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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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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Sunspots have faded and now I'm doing time

Somebody thanked me today for a post I wrote about 6 months ago, ironically it was a post I had written in response to people thanking me for posts I've written. She said it saved her from despair, and it got me thinking about how I have apparently gained myself this reputation for speaking the truth about things, but I haven't been doing very much of that lately. So, I thought I'd do it again and explain the real reason why I've pretty much stopped blogging: depression.

I'm struggling. Hard. The last 6 months or so have been really difficult. I've been depressed my entire life, at some point in the last 10 or so years I just came to terms with the fact that my brain chemistry is fucked and I would need to be on some kind of medication for the rest of my life, but apparently they stop working after you've been taking them for 20+ years and so I'm currently in the middle of trying to work out the chemistry in my fucked up head, and it's been an enormous struggle.

I know I'm not the first person who has stopped blogging because of depression, in fact I know that a few of my blogging idols have gone that same route.

Right now I'm in this place where I bounce back and forth from being semi okay to being very very not okay; it's completely unpredictable and I'm literally a slave to my emotions. Some days it's all I can do to just get the bare minimum done, and even then I don't do it all that well. Blogging, or being funny, or being eloquent, or being meaningful,,,, is simply impossible. Even typing this words right now is a huge effort for me. So I'm just waiting.... waiting for the brain chemicals to figure themselves out and for things to get better. Fuck, waiting is hard.

I'm not really sure why I'm writing this. Is it to "de-stigmatize mental illness?" I've always hated shit like that, it sounds so phony. Do I feel the need to "come clean" about where I've been? I don't know, I don't think I owe anybody an explanation. I'm not doing this for your pity (turning off comments, sorry), this is not a cry for help, and I'm definitely not asking for advice; it's just more informational than anything else. This is what's going on with me. I bet it's also what's going on with a lot of you. I guess we should talk about it? Will that help?

So, I'm just writing this to get it out there, I guess. I mean... what's the worst that can happen? That the world will know? Isn't that the point of this truth-telling reputation I've gained for myself? To be honest about the good and the bad and all that's in between? Although maybe this is too honest; too much information. I don't know. If I end up regretting this, I'll just delete it.....

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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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Cancer is bullshit

I think there's a meme or a hop or something with that name, but I don't know exactly who or where. I don't mean to steal it, I'm just joining in on the sentiment.

I'm not even going to go into details, because I know that every single person reading this will think "yeah, fuck cancer!" The details aren't important, really: somebody we know, somebody we love, somebody we admire, somebody we met once... they had a family, they had friends, they had kids, they had a career..... They were loved and they are gone now and they will be fucking missed. 

And, once again, we all need to remember that life is short. All we have is today, even with a goddamn hurricane outside, but find the people you love and tell them that you love them. Don't assume that they know, don't assume that anybody knows anything; if you don't tell them, they might honestly be unaware. Make a point of it. Do it today.

Tell them you love them. Tell you them you appreciate them. Tell them.

Tell them because cancer is bullshit, and any one of us could be next.

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Fell in love with a boy

There's a boy that I love; with all my heart. Sometimes I love him so much it feels like there's no room for anything else in there.

I see him every day, and want so much for him to talk to me, but he usually does not.

I talk to him, and he doesn't answer me. I try to get him to notice me, but he's interested in other things.

I spend a lot of time watching him walk away from me.

When he walks away, I feel a longing in my chest. It's a heavy, pulling sensation on my heart and in my throat; it's almost physically painful

There's nothing I can do to change this. I can't insist that he stay, because it will only drive him farther away. I have no choice but to let him be; to watch him walk away.

This is how autism makes me feel: like I'm a high school girl with a crush on a boy who doesn't know I exist.

Not all of the time; just some of the time.

Enough of the time.

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Whitney Houston R.I.P.

Goddammit. I don't know how she died or what the circumstances were, I don't read tabloids or care about gossip, but goddammit!!!!!!! She was only 48, and one of the greatest singers who ever fucking lived.



People always used to make fun of this song, but I remember being in college and watching this video and being fucking completely blown away at the way her jaw would shake with the rhythm of her vibrato and just wishing that I had that kind of talent, even if just for a second of my life.

Not fair, man. Fuck.

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I am gonna stand my ground

Hey Henry, can you hear me?

Let me see those eyes.

This distance between us,

can seem a mountain size.

- Rise to Me, The Decemberists

I've started and stopped this post at least 5 times in the last few weeks. Some days I have it all written out in my head, but when I get to the computer I can't get any of it out. And some days I just sit here and listen to that song over and over again and feel sorry for myself. No matter what, I know it's not going to come how exactly how I mean and I'll probably have to explain myself with multiple edits...

Child 1 has never had a major regression and he's always been very affectionate and loving/able, but lately it's like he wants nothing to do with me. The only thing he ever says to me is "I'm hungry" and "Can we go now?" and "Good," when I ask how he is or his day was. Otherwise, it's like he's not even here. I don't know if this is him getting older, or some type of regression, or just part of the ebb and flow of parenting, but it feels different than it ever has before. Like I'm losing him; like I've lost him. But there's nothing I can do except let it happen because my struggle to get him to come closer will only push him farther away and I just have to ride it out and hope there's something on the other side of this.

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and that's when I lost all faith in humanity

I was browsing around reddit earlier, reading rage comics, which I love (normally), when I found one written by somebody who works with autistic kids in an elementary school, referring to himself as a "tard rangler." I'm not going to show you the comic, since most of you don't know what I'm talking about, anyway, and I think it would just be more confusing.

Anyway, I was upset, and I left a comment, of course, knowing that it would be wildly unpopular, because they hate shit like that over there.

Y'know, it used to be that I didn't really have an opinion about what they call "The R Word," but which I prefer just to say: retard. (Kind of like saying Voldemort). Look, I blogged about it over a year ago. But in the last year, Child 1 has experienced the beginnings of what will likely be a lot of bullying in his future, and even though that word was never used by any of the kids at his school, I seem to have grasped onto it as the symbol of everything he's going to suffer at the hands of other people in his lifetime.

I know, maybe more than anybody, that people on the internet like to play a role, because the anonymity of the internet keeps them safe from having to take any real responsibility for their words. And I know that people will say things on the internet with the intention only to piss people off (that's called "trolling," and people do it on reddit all the time, just because it's fun for them). And I also know that people, especially on reddit, like to take the moral position that you should be able to say anything in the world you want to because the 1st Amendment gives you that right. But there's something about a person who would so gleefully say to a mother of an autistic child "I'm sorry your tard is such a burden," with the sole purpose of making me angry, that makes me lose all faith in humanity.  I'm not easily offended by much, as you guys might know, and I'm not even sure if I'm offended by this as I am just really sad. Really really sad.

Because this is what my kid is facing in the years ahead of him: having to be around people who think nothing about saying and doing whatever they want because they think it's funny. These people, who might be pushing him and physically hurting him and actually calling him a retard to his face. These people, who call themselves "tardcharger," and who think it's hilarious and perfectly acceptable to say things like this.

Just to be clear, I'm not saying that anybody should be censored, my problem is with the thought process of a person who thinks that this kind of thing is okay. People actually think that this kind of thing is okay. How do I protect my child from people like that? The truth is that I can't. And that's why I'm sad now.

UPDATE:

Update 2:

The kid who originally made the comic emailed me and I'm confident that he's cool. He's young, and saying things like that on reddit will get you karma, and I'm sure that's what he was going for. But, the fact that he wrote to me, and felt bad, convinces me that he's cool. The other dudes, though.... that's a whole other story.....

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Sometimes autism makes my heart hurt

I'm a firm believer in letting my kids, both of them, be who they are. Oftentimes that can come in direct conflict with how you're technically supposed to be raising a child with autism, which is to force him out of his comfort zone often enough to get him used to the social situations that he would normally want to avoid.

I'm not really comfortable with that, to be honest, and sometimes I think I'm "doing him wrong" by not doing this kind of thing more often, but it just goes against my every parental instinct. If he doesn't want to socialize, I'm not going to make him. I'm not sure how this will work out for him in the long run, but for now I know it's what he prefers.

This means, however, that when we're all hanging out at home, it's usually hubs, Child 2 and myself in the TV room, doing family stuff or whatever it is that we do, and Child 1 is in another room, drawing or looking at train videos or looking at a book or something. Occasionally he will wander into the room (more like pass by us on one of his stim laps) and we will ask, beg, plead, bribe, cajole.... for him to stay and hang out with us and do what we're doing, and he will always say no, and then run/jump/flap out of the room and back to what he was doing.

It makes me sad. I mean, I don't feel rejected by him, I don't think he doesn't love us or want to be in our family, I just know that he likes to do his own thing and hanging out with us is not his thing. I can't make him stay in the room with us, and I don't even try (especially if a bribe of chocolate doesn't even work), but... man I wish he would. Not just to stay in the room because he's being forced to, I wish he wanted to stay. I wish the four of us can hang out like a family the way the three of us do. I don't mean that I wish my child was different or a different person, I just mean that sometimes I feel really sad because autism makes him run away from us and I just want so much for him to stay.

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Amy Winehouse R.I.P.

I'm sad about this; I'm really sad. I thought she was amazingly talented and have been following her career for the past few years, along with the rest of us, and for some reason I kept thinking that she was going to be able to pull it together. It's really no surprise to anybody that she died of an overdose, particularly me, but... I don't know. I didn't think she was going to end up this way. I thought she was going to make it. Maybe I'm naive. Maybe I just had a higher opinion of her than anybody else did.

The first song I heard was Rehab, on the radio; I'm no Winehouse hipster or anything, I heard of her at the same time as the rest of you. At first I was confused by it, though, because it sounds so much like a 1960's girl group, but I had never heard it before. Was it a cover? But, no, that was just her style; not necessarily mine, but okay. I read some articles about her and was profoundly struck by something she said once in an interview: "I write songs because I'm fucked in the head and need to get something good out of something bad." She obviously had her demons, who doesn't, really? But there was something about that line that made me take a particular interest.

I saw that video of her fucking up horribly and what struck me most about it wasn't how much of a trainwreck it was, it was to wonder how the people around her could have let that happen? Not that they let her get on stage in that condition, but that they let her even get to that condition. She's on tour, I think that concert was in Serbia, and she's surrounded by people all day long. She also had obviously been drinking and doing drugs all day long, while surrounded by people? Anybody who actually cared about her would have never let that happen, which must mean that she spent her days being surrounded by people who didn't really care about her. Add that to the the demons she already had and it was no wonder she was an addict. She may have been supremely talented, but she was also in obvious pain; a lot of it, and apparently the people in her life weren't willing to help her.

And why is that? Well, that's just the culture we live in, right? She made a lot of people a lot of money by being a huge celebrity trainwreck. Nobody had any incentive to help her get healthy, where is the money in that? All the while the public watches with gleeful abandon as her life completely falls apart, because there's nothing we like more than to watch somebody's spectacular failure happen in the public light. It puts our own lives in perspective. Hey, things might suck for me, but at least I'm not Amy Winehouse, right? And now, of course, we wait eagerly for the results of the toxicological examination so that we can say things like "Oh my god, she had all of that in her system? What a fool! No wonder she died!" and then we can all feel really superior about ourselves; because she's dead, and we're not. She was weak; that would never happen to me.

I'm not saying this tragedy is any worse than any other; I can keep things in perspective, but like I said, it makes me sad. There was a woman with enormous talent, with public demons and very obvious pain, and she's surrounded by enablers who want to keep her like that. What chance did she really have, anyway?








EDIT: I hate having to clarify myself, but I obviously wasn't completely clear the first time. Yes, of course I know that you can't stop an addict who wants to continue to use. Perhaps even one or two of the people in her daily life actually made a half assed attempt to try? Possible, I don't know. I'm not saying that the fault lies with anybody except the addict herself. But it's probably true that most of the people around her 1. had a job to do and 2. were just there so they could party with her. Even if you take away the alcohol in her hotel room, when 10 people show up at the door with heroin, does the lack of alcohol really matter? It's hard enough for an addict to try to quit when they're just a "regular" person, but when you're surrounded by people whose livelihoods depend on you continuing on as you were, or by a huge bunch of "fans" who want to be able to say that they partied with Amy Winehouse in her final days, and then sell the pictures they took for thousands of dollars... she never had a chance. That's what I'm saying.

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Lost friends & song of the day

"Life may be sweeter for this, I don't know.

See how it feels in the end."

I had a good friend in college, Brent. I can't remember any Dead show I went to without him in the 6 years I was going to shows. He was a nutjob; always talking, really funny, so much energy. He played guitar very well but couldn't sing to save his life, although that didn't stop him from trying. He did a LOT of drugs. He drank bleach once, just to see what it was like. He said it burned like a motherfucker but that night he had the most vivid dreams he'd ever had. The older he got, the more nutjob-ey he got, because it turned out that he was bipolar, which explained the constant talking. Hubs and I moved to the Bay Area, had some kids and kind of lost touch with him. The last time I saw him he was so heavily medicated he could barely make it through a conversation without falling asleep. Today would have been his 41st birthday; he killed himself about a week after he turned 35. Anyway, today I am sad and thinking about friends that I've had over the years that I've lost, for whatever reason. This song reminds me of one in particular. I probably could have found a better version, but.... meh. I have no words of wisdom except to remind you all to hug your loved ones while you can.

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