4:47pm June 23, 2014

If there’s one thing I can’t stand

It’s people who think they know how they’d do things if they were me.

I’m just having almost-flashbacks to the time I dialed 911 during a seizure, as in while I was unconscious my automatism involved dialing 911, and I woke up post-ictal and confused, and all I could say was “uh-uh”.

And someone replied to my blog post about it about how “uh-uh” is a rude thing to say and how it just made things worse and all this crap.

And it was like “What part of postictaland nonverbal don’t you understand?” I didn’t even know I’d had a seizure, all I knew was I woke up twice on the phone with 911 barely aware of what was going on, and that all I could think was I had to convince them not to come because nothing was wrong, but I couldn’t talk.

And this situation with the cab, it’s another kind of situation people love to give advice about. They love to tell me how I look to other people – rude, intrusive, invasive, like I was trying to get into the cab, all this other stuff, they love to tell me all this as if any of it could change what I would have done, in the moment.

I have ten fucking minutes until I have to be home, and nobody’s here, and it takes me ten minutes to get home, at least.

I had someone call the cab company.

I want to go home.

I hope they don’t end up sending that asshole I just dealt with.

Although even he would be better than nothing.

I can’t stand drivers who yell “NO!” at me.

Like they start out saying “No!” and then it becomes “NO! NO NO NO! NONONONO! NOOOOO!"

In the same voice you use with a child.

Because clearly no is the only word I could possibly understand.

And half the time whatever they’re telling me "NO!” about is something that I have to be doing, or something that I can’t avoid doing before I do something else.

And then when I try to talk about these situations, people think they’re helping me by explaining how I look to other people. As if I don’t know how I look to other people. As if I have a choice. As if any of this involves choice. I’m making the best choices I have with very limited options, and if people can’t deal with that, then that’s their problem.

With the 911 thing, I also got, on my blog entry, a very patronizing explanation about how it’s illegal to make frivolous 911 calls. As if I didn’t know that. As if that wasn’t why I was terrified to wake up on the phone with 911. I was terrified because I had no clue how I’d ended up on the phone with 911, and I couldn’t determine any medical emergency, and I was afraid of being accused of frivolous calling, so of course I freaked out and said “no” in the only way I’m normally capable of saying it. Which didn’t help.

And the thing is, my blog entry made it very clear that the 911 dial was a seizure automatism, not a frivolous call. So why they felt the need to explain to me that “911 calls are very serious” and that “uh-uh is a very rude thing to say to people” is beyond me.

But things like that really piss me off.

Like seriously, until you’ve been a nonverbal person trying to communicate something in a very short span of time, in a situation where you physically have to be maneuvered into certain positions in order to communicate at all, then you have no room to advise me on this stuff. Unless I ask your advice.

And this sort of situation is where people love to give advice too.

They love to think they know how to do it better.

Pretty close to 100% of the time, the advice they give is stuff that requires skills and abilities that I don’t have. Sometimes it’s skills that I’ve never had in my life. Of course everything would be easier if I could do those things, but I can’t.

And even when there are solutions, they’re rarely as simple to pull off on the spur of the moment as people want them to be.

But people want to solve things without providing actual, viable solutions. And people want to be really effing condescending. Usually at once.

I’m typing this on the way home, by the way. Somehow “I have to get meds soon” sped them up. And I’m not riding with the asshole driver. So that much is good.

But I’m still seriously rattled.

I can’t not be seriously rattled every time I have an experience like that.

Especially the “NO!” thing.

Where literally I can tell they think I’m a child who doesn’t understand the slightest thing I’m doing.

And nobody ever seems to consider there are logical reasons for each step my actions are taking.

Even after I explain, in words, on my computer.

Oh, I appear to be using a new tag, #actuallynonverbal

Not sure if it’s actually new, but it’s useful to me for the moment.

I can’t wait to be home, I feel completely like I’ve been rearranged and twisted and pulled into pieces and put back together wrong and I just want to be somewhere familiar. And I’m barely not crying. I hate finding out how people see me even at my best, I was doing my best today, like I walked really well and I had good posture and was dressed really well and everything, but I still don’t pass worth shit, and sometimes that depresses me.