Archive for February, 2008

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.