Emily

Reposting on this, the shittiest of anniversaries. I miss you, cousin  

Thanksgiving 2012

I had a beautiful cousin, whose name was Emily, and she died last week. She was 36.

Do you know people who just seem to "get" things? I don't know if I'll explain this properly, but I'll try. Emily understood things. You would explain something, perhaps badly, and she would just understand. I could switch from serious to sarcastic in a second, and she was always right there with me, the whole time; playing along. You could talk with passion about something that meant a lot to you that you couldn't tell anybody else, and Emily would get it. And it wasn't like you just thought she understood, she could repeat back her understanding of your situation perfectly, and she would be right.

Emily was on the same wavelength as me, all the time; but Emily was on the same wavelength as everybody; all the time. She was bipolar, and I think she lived her life feeling not quite the same as everybody else. She was introspective. And analytical. And smart. And so, so funny. And I think it was this combination of things: her immense intelligence, and the way she felt about herself in the world, that made her as understanding as she was. I felt so comfortable around her, and honestly I don't feel that comfortable around people in real life, most of the time. She had a gift.

Her loss will be felt very very strongly in my house. She was my regular babysitter and was here often and she had this incredible connection with my children. She would spend hours playing Pokemon with Child 2 (after he insisted that he teach her how). She listened as he rambled on and and on and on about whatever was happening in his Minecraft world. She was fun, and she was funny, and he loved being around her.  I'll never forget that the last time she babysat Child 2 was jumping up and down saying "YAY! Emily will be here in 10 minutes!!"

But her connection with Child 1 was the most remarkable.

As a parent of a child with autism, one of my hopes is that I can help him find adults who can act as mentors. Adults who have an understanding of his world and who have experienced similar things, who can help guide him through his life. Emily was not autistic, but I think that she spent so much of her life feeling "different" from everybody else, that it allowed her to create such a beautiful bond with Child 1, who is also so "different." She would tirelessly take him on elevator rides, and to the various stores that he wanted to visit. They watched BART trains together, and she never had a need to ask "why does he like BART so much?" she just knew. He loves his trains, and she knew how it felt to love something. She would often mention how much she could relate to him and his quirks. She got it. 

I already miss her so much. We didn't even talk every day, it was about once a week or so, but I already feel her absence from my life so strongly. My children will miss her so much, and I don't know if they understand what death really means, but I grieve for the sadness they will feel as they begin to understand the reality of her being gone.

The last few months had been hard for her; she had been struggling. In my phone I have the last communication we had; a text message I had sent her. It says "I hope you're doing okay. If you ever want to come and just hang out here you are always always welcome. < 3 " I don't think I will ever delete it. I'm just so glad that the last thing I said to her was that she was loved and she was welcomed. She didn't respond, but I hope she knew that I meant it.

I don't think this makes a whole lot of sense, my writing is choppy and I apologize. I'm very sad, and I'm doing my best to explain how awesome she was. Emily would have understood.

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If you are so inclined, you may be interested in making a donation in her name (Emily Salzfass) to Depression and Bipolar Support Alliance.

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10 years

April 3, 2013. This is the 10th anniversary of the day my brother died of cancer.

I don't even know what to say. It's been 10 fucking years. Here are some things I've written about him before:

• Today is April 3rd (#1)
• Today is April 3rd (#2)
• My Brother

In the last 10 years, my brother has missed Child 1's first steps. He missed Child 2 being born. He missed them starting to walk and talk, and then going off to school. He missed me starting this blog and being almost internet famous for a while there. He would have fucking loved that one. I keep wondering how many Facebook friends he would have, for some reason. Thousands, probably. But he probably would have created something like that of his own and would have been much more popular. More popular than Facebook. If anybody could have done it, it would have been him.

Anyway, I don't know what to say, I just wanted to turn my only public platform over to the fact that it's been 10 years. Fucking 10 years.

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Loss, and how a child explains death

I have no funny in me at the moment; that picture looks stupid. I was going for one of those things that I think they do on Tumblr where you say what your mood is. Not even clever-dumb. Don't try to deny it.

Anyway... we got the coroner's report. Apparently Emily had developed a rare heart condition, called Torsades de pointes, brought on by years of taking bipolar meds. Ironically she was wearing a monitor at the time, to try to figure out what was wrong with her heart, and they were able to determine the exact time and cause of death from reading the results. What can happen with this condition is that the heart will suddenly just stop, and unless you're actually in the hospital on monitors at the time, you will be dead within seconds. It's sudden and painless and it happened while she was sleeping. She would have had no idea what was going on, there wasn't even time to wake up and panic. Her heart just stopped, and that was it.

So, I suppose that's some comfort. I had been scared, thinking about her possible last moments, maybe panicking and terrified about what was going on, but apparently that would have been physically impossible. There was no panic and no fear; she was asleep, and then she just wasn't.

Of course this brings on all those "what-ifs" now. What if she had been able to turn in the monitor? They would have found the torsades and gotten her to a cardiologist? And, of course... what if she hadn't had to spend her entire life fighting demons; taking medication just to be able to function in the world. In the end, it was that fight that killed her; not even the demons, themselves.

Child 1 has been trying to process this, with his amazing autistic mind. It doesn't make sense to him that somebody's heart would just stop beating, so he has come up with an alternative explanation: she simply moved to a different planet, and he doesn't say that she "died," he says that she "became magical." So he'll say "When Emily became magical, she left the earth and went up into the stars. Then she found a new planet to live on and that's where she is now." He's also very concerned about Emily's sister Lizzie being sad and he asks about her a lot. He says "Lizzie doesn't need to be sad anymore, Emily is living on another planet." The amazing part of this, not only that he came up with all of this completely on his own, is that if Emily were the one to have to explain it to him, I'm 100% certain that this is exactly what she would have said.

She became magical and went into the stars to move to a different planet. If that's really where she is right now I KNOW that she has never been happier.

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Fuck you, cancer

We have this area in our house that has a very long section of floor; you can see by the picture, which I took just now, that today the space is used to spread out a really long piece of easel paper, and said paper is then used to draw elaborate BART tracks or elevator schematics. When Child 1 was a pre-walking baby, this space was used for him to crawl back and forth, or push his cart back and forth. Eventually, and also today, this space was used for him to run back and forth.

My brother died in April 2003, he was 35; in 5 months it will have been 10 years. One day when Child 1 was a baby he was at my house, sitting on the couch that would have been just off to the top left of that picture. Watching Child 1 crawl back and forth in that space I remember him commenting "wow, he really likes to go back and forth back there," or something like that; I don't remember the specifics. It didn't make an impact at the time but I guess it stuck in my mind, for some reason.

This was before our diagnosis, before Child 1 even had a speech delay; he was 15 months when my brother died. We had no idea, at the time, that this space would become significant in later years; when he would spend hours running back and forth in this space, this roomy space on the other side of the couch. Where he can now spread out his very long piece of easel paper and draw his most favorite things. There was nothing significant about his comment of my brother's, at the time.

Today, though, I will sometimes watch Child 1 flap his hands, jump up and down and run back and forth in this space, and my memory of that day is sparked. I remember what my brother said about that space behind the couch and I get angry; so very very fucking angry. My brother, who took notice of the significance of this back and forth space before any of the rest of us did: he's supposed to be here now. He was supposed to have been here when Child 1 started walking, when he was diagnosed, when he went through his home program, when his brother was born, when his brother started walking, when they both went off to school..... He was supposed to be here for this. He's supposed to be here now. He's supposed to know his nephews, to be the awesome Uncle who gives them treats and teaches them tricks that I disapprove of, who they want to hang out with when they have a day off. He was supposed to be here for them. They're supposed to know him.

He would have kids of his own now; I would have my own nephews or nieces. My kids would have these cousins, they would have their play house in San Francisco with all the toys and the games and the piano. This is what was supposed to have happened. But cancer had other plans for us, apparently. And almost 10 years later I still get so angry about it. So fucking angry.

This isn't how it was supposed to be.

It's not fair. It's not fucking fair.

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Fuck you, Universe. Or whatever your name is

Hubs and I were playing Rock Band earlier, and I was singing Rock Lobster, and apparently (unbeknownst to me, before today) I have memories of my brother and that song, and I was completely overwhelmed by feelings and thoughts of him.

I guess I need an outlet for this shit. Not just me telling another person how I feel, but the stupid universe needs to know that this dude was fucking awesome and it sucks for taking him away from us.

And, so... Fuck you, universe. Fuck you for not letting him be here right now. Fuck you. FUCK YOU.

It's not fair, what you've done. it's not fair. He should be here today. He should be here now, and he should have kids, and a family, and a house, and I should be able to call him or text him or email him or whatever and ask his opinion about things. And I should have my wise and amazing and awesome brother in my life right now.

Fuck you, cancer. Fuck you, Universe. Fuck you for making this happen. FUCK YOU. It's not fair. It's NOT FAIR. FUCK YOU.

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Today is April 3rd

9 years ago today I took BART into San Francisco to visit my brother, who had been in the hospital with advanced melanoma for almost 2 months. I had been there pretty much every day during that time and had gotten used to the routine of either riding BART or driving into the city every morning.

I had been the last one to leave the day before. They had moved him from a private room and back into the ICU, where he had spent a number of weeks previously. At some point they'd decided that he was doing better, so he was moved out of the ICU and into a room across the hall, but things were starting to get bad again, so he was once again wheeled across the floor and into an ICU room.

It was probably sepsis, we were told, and we thought we were in a waiting stage, so my parents had gotten back on the road to drive back to LA where they were still living at the time. I had stayed behind after they and my sister-in-law had left for the day, and my brother was put under sedation, presumably to let him get some rest so his body could recover some from this latest downturn. That afternoon I had sat by his bed and read to him from the Tibetan Book of the Dead, which he had asked me to do while he had still been conscious. I talked to him a little bit, about our childhood and about some loose ends in our relationship that needed some tying up. He was under sedation and I don't know if he was able to hear anything; but at one point I know that I saw his eyebrows move as if to acknowledge me. Or maybe that was just what I had hoped I was seeing.

The next morning I walked into the same room and it was like he had shrunk. He was smaller in the bed than he had been the day before; like it was swallowing him up. Next to his bed was his best friend Larry, whom we had known since Junior High, some 20 years before. Larry was standing there watching the monitors and he told me that he had been there for a few hours. He was watching as my brother's blood pressure slowly went down.

We stood there for a while, discussing what to do. I don't remember the specifics now, 9 years later. I called my sister-in-law on my cell phone and said "You need to get here now." She didn't ask or argue, she just hung up. The nurse turned down the monitor that was beeping incessantly, and the room was very calm, while Larry and I just stood there, watching. It was actually kind of a nice moment, despite the purpose for it.

Suddenly my sister-in-law burst into the room and everything became very chaotic. She climbed onto the bed, on top of him, and started screaming and crying. "Jill, call your Dad." She ordered. "I promised your Dad I would call him if he wasn't here at the end." So, I called my parents, who were in their car somewhere along the grapevine, and told my Dad that if he had anything to say, now was the time; and I held my phone up to my brother's ear while my Dad talked.

I don't really remember the next few minutes, I just remember chaos. I remember my sister-in-law shrieking "is he gone?" I remember the nurse turning off the monitor. I remember having to call my parents back because when I looked back at my phone my Dad wasn't there anymore.

I don't remember leaving the hospital. I know there was a gathering at my brother's house with my parents and a bunch of his friends, but I don't remember that, either. I remember calling my husband and he came into the city to get me but I don't remember riding over the bridge to go back home. I remember going home that night and an infant Child 1 pulled himself into a standing position for the first time.  It's funny, the things you remember.

(This is the post I wrote last year on this day. It's shorter.)

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Thanksgiving memories

Thanksgiving always makes me think of my brother. For obvious reasons, of course, because on days like this you think of family, especially family that is no longer with you, but I think of him especially on this day (he died almost 9 years ago).

He loved stuffing. Fucking LOVED it. Growing up, my mom always had to make a shit ton extra because he would scarf so much of it down. At his request, at some point during my childhood, she added sausage to her patented recipe, and that's the recipe I still use today. It's good stuff, man. Good fucking stuff.

His last Thanksgiving was at my house, with his wife, a baby Child 1, my parents and Hubs' sister and her husband. In the last year or so of his life he had been seeing some kind of Chinese doctor (apparently he was also the Dalai Lama's doctor?) who put him on this crazy diet of restriction, because such and such food causes a such and such in the body and such and such whateverthefuck.

I remember that he wasn't allowed to eat mustard, or poppy seeds? But the most important restriction, in this context. was that he couldn't eat any birds. BIRDS. He couldn't eat fucking birds on Thanksgiving!! So I made a separate bunch of stuffing, not cooked in the turkey, with pork sausage and a mushroom gravy. Not as good. I mean, it was good (because I'm a good cook, if I do say so myself), but it wasn't how it was supposed to be. He gave it his best shot and I distinctly remember him saying at one point  "fuck it" and going for a handful of the "good" stuffing. Because, really? Not eating any birds or bird products is really going to stop a stage 4 melanoma that had already spread to his brain at that point? I don't think so.

I hope he liked the stuffing. I'm sure he did but I don't remember specifically.

I miss him; on most days I miss him, but on Thanksgiving I miss him the most. I wish he could have some of my gravy, I know he would love it.

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Memories of my brother

For those of you who don't know, I had an older brother who died almost 9 years ago. Every once in a while I'm going about my business and something will remind me of him. This is a funny one so I thought I'd share.

Earlier I was chatting on Twitter (no, really) and I saw a conversation go by about bands that were fronted by bass players. Primus was the example used and I piped in with fIREHOSE, which is a band fronted by a bass player, Mike Watt, and it reminded me of this story.....

My brother was a big fan of fIREHOSE when he was in college and he used to go see them all the time. One year, I don't remember which, he was going traveling in Southeast Asia and was going to be out of the country for months. Before he left, he wrote Mike Watt a letter, telling him how much he was going to miss him while he was gone, and Mike Watt wrote back, thanking him.

I've always thought that story was both hilarious and adorable.

Here's my favorite fIREHOSE song, probably nobody has ever heard it. It's called Chemical Wire.

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Today is April 3rd

8 years ago today I stood in my brother's hospital room and watched him take his last breath.

I was trying to figure out what I should say about this day, and there are a few options.

I could talk about Melanoma; I'm sure there's a lot I could educate you guys on, but I don't really feel like it, honestly. Plus, I took my kids to a soccer game today and totally forgot sunscreen (try not to do that. There. You've been educated.)

I could write about him, but I've already done that.

I thought about talking about what that day was like, and what it's like to be in the room with somebody you love when they die, but I didn't really feel like re-living it all.

I thought about reminding you all that life is short and you should make sure to tell your loved ones that you love them while you still have a chance, but I think you probably all know that. Plus, it's sort of a theme of mine so you've heard (read) me say (write) it before.

I'm not going to do any of those things, I'm just going to have this post here as it is and I'm  going to say it one more time:

Today is April 3rd.

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I am changing the names of my children

For those of you who are cool enough to have listened to me on Autism WTF earlier this week, you will have already heard my confession. For the rest of you... the less cool people.... this revelation will be completely new to you.

My children are not actually named Child 1 and Child 2.

I know.

I KNOW.

You're shocked that I've been perpetrating this fraud against you for the uhhhhhhhhhhhh..... 9 months that I've been blogging; but it's true. These are not their real names.

Go ahead, take a moment. I'll wait for you to compose yourselves.

Does it really matter what I call them, though? I could be using their real names and just saying they aren't their real names, and would any of you know? Some of you would know, yes, but most of you would not. (I read on a new blog I saw the other day where a mom calls her kids Autie and Tippy. Get it? Autie and Tippy? So awesome. I don't remember where it was, but nice work, whoever you are!)

Well, apparently... to some people... it does matter. People who know them, and me, and therefore, by request, I am now officially changing how I refer to my children here on my blog.

First, the new names. This was written in the comments of some other piece of crap post that I wrote yesterday, by my awesome cousin Emily:

ATTENDEZ-VOUS! Readers of Y. GT. Child 1, the modelicious, chestnut-haired, autism-afflicted 9 year old man-cave dwelling viewer of BARTs and elevators shall be hereafter renamed.... BART! (You didn't see that coming, did you, Cousin Smo?)

His charming, sweet-talking, moon-showing cat-harassing gap-toothed five year old NT brother shall hereafter be known as TYGER.

BART AND TYGER.

Put THAT in yer blog and smoke it.

(The above is to be quoted wherever you see fit.) 

Okay, first of all, yeah. I didn't see Bart coming, and MAN is that embarrassing. Not only does it fit with his love of BART trains, it also fits with MY love of The Simpsons. So, really, it's perfect. And Tyger? I don't know what the fuck that is, but if that's what Emily says, then, fine.... that's what I'll do. (except, she tells me, that she almost named Child 2 "Santa's Little Helper." LMAO!!!!!!!!!! I might not have done it... honestly.... )

Wait. What? Since when do I take orders from anybody? Seriously, I don't normally do what people tell me to do. It's kind of this "thing" I have; in fact, usually, when somebody tells me to do something, I will do the exact opposite, just to piss them off. This can be a problem in the work environment. Good thing I'm a contractor.

Except, really, it's just a fucking blog, so who cares? And, there are some very good reasons why I would take an order about my kids' bloggy names from Emily, and nobody else (except hubs), which brings me to the point of this blathering:

- Probably most of you weren't reading my crap around Thanksgiving, so please take a moment to read this. It's not a trick, I promise! (THIS is a trick) That (first) link will take you to another thing that I wrote, about my cousin, and is important here because it explains a lot (and I don't feel like re-writing everything I already wrote a few months ago.)

- We are the geekiest family ever. She's been online since 1991 and has had the same username the whole time. I'VE been online since 1994 and have also had the same username. She's younger than I am, and has been online longer than I have! If my brother were still alive he would say that he's been online since 1987 or something. Our. Family. Rules. Teh. Geek.

- Emily was at my house last? week and was telling me about how she's a fan of all of YOU guys. Yeah, she reads everything you guys write. I mean, like... more than I do. I was embarrassed at how much more she knew about you guys than I did.

Here are some of the things she said when she was here (and I shit you not this is real, because I've been emailing with her while I was writing this, because I have the worst memory ever, and she confirmed it all)

- I love how Lynn labeled Audrey's shrinkey-dink "shiv" (I fucking loved that, too. SO MUCH.)

- It was great how Little Bird's birthday cake had her name spelled out in M&Ms and how cool that everybody wanted to be her friend??

- Isn't it funny how Griffin and Child 1 share the same love of elevator videos?

- I liked the video of the gluten free cook with her kids

- Moe and Jelly are adorable, and Jelly is such a good sister

Are you kidding me?? Could you be more awesome?

So, really, what it comes down to is that awesome wins here.

Child 1 = Bart. Child 2 = Tyger.

Fin.

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Wait. I should put WHAT there?

I was vacuuming out my car yesterday and was reminded of the following experience which I will now share with you......

About 6 years ago Hubs and I were shopping for a new minivan. I was pregnant with Child 2 and we had a 3 year old Child 1 in tow. We were obviously the perfect minivan buyers: young child, child on the way, eventual soccer mom, etc. and the sales guy was workin us hard to make the sale. He proudly showed off the features of this car (that we eventually bought, but not from this guy. sorry) and I shit you not, the experience went like this:

"You pull down this container from above your head to store your sunglasses. Or, you could put Cheerios in there."

"If you lift up the floor mats you'll find some more compartments for storage. You could put Cheerios in there."

"There are 427 cupholders. You could put Cheerios in there."

"See the pockets on the back of the chairs? You could put Cheerios in there."

I remember there was another pregnant couple there, and I said "Why does this guy keep talking about Cheerios?" They didn't get it, either.

But. I get it now. Oh... how I get it now.

Related

EDIT: These are NOT pictures of my actual car. I googled "honda odyssey interior" to find these pictures. THIS is a picture of my actual car. Hey, look! CHEERIOS!!

EDIT 2: By the way, I counted the number of empty ketchup packets that I removed while I was cleaning the other day. There were 10 of them.

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My brother

Today would have been my brother's 43rd birthday; he died of cancer on April 3, 2003. I thought I'd take this opportunity to tell you guys a little bit about him.

I was probably 2 here, and he was 5. I still do that thing with my mouth, by the way.

My brother was one of those people who was too good for this world. I know, it's weird, because there really aren't very many people like that, but he was one of them. His entire life was marked by good luck and fortune. Prom King, Homecoming King, Most Likely To Succeed, Most All Around... I'm not exaggerating, he was voted all of those things in high school. He was the most popular person who ever lived. He knew everybody at every school in our little section of the San Fernando Valley, and he was loved and adored by all of them; hundreds of friends, hundreds of admirers and people who had just heard "of" him. He was famous.

I fucking hated him. I did. I was 3 years younger and I spend my entire childhood living in his shadow. Starting from when I was in 7th grade, I was no longer Jill, I was "David's little sister." I had no identity of my own, until I left LA for college in Santa Barbara. It was actually weird to have people call me by my name, or to ask how I was instead of how he was.

I don't know when this was taken, I found it on Facebook

I went years barely speaking to him. I wasn't interested in his perfect life or what he was up to with his perfect friends and perfect everything that he had. I never called him, I only knew what he was up to because my parents would tell me. Except, we saw each other on holidays, and every time I was reminded of how great he was. Really, he wasn't that popular by accident, it was because he was a good guy. Funny as hell, with that kind of sarcasm that a lot of people just don't get. Super smart, good looking, charming and just really, really nice. I was torn, because he was really awesome, and there I was, hating him.

But, I got older, I grew up some (let's not go nuts), I gained perspective. I moved to the Bay Area where he was living, too, and we started talking and seeing each other more. In the meantime, he was busy getting insanely rich by being really smart during the tech boom of the 1990s; I actually did his books for a while. I was working in San Francisco where he lived, so we had lunch every few months or so. We actually became friends; it was cool, really, since he was still such a great guy, and who doesn't want to be friends with a great guy, right? We never got really close, though; I just didn't want to and I think he understood that.

He never had kids of his own. I think Child 1 was the first baby he'd ever held. Badly, as you can see

He was diagnosed with Melanoma in 1996. The next 7 years were spent with countless doctors, clinical trials, CAT scans, PET scans, drugs, hospitalizations, even a trip to China for a controversial treatment. It spread to his brain, anyway. The last 6 weeks of his life were spent in the hospital where he eventually got sepsis. We got close at the end, I was at the hospital every day. I was in his ICU room with his wife and his best friend when he died. He was 35.

I don't know, was he too good for this world? Did the star shine too brightly and was destined to burn out too soon? 8 years later and I've stopped asking why; that's just life, I guess and I can't continue to rail against the unfairness of it all. I'm mostly sad that he never got to know my kids, he definitely would have liked them; autism and all.

This is my absolute favorite picture. Look at that look of intense concentration. Classic!

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