Another form of neurological variance, apparently.

Standard

Someone just asked me privately, how it is that I manage to write so much.

For anyone’s reference, my main problem is how not to write. I have written compulsively ever since I was able to manage a keyboard without going into meltdowns. It hasn’t mattered whether what I wrote made sense or not, had anything to do with what I was thinking or not, or even whether the writing was any good, I just had to write. I’ve probably written enough to fill volumes, although most of it I’ve deleted or thrown away over the years and a large chunk of it is barely intelligible. Similarly with a lot of other creative activities, such as music, dancing, painting, drawing, etc. It’s not just that writing is a primary form of communication for me, either. I did this when I could speak, too. And I did it even when I wasn’t writing anything I was thinking. I’d just write random words or sentences if nothing else came to mind. Or copy entire pages out of books by hand. I do it when I am not intending anyone to see it. It has nothing to do with people seeing it, in fact. It just happens.

And in trying to explain that to someone, I came across the following article: The Brains Behind Writer’s Block, about hypergraphia, which is, surprise, writing compulsively (and also pertains to other creative acts as well), just as I’ve described above. It’s linked to differences in the temporal lobes. (I have temporal lobe seizures and a brain scan showed very high activity in parts of my temporal lobes compared to typical brains.) Looks like another one of those parts of neurological variance that gets medicalized as a disease but seems to be useful (if sometimes aggravating) in practical terms.

It also makes me ticked off in yet another new way, that when my brain scan showed unusual patterns of activity (both inside and outside the temporal lobes), the first thing the doctor who performed the scans wanted to do was find some combination of drugs that would magically make my brain scan show more standard activity patterns (something that I doubt was possible, but he managed to get me prescribed a combination of drugs that zombified me in his attempts to do this). I wonder when people will get it that non-standard brains show non-standard activity and that trying to force them into a standard activity pattern will only mess things up, it’s like trying to get a cat to wag her tail and bark, even if you could you don’t have a dog, you have a confusing and confused cat. This is my normal.

A quote from Alice Flaherty’s book on the subject, The Midnight Disease, (which I now need to get a copy of — she’s a neurologist who ended up with hypergraphia for some reason) says:

The sight of a computer keyboard or a blank page gave me the same rush that drug addicts get from seeing their freebasing paraphernalia.

Yes, exactly. My brother once said (looking around my house) he’d never seen so many things with keyboards on them in one spot before. There’s a reason for that, but at least it’s not a particularly harmful addiction (unless you count tendonitis). And I’m pleased that she notices so clearly that it’s the act of writing that’s the addictive part, not necessarily any intent beyond that. It’s very personal, and would take place even if I were stranded on a desert island with a keyboard-containing device of some sort. (And as friends will attest, minus a keyboard, I often start touch-typing in the air.)

So, yeah, anyone wondering why I write so much should actually be asking how I manage to write so little, if anything. My main trouble isn’t getting myself to write, it’s that I can’t not write, even if I’m coming up with the wrong words when I do it. And I have the massive stashes of random textfiles and printouts to prove it. I seem to have made it work for me, though, and it seems to be a decent trait for a prolific blogger, as long as I keep a handle on the “make this actually communicative” bit. ;-)

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.

26 responses »

  1. It’s the sort of thing that can be useful or problematic (or both at once).

    As the article points out, it can cause someone to write crappily… over and over and over and over and over again.

    Or to be unable to stop writing. (That’s a real problem for me, I could be sick and in a lot of pain and really needing to sleep, and still be trying to do writing or other creative activity.)

  2. “As the article points out, it can cause someone to write crappily… over and over and over and over and over again.

    Or to be unable to stop writing. (That’s a real problem for me, I could be sick and in a lot of pain and really needing to sleep, and still be trying to do writing or other creative activity.)”

    You’re right, that’s not useful. I’m a prolific writer, but I don’t have hypergraphia and I should really try and understand that just because a person writes very prolifically all the time that it’s not going to be problem free.

  3. Our problem is, often, not being able to focus on writing anything that we need to, and at the same time going on writing reams and reams about stuff that isn’t technically useful to our immediate survival. People saw us doing this when we were younger and assumed it was a matter of making a conscious choice– that we were “choosing” to prioritize things we “wanted” to do over things we didn’t want to. Actually, we’ve gotten stuck in writing stuff before that we really didn’t want to. We’ve gotten stuck on other activities that look superficially enjoyable, or really are enjoyable for us for certain spans of time, like perseveratively looking up information about a given thing. It’s really hard to explain to people how we can get stuck in it past a point when it becomes no longer enjoyable in any way, shape or form, and not even *wanting* to do it, but stopping it not being as simple a matter as just getting up and saying “Okay, I’m not going to do this anymore.” (This used to sabotage us a lot back when we first got online, when we’d literally sit up all night reading all the posts in a BBS or Usenet group. This of course caused people around us to declare that we had “Internet addiction,” and we didn’t, at the time, have the words to explain that it was not always voluntary and could even be unpleasant.)

    This of course is the part where we are supposed to go off talking about how much we need to find some kind of pill to correct our defect/imbalance/etc, I guess. (Despite the fact that we’ve never taken any kind of psychiatric drug that didn’t either make it worse or have no effect.) Actually, it’s kind of interesting that you posted this today as it’s somewhat germane to a discussion currently going on at the community I co-moderate. People for some reason seem to think that any kind of neurological difference which has downsides must automatically be referred to as a disorder, imbalance or defect, and that it can only be validly considered a natural variation if there are *no* downsides. Some people who have the exact same forms of variance as other people will go off insisting that those other people “must not be severely afflicted enough to understand the downsides” if those people say they don’t want to be cured or made normal in spite of the downsides. As if even a “normal” neurology doesn’t have downsides– but the downsides/drawbacks there are just seen as being “part of life.” And people go off railing at you with horror stories about how much they suffer to “prove” that you don’t know when you’re talking about, even when you have experienced all of those same things but still came to the conclusion that you didn’t want “normalizing”… etc… and don’t really listen when you talk about things like how you found certain traits unbearable under certain circumstances too, but when your circumstances changed, so did your perception/experience of those traits in yourself.

  4. …also, forgot to mention: A lot of the writing we do is a kind of mental sifting and sorting, I know, of working out things like… what was really true about our personal history as opposed to all the ideas and fantasies other people came up with about it.

    There are times when we would like to be writing something that could go on our journal, or something like, say, stories and poetry (which we used to write a lot more often than we do now, and we’d like to get back into it at some point, but whatever shoves itself to the forefront of our thoughts is generally what gets written. Sometimes there are things we can do to push that in a certain direction, but… when it really hits us to write something completely different, there’s not much we can do about that.

  5. I recognize that because I always done similar things. I never understood why but often I have an urge to write, also at moments that I have nothing to say. Around age 12 I started to write in a diary and soon I began to write all the titles of my 2000 comic books in that diary, cos I had nothing else to write about. When I was around 14, I got a type writer and often I took an article from a magazine that interested me and typed that over. The 21 notebooks that I filled up with numbers (mentioned at my Eight Random Things meme – point 8) is also such an example. Merely writing to be writing. However writing to communicate – producing text that makes some sense proves often to be difficult, for various reasons.

  6. like trying to get a cat to wag her tail and bark, even if you could you don’t have a dog, you have a confusing and confused cat.

    I like that metaphor. I’ll have to remember that one for future use. :)

  7. Being hypergraphic does not necessarily make a person a good professional writer. There is a whole lot of difference between private writing and writing to be read by others, whether online or published in newspapers, magazines, books etc.

    Maybe Amanda sometime in the future you may like to write a book about your life, not necessarily your autiebiography. Just an idea.

  8. Re, the NYT article: just my own personal thoughts here —

    I agree, they should have just given that boy the purple marker he wanted. Or, if there was a good reason why not (say, no purple markers there) then explain that to him.

    I notice they talk about how many boys/girls diagnosed as autistic are also labeled as having cognitive disabilities; although they do point out that some autistic girls with high IQ are missed (thus skewing the numbers), they fail to point out that at least some of the autistic people diagnosed with retardation might be misdiagnosed as such.

    There seems to be a kind of undertone through the article that just accepts as a premise that standard NT ways of connecting socially are the only ways to connect.

    Not that this is a terrible article. At least I don’t think it is, at least not compared to what’s typical. But it shows we still have a way to go before the kind of insights Amanda and other autistic writers share become more mainstream.

  9. I’m not sure if i’m hypergraphic, tho i’m pretty damn sure i’m hyperlexic – it looks vaguely obvious that they might be related?

    My problem isn’t exactly the same as yours – i’m constantly coming up with things i want to write, then can’t get down to actually writing them, and if i plan to write something, sometimes i end up being able to write almost anything but the piece i’ve planned to write… then, if/when i finally do get down to writing it, i find i can’t stop writing, and i end up with (for example) blog posts 2500 words long (that was a problem in my uni essays too, i found myself ending up 50% over the word limit, then feeling i couldn’t cut out anything, because every single word was crucial to the whole thing)…

    Anyway, Amanda, please don’t stop writing, because IMO yours is some of the best writing (not just about autism, but about just about anything) i’ve ever found anywhere on the internet…

  10. “minus a keyboard, I often start touch-typing in the air.” wow, just like in second life… (~_^)

    hey, so, with the word “hyperlexia” already being taken, what would we call compulsive reading (with concurrent or eventual understanding, though)?
    just curious if you had come across such a concept. there are some people that i know, both irl and through literature, that it’s ‘scary’ how many books they consume. J.L. Borges was one of them and he said that while some writers are proud of what they have written, he was more proud of what he had read. and i think he should be (although what he wrote was pretty amazing, too).

    all this being a tangent in order to not just say “wow, what a cool compulsion” and “another reason for why you are good at poetry” because they say the way to be a good poet is to write a lot and i guess if you HAVE to practice, well that is a big part of the battle.

  11. I’m a hyperlexic (from a family of hyperlexics) and I believe that term covers compulsive reading regardless of the level of understanding involved. (I’m pretty compulsive about reading this blog lately!)

  12. I very much agree with the idea that “This is my normal.” Although just now I wonder: What kinds of studies have created the history of neuroscience? While I agree that neurologists shouldn’t obsess over abnormal brain scans (at all), it would be great if we could glimpse what “studies have shown” because after all there one person’s experience may be the exception rather than the rule.

    Having this knowledge readily available en masse to every patient is a critical step towards our medical future.

  13. One use of the term hyperlexia is *just* compulsive reading, another use of the term is compulsive reading associated with language delay and autistic behavior. The second is often considered a problem, although I don’t agree with that.

  14. I’ll read the phone book just so to have something to read. But when it comes time to eat, I will eat AND read. If I have to choose between eating and reading, it may take some wandering around looking for a book but eventually I will eat.

    I suppose that there are some people whose need to read takes precedence over eating, and that could have life-threatening results.

  15. ah
    once again
    you have added a most wonderous awesomeness to my day. I just feel so absolutely self sccepting and normal within.
    I log on and truly you are the one person i wish to connect to and I really do not like connecting much to others any other way.

    I started writing seriously at 10 before that it was mostly survival and only that.

    I had a back injury around that time and i do not know if that may have helped to start my writing addiction but that was when it started big time.

    I have thrown out about as much as i have kept and have reems of discs as well. Thanks for the digital world and I do find writing by hand to be a mostly different experience and that i need to do it as well. Gah, here i am raw and unedited in all my english mixed up glory.

    Tht empty page or journal can also be a huge rush for me.

    I just want to let you know that as a person, I have not felt much love in this life. I have felt love and I now know this, as at one point I felt like I did not. I learned to identify the feeling in the heart and that that is what love is, it is a rush within my heart that feels good.

    Reading you brings me that rush within my heart and I have feelings. Ordinarily, I do not feel much beyond, fear, irritation, frustration or generally emptiness. My favourite feeling is emptyness.

    Yep, thanks.

  16. Huh. Just had a memory come back to me, of the first time I demonstrated (‘demonstrated’ meaning made clear to other people that I was actually reading and not just looking at letters) reading ability in a non-book kinda way, around age three, much to the amusement of my grandmother. I read aloud a word painted on a water tower: “NOR . . . MAL.” As in Normal, Illinois. :P

  17. (Amanda, don’t put this up if it is too personal)

    Evonne’s comment about her experience reminded me too of how in a family where hyperlexia is prevelent in more then one child it is just accepted as normal for the family by the family. Amanda’s oldest brother was riding in the car strapped into his car seat when he spontaneously read “milk” on a truck passing by. He was fascinated too by the game show” Concentration” dancing to the music and playing the game when he could barely walk…So it was no surprise when Amanda was an early reader . The most common way I remember Amanda falling asleep was with a book on her face or chest and a cat curled up by her side as she read herself to sleep in her crib. It was no surprise when her interest in astronomy led to her reading all the adult astronomy books at an early age ..It would have been more unusual and disturbing to me if she had not as this was just a progression of her early interest in the written word….More disturbing was her loss of spoken language for a while…when she pointed and grunted at what she wanted…and words were hard to come by…..It was a revelation later on to see how much better she could express herself with written words…using a keyboard…then if she had to deal with speech…At one point it all just became very hard….An educational testing place better defined the need for a keyboard…and an audiologist diagnosed the central processing disorder. I wish as a parent I had known about such testing earlier…as they led to better learning accommodations….and helped explain the difficulty with such tasks as keeping a desk, a locker or a room clean…The audiologist explained too the difficulty in a room full of people talking picking out the one to which she was supposed to listen. It was also an educator experienced with Irlen lenses who first helped us realize how faces were a jumble to her and she had virtually no depth perception and lost the ability to function under flourescent lights and had difficulty in rooms with white walls. When he put colored lenses in front of her to defract the light differently she saw my whole face for the first time…I can remember too her look of awe with her new colored glasses to see the ocean…Before she had been afraid of it…She also used to shriek in the car if we got close to a cliff…I realized then how terryfying it must have been. This too might explain her crying uncontrollably on a winding ride down the mountain when she was an infant as all she could see above her was moving canopy of tree limbs and not being able to judge their depth must have been horrific…Speaking of light and the difference in how some people seem to process it…an early observation I had about Amanda and her brother was their inability to sync with day and night…Both seemed not to have normal circadian rhythems…often sleeping in the day and playing at night. It was much later we found that the type of lightbox or light visor used in the morning for an hour would get circadian rhythems back in sync and day was more day and night a time to sleep. There were other things like noise overload for a person with super sensetive hearing that made going into a loud resturaunt impossible…Later we learned that an audiologist could fashion musician’s ear plugs to lower the sound level to a more tolerable level. I wish the things we learned through trial-and-error had been all summerized in a book somewhere so we could have found more helpful ways to do things earlier….I remember once when I was working in a hospital where they wanted us to be more empathetic to the elderly they had us do an exercise where we wore glasses that made us see like someone with cataracts…we had pebbles put in our shoes to make walking more difficult…They did a number of things to help us experience getting around as an elderly person might experience. It was eye opening…I wonder
    if teachers of autistic children should go through a similar exercise..Put sandpaper clothes on them…put lenses in glasses that distort faces…
    turn up the sound to a deafening level…paint the walls a really distracting color…let sound drift in and out…use storbe lights too…I wonder then
    how well they would learn and concentrate…and if they might then take what they had experienced and change the environment to fit the child…Not that every autistic has the same experiences…but whatever they experience should be considered in their normal environment and their school environment.

  18. “I wonder
    if teachers of autistic children should go through a similar exercise..Put sandpaper clothes on them…put lenses in glasses that distort faces…..”

    yes, they should! I wonder how receptive most of them would be to that idea. They might look at you weird if you were to suggest that……but hell, that’s their problem.

    TI

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