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.

Posted in Being human, Blogging about blogging, Days of the Week, fear, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Fear for Courage Friday

In Life’s name and for Life’s sake, I assert that I will employ the Art which is its gift in Life’s service alone, rejecting all other usages. I will guard growth and ease pain. I will fight to preserve what grows and lives well in its own way; and I will change no object or creature unless its growth and life, or that of the system of which it is part, are threatened. To these ends, in the practice of my Art, I will put aside fear for courage, and death for life, when it is right to do so — till Universe’s end.

Wizard’s Oath from Diane Duane’s Young Wizards and Feline Wizards series.
fear for courage Friday
Fear for Courage Friday

…To these ends, in the practice of my Art, I will put aside fear for courage…

Wizard’s Oath

This is a Friday topic about facing fear.

Many people who know me have compared me to Neville Longbottom. In that, like me, he started out timid and afraid of everything. But by the end of the series, he’s faced up to so many of his fears that he commits feats of extreme courage. Including deliberately facing the Cruciatus Curse, a spell that had been used in the past to torture Neville’s parents until they couldn’t function anymore. He faces up to his worst fears and then some to protect other children — and adults, but especially other schoolkids — from Voldemort’s followers.

Gryffindors like Neville are known for their courage, but people from any House can be courageous. And I’d argue that the different Houses emphasize courage in different ways, and different aspects of courage, although any kid from any House can of course have any kind of courage for any reason. The kind of courage Neville shows — putting himself into terrifying situations in order to protect others — is both emphasized in Gryffindor and Hufflepuff. Like Neville, I have a lot of traits of both Gryffindor and Hufflepuff and I do identify a lot with his character.

Part of all these new blogging ideas have to do with facing my own fears. So having one of the Friday topics be facing fear makes sense.

Mind you, fear isn’t bad in and of itself. But there’s allowing fear to guide you by giving you information, and then there’s having your entire life dominated by fear. And I don’t want my entire life dominated by fear.

I have a friend who says she chooses one new brave thing to do every day, and then does it. That would sound like an exercise from a self-help book without the background knowledge that my friend came out as bisexual and soon thereafter as a trans woman in the wake of the Orlando shootings. She isn’t screwing around, she knows what’s at stake, and she knows she wants to put herself out there both for her own sake and that of others. She doesn’t want to live her life in hiding. I had a similar reaction to those shootings, like I wanted to be more visible despite the danger. For many reasons, too complicated to explain if you don’t understand already.

When my father was dying of cancer, he said that dying of cancer was his worst fear. We talked about dealing with fear of death and dying. And I said that as far as I could tell, the only thing to make a difference to deal with that kind of fear is to find the deepest form of love — a property of the universe, not an emotion, in this case — and follow it wherever it goes.

My father took that advice and ran so far with it that my only fear is I’ll never be able to live up to his example. He died well, and bravely, and with love.

I have a few friends whose courage has been making national news with everything ADAPT is doing to try to secure rights for disabled people in America right now. It makes me proud to even be able to think to myself, “I know these heroes personally…” and not have it be some sort of inspiration porn thing.

Another friend graduated from college as a nonspeaking person with developmental disabilities and made a movie about it. Which anyone who’s been even just the first in their family to go to college knows is gruelingly difficult and full of new fears to face every day.

Honestly one of my fears is that I’ll never be as brave as so many of my friends and family and people I’ve known. I know a lot of really tough-as-nails people. But suffice to say I know a lot of really brave people and I hope it rubs off on me Neville-style. Unlike Neville I think I’m genuinely a Hufflepuff deep down, but courage isn’t just a Gryffindor thing.

But at any rate, this is the Friday topic for anything regarding fear, courage, facing fears, and things of that nature. Hopefully I’ll eventually have things to fill it up with.

My friend suggested that writing about my fears is itself a brave thing to do that can benefit other people. I think she is probably right.

fear for courage Friday
Fear for Courage Friday

Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Friends and Family Friday

friends and family Friday
friends and family Friday.

Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.