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 Being human, Monday / lundi / lunes / måndag / Monntag, Values & Ethics

Two Religious Traditions, Very Similar Message

A pslr left hand with blue shirt sleeve, holding a hazelnut.
A hand holding a hazelnut.
/./

And in this he showed me a little thing, the quantity of a hazel nut, lying in the palm of my hand, as it seemed. And it was as round as any ball. I looked upon it with the eye of my understanding, and thought, ‘What may this be?’ And it was answered generally thus, ‘It is all that is made.’ I marveled how it might last, for I thought it might suddenly have fallen to nothing for littleness. And I was answered in my understanding: It lasts and ever shall, for God loves it. And so have all things their beginning by the love of God.

In this little thing I saw three properties. The first is that God made it. The second that God loves it. And the third, that God keeps it.”

Julian of Norwich, English medieval mystic, Revelations of Divine Love

Some people take this as meaning that God will take care of everything and we have to do nothing. My take on it is that we have been handed this one fragile little place, that we wholly rely on, and that we need to take care of forever or we are in deep trouble. Then I ran across this, in a context that gave it a very similar meaning:

A tarot card, "The Sun of Life" from the Wildwood tarot deck. It shows a human figure standing in front of a blazing sun, with yellow light coming from the sun and white light

The Sun Of Life is a tarot card I ran across as the most important card in a situation involving the way the world is right now. The card depicts the idea that everything important in life, humans get from sunlight and love associated with sunlight. It reminds me of my need for fire in order to be alive, but even more so reminds me of Julian’s vision. It’s a picture of so much of what we have to lose, and how important it is not to lose those things. Also the artwork is beautiful2.


Footnotes

1 I am neither Christian nor neopagan, but I respect both of these and other forms of religion and spirituality. That respect means that I ask others to respect other people’s belief or lack of belief (atheists and agnostics welcome. too). You don’t have to agree with me or anyone else, just please be nice to people.

2 Wildwood Tarot deck. Mark Ryan and John Matthews, card illustrations by Will Worthington.

A stained-glas-looking portrait of Julian of Norwich in her ancorhold with a cat, writing in a book.

Julian of Norwich

was a medieval anchoress, a woman’s version of a hermit nun in Catholicism in those times. An anchoress would obtain her last rites and then be walled up in an anchorhold which was usually part of the church. She would have had both rules and freedoms that other nuns did not have. She stayed in the anchorhold until her death. Julian also happens to be the first woman to write and publish a book in the Engilsh language. Her Revelations of Divine Love, or Showings, detailing her spiritual experiences and how they changed her life. She was sometimes controversial for things like calling Jesus “mother”.

Probably because of this kind of thing, she almost but not quite became a saint in Catholicism, Lutheranism, and Anglicanism. But she is venerated in all of those denominations regardless of sainthood, and has been honored by these versions of Christianity.

Like many mystics, Julian was more concerned with her thoughts on God and theology than on getting personal recognition, so we don’t even know her name. Julian is the name of the church she lived in. Most of what we do know, is guesse based on what was probably going on when she was an anchoress. For many things, including whether she had a cat (anchoresses were advised to “keep no beast save one cat”), are just people’s guesses about her. But her hazelnut vision outlives her, and I seriously hope that everyone remembers we were given this little fragile world to take care of, it’s all we have, and now is the time, not years from now — we are already late but we can mkae a difference still.

Posted in Being human, family, friends, Monday / lundi / lunes / måndag / Monntag

I’ll never write this one if I try to explain it all either.

Understand guys — I wanted to make y’all a post. I know exactly how I want it organized. I know what I want to put in it. And the whole point is showing you I love you. But for whatever reason, I can’t write it as intended. It’s like walking through sludge until I’m surrounded by bramble and can’t find my way out in any direction. Then my head gets tangled up in everything else and I run off and don’t write.

The reason it was going to be so complicated was because I wanted to really pay tribute to each of the individual people in my life who currently count to me as family. This is difficult for many reasons. One reason is juggling privacy concerns — who to use names, who to use initials, what details to leave in, what details to leave out, what details to change. I’m not talking about legal limits on privacy, I’m talking about my attempts at common decency. Which are sometimes stricter.

So there’s a post I want to make, and I’m trying to make it. And I think I’m gonna succeed at making it, at this point. But this is the lead-in to it — that again, I’m having issues with trying to get everything said. So I’m trying again for allowing myself to write without writing as perfectly as I want to.

Because if I had my way?

I’d have a drawing for each and every one of you, or a photograph. And a little bit of commentary. And it’d all be done so that only some people were identifiable, and only in some ways, and so forth. And that’s just not how it’s gonna happen.

The most likely outcome is I’m gonna write a summary about my relationship to y’all and what it means to me, but without as much personalized touches as I would like. And then maybe the personal touches will trickle through to the light of day in the end when I’m done writing all this other stuff.

But for now? This is all I can promise. This post here. Because I already wrote it. But I am pretty sure I will be able to at least write a couple short posts. Where “short” doesn’t necessarily mean the post is short, it just means… something in my brain leading up to the post is shorter than it would’ve been otherwise.

This gets a little bit carried off into corners of my brain it’d never come back from — if I were to explain to you the communication and cognitive issues that I am having here? If I took more than just these couple sentences in this short paragraph, to describe it? I would never get the post written. So this paragraph has to be all, for now. Suffice to say temporal lobe epilepsy does not make for being an efficient writer.

Anyway I’m gonna go and try to write the best post I actually can write, as opposed to what I want to write, and that’s gonna have to be good enough.

Posted in family, Sunday - dimanche - domingo - söndag - Sonntag

Short Sunday: Things I Learned from Anna

Memory aids can take the form of jewelry.

My mom, Anna, was part of a writing contest at community college. Same district my best friend and I eventually attended. Her writing teacher had encouraged her to enter the contest. My father, Ron, discouraged her at first, said he was afraid she would fail and be disappointed.

Anna got mad and told him that she let him risk his life going to the mountains because it was important to him, so he had better support her in her desire to take part in this writing contest. And that she was a big girl and could handle losing.

Ron became her biggest supporter as a writer, as well as a trusted proofreader. They worked on her entry, a short story, together. Ron did most of the test-reading and provided valuable feedback. My mother entered and won the contest. The money was just enough to buy a nice locally handmade turquoise ring. She wore it to remember the contest, to remember she was a published writer now, to remember what the whole experience meant to her.

When I was a child, I lost another handmade ring from the same store. I looked everywhere and never found it. As an adult, I found it online through a pawn shop on eBay. I wore that ring to remind me of my mother since I am bad at staying in contact with everyone, including close friends and family. I did not tell my mother about the ring, but that same week she sent me her turquoise ring and told me the story behind it.

It turned out she wanted me to have it because she saw my name everywhere now and wanted to remind me that we are both published writers and have that in common. And she wanted to remind me of what it took for her to get there, I think.

So jewelry can mean a lot of things. And reminding me of people and ideas that matter to me is one of them. I wear this ring to honor and remember my connection to my birth-mother Anna at all times. And the fact that we are both writers, that’s part of the connection.

Posted in Days of the Week, Sunday - dimanche - domingo - söndag - Sonntag, Topic Themes

My Cane Came Today! (Storytelling Sunday)

Mel holding up a white cane to a mirror and taking a selfie.
Mel taking a selfie holding a cane up to a public bathroom mirror.
Mel’s cane as seen from above hir walker, sliding along the floor.
Mel’s cane as seen from above hir walker, slightly different position, sliding along the floor.
Mel’s cane as seen from above hir walker, slightly different position, feeling along the floor.

Hopefully the captions on those photos will do the trick. This is just some pictures of me with the white cane that came today.

I’m already discovering that it helps me use my vision in ways I couldn’t have imagined: When I’m feeling ahead for obstacles, that means I can look around me. Normally looking around me is a big source of falls. If this continues, this is huge. But I knew it was the right idea… I’m actually probably a little unbearable to people around me with the level of excitement at being able to get around better, now that I’m not scared of this. It feels like one more way of being me again, and not someone everyone else wants to make me into. If this is how I function best, I’m not going to knock it and I’m not going to run from it anymore.

Storyteling Sunday, written on red text, on a striped yellow/green/black/white/cyan background.
Storytelling Sunday.
Posted in disability rights, quotes, Sunday - dimanche - domingo - söndag - Sonntag

The Things I’ve Heard About My Eyes and Brain… (Storytelling Sunday)

Some of the words used in this post are really ugly. That’s because they’re the really ugly words that I heard. I’m not gonna sugarcoat this. But if you can’t deal with reading the r-word in either of its common forms, or hear “psychotic” or “blind” used as insults rather than descriptions, you might want to skip this.

Storyteling Sunday, written on red text, on a striped yellow/green/black/white/cyan background.
Storytelling Sunday.

The story here, the reason it’s on Storytelling Sunday, is because each of these quotes forms one little piece of a long story that’ll be familiar to way too many disabled people. And while I’d like the story to stand on its own, I’d just like to comment that I don’t think lesser of any group targeted by such speech. And I don’t even necessarily think lesser of the people creating this speech — it’s very destructive, but it happened a long time ago to a bunch of people I’m leaving anonymous on purpose because who knows how they’ve changed since then or why each one said what they said.

You look BLIND.

close family members

What, are you a RETARD or something?

other kids

You look PSYCHOTIC.

close family members

You look RETARDED.

close family members

Do you have a HEARING PROBLEM or something?

lots of people

What are you BLIND?

lots of people

People think you’re BLIND.

close family members

People think you’re RETARDED or something.

close family members

People think you’re PSYCHOTIC.

close family members

You TARD.

close family members

You’re HALF A BUBBLE OFF PLUMB.

close family members, therapist

You’re A FEW SANDWICHES SHORT OF A PICNIC.

close family members

You’re a FEW FRIES SHORT OF A HAPPY MEAL.

close family members

You DON’T HAVE ALL YOUR OARS IN THE WATER.

close family members

You’re a little bit TETCHED.

close family members

Oh don’t worry, we’re all a little SLOW in this family!

close family member regarding family reunion

It’s only after living with you for six months that I can see the degree of your VISUAL IMPAIRMENT.

close family member

You look STUCK-ON STUPID.

kid

You sure you’re not BLIND?

practically everyone

You CAN’T SEE can you?

practically everyone

Hey look at that BLIND [guy/lady]!

Lots of strangers

You know ‘gifted’ is just what they tell RETARDS they are so we don’t have to tell them they’re RETARDED…

lots of kids

You just seem like a SPECIAL ED KINDA GAL…

A hairdresser who’d asked whether my school was a ‘special school’ (it was).

These things were said in all manner of tones. Some people seemed to be trying to be affectionate. Others were aiming to insult and harm and bully. Others were just confused or curious. But all of this has an effect on you when you hear it day in, day out, every day, in one form or another. Especially when it’s coming from loved ones and people who are supposed to be loved ones.

I’ve asked about the blind part. Apparently it’s about a bunch of things: I stand too stiffly. I don’t make the normal eye movements and look straight ahead too much. (This is just called “staring” and apparently makes me stand out.) I don’t respond normally to visual information. (I am low-vision, guys…) I wear dark glasses in low light. I don’t always move my head or eyeballs in ways that would indicate noticing things visually. I could go on. Apparently I have many things that make me “look blind”.

But hearing these things so much made me think there was something wrong or shameful about being low-vision.

And, well, as I said, the story told by the above quotes most likely speaks for itself when any disabled person who’s heard similar reads it. I just want to make sure people know, my problem here is not “OMG I’m being compared to people I think are inferior,” it’s “OMG I’m being compared to people the speaker thinks is inferior, and being thought inferior myself, but I wouldn’t be inferior whether or not these things were accurate descriptions.

Right now I’m talking about blindness, but blindness is just one of the things that was repeatedly called to my attention as a sign I was Doing Something Wrong, or rather Being Something Wrong (you know you’re being accused of Being Something Wrong when the local kids use your full name as a cuss word growing up). Which — no — doesn’t make the slightest bit of sense, but ableism rarely does.

But it does get inside of you, telling you these things do make you inferior (whether they exist or not barely matters). And I’ve been ridiculously afraid of being low-vision for way too long. Time to change what’s inside my head, time not to let this crap into my brain anymore. You don’t have to accept every idea handed to you, something that was news to me when I learned it rather late.

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 Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Monday / lundi / lunes / måndag / Monntag, Saturday / samedi / sábado / lördag / Sonnabend or Samstag, Sunday - dimanche - domingo - söndag - Sonntag, Thursday / jeudi / jueves / torsdag / Donnerstag, Topic Themes, Tuesday / mardi / martes / tisdag / Dienstag, Uncategorized, Wednesday / mercredi / miércoles / onsdag / Mittwoch

Monday’s Child rhymes.

Monday’s child is fair of face.

Tuesday’s child is full of grace.

Wednesday’s child is full of woe.

Thursday’s child has far to go.

Friday’s child is loving and giving.

Saturday’s child works hard for a living.

Sunday's Child

But the child who is born on the Sabbath Day is bonny and blithe and good and gay.

Other variants:

But the child that is born on the Sabbath Day
Is bonny and blithe and good and gay
Monday's child is fair of face
Tuesday's child is full of grace
Wednesday's child is merry and glad
Thursday's child is sour and sad
Friday's child is loving and giving
And Saturday's child must work for its living.
Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is sour and grum,
Thursday's child has welcome home,
Friday's child is free in giving,
Saturday's child works hard for his living.
And the child that is born on Christmas Day
Is great, and good, and fair, and gay
Monday's child is fair of face.
Tuesday's child is full of grace.
Wednesday's child is loving and giving.
Thursday's child works hard for a living.
Friday's child is full of woe.
Saturday's child has far to go.
But the child that is born on the sabbath day
Is brave and bonny, and good and gay.

Monday’s Child:

  • Fair of face
  • red and spotty

Tuesday’s child:

  • full of grace
  • won’t use the potty

Wednesday’s child:

  • full of woe
  • loving and giving
  • sour and grum
  • merry and glad
  • won’t go to bed

Thursday’s child

  • has far to go
  • has welcome home
  • is sour and sad
  • will not be fed

Friday’s child:

  • loving and giving
  • full of woe
  • free in giving
  • breaks all his toys

Saturday’s child:

  • works hard for a living
  • has far to go
  • must work for its living
  • makes an awful noise.
Sunday's Child

Sunday’s Child:

  • bonny and blithe and good and gay
  • blithe and winsome and happy and gay
  • great and good and fair and gay
  • brave and bonny and good and gay
  • is a pain in the neck like the rest, okay?

For my blogging topics, this is the perfect kind of thing. There are many versions of this rhyme, so many possibilities for most of the days. And each topic could be a lot of different things. “Fair of face” could turn into a discussion of beauty, or a discussion of racism and colorism, or a discussion of albinism, or any of a number of other things, depending on what was going on that day. LGBTQ issues could be tied to the word ‘gay’ even though it’s clearly used here to mean ‘happy’. (And Sunday’s Child could be used as a discussion of LGBTQ issues or a discussion of happiness or a lot of other things.)

Anyway, there’s so many versions of this that I’ll probably be adding onto it as I hear more of them. For now, though, these are what I’ve got, and any of them could be a number of different blogging topics.

And I have to say I love that the luckiest kid always gets called ‘gay’. I know that’s not the meaning of gay they were going for, but I love it anyway. And any meaning of any of these words is fair game for my purposes, which are to organize the way I blog for a number of important reasons. I can’t explain them all but I do have reasons.