Being Alice: She Is My Own Brain

[brightrosefox]

If you are with me in person, and I suddenly yell out and fall to my hands and knees and scream, do not be alarmed. Gently help me stand and help me to a soft place to recline. I may be unable to speak properly, and I may be unable to remember certain things. I may lick or bite my lips, I may scratch myself or pull my hair or vocalize oddly. Take me in your arms and say comforting words. If I start crying, let me cry. Tell me everything is all right. Kiss me gently on the forehead. Offer me tepid water, or coconut water, or juice, or tea. I will need to be hydrated. If I get up and start stumbling around, take my hand and follow me. If I head toward a bathroom, help me in; I will most likely be able to take care of things on my own, as it will be a very automatic process. When I am done, lead me back to the couch, chair, bed, etc. Continue to hold me or hold my hand. I may be very dysphasic and emotional. I may also be very empathic, so do your best to stay calm, with a good bedside manner. Offer me foods like fruits, crunchy bacon, pastries, dairy, vegetables, protein. No bread; I might choke.
If I start speaking oddly in a very intense manner, it may be due to one of my spirit guides helping me speak. Serena, Amara, or Amber, since Alicia can't speak outside the rabbit hole, looking glass, and Wonderland forest that directly affects my epilepsy. Serena helps me through chronic pain and fatigue. Amara helps me through any psychological distress such as anxiety, depression, and fear. Amber monitors my entire consciousness and soul. There are reasons they are named their names. These guides are fictional characters I created long ago, characters who took on their own "personalities" to become a sort of overall coping mechanism. While Serena and Alicia remain deep inside my psyche, Amara or Amber may speak through me and alongside me to work my mouth and voice if needed. You see, Amara and Amber have been with me in various forms since I was born; my brain created them in my intense creative imagination as purely fictional ways of coping with my life. Serena and Alicia came later, as ways to continue fueling that creativity. These girls are not real, but they are certainly helpful.
After I am affected by a seizure, I may also be affected by various complexities from spastic ataxic cerebral palsy: fibromyalgia, sensory processing disorder, synesthesia, hypersensitivity, ADHD Inattentive and Over-Focused Types, Obsessive-Compulsive Disorder, hypertonia, hemiparesis, hemiplegia, severe anxiety or even actual panic, problems speaking and moving, drooling and possible gasps, choking sounds, or odd vocalizations, memory disintegration, spasms, emotional outbursts. Try to not be surprised. This is technically normal for me. You can ask me questions and I may reply one way or another
Complex partial seizures via temporal lobe epilepsy are different for most epileptics. For me, having cerebral palsy, these seizures can be extremely fascinating and bizarre.
I will add that this all happened approximately an hour before I wrote this, and the main reason I was able to type this out was because Amber and Serena helped. My body and mind are both in an altered state. Reality is swimming right now. I just banged my arm against the wall, and the only reason I felt it was because of that part of my brain that is still processing the outside world.
Yes, please ask me questions of all kinds. Nothing is off limits. Speaking out helps me understand my own brain and my own intense neurology.


***
Edited to add:
I just got a really fascinating comment on Facebook since I copied this whole post there. I'm going to post the person's comment and then my comment. I'm still not sure what to think. Was I too harsh in my reply? Also, I still don't know what sort of point they were trying to get across:


Them:
'Ok not trying to be rude but who are you seeing for counseling? Because quite frankly if you are feeling that way it might help to talk to a professional. And if you are seeing one they frakking suck. No one should have to vocalize these feelings on line. You need an outlet. Life sucks for all of us. We work our asses off thanklessly all day long. Some at jobs. Some at home. Everybody I know is dealing with the mental/physical breakdown of being an adult. I will be happy to help in any way i can but I DON'T know how to help you!!! I come home from work every day in physical and emotional pain. And ya know what it is par for the course! I do not have the same physical limitations you do but I do have arthritis/ 10 hr days/ mega PTSD and bad joints!!! And i deal with it because i have to. What do you need that you are not getting that your friends can help you with!!! I will never say you are ok. Or should be ok. I will however say that none of us are. And we all have to work with the hand we are dealt and either make something of our lives or succumb to the negatives. What can we do to help you!!!?'

Me:
'First of all, wow. What?
Second of all: My psychotherapist is actually wonderful. She is perfect for ME. She doesn't "frakking suck" - in fact, within the span of two years, she has helped me open up to many things I never would have imagined, helping me heal myself from within.
The reason I vocalize this online is because I am a disability advocate, as well as an advocate for epilepsy, cerebral palsy, and fibromyalgia. Friends have actively requested that I post my experiences on Facebook and blogs. That is the only reason I am willing to talk about it publicly. I have learned that keeping silent means that others feel alone, lonely, and desperate; many of them feel that they have no one to talk to.
I don't post this to actually ask for help; I post this to help people with similar disabilities understand and share. I am honestly not sure what you're getting at. You're not being rude; I am just very puzzled. I am perfectly aware that everyone has problems. There are people who are much much worse off than me. There are people who may never talk about their pain online and that's just fine.
This is not the Suffering Olympics. This is not My Pain Is Worse Than Your Pain. This is not an example of You Think That's Bad? Check This Out!
This is I Am Sharing A Personal Experience So Others With Similar Issues Can Understand And Share Similar Experiences.
Are you trying to tell me that I shouldn't talk about my disabilities on Facebook? If you are, get in line. I did not realize that you had such an issue. I wish you would have come to me sooner, maybe in a private message. But I suppose this is a good way to get it out and a good way for both of us to talk about our feelings. You have chronic pain. You handle it your way. I have chronic pain. I handle it my way. Good for both of us. Why would I ask for help on Facebook? Most people I know don't even live close enough!
As far as this actual post... it was in reply to someone's request. How do I feel during and after certain seizures? What are things that I do? If a friend is with me, what can they do? This has absolutely nothing to do with my asking anyone for help. This is a clinical, simple way to explain what happens. If it bothers you, feel free to tell me. But I'm not going to change what I do or why I do it.'

Them:
I am in no way shape or form trying to be critical and my apologies if it came across that way. But I have many friends who have similar disabilities (some less some more severe) and I don't see them in nearly the physical/emotional pain you seem to experience all the time. I don't know if it is just that you talk about it more (and if that is how you cope then that is awesome for you) but to me you just seem SO focused on the pain and the negative impact of your condition that (and this comes purely from an associates degree in psychology which is worth practically nothing) that in some ways you could be making it worse for yourself. Look... I worry when people I care about are in pain. Especially constant pain. If you had a friend who was depressed and all they seemed to do was talk about how depressed they were and how much their life was misery you would reach out and encourage them to seek help right? I know what you are experiencing is not depression. But it is worriesome to outsiders looking in when they see a friend who seems to be so focused on the hard parts of their life. I'm not the type to beat around the bush. My apologies for being so blunt. But we have had too many friends of ours recently 'reach out' without ACTUALLY reaching out who ended up taking extreme measures and I just wanted to make sure this was not some cry for help that we were missing. In my own blunt caustic way this is me trying to be a friend and make sure that you are ok.

Me:
Thank you, but this is always how I have dealt with my issues. This was not a cry for help. I am not focusing on any negative - I am literally talking about my life so my friends who want to know can read. This was nothing more than a post about one epileptic seizure. Not depression. I am just wondering: if you have been so worried, why did you wait until now to make a comment on a simple seizure post? Why didn't you write me a private message? Or comment on an actual depression post? You're trying to compare me to people who have extremely different ways of dealing with their issues. I am not them. I am not you. I am me. And I am my own cope. This is how I cope. This has always been how I cope. But if you've been reading my posts for this long, you should have known that I never post desperate cries for help. If I need cheering up I ask to be cheered up. Otherwise I send people private messages asking how they cope. And in case you didn't know, none of my posts are ever secret cries for help. They are "This is what is happening right now" posts. And nothing more.
See, I've never been fully negative. I'm not going to apologize if all my posts seem like that's all I talk about. I'm not going to put smiley faces in every status post just because people think I can't shut up about things happening in my life. I don't think you know me very well. I am well adjusted. I am very happy. There is nothing in my life that is falling apart. If I need to reach out, I really really do reach out. In fact, I don't shut up about it. In fact, my friends actually tell me to stop talking when I pause for breath. I actively seek help. I have seven freaking doctors. I have a mom I talk to all the time. I am in no shortage of help. And I am certainly not draping any of my Facebook posts in thin cries for help. I'm actually slightly offended, because the friends who know me best know very, very well that if I wanted to cry for help, I would email them, pick up the phone, or go to them and physically cry until I felt better. Why would I do that in public on Facebook? What's the point? Like I said, I'm a disability advocate. That means I talk. A lot. In public. Where people can see what I'm going through. I also have blogs. Where I talk. A lot. In public. Where people can read. Facebook is simply a smaller outlet - I know a lot of people here who WANT to know how I am.
You see why your comment left me so confused? I have no memories of our actual friendship, then out of nowhere you start scolding me in a clinical epilepsy post about how I seem to focus on the negatives.
I should add that my issues are certainly not negative. My life is a fantastic dance. My personal disabilities are bumps on the dance floor.
How about the next time you want to worry, please look for a post where I say I am actually depressed - not a seizure post, please.


UPDATE!
She messaged me privately finally and also apologized in my public post. We were all right - she was overly stressed and in pain personally, and she had an intense knee jerk reaction to my seizure post. Since she was going through some incredibly painful mental things, she projected onto me. Her apology was so sincere that I was more than happy to chat and relate and ask if *I* could help *her* in any way. I mean, this does not excuse her behavior, but it does help me understand WHY.

***

Yeah, sometimes I forget that people just don't... don't click. And I'm realizing that sometimes people who think they're my friends really are not.

Comments

[miintikwa.livejournal.com]

I didn't realize we weren't friends on FB, but reading this, my knee-jerk desire to protect you makes it such that that is probably a good thing at the moment!

Grr. Argh.

[brightlotusmoon.livejournal.com]

What, you mean from the person who commented?

So, what do you think? I'm still confused? It was almost like they had bottled up that comment for a really long time. And here's the funny thing - they barely know me, aside from being an old friend of my husband's. So they must have been reading my FB posts for a while and randomly decided that this post I made was a good time to unleash a bunch of feelings. But I am just really confused. I don't understand what they were trying to say. We don't actually know each other, we almost never talk on FB, so... um?

[miintikwa.livejournal.com]

Yes, that's what I meant.

And I agree-- it seems like they're unloading on you, and a lot of that seems to be internal pain and issues. It's like you ended up standing in for the people that hurt them...? You know what I mean. Feh.

[brightlotusmoon.livejournal.com]

Yeah, I think I get it! That's why I was so weirded out. Like, why pick me and that particular status post? I've posted stuff just like it on FB and they never said a word. They really do sound like they're unloading on me. Like, okay, they have arthritis and PSTD - lots of people have one or the other or both. But why did I suddenly become the stand-in for their woes? And why did they decide to pick on my therapist? Did they finally get fed up with me posting about my issues? Did they ignore the parts where I kept saying I was an advocate? Why didn't they message me privately? Did they want all our mutual friends to back them up and 'scold' me? And of course, the whole "I'm not trying to be rude but..." was pretty clear that they were about to take out some issues on me.

[brightlotusmoon.livejournal.com]

FYI, you know my real name, right? You can find me on FB with it. :)

[el-esteleth.livejournal.com]

Oy, ouch. The comment from FB came off as a bit hostile to me when I read it. But I'm just as confused as you are about what exactly they're trying to say/get you to do/express, except for a lot of anger/pain/something, which I don't think should honestly be directed at you.

When I read this LJ post earlier, before the FB edit was added, I just thought "Oh, this is another aspect of my friend that I get to learn about." I had a few questions to ask, but I hadn't commented because I was afraid they might be too personal and wanted to sit with them a while before deciding if I would eventually comment, and so I came back to the post just now and saw the edit.

I think you are quite patient and kind in your reply to the FB comment, and what you express as your reasons for posting your experiences is what I've thought your reasons were before they were spelled out. I feel that it is important to share our unique experiences and that way we can all become more compassionate, knowledgeable, and can get to know people outside of ourselves, and I for one am grateful that you share.

[brightlotusmoon.livejournal.com]

Oh, you can ask anything! :)

So you think I replied fairly? I told the truth, and I was going to say more - gently and kindly, because I really did see the comment as sort of hostile. I felt like it should not have been posted on my status. I mean, I don't really know the person. I had no idea they had arthritis and PTSD - why would I? They never talked about it. And that's the thing. If you don't talk about something, why the hell would you blame someone for not knowing? It kind of felt like an attempted slap in my face, like, "Well, everyone has problems, so quit talking about yours where I can read it!" And of course I gave them the idea of, y'know, not reading.

[el-esteleth.livejournal.com]

I think you were INCREDIBLY fair and kind in your reply. I felt that their comment was like a slap in your face and it also felt to me like one of those one-upping, "my life is far worse than your life because of 1, 2, 3, so quit talking about your horrible life" kind of comments. I did try really hard not to feel thus, but I felt angry that someone would post such a comment in reply to your very clinical and informative post about yourself.

I think that it is very good that you also pointed out that they do not have to read your post if they don't like it.

One of the questions I wanted to ask was about Serena, Alicia, Amber and Amara. You mentioned that they've helped you since you were young. Did you tell anyone when you were younger about Amber, Serena, Alicia and Amara?

[brightlotusmoon.livejournal.com]

Nope, when I was young I didn't know they were there - not consciously.

[el-esteleth.livejournal.com]

When did you consciously realize they were there, and helping you?

[brightlotusmoon.livejournal.com]

In college, around 1998, '99. I was around... hmm. 19, 20? And only Serena showed up back then. Alicia showed up after I was diagnosed with epilepsy in 2006. Amara and Amber didn't actively turn up until very recently.
I think I have a tag for them - Spirit Guides, Spirit Guardians, something like that.

[el-esteleth.livejournal.com]

I found the tag and am reading through the entries at the moment.

See, my questions are kind of leading up to me possibly discussing my DID with someone who might possibly wouldn't think I was completely crazy right off the bat. (And that's not me saying that I'm thinking your Guides are DID because I don't.) Oy, and my brain just stopped forming coherent thoughts now.

[brightlotusmoon.livejournal.com]

It's okay; I understand. You can definitely talk with me.

I know it might seem like DID, but it's essentially Healthy Multiplicity, as this post discusses:
http://brightlotusmoon.livejournal.com/1618634.html

[el-esteleth.livejournal.com]

I'm reading that linked post right now, but didn't want to take too long to reply for worrying how late it might be for you. Don't want to keep you up late and things.

I've gotten through about half of the posts with the Spirit Guides tag (before I checked comments and looked at the linked one) and I think it's really a great way you've made of coping, your healthy multiplicity.

I was diagnosed with DID in 1996, but I tend to not talk about it because the few times I've tried to open up about it, the people have freaked out.

[naamah-darling.livejournal.com]

I'm also all over comments on that post, as you've seen. Also not DID, but with a strong set of inner people. Coming to appreciate it really does sound like I have some form of healthy multiplicity. So, if you have anything you want to discuss or questions or whatnot, I'm also happy to answer as best I can. If not, just know that there are people who don't judge and aren't scared. <3 Not nearly as many as there should be, but we do exist.

(I hope neither you nor our hostess minds me breaking in to say that.)

[el-esteleth.livejournal.com]

*waves* I read through about half of the comments on the linked post before I ended up crashing last night. I actually went and added you as a friend at one point, cuz your comments are interesting, both on that post and on other posts here on this journal. Hope that was ok and stuff.

My brain is still in the terrified zone of talking openly about DID with people, because that has consistently not ended well in the past. But then, talking about what the DID originated from has also not ended well in the past, so there's that.

It is encouraging to see that there are people out there, even if few, who are willing to talk about things with an open mind. :)

[oneonthefence.livejournal.com]

I have DID (and have since my childhood traumas, but was formally diagnosed in 2005), and I don't mind talking about it anymore. I did see the friend request, so I'll add you. :) I'm at the beach right now with limited Internet, so I really won't be able to have full conversations until I return (Tuesday), but absolutely feel free to contact me! Unlike with healthy multiplicity, I lose large periods of time, and my alters do talk to me, do things to me without my knowledge, and so forth. But we can discuss that elsewhere. But I did want to let you know I'm in the DID minority, too, and am here to listen and talk.

[el-esteleth.livejournal.com]

Cool. Have lots of fun at the beach. :)

I lose periods of time, too. And for me that's the terrifying part, wondering what has gone on, etc. I do a LOT better now than I did for decades, but it's still scary, and the times where it's triggered and the switching can't stabilize gets really frustrating and confusing and *shrugs* yeah. Heh. It sounds crazy. And usually I feel crazy when I try to talk about it. I mean, the therapist I see now I don't feel really comfortable talking with her about the DID, but yeah.

Anyway, I'll hush now and let you get to enjoying the beach. :) Yay beach. That's one of my favorite places.

[brightlotusmoon.livejournal.com]

Yeah, she is one of my dearest friends, and she has had a lot of experience, and I think you'll enjoy talking to her. :)

[el-esteleth.livejournal.com]

*nods* The post you linked me to a few comments ago seems to indicate that as well. The kinds of open talking about difficult and unknown and rare things that you do in your LJ are very helpful, at least to me. I don't always comment, because I don't want to intrude or invade your process, but I read almost everything since whenever it was we friended each other. :) Somehow, I completely missed the linked post though, but maybe I missed it cuz I wasn't at the right frame of mind to be ready to at least attempt to talk to someone openly about things. And my brain is still screaming "Run away, fast" right now, but I haven't run away yet, and that's a good thing. :) And it looks like I might have made two new friends now, which is great.

And holy rambling, Batman. Sorry, my brain is not allowing coherent thought and sentences and stuff now cuz it's in the terrified zone. But I guess what I was trying to get at was thank you for posting as openly and honestly and clinically as you do. That takes a LOT of bravery, in my humble opinion.

[brightlotusmoon.livejournal.com]

Oh, sweetie, you are NEVER intruding or invading! PLEASE comment and ask questions and share things! Let me say right now, don't listen when your brain screams at you to run away. It's worth it, I should know. :)

You see what a fascinating discussion this one post has opened up? I rarely get over two dozen comments on a single post like this! I love it, I really enjoy it.

[el-esteleth.livejournal.com]

*nods* It's a great discussion. I love discussions, too. I just have to get to a place where I feel safe enough that it's ok to be open and things. I'm still working on reading the last few comments on the linked post, and the distinctions that are made between what I have/experience and what you and naamah experience are very clear.

With the DID, it's something that is a part of me for as long as I can remember/can't remember, because there are huge pieces of time (some of them years long) that there's NOTHING, just a kind of black hole missing. I only started being aware of what was going on later in my teens (I'd notice drastic handwriting changes and sentence structure changes and I started to puzzle out why no one would wonder where I'd gone to when *I* existed in the warm black hole space) and then when I finally got to see a psychologist when I made it to college, and explained all that to her and she put the final piece together for me. Since then, I've become more aware and stable and *sighs* I don't know. Words are not wanting to come out of my brain.

Guess Brain can only be brave in little teeny tiny steps. Hehe.

[oneonthefence.livejournal.com]

The beach has been pretty awesome (we come home tomorrow night), so I can't complain, though my son (James) does have the flu, so our last beach day was spent inside. Poor kiddo.

Anyhow, losing periods of time (for reasons unrelated to physical health, because I lose periods of time during seizures, but at least I understand WHY and the entire process there) to alters, or to dissociation, is definitely terrifying. I always check with people I know and trust to see if I've done something, spoken to someone, gone somewhere, and so forth. I check my pockets. I check the bank account. I look to see if the doors are unlocked. I see if there are cuts on my arms. Everything has to be checked. Luckily, within my system, no one seems to pop out when I'm alone with my son, but when no one is around, or if others are around - or if something triggers me badly enough - boom. Gone. And I have severe amnesia, so actually, most of the first 28 years of my life are gone. When I get memories back, they come in huge flashes, and I'm usually so shocked that I stay in bed for a bit or end up in a psych ward (8-10 visits a year is typical for me, but if you read back in my journal a bit, you'll see that). I can handle things better now after years and years of stays in specialized trauma units and some good therapists, but my alters don't want to get on board - well, not all of them - with integration. So I'm striving for co-consciousness, though it may takes years, if not decades.

Healthy Multiplicity definitely exists, but it is also definitely different from DID - the latter is more trauma-based, and results in a ton of memory loss. Also, we didn't create these personalities - they are fragments. And that's okay, too. They needed to protect us. I just have a hard time saying "they" are "me," if that makes sense.

You don't sound crazy when you talk about it - it's just a complicated thing. I get it. But it's a true psychiatric disorder, brought on by trauma. It's not crazy. Really.

Feel free to talk to me at any time - my email is mandi@theredgreenillusion.com if you want to have a private conversation. I don't mind a bit. And I'm curious how you came to discover your disorder, and how many are in your system. Also, if it helps, I just dissociated yesterday. My 13-year-old, Carmen, came out while I was with my son, husband, and parents on the beach. She screamed "beach!" and started running towards the ocean. My husband had to stop her, and my parents took my son while Carmen was out for a bit. I have no memory of this, but - it happened. The trigger was something small - well, kind of small. In 2009, I got caught in a riptide while swimming (I had just been diagnosed with Lupus and RA, but I thought I could still do everything...), and almost drowned. A friend and another swimmer saved me, but it was a close call. I think I must have remembered that - well, someone in my system did - and protected me, so the fun-loving, sweet Carmen came out to have a good time (I don't know how most of my alters got their names - they just have them). So it happens. We deal. But it IS hard.

*hugs if wanted*

[el-esteleth.livejournal.com]

*hugs* I emailed your email. :)

[oneonthefence.livejournal.com]

I'm getting ready to put my computer away for the night (and the long drive home tomorrow!), but I'll be in touch with you as soon as I can - probably Tuesday or Wednesday, when we're unpacked and settled back at home. But I'm so glad you did email me, and I can't wait to chat. :) *hugs*

[el-esteleth.livejournal.com]

Have a safe drive home. :) Am looking forward to chatting as well. *hugs*

[naamah-darling.livejournal.com]

I am right there with you in your interpretation, and in your response, which was extremely fair.

[brightlotusmoon.livejournal.com]

I just added more comments from the other person, and my response. I'm STILL confused. Because when did we become friends? If they cared SO MUCH about my mental health, why didn't they just email me?

[naamah-darling.livejournal.com]

I see a little bit more where they're coming from now, but it's still like . . . I don't see how they could miss that there was no distress in that post, any more than there was distress in my "how to deal with the short-armed art monkey when she is having a panic attack" post, which IRL friends thanked me for rather extensively.

I don't see how sharing your limits with others, and sharing how to help you when you need help, qualifies as coming from a place of pain, much less as a cry for help. Although however ill-expressed, that is kind of her, if her motivation was genuine, to be concerned that someone might be missing a genuine warning sign, and concerned they might not be getting the help they need. Graceless, maybe, but casual concern for others is not a bad thing. It was just couched in a bunch of stuff that sounded really, really . . . IDK. Blamey? Judgy? Misinterpret-y? I am having trouble articulating. She seemed really angry and defensive in her first comment (defensive when nobody had said anything to her, even) and seems to have backpedaled a bit, now. IDEK. She doesn't seem like a bad person, really, but she really mis-timed that jump and fell into the snake pit.

What with the "if you're talking about this at all, it must mean you're miserable" thing, she certainly doesn't seem to understand "This is a thing I do for myself, and also for other people, because it is actually necessary."

I laugh to think what she'd think of ME, because I am NOT happy, I AM in pain, and I STILL talk about it, and how is that a bad thing? I certainly don't feel like it's perpetuating negativity to talk about the negatives. I admit, I've wondered, and I restrain myself from posting a LOT, because I don't want to overwhelm people, but if I feel better when I do it, it's not a bad thing. Bad that I HAVE to maybe, but not bad that I DO it, any more than it's bad to take pain pills for pain. It's bad that you HAVE to, but good that it works. (But we know how people hate that, too, for no real reason other than "DRUGS BAD, NATURE GOOD." I am evolving new muscles to eyeroll.)

[karalianne.livejournal.com]

The FB comment (which I didn't see on Facebook, just here) reads to me like they think you're delusional with the spirit guides and whatnot. If you were (which you aren't, hello) then yes your therapist would be crap. But you aren't delusional at all; this is a healthy coping mechanism. Not one I myself employ (the only voice in my head is my own), but I can see that it's healthy in the way you talk about it.

It's similar to me having to be careful about talking about my God-stuff if I'm in counseling. It's a big part of my life, but the instant you say anything about God talking to you the counselor gets that glint in their eye that says "oh, maybe she's schizophrenic!" Even though God doesn't talk to me with a voice (he uses pictures and emotions), it is rarely distressing, and I am never told anything negative whatsoever.

[naamah-darling.livejournal.com]

Good lord, if that person's going to armchair diagnose/advise you, I don't feel bad saying it sounds like THEY need therapy in a major way, because they are carrying around a lot of anger. Which is understandable -- I am, too, all the time, it's profound the level of anger I deal with on a daily basis, I am an ANGRY PERSON (note: which it is possible to be, while still being a good, fairly gentle, compassionate person) -- but coming from a "don't talk about it" perspective, WHILE carrying around a ton of unresolved resentment and anger, is asking for major trouble down the line. They sound wounded, pretty badly so, and I hope they can get help that actually, you know, HELPS them. :( They sound like my mom, and dear god, the help that woman needed and never got breaks my heart.

You KNOW me. Talking about this stuff is what I DO, because sometimes that's all I CAN do. I don't do it because I need help I am not getting (although I do), I do it because IT HELPS ME, and it helps other people. I've saved at least one life. I don't bring that up to make myself look good, I am bringing it up to point out that there's a chain here. I was saved in no small part by people willing to talk about it, share their experiences, good and bad, so that I knew what the lay of the land was. I had some signposts and bits of a map. I knew that what I was feeling was normal, even if it was scary as hell. I knew I was not alone. I knew that things would change and pass. And I provide that same talking-about now, as best I can, because that's what helped ME. And it's helped another person stay on the right side of the statistics. A whole human being . . . a unique and individual life, a human soul, because I was willing to talk about this shit when so many people are either unwilling or, for whatever reason, simply cannot talk about it. So yeah, it's kind of a big deal, talking about it. Sometimes stuff like this is more helpful than any other thing you can possibly do, because it helps other people come to terms with their stuff, lets them see they aren't alone, and, if they aren't as good with words, or have no practice articulating what are often very complex feelings, you are helping them find their own voice. Not talking about it only leaves people alone in the dark. That hurts me inside just thinking about it. Nobody should be alone with this. Nobody.

What you do, talking about your issues, has helped me learn about issues I previously had no experience with. This particular thing is TREMENDOUSLY helpful, the kind of care-and-feeding-of type thing that makes it so much easier to help other people when they need it. Thank you for posting it. Don't let other people missing the point completely ever put you off from doing this. <3

[brightlotusmoon.livejournal.com]

See? You get it!

[naamah-darling.livejournal.com]

Lately, I am serious, the knowledge that what I post might be of use to people is what gives me more hope than almost anything else.

I swear, I SWEAR, if I had the energy, if I wasn't so sick, if I just . . . got better enough to magically do it, and had the resources, I'd try to find a way to reach more people and help them get through the system to get the help they need. Whether that would be advocacy work with individual patients, writing a book, researching the ins and outs of the disability system and helping maintain a website about it, whatEVER, but if I could, I'd do that work, because aside from fostering kittens, it's the only work I've done that I can look at and say "I made a huge difference there." It's hard to look at someone that is alive because you were there to save them, even passively, and say "None of this was worth it." There are still days when I don't feel like it is, and maybe it truly isn't, but at least I don't feel like that every day. Because that feeling is awful!

And I can foster kittens at the same time, so they aren't mutually exclusive.

*draws self up* *tugs lapels* *sweeps hair back*

I . . . am going to go work on ponies. Because that makes life good, too.

[brightlotusmoon.livejournal.com]

Also, I need you to know this: You have made a huge difference in MY life. Ever since I started reading your LJ in 2008 but didn't start commenting until that wonderful kitten fostering. It has been an amazing privilege to read your posts and understand things about my own brain. And when we eventually started talking regularly, and our friendship bloomed... I swear I was joyously walking on clouds for weeks.
I'm not sure if you know how much you mean to me. That's why when you sent me Serenity and her mirror, I cried openly and happily. Something tangible, a part of you I could touch, something YOU MADE just for me... that was so, so so huge.
So, yeah. You are making a difference. Not just for me, but for a lot of people, judging from the comments on your posts. And it is all worth it. I know I tell myself the same thing, that none of what I do is worth anything. But to be able to step back and tell YOU that YOU are worth it helps me understand and realize it in myself.

[brightlotusmoon.livejournal.com]

And about her anger - yep. She was a pariah for many many years: She was driving the car that got into the crash that killed her boyfriend - who was very, deeply loved by a lot of people, and she was shunned for years. She developed PTSD and a lot of mental health issues. Even the boyfriend had suicidal depression issues.
But hey, I'm not him. I'm not any of her old friends. And I'm thinking maybe she's trying to compare me to them.

I also find it so, so weird that she thinks she knows me so well. Just because she dated my husband for a few months, and he was her first lover, and after they broke up she was resentful and bitter for years...

[naamah-darling.livejournal.com]

Oh my god, poor woman. :( That sucks unilaterally. Aaaaaaaaaaaaaaand it would explain HUGELY her unwillingness to talk about it and her mistrust of doing so. Under those circumstances, YEAH. I can see that.

I hope she has people she can talk to and feel safe around. :(

Although the resentful and bitter, yeah, that falls into "I hope you get help for those issues and wish you well, but it ain't okay to treat people weirdly because you have those issues, and I ain't sticking around or holding my breath waiting for you to change. Good luck, and I mean that."

[brightlotusmoon.livejournal.com]

I know for a fact that she has a ton of friends and that she has been seeing a therapist. So to tell me that I can't discuss my issues in public because she assumes it makes other people uncomfortable or upset... what? Like... what? Like, yes, I get that she herself will not talk about her problems. I didn't even know she had arthritis, and her suddenly springing that along with the "everybody suffers" speech threw me for a loop... but, seriously if she's followed me on FB this far, surely she would know that I don't... you know... oh, you know what I mean. WORD, BUH. I don't scream for help on Facebook, and that was a post about seizure advice, and dude, WHAT.

[notadoor.livejournal.com]

I think the woman's second comment clarifies a lot:

"I am in no way shape or form trying to be critical and my apologies if it came across that way. But I have many friends who have similar disabilities (some less some more severe) and I don't see them in nearly the physical/emotional pain you seem to experience all the time. I don't know if it is just that you talk about it more (and if that is how you cope then that is awesome for you) but to me you just seem SO focused on the pain and the negative impact of your condition that (and this comes purely from an associates degree in psychology which is worth practically nothing) that in some ways you could be making it worse for yourself. Look... I worry when people I care about are in pain. Especially constant pain. If you had a friend who was depressed and all they seemed to do was talk about how depressed they were and how much their life was misery you would reach out and encourage them to seek help right? I know what you are experiencing is not depression. But it is worriesome to outsiders looking in when they see a friend who seems to be so focused on the hard parts of their life. I'm not the type to beat around the bush. My apologies for being so blunt. But we have had too many friends of ours recently 'reach out' without ACTUALLY reaching out who ended up taking extreme measures and I just wanted to make sure this was not some cry for help that we were missing. In my own blunt caustic way this is me trying to be a friend and make sure that you are ok."

To wit, I don't think she's angry, or malicious, or telling you not to post stuff on Facebook. I think she's not used to people talking about disability the way you do, not sure how to interpret it, and not sure what she's supposed to do. (And bad at verbalizing all of those things.)

Possibly you may want to make a stickied post or a note of some kind answering those three questions, and then you can just refer people to it when you come across someone who's confused :-) It'll save you the effort of having to type up the same info every time.

[brightlotusmoon.livejournal.com]

I fully agree - it was very clarifying. See, she hardly knows me. She thinks she does. She briefly dated my husband and he was her first lover, and when they broke up she got very resentful for years.
Later in her life, she was driving with her boyfriend (who had severe depression) when she accidentally caused a crash that killed him - and he was beloved by so many people that she became a pariah. So, she actually has many, many issues herself. Doesn't mean she should make comments like that to me, though. I understand that she's had severe PTSD since E. died and all that guilt and all. But I'm not E. I was never suicidal. I'm nothing like the people she used to know, who all had very, very severe mental health issues. I think she just doesn't know what to say to me.

A stickied post sounds like a lovely idea!

[naamah-darling.livejournal.com]

To wit, I don't think she's angry, or malicious, or telling you not to post stuff on Facebook. I think she's not used to people talking about disability the way you do, not sure how to interpret it, and not sure what she's supposed to do. (And bad at verbalizing all of those things.)

Thank you, person I do not know, for summing up in a couple of sentences what I was flailing at for an entire comment.

"Not sure what to do! Do something!" seems to fit parts of that behavior pretty darn well. Although it doesn't, to me, explain the whole bit with the "everyone suffers" thing up top. Maybe I'm just too used to hearing that preceding blanket dismissal of everything I am/do/want/feel.

[notadoor.livejournal.com]

It's a tired bit of rhetoric used to invalidate people, so its presence here is kind of weird. I *think* she's trying to say "other people who are in pain are not talking about it as much as you do, does this mean that this pain is affecting you more than them? Why are you handling things differently, and how am I supposed to engage with that?"

The problem is that, instead of framing it as a question, it gets framed as an assumption: "other people who are in pain don't talk about this online, therefore you must be lacking a therapist/real-life support system and I should be pushing you towards getting that." The "therefore" is where it all falls apart.

[brightlotusmoon.livejournal.com]

Ah, you put it into words that I couldn't find. Thank you! I was actually feeling invalidated and I started feeling very defensive. If she hadn't mentioned that at all, it would have been fine. If she had just asked me if I was okay, there would have been no need for all that confusion. I'm still not sure she understands, even as other friends comment and figuratively hit her over the head with "Dude, she's fine, she handles herself well in her own way, what part of that do you not get?"

[brightlotusmoon.livejournal.com]

I was honestly more weirded out by the "everybody suffers, you're not special" implication than by anything else. I thought, "Yes, and...?" because her "argument" or "conversation" started falling apart very quickly. Everything else seemed fine; I could tell she really just wanted to make sure I was fine. But sticking that part into it - especially with her own incredibly fucked up past - seemed a bit odd. And we're not actual friends, even...

[natalief.livejournal.com]

I am more and more of the opinion that FB sucks and try to only add people there that I am friends or family with face-to-face. I also rarely cross-polinate my FB with my LJ content. If I do I would say something like (in a case like this), "This is an article that I wrote on my blog about how to behave around me if I have a seizure. It is purely for information and not a cry for help in any way as I am perfectly happy at this moment. [LINK to the LJ post]" That way any people like this "friend" of yours (who seems to have reacted exactly as my mother might but then she would never go to therapy or admit that there might be anything she needs to "address" and, then again, she does not like the intawebz and thinks that we should not talk about ourselves face to face, let alone on the web…) can click through to read the post if that sounds interesting to them but most likely will not bother (again, making assumptions about this "friend" being like my mum). Apologies for that rant!

I love your posts about the care and feeding of you (and also those that naamah_darling posts) because it makes me a little more knowledgeable about and caring towards other people and I am all about that. So, thank you for this post and I am sorry that some people have keys to the intarwebz when they should not.

[brightlotusmoon.livejournal.com]

"It is purely for information and not a cry for help in any way as I am perfectly happy at this moment. "

You know... I'll start doing that on FB from now on. I used to, like a disclaimer, but it was getting tiresome. But now it seems just... necessary. I can use that disclaimer to preface pretty much every Facebook post I make about my disabilities. Because obviously because don't know me as well as they think.

This woman really honestly assumed we were friends. But other than her being my husband's lover for a few months in their very early 20s before he went back to his fiancee, we have no connection. My best friend hated and loathed her for "being responsible for a beloved friend's death." Lots of people shunned her for that. I never even got a chance to spend time with her, even when my old roommate had her over for visits. I know we have mutual friends. I know that she was the only other virgin my husband had sex with and she cried hysterically for hours while I laughed with joy, which startled him happily. I know about her horrific car accident. I know she had severe psychological problems for a while. I know she got married and got a cat. That's it. I barely remember the sound of her voice, for gods' sake. And suddenly she deeply cares about me? Why?

[natalief.livejournal.com]

Yeah. Points again at the "sounds like my mum" thang. i.e. has baggage and thinks everyone should do as she does and feel as she does. You have no responsibility for anyone else's happiness than your own, least of all someone you know vaguely and only in passing like this.

*safe virtual hugs if you'd like them*