness of it all is the most awful aspect. There’s always going to be this big gaping hole in your life where Tyler was supposed to be … now, in 10 years, 20, 30. Forever.

I know you all aren’t religious but I do pray for you and others that I care about. Think of it as my concentrated caring, going out to both you (and God that I very much believe in). Whatever the source, I hope it inspires healing in you and your whole family.

I very much look forward to being able to read that book, Marley

It’s not that I thought anybody expected us to be over it. It’s just that the longer this goes on, the more you become aware of how long it’s going to last. When Tyler got sick I understood the idea that if he were gone I’d always miss him, but now I actually know what that’s like.

If you have any questions left I’m happy to answer. Above is the general idea of what I’m doing. It’s been sad at times but I’m enjoying it so far. I wish I’d had the idea to do it this way while Tyler was around- I think he would have appreciated it and I could have asked him a lot of things that I’ve been asking his friends. But at least I get it now.

I want to post something deep and meaningful, but I can’t. I’m not good enough with words, and I’m crying too hard.

I just didn’t want to read this and not say something. Thank you for sharing your brother’s life with us, Marley.

Thanks very much. I meant to put this in my OP but I forgot about it. It’s sad but I think this is funny in a way:

A couple of weeks after Tyler died, one of my mom’s friends suggested she talk to a local rabbi. She was reluctant but she went along with it and eventually spoke to him on the phone. The rabbi was fairly young and didn’t know her, but he knew the basics of her story. Near the end of her conversation the rabbi said “He’s in a better place now.” My mom was offended but didn’t say anything. She stewed over the comment for a while and eventually decided she wanted to let him know how much this bothered her. She called him back and asked him which one of his children he would be willing to give up if they were going to a better place. He couldn’t do it and she told him how hurtful it was to be told it was better her child is dead when she didn’t believe in any such thing. It was a clueless thing to say, however well intentioned.

And I do think it’s funny that she gave him that much crap - and I’m happy she stuck up for herself. Like I said, when I saw her the last couple of times I was surprised when I realized how mad she is about everything because I think I went through that earlier. But I’m glad she still has the energy to protest and not take this for granted. She’s frustrated that some people were only sympathetic with us for show; that they ask how she’s feeling but don’t really want to get all the way into it. They ask because they want her to say she’s OK so they don’t have to worry about it. She’s annoyed people do the ‘if there’s anything I can do’ thing because she doesn’t want to have to invent work for people (I’ve never gotten angry at anyone who asked me that, but I get it).

Thanks for the update, Marley. You and your family are in my thoughts.

Good on your mom for giving the rabbi what for.

I’m looking forward to the book as well.