Dedicated to a Brother: The Last Time Around

Miscellaneous and Personal Stuff I Must Share
381

Thank you very much, everybody. Since midday Saturday a lot of people from family, friends, camp, Tyler’s school and other places have come by to visit my family. We had him cremated Saturday afternoon nearby, just the four of us and my girlfriend. It was extremely sad, but some good jokes were made. If I had to be honest I’d say my other brother took the prize when he asked the attendant if we could get the hot wax. I saw there were bricks inside the oven (I’m sure they prefer to call it a chamber or something else) and asked if they got the technology from the pizza industry. After that we went home and throughout that night we had a huge crush of people from about seven to midnight.

There have been a lot more visitors since then and a ton of food, much of which has already gone to charity because it wouldn’t fit in the refridgerator. My girlfriend and I went home Sunday afternoon. I needed some quiet and some space. I’ve had some of that since and I’m going through whatever it is I’m going through right now. I think the shock of his death is going away and I’m dealing with the finality of it. I’ll visit my family again soon, Saturday at the latest. My uncle will be out and we’ll get to jam, which should be good.

Tuesday I spent several hours working on the list of songs for the memorial. I haven’t had the heart to cut anything, which means it’ll probably be much too long, but I like it anyway. Maybe I’ll post it to iTunes in time for the memorial. We’ll be booking the bowling alley and getting in touch with his friends in the next day or two, I think. I’ve had parts of my eulogy in my head for a long time but still haven’t written them down. I have another three weeks or so and don’t feel pressed for time. All of this is very hard. I’m trying to extend the parts that aren’t so painful and let the others pass.

382

This reminds me very much of a piece by George Bernard Shaw, where he talks about the cremation of his mother. I read a shortened version of it (this is the full version) many years ago in school, and saved it because I found it very profound and comforting. The combination of sadness and humor in your post brought it back to mind. Maybe you’ll find it comforting too–I hope so.

383

My deepest sympathy to you and your family, Marley. It sounds like you’re looking out for each other generously. You have my admiriation for that. Best thoughts and wishes.

384

You have my sympathies, Marley. We’re all thinking of you and your brother.

385

I haven’t been able to check in the past couple of days, so I just found out about your brother. I just wanted to add to the many people saying how sorry we are for you, and to share something else. Friday night I was in the hospital with some friends of mine (who I don’t think are on this board). They had a baby boy, and they name him Tyler.

386

I’ve followed Tyler’s story from when you first wrote of him. Your posts have been so moving.

So many people have learned about Tyler because of Marley, and have learned more about Marley because of Tyler. You are both blessed by this and by the obvious love you have for each other.

Don’t cut anything from your song list for the memorial. Each song shows another side of Tyler and you and your family. You’ll be at the memorial for hours, why repeat anything, just let it play out, as the past years have played out.

I’m sorry for your loss.

387

Marley been wanting to share this with you. a friend of mine wrote it.
Agnostic’s Kaddish
(written by Eve Bloom)

Some tell me that you’re in a place
Of gold and angel song
Some tell me that you’re paying now
For all that you did wrong
Some say you fell asleep into
A quiet and endless night
I only know you’ve gone away
And will not ever write

Some say you’re watching over us
Protecting us from harm
Some say you’re now a newborn
Sleeping in your mother’s arms
Some say you’ve gone to where there is
No suffering or pain
I only know that I will never
Hear your laugh again

Some say you’re in a happy place
Of pretty girls and wine
Some say you’ve joined a sphere of light
Outside of space and time
Some talk of sure and certain hope
They know that it is so
I only know that you are gone
To where I cannot go.

388

Marley, my heartfelt condolences to you and your family. What a terrible painful thing to have to bear.

It is your brother’s youth that has struck me as I’ve read your posts. As a teenager I volunteered on the Pediatrics ward at Einstein Hospital on North Broad St in Philadelphia.

Once a week for 5 hours I’d go in and volunteer, visit, play with babies, change diapers, what have you. Assist the Docs by lending extra hands, etc.

There were two kids my age who died slowly during my tenure there ( 3 years + ). I went in at 14 thinking we were all quite immortal and stopped around age 17 knowing full well how fragile we all are.

It sounds like Tyler was a remarkable friend, brother and son. At 18 he had it all before him, yet knew that his time was ending. His presence in your life was a tremendous gift- just as yours in his was a source of love and strength.

He has left his suffering behind to be borne by those still alive. Mourn him well and in your way and know that those of us here who have followed this very private matter mourn for your loss each in our way.

In Peace,

Cartooniverse

389

Because at the moment, the music will be going an hour or two after the memorial ends and everyone leaves. But I think I’ll just deal with it then. If we’re running out of time I’ll skip some tracks.

I starting having those “oh, right” moments a couple of hours after he died, although at the time I chalked it up to just being caught up in the whirlwind of things. “I wonder if Tyler - oh, right.” We all got used to whispering around the house and had to get used to not doing that anymore. Bear with me on this, but I was standing in line at a store yesterday and for a minute, because I went back to work yesterday, I assumed it was Monday. So I wondered who was playing in the football game and was thinking about asking Tyler.
“Oh, right.”
Last night I was listening to some song I knew he liked and I thought about making a joke to him about it.
“Oh, right.”
I hate this. It’s going to be a long time before I can just go about doing whatever I’m doing without stepping on one grief landmine after another. It’s a pain in the ass and to be honest about it, this has been worse than I thought it would be. I thought that, having known for a long time that he didn’t have very long to live and having known for months that he was probably going to die this fall, I’d be ready. I don’t know how ready was defined exactly, but still. The truth is, this is very different and it’s much more final than I understood. Maybe I’m letting go of some things that were already long gone and that I hadn’t really let go of. Maybe I thought getting busy and doing things for him was more of a cure than it could be. It doesn’t really matter what it was or why.

I spent a little time today on the phone with a reporter for a local paper who will be doing an article about him. I gave her a timeline of what he went through and talked about his love of food, music, laughing, sports, his camp, and having a good time. His success with college, and how much he impressed us during this time. I think I said what I needed to, although doing it in a half hour summary felt kind of inadequate. My mom sent out her first email about our plans for the memorial, which is going to be the day after Thanksgiving. She didn’t disclose the time or the location, but at the end she promised it’ll be a party the likes of which they’ve never seen. I liked that. I think that’s what we all want. It suits him and us.

390

Oh my, I know exactly what you’re talking about. It will lessen in time, just not for awhile – it’s different for everyone. Most likely, it will never go away completely…you’ll just learn to get used to it.

“Time doesn’t heal the pain; it only makes the pain more manageable.”

Hang in there, Marley; all your friends are here for you.

391

In one sense, knowing someone is ill and going to die, can make the “after” part harder. You’ve spent months now thinking about him all the time, worrying and visiting and worrying some more; wondering how long, how will it be, how will he handle it, how will you handle it, how and when will it end. It becomes quite consuming.

And then suddenly, you don’t have to worry and you don’t have to wonder and you can only visit in your mind and there is an astoundingly large and deep hole in your life where all the worry and wonder had resided. It’s huge and it hurts and there’s so many things that can trip that default switch of thinking of that person. And then comes the punch in the gut that they’re gone. It can be the stupidest thing at the oddest moments and POW. And sometimes you just can’t believe it and don’t want to and you want to punch someone back and make it all change, even if it’s only to have him back in that bed. Just to have him would be good enough.

Plain and simple, Marley, it sucks and there’s just no way around that. It just sucks.

392

I don’t have any profound words for you. I just want you to know that I’m still thinking about you and your family. Thank you for letting us be a part of your life.

{{{Marley}}}

393

As I learned when my mother died after her battle with breast cancer, it doesn’t matter that you know intellectually that the end is coming. So long as they’re still around, you are in complete denial. And it makes no difference if the death is sudden and tragic (been there/done that, too), everyone will go through every single stage of grief.

Denial
Anger
Bargaining
Depression
Acceptance

You may repeat some stages after thinking you’ve gotten past them, but you won’t skip any, no matter what you knew ahead of time or not. Just knowing you’ll be like everyone else who’s lost a loved-one, facing and dealing with all of them, may help get you through the worst of them easier. You’re not alone. My "Oh, right"s lasted years. Can’t tell you how many times I actually picked up the phone to call my mother to share some news, even though she’d been gone for 2, 3, 5+ years.

But they do get farther between, and they do get less painful as you experience them. And some day you’ll actually be able to talk to your brother and feel joyful about whatever you’re sharing with him, instead of filled with pain and anguish.

In the meantime, be good to yourself.

394

Good idea. And don’t think the memorial will end when it’s supposed to. With so many close friends and family members, it wont. The location may shift, but there will be some who just want to stay to remember. Music is obviously important to you and to Tyler. I remember when Make A Wish made it possible for him to attend several Allman Brothers shows last year. I was taking my son for the first time, and we thought, what a wonderful way for you and Tyler to hang together, yet so sad that it was happening because of what Tyler was going through. We’ll be seeing the Allman Brothers every year because its something we can share, and when we do, I’ll think of Tyler for a moment.

The “oh right” moments. I call them “oops”. Two years ago my dad passed away, and for months I’d think of things to tell him about. I saw one in the paper today, in fact. The first times it happened, I felt grief, anger, and sadness. But now, those thoughts are a comfort, a way of remembering my father, mentioning it to my son and to others to help maintain and share the memory of who my father was and what was important to him. With time, I hope that feeling comes to you also; I expect it will.

Take care, Marley. Give our love to Tyler.

395

That is really beautiful. I’m trying to think of where I can save it away that I’ll remember it when I need it (hopefully not for a long time).

396

It is. Thanks for posting that, janis_and_c0.

I don’t have a problem with your posting this, but I’ve had issues with Dr. Kübler-Ross and her neat little packages for a while. I’ve experienced grief before - a friend of mine died a few months before Tyler got his initial diagnosis, which definitely affected how I was felt when we were told he had a tumor - and I never felt anything like denial. Shock and disbelief, absolutely. But denial means you’re rejecting what’s happening and I don’t think I ever had a moment of that. I’m not sure I ever did any bargaining either. I don’t know how accurately this describes anybody’s handling of tragedies like this. I don’t think it fits mine well at all.

All things considered I do feel better this week. I’ve been writing a lot the last few days, which has helped me get my thoughts together. It feels good to do something and it also feels good to make my memories more permanent. My father’s brother came back to town over the weekend and we played some music together. It goes without saying that it was sad, but we had a good time and it was a nice start as tributes go. I plan to sit with my mom on Friday when she gets her tattoo - it’ll be the roman numeral five thing that I got on my right arm, not the blue band - and we’ll be scattering Tyler’s ashes this weekend. The memorial is all set and I bet we’re going to have at least 200 people. I’m excited about that.

I heard back from the Chordoma Foundation today. They said $22,500 has been donated in Tyler’s name over the years. I think around $1,500 of that came from my friends and from people who have followed our story on the Straight Dope. That’s a very nice start even if I want to do a lot more.

397

You feel what you feel, you deal how you deal. There’s no right or wrong to grief.

Glad you’re feeling a bit better and best wishes for the memorial. Sounds like it’s going to be a great tribute to Tyler and a good experience for all involved.

398

Marley, I am so sorry. I’ve followed this story for years but have been away from the boards for a while. To see this when I come back hurts my heart, as my 8 year old says.

Peace and strength to you all.

399

While I share your disdain for touchy-feely psychiatry, the thing to remember is that everyone handles tragedy differently. Some “stages” you won’t experience at all (or skip them so fast, you don’t notice), while other “stages” present a major challenge. How you define each “stage’” depends entirely on how nice and tidy you want the process to be; but the path of grief recovery always moves from “I can’t believe this happened!” to “I’m okay with what happened.”

However:

My friend, that’s not what the word in this context means. Denial isn’t about rejecting reality, or even suppressing your emotions. Denial only means: “It Hasn’t Sunk In Yet.” Nothing more, nothing less.

Denial is actually a very important failsafe in the human psyche. When I tragically lost my beloved great aunt some years ago, denial was the only thing that kept me going to do what needed to be done – not only the funeral arrangements, but also dealing with the police and the media. Denial kept me at work and in control of my faculties, and after a short while I was even able to hang out with friends and have fun, without always thinking about what happened. You can’t remain in denial forever, of course…but as a short term fix, denial’s crucial.

Good luck with the book – writing is the perfect way to achieve catharsis.

400

It’s a little hard to know where to begin to catch things up to the present day. We went upstate over the weekend and scattered Tyler’s ashes at his camp, as he’d asked. Technically we did this in secret but I’m sure they’re going to know we were there. I spoke first and did part of the eulogy for Donnie from The Big Lebowski, subbing Tyler’s name for Donnie’s. And from there I talked about how he’d chosen the right place for us to go because no matter what happened to him in life, a piece of him was always going to be there. My other brother talked about being a middle child and had a good line about “I could spend an hour discussing Tyler’s virtues and another five about his vices…” and our mom spoke about how much he’d wanted to be here since he was maybe three or four years old, and how much this place meant to him throughout his life.

We did a little bit of a walking tour around the camp and then went down to the lake. My dad decided he wanted to get rid of the box the ashes were in by filling it with rocks and sinking it in the lake. He put a lit roach in there for good measure. Later we decided to throw 18 stones into the lake to represent the years of his life. As we were leaving I tossed in another to represent the part of a 19th year that he got, and for all the other ones he didn’t have.

Before we left my mom took my brother and me and showed us the soccer field and told us about the last time Tyler was there. He’d had already decided he didn’t feel well enough to go back to camp, but they were back for a day so he could pick up some of his stuff and hang out with his friends and campers. She was telling us she watched him walk a couple of hundred feet to the locker. He had his back to her. I’m not sure why the image was fixed in her mind exactly. Maybe because she wondered what he was thinking, knowing this might be his last time there. Or maybe it was one of his last independent moments, and she knew after he finished up at camp, he was home for good. Then again, at the time she didn’t know he was dying (or at least didn’t admit it to herself).

That night we had dinner at a restaurant near the camp and toasted his “magnificent” life. I don’t know if that’s how he felt about it. I would like to think parts of it were magnificent.

My parents and my other brother all kept some ashes for themselves - in small medicine bottles with a little bit of weed mixed in - and a portion of the ashes are going to North Carolina to be spread out on a friend’s home. I watched my dad portion out the ashes Friday night before our trip (I didn’t really do anything other than choose the music), and it was an incredibly weird experience. The funeral home dropped off his ashes in a white box that looks like something you’d send through the mail. When we opened that, we found a tight black plastic container with his name on it, and when we got THAT open, his ashes were in a plastic bag sealed with a white twist tie. It was just bizarre. My parents and I couldn’t agree about whether we should call the stuff in the box “him” or “it.” There wasn’t really a specific reason I didn’t keep any of the ashes for myself. It was more a question of ‘if I did keep this, what would I do with it?’ I couldn’t think of anything I’d really want them for or where I’d put them or anything like that. If I changed my mind I could probably get a little bit from my dad and my brother. I don’t expect that, but who knows.

My mom did get the tattoo Friday evening. She decided to get the Roman numeral symbol on my right arm instead of the band on my left wrist. I think she felt that was more meaningful because it represented us as a family rather than representing a memory or commitment. It’s is fine by me. The tattoo is just above her right wrist and she didn’t find it painful. I’m told her best friend was freaked out by the whole idea.

Planning for the memorial goes on. We’re talking about foods and who’s going to speak. Before our trip, we chose a lot of pictures for a montage. For the first part we’re just reusing a video from his bar mitzvah, a bunch of pictures from his childhood. The second part is more recent stuff, and I found some great pictures I’d forgotten about or hadn’t seen in a while. There are a some photos of Tyler goofing around or playing with the dogs that I really liked, and there’s one from one Thanksgiving where we’re standing in his room, posing with our instruments - I’m playing the guitar I re-bought for our dad, he’s playing an acoustic, and Tyler has his bass. The Allman Brothers will be in town next Monday and I think that bass is going to get used onstage one more time as a tribute. And that Friday we’ll be able to get together with a lot of people, have some fun for this boy and talk about how much we loved him. I’m looking forward to that.