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Feb. 8th, 2004 10:20 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
vaxjediThere are so many things to do, to say... This is a long ramble, even for me...
At this point, I really just need to construct my life. So much of it has been worn away.
I used to fervently believe in the remarkability of life, of its ability and potential to be fulfilling, amazing, astounding, mystical and all in all, good.
I still believe that. Really.
Okay, I'm not as fervent about it as I was. Now I'm fervently of the belief that life can be good... for other people. I am not too sure about myself. Yeah, that is pretty defeatist. So I need to climb out of this hole.
The hardest thing to deal with is the fact that the things that got me into this hole look like they are never going to be end. I got through the stress at work, the endless tesnion of living at Chaos Manor, the stress of dealing with a eeratic 9 year old who could beat the hell out of me all with the though 'This too shall pass.' I could give more, dig more out of the resources I didn't know I had because there would come a time when it would be all better.
And we've gotten a LOT of help. But it never ends. There isn't a day that goes by without some sort of tantrum from Miri. There isn't a time we go out where at some point we have to deal with an outburst from Miri that we have to deal with not only her but surly bystanders, whether it be comments or just dirty looks. (And Miri, generally speaking, has a mild case of SMS. I can't imagine what life must be like for parents of kids with more acute cases.)
But I digress. I've got to climb out of this hole. I've got to find a way to make life remarkable again, besides in the remarkability of my suffering and futility.
Okay, another digression. I think one of the most damaging statements in the history of psychology is "Well, it could be worse." I know people tend to make more of their problems than they really deserve. But I've always wondered about the reason people seem to defend their own suffering (and the extent of their own suffering) so viciously. They seem to fight to prove tha t they suffer, even to the extent of creating more of it. I think I have an idea. They aren't defending the suffering, but their suffering, that is, how they suffer about it.
You see, I think all except the most trivial emotions affect us very deeply. Especially pain, depression and despair. While my issues with Miri may be a lot less than someone who has kids with major disabilities, it still hurts. And it still pushes me to my limit. And while there are a lot of parents out there who have normal kids, the problems they have with their kids hurt like hell and pushes them to their limits.
Axiom: Negative emotions expand to fill available psychological space.
So we get upset, we are often told "Well, it could be worse." This often means "There are people out there who have much more to be upset about than you do. So you have no right for your feelings". That's where the downward spiral begins. Now we have to defend our very real, very traumatic feelings. Otherwise, we have to accept the idea that the real feelings that we are experiencing are 'overblown' or 'over-reactions'. i.e. that they are (at least in scale) fake.
That is what drives people to emphasize their pain and suffering. Because if they don't, they are afraid that these feelings which are running rampant through the core of who they are won't be taken seriously. They'll be belittled, called fake. And that undercuts who you are. How can you function when you're constantly told how you feel isn't real? How can you fucntion if you are taught by hook or by crook that you can't trust yourself?
(As an aside to my aside, I think this is the flaw of opressive religion as well - you're being taught to beware of the flesh, that your own self is the enemy or the tool of the enemy - youa re a victim of your own existance.)
Anyway, back to talking about me. It's ABC, the All Blade Channel - all Blade, all the time.
I want to live life again. It be a player in my life besides the victim of it. But how do I do that? One, I need help with Miri. Not just respite care and all of that. I need therapy. I need to find out how to cope and how to cope with the very real possibility that this parenthood will not only be a lifetime job, but a 24/7-with-no-vacation-time lifetime job. I'm going to have to deal with the fact that neither Eleri or I really have the skills to pull this off and we may not have the chance to really develop them properly.
One thing I will have to deal with is guilt. I feel guilty anytime I do anything for myself. I get myself lunch, and in the back of my head is the fact that that money could have gone to getting Eleri lunch, or gone to the store to get lunch for all three of us. Everytime I go out by myself, or sleep in a little or spend time by myself, I feel like I am abandoning Eleri, leaving her to her neverending doom of taking care of Miri at the exclusion of everything else in her life.
I've got to find a way to have a life. Something that I can share with Eleri and my kids and my friends. Because if I don't have that, I will never be anything but a resource to be used up and I'll be used up quickly with nothing to recharge me.
I need hobbies. I think that's why the cancellation of Uru Live hit me like a ton of bricks. It was the loss of one of the few hobbies I had that I really enjoyed. I need to get back into working on my languages a bit. I need to evolve Sinnish some more, pour into it the passion I once had for it.
Another digression: are there any artists out there who would want to work with me on the kanji-like version of Sinnish? I have the structure for it, but I just am not an artist. I need cool looking glyphs.
There is a fan-made Myst spinoff I've been working on. Im one of the linguists. I need to work on the conlang for that game, as well as learn more D'ni.
I need to work on my email game more. I have more ideas for things now to include into the background. I have three players, but it's going slow, as my lack of enegery has been taking away from my creativity and motivation. But I hope to get that back on track.
I need to connect with people I can see every day. I know there are a lot of people I love dearly who read this journal who are far away. And I wouldn't/won't give up any of you. But I just need some more daily interaction, from the friendly to the intimate. I need to experience it directly, otherwise I will never be able to handle people in general again.
Or maybe I just need to find another person who I just connect to so well on so many levels that I have to keep in regular contact with them consistantly. So powerful a connection that distance won't dim it even if it is required. I envy Ari and Eleri that connection sometimes.
I need to reconnect with my spiritual path. I don't know where or how. Maybe chaos magick. Maybe urban shamanism. Maybe put down the ideas of the jade Mother and the Rapture pantheon. I don't know. But I need to find something that means something to me personally and find a way to express and commemorate that regularly. Otherwise it'll just fade away again.
Digression, fit the third (or fourth?): I don't really like a lot of standard holidays, Xmas, Easter, Thanxgiving, etc. I've never had very good associations with a lot of them - they were always sort of forced things on me as a child and sometimes they feel forced on me now. However, I just don't connect with the pagan holidays anymore either. I was never an agrarian sort of person, so harvests and such never rung true to me. The esbats seemed like a better idea to me in general as a regular exercise of faith, but they all seemed to meld together - "What are we going to do this full moon, Brain?" "What do we do every full moon, Pinky?..."
I envy the Jewish holidays. They have great meaning, they have definite meaning. The secularized Christain holidays in America have this sort of weak feeling to them - they seem to commemorate things that we should be commemorating all the time - Peace on Earth, Good Will Towards Men(tm), or Mothers Are Cool or such. But the high Jewish holidays seem to have a great mixture of general and specific meaning.
I dunno. Maybe I'll just never be satisfied with any of it.
But I've got to find some way to express that urge in me. In both structured and creative ways.
I need to take better care of myself, get healthier. This will probably be the toughest one for me. I've never been good at it. But I need to more than ever now.
I need to sleep more. I'm having a lot of trouble with this. I am, by nature, nocturnal. But work requires me to be there by 6am. So I am up almost every day (a fact that would astound all of my college professors to no end). But I tend to stay up late. It's the only time I get to do adult things, since Miri is asleep. And I am more creative late at night. So I sleep less and live more or sleep more and live better.
I used to hate going to sleep. It made the pain of the next day come sooner. And sleeping at night seemed like such a waste of night time.
I am working on what I eat, slowly. Food is a major minefield for me. So much trauma from childhood - my sister decided it was her job to whip her fat little brother into shape. So food is political for me.
But I'm moving on it slowly. I am drinking diet soda almost exclusively. With how much soda I go through, that's a bit source of sugar. And now I'm slowly trying to reduce the amount I eat in one sitting. It's slow going, especially with all the stress - it makes me want to eat more. But it's a step, I think.
As for my gender issues, I don't know what to do. A lot of the things I've tried to do seem to aggravate them. Sometimes they provide a release. But a lot of the time, they just remind me of what I am not and bring the lack there into painful focus. And, honeslt, a lot of the genderfuck look just does nothing for me. So I need a different path. Find a way to meld what I am and what I need into something I can do. To have a male body and a female soul in a way that is practical and fulfilling.
And now, comes the inevitable line about sleep. As in, I need to. As per usual, I've typed for so long that it is late. And I have yet another early morning tomorrow.
At this point, I really just need to construct my life. So much of it has been worn away.
I used to fervently believe in the remarkability of life, of its ability and potential to be fulfilling, amazing, astounding, mystical and all in all, good.
I still believe that. Really.
Okay, I'm not as fervent about it as I was. Now I'm fervently of the belief that life can be good... for other people. I am not too sure about myself. Yeah, that is pretty defeatist. So I need to climb out of this hole.
The hardest thing to deal with is the fact that the things that got me into this hole look like they are never going to be end. I got through the stress at work, the endless tesnion of living at Chaos Manor, the stress of dealing with a eeratic 9 year old who could beat the hell out of me all with the though 'This too shall pass.' I could give more, dig more out of the resources I didn't know I had because there would come a time when it would be all better.
And we've gotten a LOT of help. But it never ends. There isn't a day that goes by without some sort of tantrum from Miri. There isn't a time we go out where at some point we have to deal with an outburst from Miri that we have to deal with not only her but surly bystanders, whether it be comments or just dirty looks. (And Miri, generally speaking, has a mild case of SMS. I can't imagine what life must be like for parents of kids with more acute cases.)
But I digress. I've got to climb out of this hole. I've got to find a way to make life remarkable again, besides in the remarkability of my suffering and futility.
Okay, another digression. I think one of the most damaging statements in the history of psychology is "Well, it could be worse." I know people tend to make more of their problems than they really deserve. But I've always wondered about the reason people seem to defend their own suffering (and the extent of their own suffering) so viciously. They seem to fight to prove tha t they suffer, even to the extent of creating more of it. I think I have an idea. They aren't defending the suffering, but their suffering, that is, how they suffer about it.
You see, I think all except the most trivial emotions affect us very deeply. Especially pain, depression and despair. While my issues with Miri may be a lot less than someone who has kids with major disabilities, it still hurts. And it still pushes me to my limit. And while there are a lot of parents out there who have normal kids, the problems they have with their kids hurt like hell and pushes them to their limits.
Axiom: Negative emotions expand to fill available psychological space.
So we get upset, we are often told "Well, it could be worse." This often means "There are people out there who have much more to be upset about than you do. So you have no right for your feelings". That's where the downward spiral begins. Now we have to defend our very real, very traumatic feelings. Otherwise, we have to accept the idea that the real feelings that we are experiencing are 'overblown' or 'over-reactions'. i.e. that they are (at least in scale) fake.
That is what drives people to emphasize their pain and suffering. Because if they don't, they are afraid that these feelings which are running rampant through the core of who they are won't be taken seriously. They'll be belittled, called fake. And that undercuts who you are. How can you function when you're constantly told how you feel isn't real? How can you fucntion if you are taught by hook or by crook that you can't trust yourself?
(As an aside to my aside, I think this is the flaw of opressive religion as well - you're being taught to beware of the flesh, that your own self is the enemy or the tool of the enemy - youa re a victim of your own existance.)
Anyway, back to talking about me. It's ABC, the All Blade Channel - all Blade, all the time.
I want to live life again. It be a player in my life besides the victim of it. But how do I do that? One, I need help with Miri. Not just respite care and all of that. I need therapy. I need to find out how to cope and how to cope with the very real possibility that this parenthood will not only be a lifetime job, but a 24/7-with-no-vacation-time lifetime job. I'm going to have to deal with the fact that neither Eleri or I really have the skills to pull this off and we may not have the chance to really develop them properly.
One thing I will have to deal with is guilt. I feel guilty anytime I do anything for myself. I get myself lunch, and in the back of my head is the fact that that money could have gone to getting Eleri lunch, or gone to the store to get lunch for all three of us. Everytime I go out by myself, or sleep in a little or spend time by myself, I feel like I am abandoning Eleri, leaving her to her neverending doom of taking care of Miri at the exclusion of everything else in her life.
I've got to find a way to have a life. Something that I can share with Eleri and my kids and my friends. Because if I don't have that, I will never be anything but a resource to be used up and I'll be used up quickly with nothing to recharge me.
I need hobbies. I think that's why the cancellation of Uru Live hit me like a ton of bricks. It was the loss of one of the few hobbies I had that I really enjoyed. I need to get back into working on my languages a bit. I need to evolve Sinnish some more, pour into it the passion I once had for it.
Another digression: are there any artists out there who would want to work with me on the kanji-like version of Sinnish? I have the structure for it, but I just am not an artist. I need cool looking glyphs.
There is a fan-made Myst spinoff I've been working on. Im one of the linguists. I need to work on the conlang for that game, as well as learn more D'ni.
I need to work on my email game more. I have more ideas for things now to include into the background. I have three players, but it's going slow, as my lack of enegery has been taking away from my creativity and motivation. But I hope to get that back on track.
I need to connect with people I can see every day. I know there are a lot of people I love dearly who read this journal who are far away. And I wouldn't/won't give up any of you. But I just need some more daily interaction, from the friendly to the intimate. I need to experience it directly, otherwise I will never be able to handle people in general again.
Or maybe I just need to find another person who I just connect to so well on so many levels that I have to keep in regular contact with them consistantly. So powerful a connection that distance won't dim it even if it is required. I envy Ari and Eleri that connection sometimes.
I need to reconnect with my spiritual path. I don't know where or how. Maybe chaos magick. Maybe urban shamanism. Maybe put down the ideas of the jade Mother and the Rapture pantheon. I don't know. But I need to find something that means something to me personally and find a way to express and commemorate that regularly. Otherwise it'll just fade away again.
Digression, fit the third (or fourth?): I don't really like a lot of standard holidays, Xmas, Easter, Thanxgiving, etc. I've never had very good associations with a lot of them - they were always sort of forced things on me as a child and sometimes they feel forced on me now. However, I just don't connect with the pagan holidays anymore either. I was never an agrarian sort of person, so harvests and such never rung true to me. The esbats seemed like a better idea to me in general as a regular exercise of faith, but they all seemed to meld together - "What are we going to do this full moon, Brain?" "What do we do every full moon, Pinky?..."
I envy the Jewish holidays. They have great meaning, they have definite meaning. The secularized Christain holidays in America have this sort of weak feeling to them - they seem to commemorate things that we should be commemorating all the time - Peace on Earth, Good Will Towards Men(tm), or Mothers Are Cool or such. But the high Jewish holidays seem to have a great mixture of general and specific meaning.
I dunno. Maybe I'll just never be satisfied with any of it.
But I've got to find some way to express that urge in me. In both structured and creative ways.
I need to take better care of myself, get healthier. This will probably be the toughest one for me. I've never been good at it. But I need to more than ever now.
I need to sleep more. I'm having a lot of trouble with this. I am, by nature, nocturnal. But work requires me to be there by 6am. So I am up almost every day (a fact that would astound all of my college professors to no end). But I tend to stay up late. It's the only time I get to do adult things, since Miri is asleep. And I am more creative late at night. So I sleep less and live more or sleep more and live better.
I used to hate going to sleep. It made the pain of the next day come sooner. And sleeping at night seemed like such a waste of night time.
I am working on what I eat, slowly. Food is a major minefield for me. So much trauma from childhood - my sister decided it was her job to whip her fat little brother into shape. So food is political for me.
But I'm moving on it slowly. I am drinking diet soda almost exclusively. With how much soda I go through, that's a bit source of sugar. And now I'm slowly trying to reduce the amount I eat in one sitting. It's slow going, especially with all the stress - it makes me want to eat more. But it's a step, I think.
As for my gender issues, I don't know what to do. A lot of the things I've tried to do seem to aggravate them. Sometimes they provide a release. But a lot of the time, they just remind me of what I am not and bring the lack there into painful focus. And, honeslt, a lot of the genderfuck look just does nothing for me. So I need a different path. Find a way to meld what I am and what I need into something I can do. To have a male body and a female soul in a way that is practical and fulfilling.
And now, comes the inevitable line about sleep. As in, I need to. As per usual, I've typed for so long that it is late. And I have yet another early morning tomorrow.
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no subject
Date: 2004-02-09 09:49 am (UTC)How is your respite care situation these days anyway?
I think you're right that you and Eleri need some kind of outside emotional help if you're going to emotionally survive this. My number one suggestion: find a spiritual community. Unitarians might work - there are lots of pagan Unitarians. Second, therapy (have you looked into all your options there?). Third... well your other friends and I are not counselors, but I and I'm sure other friends of yours would be happy to be a listener for you and/or Eleri. You could set up appointments just like seeing a shrink, and just vent and be comforted and maybe get a little practical advice here and there, like "keep breathing" and "make time for sleep".
I knew a psychiatrist once who changed careers (became a history teacher) because he came to the conclusion that a good friend and/or good community was better than a shrink any day. He felt like he was only enabling people not to go out and make real friends and find real communities.
Whether he's right or not is one thing, but it's certainly an interesting perspective.
Anyway, I can't do much else for you, but I can play shrink or go to church with you if either is at all appealing. I promise you that neither one is any imposition. If it makes you feel better, you can play shrink for me too - these days I need it just as much, and I trust you. Or maybe we can help each other look into co counseling.
There's a whole community out there called co-counseling. You go through a brief training and then enter a network of co-counselors, I think. When you need counseling, you call them, and sometimes they call you. I just did some online research and found their wesite poorly designed and highly uninformative, and I also found some terrible rumors about them online, but the people I've known who were involved have always been extremely cool, together, happy people, so it might be worth a try, especially if it's as cheap as I understand it to be (no investment, no harme done).
Anyway, whatever you do, never ever ever feel guilty for your feelings (of course, that includes feeling guilty). Your feelings are natural and understandable, and anyone who says otherwise is simply wrong. You are going through something extremely difficult, even for rich people with extended, loving, rich families and close, loving spiritual communities. Yes, even they would be depressed about it, and scared, and probably also feeling guilty and second guessing themselves all the time.
You and Eleri don't have any of those advantages, and if you happen to have some that others don't... well, that's really irrelevant isn't it? I mean, sure it can bring strength to feel gratitude for one's blessings, however few they may seem at a given moment. But dwelling on the misfortunes of others can hardly help you in any way. What matters most is your present reality and dealing with the real life feelings you're feeling. You need to validate your own pain. It's very real and very justified.
Much Love,
Rhia
Re:
Date: 2004-02-09 03:05 pm (UTC)I have't really reached out very much to people, simply because it feels like being my friend is a major commitment of resources for people. Suddenly it's not just hanging out with me, but being a support for me and my family and then helping us do stuff and the spiral spins downward from there. It feels like we burn our friends out rather quickly. Also, I'm just painfully shy. I never know what to say anymore. My hobbies really are obscure, so it's hard to share those with people as well.
Maybe I can work on that more. You can catch me on AIM at some point if you do that sort of thing.
no time
Date: 2004-02-09 01:18 pm (UTC)no subject
Date: 2004-02-09 03:43 pm (UTC)I don't know if you read my post about the Frankl guy's theory - his ideas came from being in a concentration camp - so for me it was easy to say - well I'll never have to deal with something that bad so I can try to apply this to my cushy life. Well the things that are making your life difficult are long term and in some ways out of your control. I'm not trying to say that living with a child with SMS is as bad a a concentration camp - but I am saying that being able to find a positive emotional response to the situation is more challenging than anything I've faced in my life.
The thing you mentioned that sparked for me is the need for therapy - what I heard is that you need a community that is going through similar things and can understand what you are going through. I have recently found a spiritual group that has a similar approach to the Other and I feel like I've been given a new key to myself. What a wonderful new outlet. I would love to be able to send you a box with something similar for you. Here have a community! but I don't think it works that way. but surely there must be communities that get together to talk about having kids with SMS. maybe not enough close by for a group you can physically attend - but maybe something online? or a callin group or something? Would your social worker (I thought you mentioned a social worker at some point) be able to help you find a resource like that?
Again - I'm happy to hear you looking for ways to take care of your needs. I so want a happy Blade.
I am "praying" for you.
no subject
Date: 2004-02-09 03:47 pm (UTC)And I send you many hugs, and wish there was something more I could do beyond that.
no subject
Date: 2004-02-09 10:57 pm (UTC)no subject
Date: 2004-03-06 01:03 am (UTC)Love this. :) I enjoy a few connections but they've faded over the years (7 years for my longest connection, average of 1-2 years), though they are still something I pull on regularly, as they pull with me. Such a web is a neat thing. I hope you can build one. :)