Understanding emotion

June 1, 2008

I often have a lot of difficulty with emotion.

Even when I am doing pretty well, the emotion I most often experience is frustration. I get frustrated when my thought process is interrupted, when I’m not given time to understand things. Or when people expect me to be better than I am. When I don’t understand the behavior of others and they’re speaking loudly or in harsh tones, I usually feel scared. I feel agitated any time I don’t understand what’s going on. If I don’t understand what’s going on or what’s going to happen, I feel wholly out of control, like absolutely anything can happen. This is why schedule is very important to me and why it’s very important that things are communicated to me and in front of me calmly and clearly. Sometimes I feel happy and sometimes I feel sad, just as you do. A lot of times, I’m happy about silly things, things I find funny, or maybe I’d be happy talking with an understanding loved one. Sometimes I feel sad because I know I’m not doing as well now as I used to, because I didn’t get to finish school, because my life now is so very different from what I’d imagined and I had no choice. I can be sad about other things, too.. like things that happened in the past, like sad things happening to friends.. but I don’t want to talk too much about being sad because it might make me sad now. I don’t know if confusion is a feeling, exactly, but I’m confused a lot of the time. Every once in a while, I get really angry when I’m pretty sure I’ve been wronged. When I’m frustrated or agitated, I’m loud a lot of times, whining, even yelling. This may lead people to believe I’m angry, but that’s not right. When I’m angry I’m very quiet and very controlled.

When I am doing poorly, I often don’t understand emotions very well. In those times, all I can distinguish within myself are two categories of emotions, good and bad. I usually call the good emotions “happy”, but I might be contented or excited… I just can’t distinguish the emotions or match the feelings to the words. I never know what to call the bad emotions… I might be sad or angry or even frustrated or agitated.

Now and then I’m doing very, very poorly. Sometimes I get completely overwhelmed and I’m not even verbal anymore. In those times, I can’t understand my emotions at all because I can’t think in words. Sometimes with emotion, I express myself physically, but when I can’t express myself verbally, that is the only means I have. I shake my hands or fists furiously, I rock hard, I may slap myself. None of these things I realize I’m doing until after I’m doing them. When I’m expressing emotion physically, I can stop, but it’s very, very difficult as well as emotionally painful and somewhat traumatizing. Asking me to stop all motion when I’m very agitated would be something like asking a “normal” person to stay absolutely still while a colony of ants crawls all over them. It can be done, but it would be incredibly nerve-wracking and you’d just about have to die inside, distance yourself, to do it. You could do it, but it would not be good for you. I would like to learn another way to express my emotions when I am not verbal. Drawing/coloring has been suggested to me. I’ll try that sometime, though I hope not soon.

I want to say more about other people’s emotions.. but I’ll get to that later.



April 15, 2008

I feel so stupid. I know I’m not, not as such, but of course that doesn’t prevent me from feeling differently.

Sometimes it gets to me, all the change, all the differences. Before the downslope became particularly evident, I was going to school for a fairly select field of engineering. In a field where entry students that graduate on time are rare, I was not only on time, but holding a GPA just short of 3.5. But all this really came down my senior year. I went from getting A’s, B’s and the occasional C on tests.. to F’s in all the material in my major. (Though disability services at the university could get me as much as double time, it wouldn’t have been enough.) About a year or so later, I found myself having trouble filling out forms (now I generally let someone else do it, or if I have to, I cover it so I see less of the form at once). Though it’s true that there are times I have significant trouble with my memory, it’s not that I forgot all the material for the tests just as it’s true that I don’t know my address for forms. But it can be enough to cause me to feel stupid… and to feel angry, frustrated. Sigh.

I even forgot about this blog, believe it or not.. Sad. All the same, most of the things here I can’t figure out (at least not right now).. or, better put, altogether they seem to be too much for me to figure out. I’m sure I’ll be up to try sometime.. or might find someone to help me learn it a single function at a time (those I want to use, anyway.)

I have a fever right now and I know that’s not helping anything. (This post is probably particularly disjointed.. but probably not so much as the one in Spanish because my Spanish is terrible.) Sigh. My condition.. it’s one that a raised temperature makes worse. And also one that has left my temperature unstable! As far as I understand, most people’s temperature varies a degree or degree and a half (Fahrenheit). Mine usually varies a degree below normal and two degrees above. Not only that, but it responds to temperature change of the environment. Like, if my temp is high and I see that the temperature of the room drops just two degrees (in the 70s), my temperature will drop as much as a full degree. I guess I’m not so warm-blooded as I should be. It wouldn’t bother me so much if the range was lower, but this is rough stuff.

Anyway, so yeah, my fever is probably making me worse.. and with how high it’s been, probably much worse. I’ve had significant trouble understanding things this evening, which can easily leave me doing not so well. I joined a large message board recently, which may be a good thing to combat isolation as well as keeping me, to some extent, intellectually stimulated. But, of course, there are idiots in the bunch, fools that say things not realizing (or caring to realize) how stupid the things are. On one part, someone saying that disabled people aren’t marginalized and that people who do so are wrong; on another part, someone advocating negative eugenics — sex licenses gained by knowledge tests (which would of course leave out many of the cognitively and learning disabled people, at least) and forced contraception for couples likely to produce children with genetic abnormalities.

Sigh. I have a neurodegenerative disease of the CNS. This causes me many difficulties. But I’m not stupid. At the least, I’m not so stupid as those things. I know, I know.. presume ignorance. But sometimes people like to hold on to their ignorant ideas and I just have to cry and move on.

Oddly enough, I feel I’m finally ready to make this public. It’s scary, that’s true.. but I didn’t start this just to write for myself. Now hopefully I won’t forget about it for too long at a stretch.

Hello, readers.


March 13, 2008

I did laundry. For the first time in (probably) over 18 months, I did a load of laundry by myself, folding and everything. Well, I have yet to fold some things, but still.

I’m kind of proud of myself for having done that laundry. I see it as a step towards regaining my independence. I’m learning how to do things again now — with both a less cooperative body and more limited (and erratic) brainpower. And I’m proud of that, I really am. I am mine. I know I can’t work and I know the keeping of my personal relationships largely falls on the other parties many times… but I’m almost sure that, given a little help and copious notes, I will be able to take care of myself. My goal is to learn how to keep house despite memory troubles… and to plan such that I will be reasonably comfortable even when I don’t know where I am or what the year is. Laundry is a step, I guess. I’ll learn how often I need to do it.

At the same time… Laundry?! I’m proud of having done laundry?! What kind of sick, sad joke is this?! I’ve done laundry before. I was doing laundry when I was 10 years old! It seems a repulsive thing to be proud of doing laundry at over 240% that age. Sometimes it strikes me as very sad, what my life has become, but it is still mine.

I largely do like myself. Much, much more often than not. Even when I can hardly trust myself to find the words. Earlier tonight, I was lying in bed, talking on the phone with my boyfriend. At the end of the conversation, I lost what I was going to say. I lost the thing I say almost every night… something along the lines of “I hope you sleep well and have a good day tomorrow.” I couldn’t think of the words I’ve said hundreds of nights… and they went unsaid because I couldn’t think of them. That, the… autistic-type behaviors (rocking, pounding, getting easily overstimulated).. um.. probably lots of other things I can’t think of at this moment (I’m having trouble with words right now. Maybe it’s noticeable.) — I still like myself. And I’m just as worthwhile a person as I ever was. One really sad thing, though… is how that, for many years, I didn’t like myself very much. That, to me, is definitely sadder than any of this.

Thinking through molasses

February 23, 2008

This is a rough day. It’s the kind I refer to as “thinking through molasses”. I think it was originally some comparison saying that thinking is so hard it’s like walking through molasses. Really, though, if it was during one of these times, maybe it actually was “thinking through molasses” and that’s just what I meant by it.

Anyway, today I’m having trouble with lots of stuff thinking. Like.. for one, I think I need specific instructions. I didn’t reheat the leftovers I had for lunch myself because the instructions I was given were… nebulous. I mean, they were something like “put them in on 50 to 70% until they’re warm”. I know she meant microwave, but there was nothing specific about the instructions. And.. and I’m having a hard time being fluent in speech and in type, too. Not surprising for such a day. And other stuff, of course, but this being how it is, it’s really hard for me to describe a lot of it, even to myself.

en español ahora

February 21, 2008

Pienso que dije que a veces no puedo hablar en inglés. ahora es una vez. mi español no es bueno, pero ahora el es muy mal. No estoy contenta. Mi pensando está mal como mis lenguas, primo y segundo. Mi memoria está mal, tambien. Y me duele mi cabeza. Todos están malos pero que mi novio me amas. El y lo amor están buenos, pienso… pero mi pensando está mal…

El dijo (en inglés) que me amas y no me muerto y necessito dormir. No recuerdo por que quise mortirme, pero mi pensando está mal… Dormiré.


February 15, 2008

I feel alone.

I suppose each of us is alone in that each of us is one self and no other self can fully know another, but I feel more alone than that. It’s a feeling reminiscent of that pubescent cry of “Nobody understands me!”. As far as I can tell, it is largely true.

I am alone because my experience and state of being is so very different from most people out there. I am an intelligent person whose brain is decaying upon the years in which a person usually establishes him or herself. There have been great losses in my life (school and independence among them), but I’ve largely come to terms with those insomuch as one can. But I am alone.

I was reminded of this when someone, trying to give me advice, attempted to “put himself in my shoes”. Of course, he couldn’t. He imagined that what was said to me had been said to him. In this, he could assumed he could understand all that was being said, process it nearly instantaneously, and have faculties enough not only to take apart what was said but to do it real-time! All of that has no basis whatsoever in my experience now. I couldn’t understand the advice and certainly couldn’t even attempt to apply it. What I could understand is beyond me.

What makes me most alone, though, is when I can’t communicate. This can happen in several ways. Sometimes, I have aphasia, simply, trouble speaking and/or understanding my native language, especially in speech. (I’m very lucky to know a second language well enough that I can think in it without having to go through English. I know Spanish, but poorly. I really need to learn more of it, both in vocabulary and grammar. Because of this combined with my wanting to present my experience, there may be some entries in poor Spanish.) Sometimes, I slur badly enough that I can’t be understood. Sometimes, I speaking my thoughts in any language requires a painful effort. The act of forming words can consume so much cognitive effort that I cannot hold much thought in reserve.

Aphasia is hard primarily because I do not know much Spanish, so there are concepts for which I do not have the words. Slurring is difficult, but so far, it is quite self-limiting — and even if it were not, I know those close to me would come to understand me in time. But the last trouble, I cannot think of a remedy for that, not but by going through type.

One who cannot communicate is alone.

I don’t want to be as alone as I am. Even for the disease I have, the symptoms I have are marginalized. These things rarely or even don’t happen (depending, of course, on who you ask). I’m tired of being a pariah. I’m silent no longer. I am a person. I have much life to live as I am. I ask to be accepted as I am. I don’t want pity, I don’t want fear or distrust. Yes, I am most likely more different from you than your neighbor is. Essentially, I have diffuse acquired brain damage. Maybe you can’t really understand me because of that. But you can try to understand what I can express. I wonder who will meet me partway.

I begin to write

February 11, 2008

Whether I write more out of necessity or desire, I do not know. But here I am and here I write. I feel I have precious little idea what I am doing, but I hope that will not stop me.

A book I’m reading (but am reluctant to finish) prompted me to write. In Losing My Mind, many of Thomas DeBaggio’s words strike close to my heart — I, too, find myself losing my mind through biology gone amiss. There are differences in tune, rhythm, and tempo, but it is still the same dance. No one wants to start the dance of neurological deterioration early, but there is rarely a choice. Reading the book, I felt less alone. Many of his words could have been mine. And it occurred to me that one doesn’t often hear from the other side of brain damage, at least not when it’s very significant. DeBaggio is a writer, though; I am not. What makes me think I can write? The degree snatched from me was in engineering, but I’ve never found writing essays dull. I often find speaking and writing difficult, but I almost always find typing readily accomplishable. I can write, but I’ll make no claim as to how well. It is nice to have an outlet and I like the idea of giving people a glimpse into my world if they should stumble across this space. And I have nothing to lose

It struck me that perhaps someone who comes across this weblog, if they don’t know me, might think it’s a joke, that she who writes such posts as these cannot possibly possess what problems she says she has. I have mixed feelings about that. On the one hand, it seems silly to me because I know how I am; on the other, such a reaction would deny the issue and do no good. But I shouldn’t think on that too much.

I’d like to write about my goals for this, but I’ve taken three separate sessions in writing this post so far and now I’m lost in it.

I am here. I will not be conquered.