Posted in history, people, Saturday / samedi / sábado / lördag / Sonnabend or Samstag, Things I try to hide, Values & Ethics, Weave of Traditions

I hate to post this right now.

‘Because the man in question has helped me a good deal. We have a decent relationship and he is amazingly helpful and has sent me things that may well be the only things keeping alive. Nothing is simple in this world. Remember my grandfather’s fiddle. Only this man is not as bad as my grandfather, not by far. He has learned his errors. It is possible. And that is important. People think it’s not possible and they give the perpetrator no chance of redemption. That helps nobody. There are people who are beyond hope but in my case that is not true. But I have to talk about this. It is awkward because he just helped me a lot. But it is true regardless. So I have to say what I have to say, to bear witness to something most people refuse to acknowledge, and I have been putting this off far too long. Understand this post is not to punish the perpetrator, it is to explain what is possible, some things that most people do not think of.

So. I will call him John to be as anonymous as possible even though some of you know who he is.

I was molested from at least the ages of 11 to 15 by John. I have been hurt by other men, including something i am now told as rape (someone put his toes up my butt) but John did the worst damage.

It is easy to tell you how John threatened to butt-rape me. How he rubbed his penis on my butt. How he did sexual things to me that I was entirely unaware of at the time (Lolita has some scenes that explained to me how that is possible). I told him “Oh that is okay” and he very guiltily said “No, no, that is worse.” He feels remorse and went to therapy and tried to learn. He doesn’t even date now. These are facts. They are not the whole story but they are facts.

Anyway, so, the thing is, everyone things that child molesters are all pedophiles. That is, that they have a sexual orientation that gives them an irresistible attraction to children that they have trouble not acting on. But the most important message in this post is that this is not true.

So what is true?

I was molested because John was a misogynist, a big-time misogynist.

Most important message in the post.

The term incel didn’t exist back then. I know the history of the word, that it wasn’t always bad, that a woman invented it. But it has come to mean exactly what John was.

It matters that I am a woman. It doesn’t matter my inside gender. It matters that I am a woman, as in I belong to the class of people known as women, and misogyny is the hatred of that class of people. And that doesn’t change. And yes trans women are also women, I am not denying that. But I am also a woman and I can’t deny that. And I mean for the purposes of who is subject to misogyny. Or transmisogyny. Any kind of misogyny, and you are a woman for all practical purposes.

So.

John set a date by which he would marry.

It didn’t happen.

He picked a woman to marry.

She didn’t want him.

He could not accept this.

He tried to date a string of women, unsuccessfully.

John felt entitled to own women’s bodies. And use them however he wanted. And it made him angry when women would not do what we were told. Very angry. Very bitter. Very cruel. He threatened to threaten suicide to force a woman to have sex with him.

So the damage he did to me was not so much the things I listed above.

The damage he did was that he taught me all about women and he taught me all wrong.

He taught me to hate myself.

He taught me it was all right for men to treat women like things.

He taught me sexism and misogyny.

Those have stuck in my head longer than anything else he did. I am still disentangling them like the worst of my yarn monster.

But I asked him. I asked him why. I asked him why he did it.

And John said to get back at the world.

For not automagically giving him a wife when he felt entitled to a wife.

I was the smallest and most vulnerable girl he could get his hands on. Or his dick on.

And I had nightmares about him and back then people thought all nightmares about abuse were abuse flashbacks and 100% real. So I believed in the nightmares, I believed he anally raped me. My only anal rape came later in a psych ward. And involved feet, not penises.

This was the nineties which explains the confusion.

Anyway, for John, this was a power thing, he had power over me, and he used it.

He was not a pedophile.

He was a raging misogynist and what these days they call an incel.

The most important thing is his sense of entitlement to the bodies of women no matter what. And the rage tantrum he threw when he could not get his way with women his age. I was the target for all his rage and fear and disappointment and especially, especially, misogyny.

Which is one reason I need the word woman for myself no matter what else I feel. I can’t escape it. Do you think that little girl who survived being shot in the head, for trying to go to school, would have been shot any less if she was secretly a trans boy? Because she wouldn’t. She was a girl for all practical purposes and sometimes practical purposes are all that count. I am sorry that I don’t remember her name. I am still a little delirious from the hospital.

But I remember something like this:

I do not tell my story because it is unique. I tell my story because it is not unique.

Let me see if I can look up her name. That is from her Nobel Prize speech.

MALALA YOUSAFZAI.

Malala Yousafzai giving a speech. She has black shiny hair, brown skin, and an orange headscarf and robe of some kind, with a lace wristband poking out from underneath. She is holding a microphone. She is very beautiful inside and out, to me. I love her from a distance.

Anyway, she would be facing misogyny no matter whether she is really a man, woman, both, neither, some combination, whatever her gender identity is. For the purposes of misogyny you only need one way to be female, and there are many.

And the same is true of me.

John did not hurt me because he was a pedophile. He hurt me because he felt entitled to women’s bodies and I was a girl he had near total control over.

John, i know you will read this. I didn‘t want to write it in some ways, especially after all you helped me. But I think you, if no one else, will understan why I had to tell people the truth. I’ve been afraid to for far too long. I’ve been afraid. Of what will come raining down on me from family for writing this, of how you might feel after all this time.

But I also know that you take responsibility for your actions as much as you can. And you take what you did seriously. And if anyone is going to understand why I had to say this, it is going to be you. And you know, you know in your bones, like I know in my bones, that if you didn’t want anyone even anonymously telling why you molested a child, you shouldn’t have molested a child in the first place.

Because that is what I was. A child. And you hurt me. And you shouldn’t have. And you filled my head with the worst of misogynist nonsense. You learned. But you hurt me. You hurt me. And not just with your dick. Not even mainly with your dick. Your words and ideas hurt me the worst.

Your misogyny hurt me the worst. And your misogyny, not pedophilia, fueled the whole thing. And everyone needs to know that. For their own safety. Which is why I wrote this. For the safety of other people. Not to “call out” John, but to inform everyone that there are more than one reason for child molestation.

Also, thank you for changing. Thank you for the help. Thank you for getting help. Thank you for taking as much responsibility as you can. Thank you for having a conscience, that puts you leaps and bounds ahead of my grandpa. None of this excuses what you did, and you know that. But thank you for knowing there are exceptions.

And I am not telling anyone else how to feel about their molester. I am not telling anyone to forgive. I am not telling anyone how to feel. I am telling you how i feel. to the best of my ability. That is all. For now. I am sorry, I do not mean to air dirty laundry, but this is too important not to talk about.

I tell my story not because it is unique, but because it is not. Paraphrase, Malala Yousafzai.

I tell my story not because is unique, but because it is not.

Paraphrase, Malala Yousafzai

Thank you, everyone. Everyone. Including John.

Posted in disability rights, fear, Friday / vendredi / viernes / fredag / Frietag, Things I try to hide

Cuz I’m Blind (Viernes de Baja Visión: Low Vision Friday)

Mel's eyeballs pointing different directions due to congenital myasthenic syndrome.
Mel’s eyeballs, already pointing in different directions despite it being fairly early in the day.

My friend told me that facing my fears was gonna be important. I think she was right. Here’s one of them.

Here’s one of my weirder fears: Acknowledging that I have low vision, am partially sighted, partially blind, whatever you want to call it.

Understand…

  • I use a screenreader.
  • I learned emacs so I could use emacspeak to run my old laptop without ever having to see the screen. I would go long periods of doing all of my computer and online work using a full screenreader.
  • More recently, I have had extreme trouble reading anything visually longer than a couple paragraphs. I use a screenreader for that.
  • I can’t see cars even when they’re about to hit me.
  • I have been pulled out of traffic by both friends and strangers.
  • My ex insisted on holding my hand when I crossed the street due to my inability to process the visual information quickly enough to be safe around moving cars. I have a cognitive doppelgänger named Anne, and her significant other refers to parking lots as “Anne death traps” for the same reason. She’s been hit before.
  • When i was growing up, I never fell out of a tree, which I could feel with my whole body. But on flat ground, I often tripped or even fell due in part to being unable to see obstacles or feel my body properly. I did better with walking sticks or similar. (Also true of Anne.)
  • Doctors have checkboxed “low vision” on forms for me before without asking me, just knowing my vision problems.
  • I just can’t see obstacles fast enough to react to them. I walk straight into things even when I do see them, because even when I see them I don’t process visual information fast enough.
  • I can identify objects by touch far better than sight.
  • I can feel my way around much more reliably for understanding and navigating my environment, than I can see my way around. Seeing is like a backup sense at best.
  • I fall less in the dark than I do in the light because visual information is often just a distraction to me.
  • Sometimes I take my glasses off so I can navigate the world better.
  • I used to have an entire system where in new places, I’d grab one end of a scarf or sock and have a friend or caregiver grab the other, and then I wouldn’t bash into things and fall over nearly as much, and could find my way around rapidly.
  • I often stop and feel things with my hands or feet to understand them.
  • I understand things best through the physical movement of my body through space. I loved being able to feel the sidewalk through my power wheelchair even though the visual part of driving it around was grueling (another reason for a cane, whether or not I end up needing the powerchair again, which I suspect I do for longer distances).
  • I’ve been comparing my visual problems to blind people for a really long time.
  • I’ve been trying to convince people that spatial is not visual, because I am so very spatial that I used to have an automatic map of everywhere I’d ever been, yet so very much not a visual thinker and I often used the comparison of “the way blind people do spatial things”.
  • People often assume I’m blind without even asking, just from how I respond to my environment.

“Cuz I’m blind” has become my go-to reply when people ask me why I didn’t see something, which is pretty much always. Except, it’s not a joke, I really do count as low vision. I’ve been afraid to face it and some of its implications, but it’s true. And my second mom has told me that only living with me for six months has taught her exactly how bad my eyesight is.

It’s not conventionally awful, mind you. Without my glasses I can’t see well at all, but my corrected vision is almost normal, or was last time I got checked.

But.

I basically function like I have various forms of visual agnosias. That’s where you might have 20/20 vision (or might not), but you can’t understand what you see, or parts of what you see.

I also have really weird visual effects that I think are from a combination of overload and synesthesia. It makes everything a fragmented distorted mess. In new places, it can be severe enough that I understand nothing of what I see but get horrible motion sickness from all the moving pieces and no visual horizon. At least that’s how it was explained to me by a researcher once. I always had the visual distortions, but only after I became capable of motion sickness in my teens, did I start vomiting uncontrollably after traveling. Before that I could play with my vision almost like a toy and didn’t find the distortions distressing.

I have migraines and temporal lobe epilepsy. Each of those can cause its own temporary visual issues, from visual agnosia to various spots and lines and blobs and blank spots in your vision. One of my neurologists, the migraine specialist, suspects I am in status migraine aura. Status means constant. Migraine means the large set of things that can happen (not even close to just a headache) as a result of migraine headaches, anything from mild visual distortions to things that resemble a stroke if you don’t know what’s going on. Aura is the part of the migraine that isn’t the headache and usually comes before a headache, so includes all the visual distortions that come with migraines.

So — whether he’s right or not about the source of this being a constant migraine aura I don’t know but it sounds plausible — my visual field is filled up with lots of clutter that isn’t part of the real world or distorts the real world. There’s spots. There’s blank spots. There’s little black squares. There’s squiggly pastel-colored lines. There’s stuff that looks like water — both like looking through water up through a swimming pool, and like looking through light sprinkling rain falling diagonally. There’s all kinds of things that get in the way of seeing anything at all. There’s something that looks like rainbow-colored contour maps that can cover my entire visual field, and same with blobs of colored cloud.

Then there’s seizures. When I have them, I can hallucinate just about anything I’ve seen before in the past. Like one time it was the Dark Mark from Harry Potter, another time it was a doll from Japan that belonged to my mother. Both moved in a characteristic way. It’s rare that I have full-on visual hallucinations like that, but they happen during seizures sometimes.

Things can look like they’re moving when they’re not. Things can look like they’re stopped when they’re moving. Things can look like they are stopped in one place, then stopped in a new place, then stopped in a new place. Things can look like they are just pieces like a Cubist painting all pointing different ways. Things can look like all kinds of things. And they look quite interesting a lot of the time, some of this may help me in my art, but they aren’t really good for seeing.

Anyway.

Every time I go out, I risk falling, and cars are a hazard, and yet I have been reluctant to get a white cane.

I’m getting a white cane.

I’ve been afraid of the classic low vision problem of taking out your white cane to signal drivers the need for safety, but then pulling out a book and getting yelled at by people who don’t know that blind and low vision people can sometimes read. (And somehow think it’s their business. Why it’s their business, I don’t know. Even if it were somehow Against The Rules, it’s not like anyone’s getting hurt by the fact that disability isn’t as black and white as people want to make it.)

Understand — this means that ableism has filled my life so much that I was risking my life rather than risk the social embarrassment of getting yelled at by people who don’t understand my vision, don’t need to understand my vision, and shouldn’t get themselves involved.

I’ve heard of people doing the same thing with wheelchairs. I never had a problem with wheelchairs.

But growing up, I was always being told I “looked blind”. I asked, at one point, what people meant. Apparently it’s my posture, the fact I wear tinted glasses inside, the fact that I tend to stare straight ahead and not blink a lot, and the fact that I don’t react quickly to most kinds of visual information. (Small objects moving at a certain speed are a strong suit of mine. So like, if I try to play basketball the ball looks like a bunch of fragmented pieces, but if I play badminton or ping-pong it’s just the right size and speed I can be reasonably good at the sport.)

Anyway.

I’ve realized that every piece of adaptive equipment I already have is necessary, and there are more kinds I need.

If I don’t use my walker indoors, I fall. And yet I forget to use my walker. (Not this week much. Not with my hip possibly fractured. But usually. I’m trying to get better.)

And I forget to use my feeding pump properly.

And a million other things.

So I’m gonna try to learn basic cane travel. And at minimum I’m gonna get a signal cane for crossing the street. I’ve broken bones crossing the street trying to dodge cars I can’t see already. I don’t need to test how often I can survive that.

In addition to the agnosia-like stuff, by the way, myasthenia presents its own visual complications. There’s something called pseudomyopia which means my vision gets randomly and intermittently blurry. Then there’s also the fact that my eye muscles weaken so that my eyes point both out to the sides and one of them points downwards, resulting in double vision at best and terrible depth perception.

I also have the much more standard myopia and astigmatism.

But I need to get used to the idea that I’m low-vision, for real, not just something I say to laugh off the fact that I’m uncomfortable with physically not being able to see obvious things that are right in front of me.

Because I am.

And I need to start adapting to that and stop being scared.

People will think what they want to think no matter what I do. I might as well try and live the life I’m supposed to live, not the life other people want for me. It’s not like not having a cane has worked in terms of not getting treated as if I’m blind.

Cuz I’m blind. Or low vision. Or whatever. And it apparently shows, and always to some extent has.

I just don’t feel like hiding anymore.

Posted in Being human, Things I try to hide

Memory is complicated.

A sentence that may be difficult to understand:

I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.

Procedural memory, or implicit memory, is how you just know how to do things.  Especially physically — the classic example is riding a bicycle — but other ways as well.  Procedural memory is not only rarely a problem for me, but often a strength.  It’s why I’m such a good touch-typist, among other things.

Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something.  You remember facts, and events, and words and concepts associated with them, and those sorts of things.  That’s declarative memory.

Sometimes I gloss over the intricacies involved here and just say I have memory problems.  But that’s not entirely the case, even though it basically functions as memory problems  And it’s not a consistent thing even when it does exist.  And it’s not like I just, across the board, have trouble with memory.  Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.

As mentioned, my procedural memory has been excellent for as long as I know.  So much so that I almost overuse it to compensate for fluctuations in declarative memory.  So much so that I use it as a gateway to declarative memory in certain ways.

This is important:  This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual.  Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen.  Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have.  They never look at it as another variation on what humans can do.  I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.

Anyway, back to memory.

So, my memory issues are probably in several areas, but the biggest one is simply a voluntary retrieval issue.  In other words, it’s more about my general inertia than about actual problems with memory.

Inertia, for me, is all about volition.  Which is the ability to do things, directly, on purpose.  It’s not about the want to do things.  It’s not about the ability to do the things if the ability is triggered properly.  It’s about getting from want to do.  Most people have very little idea that there can even be a gap there.  For some people, that gap is so wide that we get various medical labels: catatoniaParkinson’sapraxia.  For some people, the gap is wide enough to cause trouble but it goes unrecognized,

Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action.  It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.

There’s a handy chart that I always pull out at these times.  It was developed by Martha Leary and Anne Donnellan.  They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:

Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.
Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.

Anyway, you’ll notice memories at the end of that list.  Like thoughts, perceptions, and emotions, those are not what people normally think of as actions.  But they are actions.  My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways.  And memory is far from unaffected.

So I have what seems to be an inconsistency to my memory:  I can’t recall things on purpose, and at any given time I can’t recall most things.  When people see this, and they see it often, they say I have a terrible memory and leave it at that.  And I test badly on most formal tests of memory.

But.

If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.

Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like.  I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known.  Generally — not always — when I have access to a memory, my memory is extremely good.  Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.

Good doesn’t mean perfect.  It just means good.  My memory is as fallible and malleable as anyone else’s.  Anyone who thinks theirs isn’t is fooling themselves.  But I often remember details others don’t, and I remember things more accurately on average, when I do remember.

I cover for the lack of access to most of my memories in a variety of ways.  One is by relying on procedural memory for more than most people rely on it for.  This gives the impression of more competence.  I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all.  And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues.  I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.

So there’s a problem of access to memory that has to do with inertia.  And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.

But there’s more to it.

Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.

Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly.  After a time (days, weeks, months), those recent events come back into memory.

When I’m delirious, I’ve lost memories .  Sometimes even after I’m not delirious anymore they never come back.  I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious.  When I got better I got back that period, but lost a couple months in between, never returned.

But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function.  But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.

And it does come back.

But the world is a very weird, scary place when most of is blank.

Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.

I have recently begun telling people about this because my friends have told me to hide less from them.  But it’s frightening.  I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions.  And that’s dangerous.  There are reasons i cover for it.

But understand that I am always covering for it.  This never goes away.  It’s never not been there.  There are additional issues over the years what with delirium, but this happens all the time.  It happened to me pretty extremely this week because of an overly long, tense medical appointment.

And I’ve given you the simplistic version.  There’s a lot more to it than this.  Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that.  And I need to be more open about how my mind actually works.  There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear.  I’m tired of covering for thm.

 

 

 

Posted in Things I try to hide

I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

Photo on 6-18-18 at 6.24 PM.jpg

When I can remember the rock.