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.


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