After yesterday (the whole abuse stuff) I thought it might help to explain how I am experiencing the world and processing information which comes both from the “outside” (people and the word) and the “inside” (The memories I have lost). So this a one person’s guide to post-seizures state (or what I call The ‘brain go Boom!’ time). Anyone who has had similar experiences (or different), please comment!
First, as far as I can tell, I have the exact same IQ I had before. IQ is about how a person is able to process information, not how much they can tell you about various subjects (though once a person is over 25 we tend to think that the talking about subjects IS the IQ). The problem is that when a person doesn’t have recent memory, or middle memory and cannot answer open ended questions (“How is your health?”, “What has been going on?”), and when they have some pretty odd brain tricks like repeating entire heard conversations in a monotone (like not remembering what the question was that started that monotone OR what they just said) then people tend to think that they aren’t as smart as before.
Except, due to circumstances my NEED to read the situation, the expressions on people’s faces and their interest or not in me is even higher than before so I can tell when someone has changed their tone of voice within the second syllable, or glanced at someone, or looked away, or changed facial expression. And I know that means they think I am dumb, and that they are using the “talking to child or someone who needs to be talked to slow and simple” voice; which even Linda does several times a day(though she is not conscious of it). This makes me feel frustrated (and yes, a little stupid), because I KNOW I am not stupid, but I can't prove that and right now I am not what I was last week.
This is why when I meet people since I had the “brain go Boom!” I feel like I have been left behind, sometimes like everyone moved ahead a grade or two but me. They know me, and they know about a relationship with what looks like me but all I know about them is what I emotionally feel, and whether their face looks familiar or some odd fact.
Yesterday all I could say about someone I worked with for several months was, “Your hair is the wrong colour.” And she got the “tone” and said, “Why yes, I DID change the colour of my hair.” Today I met a friend who I talk to every week usually and have for at least two years and I knew their name and face and after a while I remembered something; they had a daughter who was doing a big university athletics competition. I asked about the daughter and the competition. I was told the competition was over a year ago and actually instead the daughter was graduating uni today. So, is this like waking from a coma? I don’t know.
Almost all the information I have is felt emotionally first. In fact, the emotion will connect to a series of images, very incomplete, and that is all. Here are two examples. Though I now know logically I cannot run, the emotional feeling of running and how I feel when I run is around me all the time. I always want to go for a run, I feel it almost overwhelmingly several times a day.
I said this to my “not so sensitive care-worker”, that I just felt like I could go out that door and run down along the beach.
And she said, “Yeah, but you can’t, can you?” She is the one who is almost the same age as me and doesn’t have disability insurance because, “I’m not old or anything, nothing is going to happen to someone who is fit and young like me.” I don’t know if empathy is in her vocab.
The second example is yesterday (or what built into yesterday), when I had the EMOTIONAL experience of not only my brother’s sexual abuse but the reaction of my family which helped me remember just a couple statements and events. Now that is a fraction of what I used to remember about what he did, or has said since or how parents have acted. But I don't remember that. I just have the emotions of it and that was pretty horrid and they boil around. Then I tend, if I hear or find or remember or make a phrase which encapsulates that whole emotion to attach it to that whole bag of emotion and say it hoping people will understand (and keep saying it). Which in the case of abuse was “things written upon the body” (so if you go back you will notice that I used that phrase the day before in my post as well, and maybe the day before that in my blog).
Now, this isn’t limited to stuff like abuse but EVERYTHING. The emotions far precede the information, and when I have a phrase for it, then I use the phrase. So the post title “Sometimes it isn’t meant to be easy” is a line from a film when I felt a part of the emotion I was feeling about my life and my brain, and “We don’t quit around here” is actually rephrasing the main line of the song in the AMV in the post.
I have a LOT of things in my life that I want to be honest about and I feel about so I am missing lots of phrases. Thank goodness I was a person who wanted most of all to be honest because the emotions don’t lie and so when I talk to people I usually say, “I feel that I like you” because that is the truth. Good thing I don’t have two faces because I can’t hide how I feel and if I met someone, I would just shrink back and go, “I don’t like you, you make me feel bad.” But for example, I couldn’t remember my night worker who apparently I selected and trained but I could say, “You make me feel safe.” Now, I don’t have the information of the memory of the nights she took care of me to back that up (and one day I hope I will!) but I have the emotional collection of that memory.
That actually was what the post “We don’t give up around here” was about in the first half. Trying to tell the people who come, who comment, who support me, who share their lives with me that their consistency in staying, in their comments made me feel safe. That all the people made me feel that the internet and they might make my day a little better instead of just another horrid thing where I am left behind (but also that whatever bad stuff I go through, I respect what THEY go through too!). But the only way I knew how to say that was “We don’t give up around here” – meaning, you don’t give up; you don’t give up in YOUR life, and you don’t give up on me. And I tried to say that your not giving up was important, even if I couldn’t remember every comment or email we might have had.
And yes, it is frustrating to be using lines I hear from songs, books and films instead of my memory or just making them up but when you have several hundred to thousands of emotional memories that need a label to contain them, well, I can’t make that many up in a day, can you? So I say, “I am chasing the great white whale” or “Everything is …Illuminated” or many of the other phrases I use every day. And I guess when I have enough memories to know enough about WHY I feel a certain way exactly about something or someone or just what I am feeling at that time, then I will be able to stop using those phrases.
Tomorrow I am SUPPOSED to go up and get fitted for a racing wheelchair at 10:00 am at the university where a lot of wheelchair athletes will be doing racing (the Wheelchair racing assoc. is bring one from Vancouver). Only it is going to rain. And Linda said to me, “We will go and ‘Everything will be….Illuminated’” And I said “No!” Because that is a phrase for the collection of things of which I know what they are but cannot answer them because I do not have the memory and/or the words for like the question, “How are you?”
But tomorrow: I do not know where the wheelchair athletes will be if it is raining. Or even if they will come from Vancouver and this is my one shot to be fitted and if they don’t come, they wheelchair doesn’t come, and if I don’t get it done I don’t know what will happen or if I won’t be able to have it done at all. So, no, Everything is NOT illuminated. This is the inky black depths. I wish I HAD a phrase for what I feel about tomorrow, because I WANT to be part of the racing series and I WANT to have a racing wheelchair but so many, many variables are not in my control. And in my experience, when there are many people and many variables and it has to do with my health the phrase, “Well, maybe at this time it wouldn’t be best…” comes up a LOT (along with many pages of papers saying I am responsible and they are not – I know there is a shorter word for it but I do not know it today).
So this is the explaination of why days going to meetings (every day) and medical appointments (every other day) I actually get depressed a bit even without remembering the shit that has happened in my life (or the horrid tests before this or the waste of time of meetings or just how I have been made to feel stupid or sub-equal there before). But also why I get a bit happier when I get emails because if I see the email line and I feel “I like this person” then it is okay to open the email. Which actually does make me sound either simple or like a human bomb detector.
Only because Linda said something today did I figure this out, it was about my brother and things he had done and she said, “I wish you didn’t remember X” and I said, “I don’t.” And then I explained that I remembered a few things but mostly it was the feelings, the feelings that were overwhelming me, which were shaped into this black mirror that was casting a very sick picture back at me about what type of person I must be for these things to happen and my parents to act so. So that is how I figured out that the emotions come first, and then the memories stick onto them.
In another example I asked Linda this afternoon, “Who owns THAT car?”
And she said, “It is the building manager”
And I said, “Why do I feel like smashing into it?”
And then she told me many things I had done: like call the fire department on Fran and call the owner and write to the owner and how there was an article in the papers after I called them too and after Linda said many of the things I had done I said in a small voice, “Do you think Fran wants to run over ME?”
And Linda said that probably no, Fran didn’t like me much but solved it by not talking to me. So I asked if that meant we stayed here rent free and Linda said, NO, that we still had to pay. Oh.
Also, I think I should write just a paragraph about nightmares and what it means when I say, as I have had in the last few days, “I have nightmares.”
Now, for example, would a dream where I am hunted down by a pack of wild dogs and they rip my flesh off my body as I die be considered a nightmare by me? No, I feel that kind of pain several nights a week, so that would be more of a “you are about to wake up and need the care person to give you more opium” dream. Or would a dream where my heart is ripped out of my chest and held beating in front of me be a nightmare? No, that would be a comedy, as since as I HAVE several hours of chest pain a day that would be like, “Oh, you solved that problem, thanks!” So when I have nightmares it used to be and is, for example: my brother raping me while my parents wander in and out of the room asking me if I did my chores and getting a “We are leaving for DINNER at 7:30 and you don’t look at all READY, and you KNOW we have reservations and I hate being late” lecture WHILE the rape is going on ("And don't forget that the DINNER is FORMAL!"). That is a nightmare. Or I had a nightmare that everyone I trusted and believed as a friend on the internet turned and got very, very nasty to me and sort of turned their blogs into hate blogs about me only they were all there in person saying stuff too. So, that would be very emotionally painful and that is real nightmare I had like two days ago. But I also think that often there is like a special ‘feeling’ a nightmare has so things like trying to leave a library after hours can FEEL like a horrid nightmare so I am not dissing anyone’s nightmares (I also have nightmares that I am missing a final for a class I did not know I signed up for). It is just when your DAYS are pain and a doctor talking about doing things TO you that are very similar as the SAW movies and medical tests that look like they came from various horror films and all sorts of pain and being unable to breath or even scream at times, well, it has changed I think what a nightmare is for me.
That’s it, I hope it was an interesting read. Not the most thrilling I admit but at least a view of how I try to deal with the emotions AND information and make them match up in categories (using phrases). And how it would be REALLY bad to have this happen to you if you secretly hate ALL your neighbors and colleagues and couldn’t remember NOT to say to them, “You make me feel icky!” or “I feel like you are a pervert…..do you think of me naked?”
2 hours ago