Crossing lines in thought and lsnguage

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As some people know, I have certain traits that… well… how to explain. I’m trying to explain closer to how things appear to me, rather than using other people’s words and making it look like I agree with them. But it’s damn hard. So anyway. 

There’s certain ways that I function or don’t as the case may be. There’s been for the past decade or two this whole academic discussion about how much of it can be said to be a separate “movement disorder” and how much is part of what currently gets called “autism”. Honestly that whole discussion on whether “autistic catatonia” is “part of autism” or not has started bugging the crap out of me. Because honestly my brain doesn’t ask that question before it causes me to freeze in place, if you know what I mean. 

So anyway to get out of standing on top of the sky abstraction land and waiting to fall, a bit closer to the ground here to describe what the trait is and not what people think about it. So what I’m trying to talk about is that I have this problem with crossing lines.

How intense the line-crossing problem varies depending on the type of line, the time of day, whether I’m in a wheelchair, phase of the moon for all I know. The really classic description is like when my last apartment had a rug in the living room and tile in the kitchen. I almost never made it into the kitchen. I’d hit that line and either freeze or sort of rock back and forth foot to foot. And eventually I’d walk away. 

What they don’t tell you is that this doesn’t apply just to the classics:  doorways, lawn to sidewalk, rug to tile, etc. And it doesn’t just apply to the other physical barriers I have trouble crossing:  Bed to wheelchair, wheelchair to toilet, sitting to standing, etc. It also applies to all sorts of weird internal barriers. 

The reason I’ve chosen this winding path convoluted twisting and turning writing style to write this is a good example though it doesn’t fully seem one at first glance. It’s not my understanding that’s twisting and turning. (The colossal mistake in assuming confused words mean confused thinking.)  It’s the only available path to write on. All others are blocked and I am finding my way through the blockages by all kinds of strange routes. 

Living my life is always a study in taking weird routes to get things done. If I can’t get into my wheelchair I have someone hold a coat hanger over it and say “grab the coat hanger”. I grab the hanger. Which stands me up. The rest of the movement is effortless in comparison. Everything I do requires certain elements. There’s the trigger, which helps me to get started. There’s possibly the path-guiding sort of like railroading or horse-racing that constrains my actions to a certain pathway . Then there’s the immense effort required to hurdle all the barriers I can’t trigger or guide my way around — like jumping to a different pathway or initiating when there’s no trigger. That third point takes exponentially more energy than everything else combined. If I run out of energy no amount of effort will help me. 

I am using those same things right now. The start of this writing was triggered by the problem I’m writing about. The pathway is the only places I can get words out of. That includes needing to be weirdly informal, closer to the conversation mode I just said can’t take the place of writing. It also includes a lot of invisible twists and turns through different topics and places of writing that I have no control over. And the effort… my brain feels almost as bad as my body feels after it tries to walk. It hurts. My eyes won’t stand still. I don’t like this. 

Anyway all that before I could say what I mean to talk about. And that is that there are boundary lines in my head just as surely as there are ones outside of me. 

My brain seems to have divided places I write, and people I write to, into rooms or something. So if I’m, say, writing a lot to my private blog, it impairs my ability to write here. If I write to one friend it’s very hard to write to another, if possible at all. 

It’s also very hard for me to write HTML tags on my iPod because despite the fact that the angle bracket keys are in my muscle memory by now, every time I click to another key layout is a barrier. To write a single HTML tag, I have to click twice for the first angle bracket, once to write the letters inside, then twice more to write the second angle bracket. A closing tag with a slash in it is even more complex. It is easier for me to delete using the backspace key and retype a long string of words than it is to highlight it and only have to hit backspace once. That’s because moving my fingers from the onscreen keyboard to the upper part of the screen where the words to highlight are, is another barrier. Even when the two finger positions are closer to each other than two keys on the keyboard might be. No matter how close the thing is on the other side of the line, it feels like a giant gulf that a person wouldn’t want to try to jump over without a death wish. 

So I am, by writing this, trying to shift myself back to writing here. I am also trying to use whatever tricks I know. And it’s still painfully hard. I’ll have to see if doing it more often will do the trick. The problem is all those guiding path things when it comes to where I write, they’re still guiding me away from here. My smaller scale paths are guiding my sentences but the larger scale paths want me to be somewhere else. 

And resisting is grueling. Before I wrote this I felt as good as I generally do lately. After, I can’t get my eyes to point in the same direction, parts of me are shaking, other parts are just sort of limp. It feels as if it was a physical effort to do this. And whenever I just stop… the momentum stops, my mind first starts trying to replay sensory experiences (always a bad sign), then just goes blank and drops meaning out of everything, and my hand drops my iPod, and everything just stops. Then it takes even more effort to get going again. 

So there went my attempt to write here more. Be aware that any apparent incoherence was not mental confusion but just word problems requiring twisting paths to get around barriers in front of the words. And perhaps at least starting in conversation mode made it possible to write at all, contrary to a couple posts ago. Bottom line, this barrier problem isn’t just physical, it also makes its way into language and other thought related things. 

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

10 responses »

  1. I can understand the idea of triggers. Sometimes it feels like life is series of dominoes that are lined up and then pushed. One action causes another causes another and so forth. Sometimes however I want the momentum to stop and I often feel like I am swept away in a sea of cause and effect. I have hard time also adjusting to redirection, changes in routine that are not completely expected.

    No matter how well I pass when it comes to flexibility, I always find myself wanting the dominoes to stop falling.

    I probably don’t make any sense…sorry Amanda.

  2. “It’s not my understanding that’s twisting and turning. (The colossal mistake in assuming confused words mean confused thinking.) It’s the only available path to write on. All others are blocked and I am finding my way through the blockages by all kinds of strange routes.”

    That reminds me of how I act during a meltdown. I want to say ‘hug me, tell me you love me and reassure me’ but there’s a big wall in the way of saying that, so I find roundabout ways of saying it like ‘you don’t love me’. I know this is probably pretty different from what you’re talking about, but the whole ‘blocked so I find a different path’ thing is the same.

  3. There are times I can’t stop and say “I don’t understand, I’m not keeping up” because momentum seems to make me keep trying to keep up anyway, switching track is not possible.

    Like other posters I don’t know if this is anything like what you mean, but it causes me all sorts of problems when I need things to STOP, people to go away, but actually what I’m doing seems to be encouraging the situation to continue, and I look like I’m doing better than I am, so no one else would think to stop or believe me afterwards if I tell what it was like.

  4. This is very interesting, and I don’t think y0our words sound confused, although I can see it took a huge amount of effort to write them.

  5. a bit of fish oil can improve neural plasticity

    one or two or three teaspoons a day, needs to be kept in the fridge as it is fragile

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  6. thank you so much for making such a great effort to share this! I always really appreciate your writing that illuminates your inner process and point of view. Not only it’s interesting and thought-provoking, it helps me understand myself better…

  7. Regular readers at this blog know that I’m not autistic but do have attention deficit disorder.

    Once again I find a certain resonnance between my experiences as a person with ADD and your descriptions of the way the inside of your own brain works. It is rarely a precise correlation, but I often find that Amanda’s executive functioning issues seem to be simply a more extreme version of my own (for example, it might take me 10 to 20 steps to make a phone call versus the 70 that Amanda needs)

    People with ADD often have difficulty with “transitioning” from one activity to another, and to some extent I experience this too. In my case, it can sometimes be like there is a boundary between one activity and the next and it occasionally becomes difficult to mentally release myself from one activity, shift out of the mental gear I was in for that, and then shift myself into mental gear for the next and overcome inertia to initiate the next. Actually I kind of need to overcome inertia twice because there can be a kind of inertia that sometimes makes it seem easier to carry on doing what I’m already doing than it does to stop(momentum)

    My brain also seems to impose boundaries where other people do not seem to experience them. For example, some people faced with 10 emails that need a reply see “processing email” as all one task, and the 10 emails as simply minor components of a larger task. But for some reason my brain will simply not parse it this way, at least not consistently: it (sometimes/often) imposes a sort of boundary around each email and treats it as a separate task. On a good day this need not be a huge deal: it simply means I take maybe a few extra seconds or an extra minute to transition from handling one email to the next, so it just takes a little longer to get through my email than it might for others. It helps if I’m very highly motivated, which helps me overcome the inertia part of the boundary. But other days it can become more of a struggle even if I do still feel motivated–the inertia just seems heavier, the boundaries sharper and wider and harder to deal with.

    Maybe I’m off base here … maybe I’m inappropriately projecting my experiences onto something that is really a different process altogether. But in some ways the difficulty you describe here sounds sort of similar.

  8. Interesting. Lately (last 2-3 years), I’ve increasingly had problems getting “stuck” in my computer chair. I can have a list of things that I want to do, but the first step of getting out of the chair is… it reminds me of when you try to start a car with a completely dead battery: you turn the key, expecting the usual response, but nothing happens. (though I swear I can feel myself moving inside my body, sometimes, even though nothing is moving on the outside)

    But if my cat meows at me and runs down the stairs (what she does when she wants out), I get up and let her out with no trouble. And similarly if one of my parents calls up the stairs asking for help with something. I guess those would count as triggers/prompts?

    Luckily, the “stuckness” is not to the point of interfering with basic survival tasks. I do worry a bit about it getting worse in the future, though. I was on Adderal for 6-7 years, and since going off it 2-3 years ago this inertia feels very magnified. I was hoping my brain would adjust to being off of it after a few years, but it actually seems to be getting slightly worse with time. I had thought it was depression-related, but I’ve had that treated (and it’s better), but the “stuckness” seems unchanged.

    Anyway, thanks for writing this blog article. It’s what made me notice that my cat was prompting me, and that though I don’t have massive trouble with this issue, that using prompts deliberately is something to think about (probably wouldn’t have thought of that on my own).

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