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moof's prattling

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June 27th, 2004

asperger's, depression, my family, 'n' me. (long) @ 11:10 pm

Current Mood: aggravated agitated
Current Music: various mp3s from Bootie

Recent events (which I'll go into at some other time) had prompted me to write my sister (and parental units, by proxy) about why I've missed several Xmases at home. Here's what I wrote...
> When are you going to realize that me, Mom, Dad, and
> Jamie will all love you no matter what? It doesn't
> matter what you choose to do in your life, we still
> love you and want you with us whenever you can be.

I've never doubted that. I've never felt lacking for emotional support from any of you. That's never been a problem.

I don't know how much of the Asperger's stuff I've told you about, but it means that I often don't have the energy to deal with people, or social situations, or driving, or anything like that.

The URL http://www.udel.edu/bkirby/asperger/aswhatisit.html has some OK info, but it doesn't really give the full gist of what happens, especially for me. For one thing, I empathize really, really well with people, and can usually read their emotional states without any problem whatsoever; also, I have a really strong drive to be gregarious and social. (Some of that comes from the ADD.)

The really perverse bit is that while I desperately want to be social, and interact, and not be alone, I just can't deal with the drain. It's an internal conflict that I have to wrestle with on a day-to-day basis. I drain really quickly, and end up curling up in a ball for a while and shrieking incoherently when I hit empty It's no fun, and it usually takes me a couple of days to recover to a more normal state.

My emotional makeup has changed rather a lot over the past 2.5 years; going on the Wellbutrin (and then the other meds) did a lot to open me up emotionally. Before then, I couldn't cry unless it was a really ultra-intense situation, and things bottled up for months and months until I imploded. These days, I'm much more aware of my emotional state - but I'm also more beholden to it, too, and a lot of the time I'm still pretty fragile.

That's the real reason I didn't go home for Xmas last year - it felt like it would have been way too much, with no respite, no escape, and I couldn't deal with it. It gets extra intense because I do feel close to you all - and I can read y'all's emotions extremely well - and so I can tell that you want to be close (and so do I) but because I can't, that hurts; that sets up a gigantic feedback loop where I'm draining and in too much distress to do anything but pull away, making you feel bad and thus making me feel bad, and causing even more drain.

The worst part about it is that when it happens, there's nothing anyone can really do for me. I need to be by myself for a while, and slowly recover. Physical affection helps, but trying to (verbally) interact just exacerbates things. That's why I've been so loath to try and talk about any of it. It's a gigantic burden on me to bring up, I often don't express what I'm trying to get across very well, and if I'm misunderstood it makes me feel alienated. Of course, y'all can tell when I get like that, and try to help - but that's about the last thing I'm able to deal with when I get like that.

I've only started to recognize much of this out within the past year or so, much less been able to put it into words. That's another one of the reasons I've not talked about it - I haven't known what to say, or how to answer any of the questions. I don't mind questions at all, but I've been at an utter loss as to how to answer them until recently. (It doesn't help at all that these sorts of questions also come up most often on the phone, when I'm least able to respond.) If you have questions, please ask 'em, I really want to be able to answer. I've had no idea how to even approach any of this, what you wanted to hear or not.

And then, my Dad replies to the letter...

Your mother and myself read the forwarded reply that you sent to Kate. We pretty much understand a lot of what you have been going through, as we've seen you from the beginning, and see a lot of ourselves in you, as well.

I guess the main central term for most of the suffering is called Depression. At least that is what our Stephen ministry training calls it. We suffer from it ourselves, in various forms and to various extents.

Anyway, we are in your corner -- always. I always recommend prayer, specifically for God's healing grace. It is right and good to ask for His help, whenever we suffer. It's helped me a lot, most recently with my strange heart condition, when I was getting angina pain, and after the surgical procedure. Now we are obliged to proclaim His love and power.

So you are invited to come visit for Christmas, if you are up to it. We certainly would like to see you, but didn't think we should chase out to California unless you thought that would be especially good for you. I know your empathetic nature also, because I have that, and react very much the same as you do, apparently. So life's a challenge and it sounds like you have done really well, assuming your job is decent and pays and so forth.

I really don't know wtf to say to this. Doing well for myself is defined by my job and how much I get paid? That the main point of my missive - explaining some of the underlying causes for why I act as I do, some of the core reasons for my feelings of alienation from my family - can be boxed up as 'Depression' and that praying will make them go away? It makes me want to scream, "No! No! That's not it at all!" or wonder if my powers of description are really that awful that things can get misinterpreted so easily. Describing the anguish I had in not being able to go to weezyl's BBQ (and why I had it) seems like it'd be utterly moot.

 
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From:vvvexation
Date:June 28th, 2004 06:47 am (UTC)
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For what it's worth, he didn't seem to me to be saying that prayer would definitely help (though you'd know better than I whether or not he was implying it), more that that was at least one thing you could do. After all, people generally pray in order to feel like they're doing something when nothing else works.

Oddly enough, this sounded a bit like the responses I get to this sort of thing from my dad, who is generally a very clueful person but who doesn't always understand the exact things I'm going through and yet seeks to relate in whatever way he can. I, too, get frustrated with him when he recommends solutions that I already know won't work, but lately I've come to realize that he's just tossing out all the advice he can think of to give because he wants so badly to be helpful even when he doesn't know how, and thus I've become a bit more patient in my "no, Dad, it doesn't work like that"s.
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From:valree
Date:June 28th, 2004 04:57 pm (UTC)
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My dad is the same way too. It's most men's inclination to fix problems, and when they can't fix the problems of their loved ones, they can only offer advice. Ineffective or inappropriate as it may seem. What I'm saying is empathy is not a dad's strong point. And I think you're talking about something that is a little beyond his scope of understanding, so he's just offering his love, as bizarre and foreign as his brand of love may seem. It's hard for people who don't have the same issues to understand that their efforts may only contribute to the problem.
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From:elegantelbow
Date:June 28th, 2004 05:52 pm (UTC)
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*nod*

This is something Debra Tannen talked about in You Just Don't Understand. That men (in general) tended to offer advice first, and women (in general) tended to offer sympathy first, and that someone looking for one would be frustrated by receiving the other.

That's a lovely icon, by the way, where did it come from?
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From:valree
Date:June 29th, 2004 04:35 pm (UTC)
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Thank you! I made it... traced a photo in Photoshop.
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From:adoor
Date:June 28th, 2004 07:50 am (UTC)

hey, my dad only just learned to call it depression, rather than weakness...

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sometimes it's all about the baby steps...which drives me up the fucking wall and can't be any better for you. it sounds a little (and boy, i don't know you're dad, so i'm just taking this as writ) like your dad is one of the many people who kind of end up using the term 'depression' as a catch-all for emotional and psychological problems that don't amount to psychosis. this strikes me as being not uncommon--depression gets a lot of press, and is relatively easy for people to understand, and particular to your case, has some similar effects as asperger's (say, social anxiety, the point you made most clearly in your letter--good letter, by the way). autism means a certain set of things to people, and you don't perfectly fit that (because, hey, functional), so your dad tries to put it in to words that he can understand and relate to. ah, semantics.
i think the doing well for yourself bit is about more than the job and the money--it looks to me (*puts on editor specs*) as if that was just really badly said. i gather that he's referring to your having done well for yourself by doing all the stuff you talked about in your letter--working on issues, learning about your condition and behaviours, and getting stronger, finding ways to be happier. i think that the money part was tacked on because you'd addressed the fundamental parts of you, and he, being a parent, basically wanted to make sure that you could eat. you're working on the brain and the soul, so he was just checking in with the body.
most of what i get from this is that your dad is really trying hard to reach you, to be listening to you, even if it's going to take him some time to learn the words and to fully understand. in the mean time, he's writing to you, he's telling you about prayer not to suggest that it will fix everything but because it's given him strength and made him happier, and he wants those things for you. he's trying to relate to you, to give you the things that are maybe alike between you, as a stepping off point for him to come to terms with those things that are new and different. he talks about the path he takes, because it's what he knows, and maybe it could work for you, but i don't think that he's suggesting that it's the only way. i can't imagine that he doesn't know that you're smart enough to work things out your own way, too.
and maybe i'm just putting words in your dad's mouth here, but if i had a kid, i'd love it, and if i wrote that kid a letter like your dad wrote, that's what i'd mean. plus, you know, the editorial experience of sifting through what people say to figure out what they meant to say. that's gotta be worth something.
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From:savia
Date:June 28th, 2004 04:05 pm (UTC)
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It seems like your parents are like many parents - they want to care and give you parental guidance on what's ailing you, but they can only do that within their parameters of understanding. In an effort to make that connection, what they've done is relate what you're going through (or certain aspects of it) with something with which they're familiar (depression). I think most people don't know what Asperger's is, and so when they see you describing what sounds to them like depression, they automatically jump to that, then prescribe for you something that worked for them (prayer).

It sounds like your family really wants to care, and it might just take a little more dialogue and explanation to get them to understand. It might help to say, "I know this sounds like depression, and that's certainly part of it, but Asperger's is ..." Of course, the nature of Asperger's makes it difficult to do that, but it might be worth it. I dunno.
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From:elegantelbow
Date:June 28th, 2004 05:46 pm (UTC)
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Wow. Your letter to them reminds me so much of me. People have a hard time understanding how I can be very gregarious and social one time, and then just silent and non-responsive later.

I don't know your dad, but the emphasis I'd recommend putting on his letter would go like this:

Your mother and myself read the forwarded reply that you sent to Kate. We pretty much understand a lot of what you have been going through, as we've seen you from the beginning, and see a lot of ourselves in you, as well.
...
Anyway, we are in your corner -- always.
...
So you are invited to come visit for Christmas, if you are up to it. We certainly would like to see you, but didn't think we should chase out to California unless you thought that would be especially good for you.


It sounds to me like he's offering up suggestions that worked for him, but that what he really wants is for you to know that you're loved and that your family understands.
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From:merovingian
Date:June 28th, 2004 06:34 pm (UTC)
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Wow. That was really brave of you to send that message to them. It sounds like your father was trying to identify in some way, but just couldn't (or wouldn't) get his head around it.
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From:iphy
Date:June 30th, 2004 02:43 am (UTC)

What they said, mostly.

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A lot of these comments are very good. In particular I agree with your strength in being able to send this to your family (and share it with us, of course) and with adoor's comments regarding your dad bringing up your job and how much you make. It did sound like it was a very poorly worded attempt to congratulate you for the progress you've made on yourself while stressing that being able to eat and have a place to live are important too.

As for the "Depression" and "God" business. Well, have you seen the movie Donnie Darko? You know how everyone starts going to those seminars and then the whole world looks like a scalar between fear and love to them? His words, "I guess the main central term for most of the suffering is called Depression. At least that is what our Stephen ministry training calls it," sound an awful lot like that. My father-in-law is extremely fundamentalist Christian, and he does the same thing. As others have said, part of it is just trying to put things into terms he understands so he can try to grasp them and work with them. But, I also think part of it is that he really believes prayer is an answer for even the most serious things. I don't know your father; but I know my father-in-law had cancer recently and his response was prayer. It doesn't mean he thinks God will just wave a wand and cure things; it's just a way of approaching the world.

It's hard (for me, anyway) to have understanding for it. But, just as I want people like my father-in-law to respect that my way of approaching the world is different from them, I work hard to extend them the same courtesy. This is especially hard as many of them do not actually respect alternate approaches to life.

In any case, I would like to (again) say how impressed I am at your ability to share a thing like this with your family. On many levels I've never done this and I sometimes think I am the poorer for it. Way to go!

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