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Go light your world

  So carry your candle, run to the darkness Seek out the lonely, the tired and worn And hold out your candle for all to see it Take your candle, and go light your world I went to a Christmas Eve service on, well, Christmas Eve. We closed with Silent Night by candlelight. One of,…
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If there’s any hope for love at all, some walls must fall

Some walls are made of stone,
Sometimes we build our own
Some walls will stand for years,
Some wash away with tears
Some walls, some walls

Anyone who knows me knows that I’m a ball of nerves and anxiety. Most people know I have a fairly traumatic past, albeit  bits and pieces of the details. And many have asked how the heck I survived  it. They’ve asked how I’ve gotten through. I’ve always just kind of shrugged – I kind of survived to prove the whole world wrong that I couldn’t (want me to do something? Tell me I can’t or tell me it’s impossible. I WILL prove you wrong.)

I survived by building walls. It wasn’t safe to cope with things as a child, it wasn’t safe to let anyone know how broken and upset I was. So I built walls. For years, those walls have kept me safe. It’s how I survived a painful childhood, it’s how I coasted through college. I wasn’t in a safe place to cope, I wasn’t in a safe place to deal with with everything being thrown at me.

Some walls are lined with gold
Where some hearts stay safe and cold
Some walls are made of doubt
Holding in and keeping out

And so, I built careful walls to keep myself safe and to, quite literally, survive. I didn’t know who was safe and who wasn’t. I’d been backstabbed so many times that the thought of letting anyone see past the walls was terrifying. I’d break down the walls, little by little, and then realize it wasn’t safe and go back into hiding behind the walls.

After so many years of hiding behind careful walls, it has a tendency to blow up spectacularly  in your face. You see, those walls have been up to keep my heart safe. To make sure that no one can hurt me. But here’s the thing.

How will you ever know what might be found
Until you let the walls come tumbling down
If there’s any hope for love at all,
Some walls, some walls must fall

It took years for me to build the walls, years of closing people out and pushing the world away. I don’t know how to let the walls fall. Everything has been cooped up, pushed in, so tightly protected for so long that while the walls need to come tumbling down, I am absolutely terrified of what will happen if I start breaking down the walls. It feels like a dangerous game of Jenga – that if just one brick is removed, things may stay stable but if too many bricks are removed, everything comes crashing down out of control and I won’t be able to stop.

But yet…if I want love to win, if I want to ENJOY my life, if I want to THRIVE, the walls have to come down and I need to deal with the reasons I built them in the first place. If I want to live without fears, pain, and anxiety consuming me…the walls need to come down. I just have so many fears of what will happen if I let the walls come down. But what is scarier? Living with the walls I know and the familiarity of depression and anxiety  or finally seeing what is beyond that? Which one is more worthwhile? I just don’t know how to bring the walls down, but I think I’m finally ready to learn.

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When chronic illness becomes acute

I am chronically ill. That is no secret. I cope with it as well as I can – I have my good days, I have my bad days. I have the days where I can do things, and I have the days where I lay in a pitiful puddle on the couch with blankets and my stuffed monkey (ideally, a cat or two has joined me).

As a result of chronic illness, I’m pretty tolerant of pain and even the occasional acute illness. But then, you have your chronic illness becoming acute. And that’s when it gets hard. That’s when things start falling apart. That’s when my coping becomes not coping as well as I once did.

As you may have noticed, I’ve not been updating as much as usual. November considered of three ER trips, one urgent care trip, multiple outpatient trips, and an inpatient hospital visit. Things are still bad. My health is still gone.

Things got better for a few days, and then came crashing down again. I try so hard to strike the balance – how do I ration my energy? How do I do the things I need to do? How do I do the things I want to do? How do I live my live and enjoy the ride, vs just hanging in there?

I try so hard to be a good disabled person. I try to stick to my upbeat, happy-go-lucky, spunky self. I try so hard to not be bitter, to not be cynical, to do all the things sick people are supposed to do – roll with the punches, act like I’ve got my act together, keep the delicate balance of keeping real while still keeping certain things quiet.

But it’s at the point where I can’t hide how sick I am. I can’t hide how exhausted I am, despite sleeping. I can’t hide the coughing. I can’t hide the fact that I’m in an incredible amount of pain. I can’t hide the fact that I’m terrified my NF is taking over my life and it isn’t just a minor hiccup. It’s scary. And it’s so *hard*.

I hate the blurred lines between acute and chronic. I hate the fact that my activism and advocacy – the two things I love doing almost more than anything, are taking a hit. My relationships with friends. The things that need to get done simply don’t. I try so hard, I struggle so much, but when chronic becomes acute… it gets hard.

Most of my acute health updates will be published on my CaringBridge, but as this is more general related, I put it here. Because I am sure others can relate to the struggle. The struggle when chronic becomes acute. When accepting being disabled becomes desperately searching for answers and hope and treatment. When trying my damndest just to stay comfortable becomes a struggle.

Be gentle. Handle with care. Because when we cross the delicate line from chronic into acute, that’s when we need your support and for you not to leave us.

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Babyz and my venture into “fandom”

In 1999, a now somewhat obscure computer game called Babyz was released. It was a three years later when someone I went to high school with gave me a copy of it. In retrospect, it was really kind of bizarre. I was essentially a digital pageant mom, y’all. The game was about, well, raising babyz. You taught them to walk, you fed them, you played with them. There were also versions of the game calls Catz and Dogz, and I recently found my discs for those… but that’s another story.

In 2002, I was fifteen years old. I went to a private Christian school. My home life was, without giving explicit details, less than ideal. The details are horrific, but unnecessary. I’d been online before then – I’d been on other message boards, read fanfic, wrote aardvark fanfiction, etc. But Babyz? Babyz was my introduction to fandom. I’ve said off and on that Harry Potter was, but that’s not entirely true. It was Babyz.

There was a Babyz RP board, so even after my aardvark fan fiction days, there was roleplaying. Of a computer game. About babyz. I never said my younger internet days weren’t weird, y’all.

I got my early internet message board moderating experience. I learned HTML and CSS thanks to Lissa Explains and fansites (which unless you know my info from those days, those websites are staying buried in the abyss, thanks). I made friends I still talk to frequently today and as a direct result of those message boards, I moved to North Dakota.

 

People make fun of internet communities, but as a lonely teenager, late nights talking with my Babyz friends saved my life (until I discovered JCY and the Zee a few years later, and gained even more lifelong friends). As a lonely, isolated teenager in Ohio, having a game to escape to? Having a website to run? Entering my digital kids in pageants? Really, this is odd to explain to an outsider…

I often joke that you can tell when I met someone by what nickname they refer to me as. I no longer answer to my birth name, but the Zeeps called me Angel for years, and I still answer to that though I think they’ve mostly switched to Nora. My Babyz Community people that I still talk to call me Nora now, but the nickname Anniebear is still very recognizable.

It was one game. It was one friend saying “Hey, I think you’d enjoy this game.”

And that one game changed my life.

 

There were other communities I was involved with as a young teenager – some of the more typical ones, like Neopets, and some other more offbeat ones, like Wajas. But nothing, bar none, will be like Babyz.

 

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I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

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To the autistic child

To the autistic child,

Hi! I see you. My name is Nora and I’m an autistic adult. We’re pretty awesome, if I do say so myself. It isn’t easy being autistic, and I wish there are some things that I had been told. That’s why, little one, I’m writing this letter to you. You may not know me, but maybe someday we’ll get to meet each other. Maybe we never will and we’ll only talk on the internet. Either way, you’re loved and so very amazing. Your brain is so COOL! Isn’t it nifty how different people are? Isn’t it nifty how different brains can be?

I don’t want to sugar coat things. Sometimes it’s hard being autistic. You know all those bright lights and loud noises? Yeah, sometimes I want to melt down, too. And sometimes I do. My brain just gets all these signals from different directions all at once and cannot tolerate it. And you know what? It’s okay. It hurts, and it’s okay to let people know we’re hurting. People may get annoyed or frustrated when we melt down, but we simply don’t have the words to articulate what’s going on inside our heads. And you know what? That’s okay. It isn’t our fault that sometimes we’re overwhelmed.

Sometimes, you know those little movements we make? We flap our hands, we rock back and forth, we spin around. We fiddle with toys in our hands or we wear special bracelets or necklaces. Sometimes we chew our shirt collars. Sometimes we make certain sounds. This is called “stimming”. Sometimes it calms us down, and sometimes it makes us feel good. You know what? It’s okay. It helps settle us down in a big, scary world. If it doesn’t hurt someone else, it’s okay for us to do it. Part of taking care of ourselves is doing things that helps us cope, and so that’s why we stim.

Sometimes we find a topic we like and just want to talk about it a lot. Our brains are like soil – the little info seeds take root and grow into various things we just love to talk about. Some people call them “special interests”, others call them “obsessions”. I just like calling them “interests”. Sometimes we just kind of info dump on them, which means just blurting out everything we know about the subject. This is okay! It’s part of what makes our brains special.

Maybe you have trouble doing, what many call, “using your words”. I don’t like that phrase. Words are hard. Not everyone can talk with their vocal cords, and that’s okay! Some people use sign language, which means they talk with their hands. Some people use what’s called AAC, which means they use a special device or iPad app to talk. They type the words into it or tap a picture, and it says their words for them. Little one, all forms of communication are valid. It doesn’t matter if you speak it, move it, or tap it – your words MATTER and we (the autistic community and those who love you) want to hear what you have to say.

Sometimes when we talk to people, we use words we’ve said before. Or maybe phrases we know from video games, TV shows, movies, or books. Or maybe phrases we’ve made up that have special meaning. This is called “scripting”. Sometimes, when we’re asked a question we just repeat it back. For example, maybe we’re asked “Do you want milk or juice?” We might just say “or juice”. This is called “echolalia”. Sometimes people got frustrated that we don’t seem to understand what they’re saying. But most of the time, we do. We just are communicating in the best way we can. But when people can learn our scripts, we can adapt and learn to communicate with them in a way that’s accessible to everyone.

People WILL sometimes talk about you right in front of you. People WILL sometimes say you don’t understand what they’re saying about you, because you’re autistic. People who say they love you may say mean things about you in front of you. People may record your most vulnerable moments, and place them on the internet for the world to see, claiming to raise awareness for you. They’ll claim you don’t understand. I know you understand. You may not look like you’re paying attention, but in your own way you are taking in the world around you. But even if you feel like no one else understands you and no one else loves you, know there’s one person who has never met you who would move the world for you, if she could. Know there is one loyal, passionate person who is fighting for your rights as an autistic child.

Precious child, you are fine as you are. You don’t have to change to fit in. You don’t have to be not YOU in order to be loved and accepted. Some people are autistic. Some people are not. You’re autistic. It’s okay to say no, even in a world that teaches you to say yes and obey every order. It’s okay to let people know you’re in pain. It’s okay to stim. The world wasn’t built for autistic people, and we have to learn to live in it in whatever way we can. Sometimes, people don’t understand our ways but that’s okay, because we don’t understand their non autistic ways!

I hope that one day you find acceptance, and not awareness.

Love,

Nora.

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Sometimes I’m not okay

Sometimes it’s hard being disabled. I talk a lot about how I’ve accepted it and I’ve talked a lot about how I’m at peace with some of the paths I’ve walked down. I’ve talked about how many doors have been shut, and some of the windows just haven’t opened.

But sometimes I’m not okay with it. Sometimes I am just very frustrated with being disabled. I long to get a job, I long to work, I long to do something more with my life than typing on a keyboard or staring at a square device in my hand. It’s hard to see my friends and whatnot working jobs when I know it’s out of reach for me right now.

I try to accept it. I try to say I’m okay with being disabled. And, you know, for the most part I am. It’s the card I’ve been dealt, I’ve accepted it and made the most of it. But yet… sometimes it’s hard. Sometimes I wonder what my purpose is. Why I will be like this… I just find myself questioning WHY.

And I wish I had an answer to why I’m sometimes not okay.

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Child Abuse Awareness Month

April is child abuse awareness month. I don’t need to say in what ways I was abused, because in all reality, it doesn’t matter. I was abused. End of story. The details are for me to disclose when I want to, not for you to decide if I really was abused or not or if my parents “meant well”. I lived there. You didn’t. I am discussing various types of abuse here, so you might be able to figure stuff out based on this and previous blog posts. That’s okay. But I’m trying to keep this particular post vague in order to help people relate.

That said, here is a handy dandy list of NOT helpful things to say to me! Note, this may be different for other child abuse survivors. This is helpful to ME.

DO NOT SAY:

“Well, I was spanked and I turned out fine. Why aren’t you fine?” You didn’t live my life. Spanking is a very controversial topic, and I request that on this specific post you don’t debate it. I did not turn out fine. End of story. Don’t say that to this child abuse survivor, mmkay? (Seriously, do NOT turn this into a spanking debate. That is a firm boundary. I have a very strong opinion on it and others do, too. DO. NOT. DEBATE. THAT. HERE. AT. ALL. Any comments on Facebook about it will be swiftly deleted.)

“Oh, I’m sure it wasn’t that bad.” It was. You didn’t live it. The end.

“I’m sure your parents LOVE you!” They sure did a crappy job of proving it. Doesn’t help to hear that when I have PTSD.

“Well, my parents did XYZ to me, too, and I don’t have PTSD.” That’s nice. I do. I’m glad you had a different childhood than I did (seriously! that isn’t snarky!) but I have PTSD as a result of mine. It isn’t helpful for me to hear “well, I don’t have PTSD” because then my brain warps into bad places and it just isn’t good.

“Don’t you think they meant well?” Sure. Maybe they did. Maybe they didn’t. Doesn’t matter. I was abused.

“But all parents love their children.” Nope.

“They had their own “mental illnesses”. I have an alphabet soup of mental health bullcrap. I don’t abuse people. NEXT.

“That was over twenty years ago that XYZ happened. Why aren’t you over it?” Didn’t know my trauma had a deadline.

“I’m sorry that happened to you.” This is one I’m iffy on. I prefer the wording “I’m sorry someone did that to you” because it takes all the internalized blame off myself. Saying “that happened” makes it sound like it was something out of someone’s control. Someone had control. It wasn’t me. Someone did it to me. It didn’t just “happen”.

“Well, at least emotional abuse doesn’t leave scars.” I have no polite words for that one. And I’m trying to keep this post PG rated to make it more shareable. But… you know the whole “sticks and stones may break my bones, but words will never hurt me?” I believe that’s bullcrap. I also believe there is no form of abuse without an emotional counterpart because of how abuse plays with your very mind and innermost thoughts. So, there IS no ‘just’ emotional abuse. Emotional abuse is the very core OF abuse.

“Did you ask you ask them why they treated you that way?” Um, no? And get abused further? I was hurt once. Their side of the story? Yeah, they lost their right to that when they chose to abuse me. They don’t get to tell their story.

“Put yourself in their shoes.” No, wear our shoes. WHY do we only challenge people to wear the abusers shoes, but not the victim’s shoes? Ask yourself this question. Seriously, why? Why is it never “walk in the child’s shoes”?

“I don’t know how you turned out so normal.” Well, okay? Normal is only a video game difficulty setting… I’ve jokingly said it, but things I say in jest and things people say to me are two different things. I wince so hard at this one.

“But you denied xyz abuse for years! YOU’RE LYING!” No, I was trying to protect my abusers. It’s pretty common. I have psych records saying that even though I denied it, it was strongly suspected. But that shouldn’t even matter.

I am a child abuse survivor.

Do not say these things to me.