Change, rapid and otherwise

Standard

I’ve just noticed that I had a bad migraine, gone all over the house looking for pain meds (that should tell you something about how bad it is, I almost never use pain meds), and not found any. The going all over the house alerted an automated system where someone checks in and sees what’s going on. This is done in a fairly non-intrusive way, and I can hear when they’re listening and when they’re not based on assorted beeping. And so I told them what was going on, and they helped me figure out how to borrow ibuprofen from a neighbor.

Just a few years ago, I was in so much pain that I spent most of my time curled up on a couch, and did not think to ask for pain meds until I’d spent so many months that way that I had to retrain myself to sit up for any length of time. And I didn’t even think to ask for pain meds then — someone else, through fairly careful observation, was the one who figured out I should do so. I didn’t recognize what I was experiencing as pain, and even when I noticed, I didn’t realize I should tell anyone.

I worry when I make these sort of posts that they’ll be read in an overly maudlin way, or through an overly individualistic sort of lens, and that’s certainly not how I intend them.

Someone told me recently in chat that she’s surprised at how fast I must have had to change in the past few years, given all the things I’ve learned and crammed into that time period. I can remember sometimes during that time, experiencing things where someone would treat me as if I was a certain way, that I’d been the month before, maybe, but that was now not there at all. And not really knowing how to react to this. Someone told me at the time that most people aren’t prepared to keep up with that rate of change in someone else, but that people do change that fast sometimes.

I told the first person (last night?) though, that I’m not sure whether seemingly rapid change happens all that rapidly, or whether it’s a bunch of little things in the background over time that add up to something that looks very sudden. A bunch of little things in the background over time is certainly how I’d characterize the way a lot of things in my life go. They only get noticed when they combine in such a way as to jump into the foreground, often in a spectacular way. But the little components and stuff are all there, all busy lining up, all the time.

I don’t just live my life in this foreground-land that other people notice, either. The constantly shifting patterns of the world are always there.

The fact that I notice them is in some ways constantly visible, in the way I respond to my environment. Anyone who knew what they were looking at would be able to read the way I move in more detail than I even always care to think about. They would even know the tiny ways I can use slight modulations in my reactions to communicate with other people who know how to read that kind of thing. They would see, in short, what I see when I look at a lot of autistic people presumed unaware of their surroundings for reasons totally unknown to me.

But, the “foreground” stuff is much tinier than that, and it seems that that is what people pay attention to. A very tiny sliver of the amount of stuff that’s going on, and that’s what people base their entire ideas on. That’s how we can be presumed unaware, or aware, at the drop of a hat, based on some pretty arbitrary criteria.

But even so, I’m still amazed that I noticed I had a migraine, and then took all those steps in terms of doing things about it. Some of that is stuff I learned, some of it’s made possible by the environment I live in, some specifics are made possible by the electronic surveillance systems running in my house. But being able to do that sort of thing, even sometimes, does amaze me. But… if anyone turns this into some kind of disability-inspiration thing, just please spare me, that’s not what I’m talking about.

As I was writing this, I found out that another autistic person will not have any chance to experience life any more, in the way I’ve just described, or any other way. There’s been another murder. I’ve long since been no longer surprised. It’s just a matter of bracing myself for the inevitable over-sympathizing with his murderer. Again. And again. And again.

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.

9 responses »

  1. I’m deeply saddened at *this* death. While it is much more awful, it is also more worth writing and fighting for.

    I’m also sorry about your headache. I know how they don’t really stop but just go in and out of intensities. Mine have become like that with hypertension and stress related headaches. I have sometimes resorted to more simpler meds as of late rather than indulge myself in propoxyphene or hydrocodone, valium, klonopin, neurontin and all that jazz. i.e.: I used this liquid capsule (comes in green) ibuprofen. It worked this time. Going lighter on the other neurochemical drugs and going for a blood / anti-inflammatory actually helped more this time. I’ve had one not long ago and wrote about as well. (it was actually a couple days ago).

    BTW, I’m not suggesting you do what I’ve done medically at all. Do what you know in your best judgment regarding these migranes. Hope you feel better.

  2. A bunch of little things in the background over time is certainly how I’d characterize the way a lot of things in my life go. They only get noticed when they combine in such a way as to jump into the foreground, often in a spectacular way. But the little components and stuff are all there, all busy lining up, all the time.

    Hopefully this doesn’t sound trite, but I am so glad someone was able to articulate this phenomenon. This is eerily similar to how my learning and skill-acquiring process works as well…it’s particularly dramatic at work, where I’ll sometimes spend weeks looking like I’m not making progress, but then one day I suddenly have this huge coherent structure in my head and I’m able to just Do Stuff without having to consciously process every action. I can’t force the coherent structure to form…it forms over time and emerges only when there’s enough data and pattern-material to make it possible, though I never know exactly how much data that is…

  3. My son takes pain medication too. It was a while before I knew that he needed it.
    I a would like to know more about the alert system if you can pass along the company name to me that would be great. I am glad you figured out you had a headache.

  4. am sitting here typing and erasing because it’s hard to find something to say. maybe (seeing what day it is) just thankful to be alive, thankful my parents were always as weird as me, thankful to have come across you and other people i read who let me know better about all kinds of autistic and human possibilities, thankful that if my husband and i ever have a kid it will have united parents and a good father (can’t vouch for the mother; still kind of a flake).

  5. Regarding headaches, I can’t take opiates, they cause migraines. What I went next door for was ibuprofen. And took Axert. I woke up with very little pain this morning, although I’m already in the at-least-moderate range I am in the rest of the time, by now.

    The other pain (that took so long to get treated) was neuropathic pain which responds to Neurontin and little else, so that’s what I take for it.

    jennifer:

    There’s no company name, it’s a pilot program where I live. It’s based on a similar, older one in Wisconsin. They use sensors around the house to track my movement at night during non-staff hours, so if I get stuck or something, they’ll know. Every time an alarm goes off there’s a phone that opens two-way communication between here and there. And then they can get someone here in five minutes if necessary. It’s meant to be a substitute for roommates in people who’d normally be assigned a roommate.

    Here’s some stuff about the Wisconsin program. You might be able to contact them and local people about getting something similar in your area, but I’m sure it’s one of those things that has to be planned over the long term, to implement an entire thing like that in any particular area if it’s not already there yet.

  6. I have chronic daily headache and migraine, sometimes from one to four each week. I have found that diclofenac 100mg suppositories will completely relieve the pain of migraine within one hour or less. So if you there no contraindications, you must consult a doctor first it is not suitable for every one, you might like to ask your doctor for a prescription. It has saved my life without it I would have no life. I do so sympathise, I know how terrible the pain of migraine is.Hope this suggstion helps

  7. I’ll sometimes spend weeks looking like I’m not making progress, but then one day I suddenly have this huge coherent structure in my head and I’m able to just Do Stuff without having to consciously process every action. I can’t force the coherent structure to form…it forms over time and emerges only when there’s enough data and pattern-material to make it possible, though I never know exactly how much data that is…

    Yup, all very familiar. I dubbed them “matrices” a long time ago, and I’ve been deliberately causing them to form almost as long, by throwing data at them until they seem to be stable. If I want to add another interest to the cycle of recurring ones, I try to keep it active until it’s formed at least a minimal matrix. Getting over that threshold also seems to make it a lot more likely that I’ll remember what I’ve learned.

  8. In this case, I’m morbidly curious to see how they try to make the killer look sympathetic, as he apparently already has a history of assault and arrest. I mean, I’m sure they’ll try, but.

    Totally off the topic, mind if we e-mail you about something else? Totally unrelated, but it’s something that’s been causing us some grief lately.

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